Reaching, searching really, waving my hands as if trying to grab the non existing— anything, I adjust my feet to stand firmer as I try to center my diminishing balance and walk further towards the square building above. Walking was hard but not too bad but open spaces with a path like this or dock I had trouble to reach end on, were quite a problem.
Finally in front of a glass wall, I looked for an Asian Institute among various businesses that line up one next to another. I continue my path around the building and find behind a tinted door, hiding a room with walls of standing bottles of herbal and homeopathic supplements that a counter separates from the non staff. The writing on the bottles was perhaps the only Asian identifier for this so called institute but still full of hope I thought nothing and sat down inside.
I was here once before and the seemingly Jewish white girl stuck needles into my legs pretending to be acupuncture and I waited for same girl to do that again as I hoped for some, any, improvement. This girl told me she was told after hallucinations and drowsiness from drugs handed out like expensive candy that she had Lyme instead of MS. Well, little did I know then. Not being able to really help either, the two were often close and interchangeable. But regardless, she came out and I got up. “Hi,” I announced and smiled. “Hi,” she said, “ready?” “I am,” I happily answered as I followed her, she turning around periodically “you’re walking better” she said, obviously a lie fitting whatever ailment you were there for but I nodded and we kept walking.
In the exam room, I proceeded to lie down on the bed, looking up, she left, returning with a guy with dreadlocks and a smile happily declaring that he too loves and studied philosophy. “Oh,” I said and inquired who he liked. “Lao Tzu,” he answered. Well, me too but too obvious but no matter, he proceeded to put needles in my legs as the senior student of acupuncture. The girl watched as one after another needles decorated my legs. “Am I supposed to feel anything?,” I ask, to which I heard “not right away,” ok. Another session filled with smalltalk and messages of hope to feel better. What a scam I see now but not then.
The idea itself still inspired my young self and the semi playful absurdity just made me discount that place so before I knew it I was getting pressure on my meridians and back rub with oil somewhere else. Dr. Chen’s clinic seemed much more serious. The needles he pushed in were just irritating and as he connected the electric pulse, sometimes painful. I breathed and hoped that all this was worthwhile as the sessions continued, there was no smalltalk as I was not sure he spoke much english and this office was in a plaza containing a variety of Asian establishments. Dr. Chen had a story of being a doctor in China, at a hospital no less. Well, I never knew why they left or if even real. He was not M.D., which I learned later was not a protection but only somewhat more discouraging when scammed. Indeed the “nurses” were no.t formally trained either. Now I see, neither was the practice but of coure perception was all that was needed, I am not sure anybody was really helped but some believed they were better and at the end it is what mattered.
Another pop culture fantasy that “evil” government keeps blocking and sick people’s’ hopes crushed forcing them to ruminate and dream of salvation, paying anything to be free. Stem cells, the key to life that cures all. Alas this was not/is not the future of science fiction and even if mattered, we cannot kill embryos, well how about one’s own cells. Lovely. Well, I had it and really, there is no need and we are better of than false hope. Besides large financial strain, the so called “doctors” were just as eager to lie and hold their fists up in hope…hope…
Television lies prompted me to arrange a trip to Germany and talk with someone who had it done gave hope. Of course the caliber of individual and difference of disease I know now leaves much to be desired. After 9 hours, a movie and bad meal we were there. We met our orange vested driver at the airport, and although by this point I could not get up, sitting with our bags on the seats by baggage claim I watched in horror. Screaming would be pointless as airport noise would no doubt eclipse it so I waited for him to turn to waive. My mother came then and I pointed him out. We proceeded to the garage and got into his car. “You can walk some so we good.” My 30min before rest was now 5 but indeed no wheelchair van was needed which the company was happy to provide.
Soon we were in our hotel and next day was the first pick up. We faced a park and a very nice street, as well as some restaurants.
Taken to a very old hospital with several reconstructed levels that had both Ikea furniture and iMacs. Really? The waiting area was full, full of misery. As I sat down in the orange plastic seat, the girl in a wheelchair in front of me was crying, surely for a life nevermore. She was in bad accident and said nothing, her tattooed mother surely could not expect such a turn and in a desperate attempt brought her here. I am not sure the girl expected anything and in the end I am sure only disappointment was to be had. Certainly the shaking man sitting next to his wife, the silent child, all were doomed yet sliver of hope was sold to us all.
I got up and walked to the toilet before the meet with a doctor assigned to our cases. Although he had to deal with an Autistic child screaming. Lying in a stretcher, I assume he was being sedated as nothing else could be done. It was a second time he was there and upon questioning, the doctor commented that “sparks” of improvements were noticed. Sparks? See in E.U. healthcare is free for nationals but this was not approved nor healthcare… Anyway, my turn was next and as I returned from toilet and got up to walk into his office, the doctor, an Egyptian Anesthesiologist, named Aladdin Eisisi happily stated that I was not that bad. What was said to girl with severed spine I don’t know but they did pay and her struggle did not stop. I never saw her again but I can only hope something, anything stopped her suffering, I am sure this did not.
The extraction of my bone marrow was very painful although I was repeatedly told that it would not be. Of course people lie, have different tolerance besides for hope it did not matter, we could deal. I was encouraged by people not having it done and no real experience of it, thus a promise, realistically an empty promise but we all took it. I began to sweat ignoring the pain of a large syringe being shoved into my hip, deeper and deeper. The german chatter behind me was kind of vague and I was used to foreign tongues besides the sweating from the pain made my facemask moist, causing my breathing to be heavier. My agony seemed quelled when a glass with orange goo was shown to me.
Taken back to the hotel we ate at nearby restaurant and explored some. I held on to my mother as walking became difficult quite fast. I was a world traveler but now… We hired a car to drive us, so yes we saw much of Dusseldorf. At least something.
A woman who was said to be a neurosurgeon, who incidentally was the one doing the extraction, brought a syringe with my name, asked me to lay on my side, lifted my shirt and injected my spine. That’s it, recovery, consisting of few hours in bed having small talk with the CEO as Aladdin came with seemingly great although pointless news that my injection had 15000000 stem cells. He held his fist, “we hope.” We sure did, we sure did.”
Perhaps scams are a way of life but the sick, often very sick, have been tortured so much and the least appropriate people to rip their hopes apart are physicians who placed HELP FOR OTHERS as their goal. Indeed self interest is paramount but…
Aladdin did call me 3 months later but I had nothing and no I did not have more energy which he specifically asked. At 4 months there were minimal improvements in walking but short lived and not at all worth it.
Chronic Cerebrospinal Venous Insufficiency swept our world like a brush fire. Excuse me as I wipe tear away. Early days of Facebook promoted a near panic, pressure became so vast to do something. Mainstream was fiercely and rightfully against the Italian theory. But the theory itself is that blood unable to drain properly eats at brain thus is effectively the cause. Angio or rather Venoplasty, a simple procedure, was the fix. Venoplasty same as Angioplasty but in veins, a balloon is dilated making vessel wider thus allowing flow. Simple solution to a very complex problem. Collaterals, or flow around were formed as often are in chronic situations but not enough flow was present. Thus iron in blood destroyed brain, hmmmm.
The founder had a story and had own problems, his wife had what we have but not as severe, he began to dig old literature identifying particular veins of focus. It did seem to work, people were lining up to have the “Liberation” procedure. Realistically blood was given up on decades before but blame easy and so much money seemed on the edge that opposition was even easier. Heroes of the movement began to emerge showing what seemed like caring. Waiting lists for those doctors willing to do it were often 1 year, this is it. “We appreciate the courage,” statements like those were so powerful, like a warm blanket of care among cold and distant doctors. Of course all was fake but I see that now.
I too wrote letters, tried to convince doctors to do it and ultimately had it, 5 times, with 3 doctors who ended up less than professional but did what I wanted. The first was accidental and the magic word “stenosis” rang through OR , wow it is real. Truth be told I did feel better after each but one but never lasted and “sparks,” always appear, just need to hold on, thats the problem.
After the first , who refused to even acknowledge me, I did find a surgeon who just wanted to help and the theory made sense but he was not a neurologist and really the theory was too simple. I had 2nd done precisely that proved to last longest. Restenosis was common and stents were done at own discretion of performing doctor. He was told to stop as many were and his dwindling interest was finally killed by conference with founder and with our hero. The 3rd and 4th were done by someone that did not care but did it and to me that was all that was needed. No I was not cured but insurance paid.
The last was my crown jewel that ended up being the worst. The perception did not fit this man, it was all marketing. Supposed empathy was housed in a semi ghetto office with no real hope or any kind of warmth. The assistant wreaked of smoke and nurses fat, so not quite encouraging and barrage of language deconstructing the best work I had by someone this man never became was irritating. See this man, a hero , who I saw years later beating a dead horse, wanted to be a surgeon but even my surgeon saw the bullshit and gave up.
We think after Enlightenment human beings would be different but no. Usury very real and sick easiest to take advantage of. Not only was the hero uneventful, it was cash as his employment was terminated and CCSVI became something else, not related to me or anything really.
I woke up from a nightmare in cold sweat; I had been tossing and turning for some time, I assumed, since my clothes were in disarray. How long was I asleep, I wondered? It was white outside and not a single sign of civilization as I have come to know it. Just forests covered in snow, endless forests passing by my face. Where am I going, I thought to myself. For some strange reason I could not remember. I straightened out my clothes and made my way out of the cabin into a narrow hallway with polished wooden panels on the sides. I wanted to find someone and ask them where the train is going, but there was no one in the hallway. I knocked on a door yet no one answered. I knocked on a few more, yet no one answered still. A small panic began to boil inside me, as the thoughts of being alone on this train clouded my mind. I started banging on the doors violently with my fists and screaming, although knowing that the strength and loudness would not change the result. After few doors of banging I started opening them only to find the cabins suspiciously missing occupants and any luggage or other items confirming existence of an occupant. Walking from wagon to wagon, I finally reached the restaurant. I chose a table and sat down by the window and attempted to try to arrange my thoughts and figure this situation out. I looked out the window onto the whiteness and the forests. I could almost hear the pounding of my heart in my ears. I did not know what to do or think at this point and looking out the window, I saw my own blank expression staring back at me.
A few minutes later a man in a red vest walked up to me to ask what I wanted, I was so relieved I nearly got up and hugged him. I ordered a coffee and asked the man to join me. Since there was no one else in the restaurant he agreed and brought himself a cup of coffee as well as for me. After an uncomfortable glances at each other, I asked him where the train was headed, to which he smiled and asked where I thought it was headed. I shook my head and looking down into my coffee; I told him that I did not know. Looking a bit confused, he told me, in a serious tone “it is not important where it is going, rather from where it is going.” What a strange answer I thought, and quickly followed up with another question.
“Where are we coming from?” I asked and looked up at him.
“You do not remember anything?” he asked me, with a somewhat concerned look on his face.
I thought about my answer and told him that “I remember I just woke up and walked out of my cabin and walked down the hallway. I knocked on many doors and nobody answered. I wanted to know where we are going. I was beginning to be scared that I am alone on this train and then you came and asked me what I wanted to order. I don’t know how I got on this train, and I don’t know why. Last thing I remember is being in Amsterdam, looking out of my window onto the boats passing in the canal.”
He looked puzzled and said in a calm yet assertive voice, “This train left over two weeks ago. This was the last train out” he looked down took a breath and shook his head, “there is nothing left” he said.
At this point I began to doubt my sanity, what could be happening, how could I not remember two weeks of my life, what did it mean that there is nothing left, why is this the last train, I had more questions now than ever. Instead of asking him all these questions however, I asked him “what year is this?” He looked out the window then back at me, “Nobody knows what year it is” then he started to get up. I reached over the table and grabbed his arm stopping him and asked “what do you mean nobody knows, what happened, where are other passengers?” He looked straight at me and said “You are the only passenger” and walked away.
I sat there in the booth of this empty restaurant and tried to make sense of the conversation, thinking that maybe I should have stopped him again and got some answers out of him, but his last words hit me so hard I could barely move. I got up and found my way back to my cabin, where I dug through my things to find some answers. I found a journal so I quickly began reading the entries. The pages contained my thoughts and feelings about my life, my job, and my relationship with Kate, a name that kept repeating throughout the pages. We were together once, but I had a hard time remembering her. The name was so close to me, yet I could not remember who she was. I tried hard to dig in my memory and yet nothing came about except being in Amsterdam. She undoubtedly was with me there, yet I could not picture her face. What happened, what happened to my memory? Why am I the only passenger? I kept looking through the journal reading through the various entries. Towards the later entries I found an increasing worry in my tone, as though expecting something to happen. The pages contained descriptions of fights in the streets and police sirens filling the night air, a signature occurrence of large metropolis, but not this city. Unfortunately, I did not describe what the actual circumstances that had led me to this train.
My next trip down the hallway took me past the restaurant; I thought maybe if I could get to the conductor or another member of staff I could get more answers. We seemed to be speeding up, the forests outside turned into a blur and yet there still was no sign of civilization. The hallway after hallway seemed to never end. Maybe this is a dream and I am in control of this train; maybe I could stop it if I think about it. My attempt at this exercise did not produce any result and I continued walking down the hallways, one after next. Suddenly a girl appeared in the hallway at a distance, I ran to her to see who she was and talk to her. I came up to her out of breath and taking a moment to breathe bent over in front of her, I began to doubt her existence. Yet, she did not doubt mine and quickly said “Are you okay?” I nodded and got a question out in between breaths, “are you a passenger on this train?” “yes” she answered with a curious tone. “what’s your name?” I asked her. She smiled and said in a soft voice, “I’m Katya, what’s yours?” Did I know my name I wondered briefly but not wasting time I asked “Where is this train going?” She giggled and then in a more serious voice said “It does not matter, what matters is from what it is going?” Oddly this was what the waiter at the restaurant said earlier, yet he said where and she said what. The significance of her name had not yet registered in my head being that her name is the short of Katerina. “What’s happening?” I asked her. I never felt so confused or helpless. At moments like this you realize how important memory really is, how it serves as grounding for reality. But she did not answer; instead she asked if I wanted to take a walk with her, to which I agreed.
We walked down the hallway together, I told her my last memories and that I couldn’t remember anything else. To that she said that maybe it was for the best that I did not remember, maybe it was a space in time I should not have remembered. I told her that the waiter said I was the only one on the train. She laughed again, smiled and said, “well, obviously not.” We both laughed and continued walking down the corridor towards the restaurant wagon.
“You know, I saw a man at the restaurant, a waiter.” I told her.
“Oh, right.” she curiously remarked “so we are not alone on this train.”
“Well, the man told me that I am alone on this train and that there is
“Hmm, well maybe he was trying to scare you.”
“Maybe, but why?” I protested. “He seemed serious to me.”
“Lets go and see this man.” She said in an almost challenging tone.
We got to the restaurant wagon and sat down at a table near a window. I looked out the window at the still white scenery and asked her, “Doesn’t it strike you as odd that we are the only people in this restaurant?” “It does, its kind of creepy, but there has to be a few more people on this train. This can’t be it.” She said in a way that was intended to convince me, but it didn’t. The absence of the waiter endorsed my theory. “We should go through the rest of the train and see if we can find anyone.” I suggested. “Let’s go” she happily complied. We got up and started walking down the corridor, banging on every door, opening the doors, checking the toilets. We could not find anybody and by the tenth door I could see that Katerina was surprised and curious slowly realizing the fact that we in fact were alone here.
She was not as desperate as I was looking for others however and that intrigued, and worried me. “Do you remember getting on this train?” I asked her to which she replied that she had woken up on the train. “I only remember the flood” she added. “Flood? What flood?” I did not know what to make of this, could I remember a flood I wondered briefly. “You don’t remember? Well, let’s go to the end of the train to make sure there is no one and I will tell you.”
We walked to the end of the train and then to the other end and there was nobody in the train but us, the train was running itself it seemed since there was nobody driving it. Moreover there were no controls to stop or control the train, except a computer screen, which had words in various languages flashing on it. Japanese, Arabic, Thai, those were the languages I recognized but could not read. How could I have seen the man in the restaurant, I could not understand. I was originally going to offer to go back to my cabin but quickly realized that it doesn’t matter. So I opened the next door that was on our way and walked inside. We sat facing each other in this cabin with the window to our side and the little table in between us. “You mentioned a flood, what happened?” I asked her, looking right at her. She was looking down, and uttered a question. “Do you remember the riots?” she asked. “I don’t but there is a sense of worry in my journal and mention of a tense feeling in the city.” She nodded, “yea, it started months before. A ship carrying industrial waste came into the port of Amsterdam and the authorities did not allow it to unload. This was not the first time this happened, but the other times the ships ended up going to Africa and dumping their cargo there. This time the ship was leaking and the crew was terribly ill. By the time the bureaucracy worked its magic and ship was organized to go to Africa, the crew was dead. Many people living close to the port were also sick.” She sighed. “The government was quick in its action to try to contain the ship and move it out of the port, but there were growing numbers of sick” As she told the story glimpses came back to me. “I remembered the news buzzing about this issue.” I commented. She nodded and continued, “Although an attempt to help the sick was made on a large scale, the medical community could not figure out what was wrong with people and thus they just kept dying. Underground conspiracy began to spread that the ship in fact held a biological weapon that was not contained properly. This theory spread faster than the illness and soon various organizations were protesting and rioting in Amsterdam and The Hague, demanding answers from the government. The government had no answers, either because they themselves did not know, or because they were hiding something.” I kept nodding as she told me this story and bits of memories began to form a whole as though a puzzle..
“Although this was by no means the plague, which the city lived through at high cost in life, it was a highly strange and frightening outbreak. Luckily for the rest of us, it was not contagious, but it did not matter at that point. The riots got more and more violent and soon enough small terror attacks began to take place in random places. Garbage can explosions, transportation sabotage, defacement of government buildings and demand for explanation from the authorities, who maintained that it was the leak of waste from the ship and they were doing what they could to clean up and get the ship out. By this point, the port was shutdown and secured by military, once again fueling the conspiracy theory. The situation was bad, but this was not the worst. About three months into this saga there was a terrorist attack on the world famous dikes, it was a well organized, large scale attack that flooded a lot of the country. The sirens in Amsterdam rang at six in the morning by ten the canals were gone and water was up to the second story. I was in a boat with a friend at the time and we decided to try to get out by boat, which may have been a good idea if we were not in a city where a lot of people had boats and the same bright idea to get out in that way. It was still dark out and we had no power anymore, people everywhere were screaming, there were helicopters with search lights all over. Although most people evacuated, a lot of people died. I remember looking out the window and listening to the radio in shock. I don’t think anyone expected it this bad. You still don’t remember any of it at all? ”
While she was telling me this story my memory of the flood started coming back to me. I did remember the sirens and I do remember rushing out of my apartment, the canal water was already overflowing and the sound of police and public in panic already filled the streets. It was useless to ride a bike just because there was already water on the roads next to the canals and there were people filling the streets as though Queen’s Day. Nobody’s mobile worked anymore, and there was already no electricity. I ran to Kate’s apartment, keeping close to the walls of the buildings in fear of stepping into the now invisible canal. I pushed the intercom button to her apartment but it did not work anymore. I scaled the wall to the first floor window of her apartment and broke it to get in, she was gone however. At this point I knew that I would never find her like this, but I looked for her anyway. Soon enough the water was up to my knees and I knew I had to get out. I tried to get to Centraal Station, since the word among the people was that the boats were being used to evacuate people still.
However, by the time I got to the station there were armed militia taking bribes for who can get on the boats and there would be an occasional shootout between them and the police. The military took control of the station soon enough and the evacuations became more systematic, with military vessels moving people as well. I don’t remember if I got on the boat or not, but how I ended up on this train was still a mystery since my last memory had the railways already flooded.
“Do you remember how you got out?” I asked her.
“No, I woke up here.”
I was living in Amsterdam, in search of something else, something more. I came to visit on my tour of Europe and ended up staying. My life in Amsterdam was pleasant and interesting. I found a tiny apartment in the Jordaan district and got a job at a coffeeshop selling coffee and hash shakes to tourists. This job allowed me to collect stories from people from all over the world and to add to my inspiration thirst, I wandered the city searching for echoes of past within the present.
I often sat on my window sill looking out onto the canal my window faced and wondered about the magic of this city, with all its inadequacies and difficulties, there was definitely something about this city. I remember this particular day in the summer; I was sitting there with my cup of tea and a joint looking out my open window at the magical downpour falling into the canal. The sky turned completely white, yet the colors of the trees had become clearer and more alive, as if through a polarized lens. The thunder above gave it a special auditory feeling, a full sensory experience. The rain was strong and constant, washing over everything in its path, this was truly wonderful. The air was suddenly crisp and fresh after the days of intense heat. Everything suddenly felt alive, in motion. I don’t know if it was the weed or if this experience truly was magical. I sat there after the rain had stopped and my cup of tea was empty and stared out into the emerging people who were hiding from the rain. I still heard bit of thundering as if in the background, yet this was also mixed with the sounds of the city as if awakening after sleep. These kinds of moments were not unusual in this place, I often found myself amazed by the experiences that crept on me here.
I met Kate the first day I came here, I stopped by a coffeeshop to pick up some grass and we crossed eyes briefly. Something forced me to go over to her and start a conversation. We spent days together after that conversation, wandering around this city, going to restaurants, having picnics in the various parks, talking in seemingly endless conversations about everything. She told me about her life and I told her about mine, everything flowed so naturally with her, I did not have to hide anything or dress up the truth for her, something I have done for others. She had lived in this city for two years and had a small apartment not far from what would become my favorite Chinese restaurant. In retrospect I should have just tried to live with her, but I wanted my own place. So I found a nice and cozy place in the Jordaan district with the rare and very affordable pleasure of facing the canal. Kate often stayed with me there, but kept her own place. Looking back it was probably my fault of not letting her in completely, but she had her own life as well.
We decided to move in together shortly before the event that changed our lives forever took place. We viewed several apartments but had not found the one we wanted. When the sirens rang, all I wanted to do was hold her and go through this together, but I couldn’t find her. I remember moving towards the station while at the same time thinking I need to find her. My logical reasoning that in this panic and chaos it would be impossible to find one person overcame my emotional desire to find her. I looked for her through the people at the station but could not see her. The walls of the station were covered in spray paint logos of the group that was responsible and various messages and misguided quotes of Nietzsche, Marx and other philosophers on the walls. This was a revolution, a desire for destruction rather than life in an organized chaos and control. This was a violent protest against violence. I couldn’t make sense of it, but it did not matter anymore. I never found Kate, I didn’t know if she got out or died, but I knew that I would probably never see her again.
We sat there in front of each other in silence really, looking out the window and thinking about everything she has just told me and my own returning memories. The image of Kate was in front of me in the reflection of the glass as though she was looking at me. I was both happy and miserable having remembered her. I didn’t know what happened to her, but then again I didn’t know what happened to me either. How I ended up sitting in this empty train alone. I kept looking out the window and saw an approaching city in the distance. As I saw it, I screamed out to Katya, “look its something, it’s a city.” She turned and looked and stood up with her face almost pressed against the window. We looked as the train approached this city and felt an immediate relief as though achieving some sort of progress. We left the cabin and walked to the doors of the train, looking through those windows at the city we have now entered, the train was moving slower, but not slow enough to stop. I saw the approaching station and people standing at the station waiting for their trains, activity and life. The city and the people seemed to be Asian, how could we have gotten to Asia from Amsterdam I asked Katya. She did not respond and so I turned to her to ask again, but she was gone. I yelled out “Katya!” over and over, but there was no response. I went back to the cabin we were occupying before, but she was not there. What could have happened to her I thought and walked through both cabins directly to my left and right. She was gone it seemed. I immediately began running through the cabins, opening doors and looking for her, yelling her name, but she in fact was gone.
I got to another door and looked out the window again, the train had stopped but there was no button to open the doors, and the people on the platform did not seem to move at all to board this train. I could not get off. I beat on the doors with my fists and kicked them repeatedly. I grabbed the fire extinguisher which was hanging not far from me and hit the glass with it, only to have it bounce off. Not being able to open these doors I started screaming and begging someone to notice me but they could not see me. The train began to slowly move again and I was crying and screaming as it touched off, still beating my fists against the glass. The city was Tokyo as I saw later by the familiar scenery that the train passed upon leaving the station. Was this a tease? Why can’t I get off, why am I alone on this train, Katya was not real as I at first suspected. I stopped with the questions being that there was no point to any resolution. Tokyo had been my favorite city and the fact that the train stopped at the station but would not let me off was incredibly painful. My memory however was coming back and that gave me some relief. I never made it to the boats in Centraal Station I remembered clearly all of a sudden. I got upon the roof of the Centraal Station with others and we sat atop this station almost in a calm state. The guy sitting next to me was Yob, a Dutch guy of late twenties. He spoke Dutch to me at first which I could only understand partially and speak even less, but luckily for me, he spoke fluent English as most Amsterdammers did. He asked my name and where I was from but not a word about the disaster. His clothes, as mine, were completely wet, and his shirt torn, he had some blood on his arm, but nothing overly serious. He pulled out a ziplock bag from his jacket pocket and took tobacco rolling papers and some pot he had in there. “Good thing its water proof,” he said and laughed, I laughed as well. He rolled a joint and lit it. “You know, they may not come back for us” he said and turned to me, passing me the joint. “There are a lot of us up here, come on, they will come back of course,” I responded after taking a hit. The panic by now had gotten quieter and all the boats were gone, the water had gotten quite high and helicopters had moved to search other parts of the city.
I looked out the window again and saw another approaching city, with a tower sticking up over the skyline. Paris, I thought to myself. The train once again stopped at the station, but I already didn’t panic but calmly tried to open the door or signal people on the platform. Nobody could see me, or probably even this fucking train. I found a cabin and I sat down by the window. Train stopped at Madrid, Barcelona, London, Berlin. It did not make any logical sense anymore, we could have stopped at the moon and it would have made no difference. I was stuck on this train and I would experience all the places I enjoyed traveling to just because. It didn’t matter anymore; I was beginning to realize this situation. I died that day in Amsterdam. This is my Hell.
I sat there with Yob and smoked the joint. He told me that he was often afraid of this happening to the city of his birth. “It was always just a matter of time,” he said “and now this water is probably infected with the shit off the ship.” I hadn’t thought of that before but now it seemed logical that that is in fact an added risk to anyone who was in this water. “I wonder if my girlfriend got out,” I said while taking another hit. Yob nodded, “Ya, my girlfriend died, she was electrocuted in her apartment, she lived on the ground floor.” “Holy shit, I’m so sorry,” I said. Yob nodded again, “ya well, what can you do she was not the only one who died, a lot of people died here today.” I had nothing to add, passing the joint back to him, I thought if Kate made it, if I am going to make it.
We sat there for hours, couple other people had joined us and we were all sitting in a group now, talking about a variety of things, anything except our current condition. We smoked a lot and told each other of our stories. It got dark soon, and the rescue had not yet come for us. The helicopters circled but there were people on every roof top and now and then a boat would come to get people off. The city was not yet dead or abandoned but Yob seemed to have given up already, and laid there with a mysteriously calm look on his face. “Do you ever wonder about what it means to be alive?” Yob asked me. “I guess its to learn and experience,” I answered him. “It is more about the possibilities, potentialities,” he said. I thought about his statement and nodded in acknowledgement. “Maybe they will come for us, maybe they won’t, our possibilities in this city are over, “ Yob said and sighed. “I guess so,” I said. “I guess so.”
Dreamers often find themselves disappointed but where the disappointment is born is a question that I, like many others, was understanding in the wrong perspective. We all indulge in thinking of what it would be like if our dreams were realized but that is fantasy not actual life dreams. So what are life dreams then? We hear over and over that if one wants something bad enough, one can have it and it is true. All the popular culture campaigns to push things like attitude and positive thinking only minimizes the power of real dreams and just like most of the garbage we are fed, makes us believe that thinking makes things happen. Just thinking is not the key, you have to believe it, you have to feel it. Dreams are within, the subconscious so to speak, in the spirit of Sigmund Freud’s shattering realization. What I professed as my dreams and desires were the very superficial level of what I thought I wanted or better yet, it was what I was thinking was expected of me to want. It was what I expected from myself at a conscious state of mind but beneath was more. Dream of love, art, adventure and inspiration.
The desires I had as a teen were no different than the people with whom I associated. Perhaps to fit in, perhaps to try to bridge the differences that I felt were responsible for my, largely, solitary existence. Most people I knew had simple dreams of money, power, success. Of course maybe there was more but seeing the progression of their lives, the difference between us grew larger and further apart. It is not that I felt special, I just felt different.
Surely these were common western dreams and I played along. I did what was generally expected of my age; school, outdoor sports and exploration of one sort or another. I loved to explore areas that were not really known to me and the objectively simpler times left a lot to be curious about. School came very easy for me, however, I never excelled, rather just did well. There was logic behind this kind of behavior and simply put that logic was to not stick out. Thus, my grades were good enough to stay in the honors program, that I was put in via a phone call from my mother, but nothing spectacular to be worshiped by the faculty. In fact, kids that were these so-called teachers’ pets tended to make me ill. I found their demeanor to be inauthentic and attention seeking. Truth was, I did not care that much, I just wanted things to continue on track to the destiny that awaited me. The years passed and college proved to be the place where I discovered my true interests, and thus my new mission.
Fate, it seems, had a plan of its own and my life, as I knew it anyway, ended few years later, the irony of which I could not and still cannot make peace with. The peak of my life’s blossom had engulfed me and for once in a long time I felt content and satisfied. I was very excited to be accepted into a four hundred year old university, in an ancient city surrounded by culture, beauty and sophisticated personality. Although I had been there before, this time I would actually live and attend school there. I would only have several months to really enjoy it, but I did not know this yet.
I hurt my knee badly dragging my ridiculously heavy suitcase on the first day of my journey. I had this injury before on the other leg during my previous travels, but it did not devastate me then and I would not let it slow me down now. Knowing how painful it had been to climb the small and steep stairs of old Europe, the only thing I wished for in my new home city was a ground floor hotel room, which was granted to me in a presentation of a room slightly larger than a walk-in closet, but containing my own, luxurious, personal bathroom. The night air, flowing in through a window cracked at the top, made the curtains dance and the sheets on the bed move as though alive. I undressed, took a shower and laid down in the cool bed with my book. The single serving cup and kettle were prepped and ready, the kettle, or water cooker, was slightly shaking as it boiled the water for the evening cup of tea.
I woke up in the morning, got dressed and left. The air was fresh and cool for the walk through the city to the wood and glass building in the middle of the University district where the meeting was scheduled for new students. The pain in my knee was not bothering me and I could follow the numerous excursion through the brick city with my group of foreigners and our two Dutch guides. We walked through the Red Light District, and I heard the moans and groans of the American female students, but since I had seen this before in a much cruder presentation, it was nothing new for me. I guess nothing really shocks or impresses me, but I enjoyed our time exploring the city. After several hours of meandering around the city, the group followed the path towards the largest park in the city, Vondelpark. Our Dutch guides left us to conversation with each other and in a short while returned with a shopping cart full of cheese and cheap wine to celebrate our arrival. We stayed till dark and sparking conversations with everyone at one point or another I left the park with a new friend, walked her to her tram and then walked to my nearby hotel. I finally felt alive, as though I was within life, not just an observer. How simple a day turned my self perception upside down.
The next morning began as the first one did with a walk to the meeting point for breakfast followed by an introduction and speech at a seventeenth century church standing in a commanding spot with the Singel canal and tram tracks weaving around one side of it. While listening to someone affiliated with the University speak about the city and the country. I kept trying to understand if this space was really a church as this whole situation seemed strange to me. Looking around at the archetypes of power and divine judgment that could have only been in a church I was sure that this had to be a church, but why were we here? My curiosity was soon satisfied, when it was explained that this in fact was a Lutheran church, but due to lack of attendance was taken over by the city and then by the University as an auditorium in the early part of the twentieth century. I found this bizarrely appropriate and, to my delight, discovered several other churches that were converted to social venues of one sort or another. The lessons in pronunciation and Dutch culture were only epitomized by the enlightening explanation of drinking praxis. The speech continued and, as customary, was followed by wine and cheese in a reception hall inside this ancient house of God.
Determined to change my personality from the quiet, introvert that I was, I approached a girl that I had met earlier, Anca, and soon left the reception with her to wander around the city together. Anca was a beautiful twenty-three year old exchange student from Bucharest, she spoke a variety of languages and was studying economics. With our glasses of wine, we fed each other cheese. I was drunk but not due to wine, due to her. I was infatuated as she saw her friend and stepped away to chat. I felt a little lost holding my glass of wine while she spoke to a friend in some language. She looked at me several times and finally grabbed me by my shirt and pulled me close, put her arm around my neck and we left with my arm around her waist.
We walked around the city talking about anything and everything. The city did not disappoint with its gifts of beauty and we soon found ourselves licking ice cream while sitting on a bench watching boats pass on the canal we faced. Seeing this place with someone else was different, we pointed things out to each other and enjoyed our stroll. For me this was a magical experience that stayed with me ever since. This was a dream for me. Maybe the movies or books or all of it had formed the possibility of this and now I was living it. We returned to the Dam when it was already dark. Saddened she stood in front of the tram tracks as if waiting for me to kiss her or at least do something. I was frozen. Her #2 tram came and she got on. We looked at each other through the window and the magic was over. I am not sure if it was anything as meaningful for her but I liked her a lot and perhaps my insecurity served to limit our interaction to the few days we knew each other and that one day in particular, perhaps it was never meant to be anything more, but to me that day remained special.
The following morning my stubbornness had taken me on foot to find the property management office in a very obscure part of town. Yet my only accomplishment was stopping by my favorite coffeeshop in an attempt to self-medicate and relax. Completely stoned and somewhat confused, I continued on my path to find this office. The pot did not help the pain and in some ways only served to make it worse, although I did get a thorough explanation of how to roll a joint from a Dutch guy sitting next to me. As I continued, I realized that my knowledge of the city was still quite poor and only served to get me lost and miss my appointment to receive my keys. Standing there, far from anything I recognized, with my guide book opened to the page with a map and my leg in excruciating pain I suddenly saw a bald man on the street approaching. In perfect English the man asked if I needed help and then gladly explained where I was and how to get back. I guess my somewhat panicked look aroused a sense of pity in the man, perhaps he was just nice.
Limping back along the busy street named after some sort of prince, I just wanted a cab, yet in this city a taxi can only be had at a taxi stand or by phone. Thinking in my traveler ways, I figured that a hotel would help me, and as soon as I saw one, I crawled up the stairs and into a little hotel. Sadly, the concierge or whoever the man behind the counter was pretending to be, refused to call a cab for me and simply instructed me to keep walking towards central station, which was not far from there. Although at this point I could see the station, being in severe pain made even one hundred meters seem like eternity. After the agonizing stretch, I did reach the taxi stand where I got into a South Asian’s black Mercedez which I directed to the hotel containing my living quarters that I was supposed to vacate.
The man asked about my leg and offered to drive me to the hospital, but being someone who refused to see doctors unless I had no other choice, I declined. To my extreme disappointment, my tiny room was already given to someone else and my only salvation for that night would be a room on the very top of the building. Access to this room was via very small Dutch stairs, movement through which was a nightmare of a sort I had never experienced before, but I got to the room, into a hot shower and cool bed where I cried and wished I had some Vicodin.
I had been in the city three days and I was already in pain and behind schedule. I managed to stay positive, although I was freaking out. I did collect my keys on the next day and got a cab to move into my high ceiling room on the Prinsengracht canal in the center of the city. My adventure was beginning and I was suddenly walking around the city with minimal notice of my pain and unmatched enthusiasm of my new found experience. The thought of Anca haunted me, but that moment was gone and neither of us existed in the same way anymore. It was possible, the loneliness I spent thinking that there was something wrong with me proved to be incorrect. I was now living what I thought was a fantasy. I had finally found what I was looking for. I had finally found myself.
Part 1 – Soviet Union
Cool Summer Evenings
I had been a child that was neither happy nor troubled growing up in the still seemingly innocent 1980s of Soviet Union. My life had its ups and downs, but overall it was what seemed to me as normal. I wished I had more friends, I wished I was taller, I wished I didn’t have poor vision, which during childhood was coupled with a lazy eye that required a pirate patch on one of my eyes for hours at a time. I envied the presence of fathers in others’ lives but I cannot say that it devastated me. Friends, I didn’t have many friends in the city, although I had a group of friends during the summers on our dacha. A dacha was a summer home somewhere outside the city, which only the people with some sort of connections were able to have. Few things seemed to be about money at that time. It was always who you knew and who knew you. I guess that is still the primary way of maneuvering through life anywhere in the world but money was not even an option as it is now. A Russian institution and status symbol, our dacha was really a simple house within a development of homes surrounded by forests, where people came to retreat from the hassles of city life.
Although the development was surrounded by a fence, entry on foot was possible through the smaller gate open during the day or through one of the forests adjacent to the property. The forests provided berries, mushrooms and exploration for the residents and kids of the community. The older kids always tried to scare us by showing us mines and weaponry they found in the forests. I suppose realistically it may have been war relics but having grown cynical early, I began to highly suspect it. The berries were always delicious though and were used in variety of cooking while at the dacha. Since residents often went into the forests, there was always a path, this was not only convenient, helping in avoidance of getting lost inside, but also safer as there were animals that would not have been seen otherwise. This was of course, a very mystical experience that I took for granted. The forests were, wild so to speak, nobody looked after it or messed with them. The mushrooms and berries that were collected, were collected by a few and by hand. It was collected for themselves and their families, not to package and sell as everything is now. We would spend hours in the forest only leaving when the sun had gone.
The house was built out of brick and wood, with the former serving as base and first floor and the later as accents, porch and second story. The inside had a wooden floor and walls in a vertical stripe created by the wooden planks. Simple, very simple. A metal spiral staircase was in the corner next to the entrance, allowing one person at a time to move between the floors. It is honestly difficult to gauge the size in retrospect, but the place was neither small nor excessively large, but I do not believe things like that really mattered, perhaps I was just naive in my innocent worldview.
By the time the sun had left and the night had come most residents proceeded on their nightly walks. Walks around the dirt ring road surrounding the development was often the route of evening strolls for the residents. Their children, hovering around in packs, would often be mounted on their bikes like cavalry marching towards their conquest of innocence and happiness. The cool air filled the lungs and upon return to the respective homes, residents would spend the rest of the evening with a cup of evening tea, a book, and a good movie or a game of chess by the fireplace. The crackling soothed the atmosphere and a cool bed awaited us.
Girls that I could only assume would have been my first romances, if I had a chance to grow up with them of course, lived near me and were always around in some way. My fancy was often focused on their mothers, but my first discoveries of the gender relationships indeed began at the dacha. Running naked in the rain would never again be an experience to be had, yet indeed it happened and that is just a memory now. Though of course the innocence of the situation blurred the reality, looking back now is somewhat sad yet somewhat satisfying. The experiences cannot be taken away, hence I sat down to write this story, the story of my experiences and realizations. Dacha was my favorite place all my early childhood, the true meaning of freedom and pure happiness, the joy of summer .
The days were spent outside on foot or bike and the nights were spent with open windows and often candle light. The vast majority of food was grown in the gardens surrounding the house, and along with potatoes, vegetables and herbs, roses of a variety of colors decorated the plots. This seemed so normal to me and I did not really understand what I had until I came to the United States. I suppose the outdoor bathroom was perhaps the epitome, indeed it was a bit crude and disgusting, but it did provide an element of natural living that is not likely to be reconstructed in the age of convenience. The bathroom was a wooden shack with a bench against the distant wall of the small square area. A hole was in the center of the bench and adorned by a soft rubber toilet seat. Although I never really saw it up close, there was a bucket underneath that hole that had to be cleared out from time to time. Somehow until I learned about that, I always thought there was a more logical solution.
Family friends and sometimes relatives came to visit us at the dacha. I usually enjoyed having guests, as I really enjoyed a lot of people around me. My grandfather’s friend Uncle Vassya was one of my favorite guests. Uncle Vassya was a Colonel in the KGB and a large man, yet having two daughters, he really saw a son in me. The nights often led to our wrestling matches in which we secured numbers written on papers to our shirts and proceeded to wrestle. Uncle Vassya was yet another male that I had identified with, something that would repeat throughout my childhood due to the void left by the accidental death of my father not long after my birth. Spending time with Uncle Vassya was amazing to me. Uncle Vassya came with his wife, a woman with long, dark hair, who I never really knew that well. I later learned that when my grandparents were leaving the union, Uncle Vassya was the same man who came to the airport in his military uniform to facilitate the bypass of inspectors checking immigrants leaving the empire. To me he was just a kind man with whom I wrestled but to others he was a man of power.
Television service outside the city was not extensive and if only six channels were received in Moscow, four or so were received at the dacha. However, everyone watched the same movie or tv shows in the evening, later to be discussed on walks. A variety of foreign soaps were often shown, with every one’s favorite show being of an Italian Police Detective, Inspector Catane. The show was frequently quoted and discussed, with children imitating the characters and playing different scenes. Sadly, thinking about this now only reinforces what Max Weber meant by Gemeinschaft, often translated as community. The German distinction highlighted the differences between Gemeinschaft and Gessellschaft, or community versus society. The latter of course was seen as colder and more alienated, thus perhaps I got to experience the difference in a very authentic purity. It was not that we did not know about remote controls or the existence of other entertainment mediums, we simply did not require it. The star filled sky and low light pollution created works of art at night that gave us all what we needed. Cool summer evenings, smell of wood burning in fireplaces. Sometimes, when meat on skewers were cooked over a fire, the smell of fresh meat saturated the air along with the smell of forests and serenity.
The Heart of the Evil Empire
Life in the city was dramatically different. I did not have many friends and the ones I did were limited to geographic proximity. Either while in school or a random interaction with a neighbor produced my entertainment and relationships. Russian city kids were often very rough and abrasive in personality, hence actually finding a person that was enjoyable to be around was something that was not always possible. I lacked the freedom of wide movement being a child and thus I longed for the summer to be free along with my group of friends. Still, exploration of the high-rise building and the surrounding area was fascinating and interesting.
The school was a building built many decades prior and I doubt it was built to be a school but that is what it had become. A large wooden staircase greeted one upon the entrance and a cloak room was to the right where coats, scarves and hats were left, unlocked mind you. Of course there was crime and theft but not at the school, not that I had noticed. There was no graffiti or any vandalism. There were no soda or snack machines, there were no drinking fountains. This was a place that was not meant to take care, it was meant to make an adult out of a child by means decided by figures of authority. The bathrooms on the floor of the third grade level were undoubtedly soaked in years of urine and carried a special smell requiring a trip to the older class men floor. Sometimes these trips resulted in some sort of unpleasant encounter with an elder, but the trip was generally planned to be quick and the proximity of bathrooms to stairs was a very nice thing. The property was large and ripe for investigation intertwined with creative endeavors in the construction of shelters out of twigs, sticks, umbrellas and other miscellaneous debris found outside. The trees in front of the school leading to the entrance, after the gates, were old and very tall, changing in foliage like clockwork. Seasons too would become something that I would have to let go living in my new environment.
The ride to school was on a busy bus along the Moscow River, followed by a short walk past the day care and pre-first I had attended and where I first fell in love with my teacher. We got to keep the same teacher from pre-first to third grade, furthermore the class stayed the same through that time. I left in the third grade and thus my memory is just of that, and her. I was fascinated with her since our first encounter, always insisting that she tuck me in at mandatory nap time in our drawers. We slept in a file cabinet of beds that pulled out in steps. Usually, getting the lowest bed, I always got the most attention from her. Although I would have rather spent all my time with her, when not asleep or in the middle of class, I played house with the female classmates, as I never cared for other boys.
The room was large with cubby holes against the wall leading to the exit, a kitchen was towards the back with a butch woman cooking substandard food that we all ate. The bedroom with the drawers was accessible from the classroom via double doors located in the center of the room and was only for our class. Immediately outside the classroom a hallway lined with windows on one side and lockers on the other were separated by a long bench parallel to the lockers. I clearly remember walking along that hallway with a patch over my left eye to fix my cross-eyed gaze. It was embarrassing, but in retrospect, I became dramatically more self conscious in America, as the kids were crueler.
I never truly understood why America hated us so much but at the same time I felt brainwashed too. When Ronald Reagan came to Moscow I remember being shocked that such a monster was allowed into the country. The lunch lady did not help the paranoia by stating clearly and without reservations that Reagan kills children. Sending shock through our small bodies, she scooped up borch out of her huge tub and filled each of our bowls. I asked my grandfather while watching the arrival on the news if Reagan really kills children. “No,” he said, “that is silly.” I remained very suspicious but did not learn more until I studied this lively man in college, within the Evil country. Wait that is how that man referred to my home but be that as it may.
I spent a lot of time with my grandparents, not only on the dacha, which was their place, but in the city as well. I saw my mother often, but she worked a lot and it would be some time before I began to live with her. I always liked being around older people, so hanging out with my mother’s friends was always pleasant for me. I enjoyed going to work with my mom and spending countless hours in the orchestra pit, watching the various plays being performed on stage. Although I did not give it as much credit then as I do now, it was quite amazing to be able to watch world class performances in such an unusual way. The actors would often wink or sign to me in some way and I would signal them in return. During intermission I would hang out in the cigarette smoke filled room and attempt to learn backgammon that a few musicians would surely be playing. Vodka was of course present as well and it is amazing to me that more musicians were not asleep when the show resumed, but then again, they were professionals.
The apartment where I lived with my mother was a studio facing River Moscow with the unfortunate sight of an industrial factory on the other bank. It had a large kitchen with brick pattered wallpaper and a couch which stood against the empty wall. The cabinets, sink, stove and fridge were all against the opposite wall and a window onto the river was on the far wall. The room appeared large, but in retrospect I don’t think it was, the large foyer and closet made the whole place seem bigger and eventually the living room was divided by a wall unit, and I got the corner for myself. I ventured to different floors and around the outside although something stopped me from going towards the river and I explored the other side. I never went far as the city scared me, this was not the dacha and I was just a little kid.
The summers were the climax of the year for me and besides the eventual stay at the dacha, towards the end of my Soviet life we traveled north. We took a train to Tallinn in the summers where my uncle would pick us up and drive us to Parnu on the sea. My family lived there in a wonderful town home about five minutes walk from the unspoiled beach. The sand was white and soft and the sea was shallow every time I went in, it would often take several minutes of walking to become completely submerged in the cool but not freezing water. I loved Parnu and would ride my bike all over the city. I never learned Estonian, more than a few words anyway, but Russian was not only spoken by everyone, it was mandatory as Estonia was still a republic in the union. The city was very quaint, clean, colorful and very pleasant. Many preferred the Black Sea yet even though I did go, the surrounding areas were far more interesting than the rocky beaches and warmer waters. The Baltic Sea became my love.
My first romantic infatuation with someone of an appropriate age was introduced to me as another guest temporarily staying, with her family, in the beloved town home. She was very pretty as was her mother. They both had dark eyes and dark long hair. The daughter, Lena, looked like her mother but was indeed very young and my attraction to her was based on beauty and her kindness. It is really impossible to gauge the direct reason for our mutual attraction during our innocent ages but it is still hard to pinpoint why some people just fit and one wants to be near them. The town home had a sauna in the basement. Fully converted and remodeled the sauna was ideally designed to fit the personality of a Scandinavian country. We ventured to the sauna on a daily basis and when I saw the pair of beautiful women I was hoping to have at least one of them in the sauna with me but instead I got three men during the evening of our first encounter. Indeed I thought that being so young no attention would really be paid and nudity would be a free gift but alas. I kept my underwear on and enjoyed the sauna while remaining disappointed. It is not that I wished to see nudity for the purposes of sexual satisfaction, I wanted to see something beautiful. Truth was I was not thinking in these ways. I later learned, to my disappointment, that the women went later and separately. I would not let her be away from me after that. We were together constantly. We kissed and played house, we explored together. We were inseparable but it was all so innocent, so honest. We were not broken by life and grown up relationships. At the end, the hard goodbye only linked us closer. We held each other and only separated by force through tears at the Tallinn train station. I would never see her again but learned that we were in fact distant relatives. It did not bother me one bit and I thought about her for years.
Part 2 – America
Those are girl’s shoes
The first major trauma of my life was the move to the United States. I found myself with my mother in a strange land where nobody spoke our language or understood our culture. Luckily in the early 90s when we arrived in U.S. the country was less aggressive and times were generally simpler. I was too young to really understand the absurdity of the situation and the donated clothes and toys seemed fine to me. I did not care about brands or price tags, I liked what I liked.
There was a system of volunteers within the temple who assisted new Jewish immigrants from our part of the world. Yet, few rushed to help us. We later learned that our comrades had worn the welcoming and mitzvah oriented volunteers’ nature thin. No good deed goes unpunished I guess. In any case, several people cautiously showed up. The local Jewish organization did provide some financial assistance and the few volunteers were quite helpful. Still, we were seen as animals that just emerged from our exotic land where bears roamed the streets and we had hardly an idea of what a car or television was. At least that is what many thought, but be that as it may we were now in this country and we had to adjust to the way things were. Many things were new, a lot of things were different and even more things were odd.
I was placed in a school with an e.s.o.l. program which was developed to help assist immigrants’ children to learn. Realistically, the program was not very well thought out and I sat in class dumbfounded, trying to figure out what this seemingly remedial education was designed to do. Truth was that the class was overwhelmingly full of Hispanics who had arrived not weeks or months earlier but years. I did not know this until, contrary to opinions of authority, I learned to speak English fluently and quickly. I will not claim to be some sort of a genius but rather just young. If only such potential remained when people age, but that was the secret. In six months time, I spoke better English than most people born here but regardless, the school was very far and the five minute walk to the bus stop was only the beginning of the long journey. The bus picked me up and the drive included the highway to get to the school. The concept of a school bus was new to me, but the experience did not impress me. The somewhat scummy atmosphere ripe for fights with other little morons produced a feeling of disgust. Why do kids always aim to fight? I got into a few fights in Russia but now, feeling vulnerable I just wanted to sit in peace. I was slowly turning inside as the only atmosphere that made sense and provided comfort. I waived to drivers that made eye contact and observed the scenery the bus passed. I remember looking down at my hand as I felt something, seeing a cockroach crawling on my arm made me more curious than disgusted. They are so big here I thought, I had seen a few before but maybe a quarter of the size. What kind of place is this? Of course I forgot that I was the one from the zoo and was promptly reminded by Jose sitting to my right.
The school was large and had a lot of classrooms in boxes standing on bricks. I though this was normal and only later learned that they were portable classrooms. Like portable toilets, these classrooms were brought and placed there to avoid the expansive and expensive construction that would come years later as a political campaign. Anyway. Upon entry, a special smell of mold and air conditioned air made an impression on me and the faces of immigrant children soon filled the room in their obligation to learn. Being unable to communicate, I used a lot of gestures that I had seen on television program discussing the American culture. Thumb pointing to the mouth signifying thirst was one most often used by me until I learned to say, “I’d like a drink of water.” Times were tough but the lack of understanding made it easier. I only see the damage from that in my older self, but I tried to make it through the difficulty as much as I could. Self-reliance became more and more importance and I delivered to myself. My internal life was very active and I found ways to not only entertain but also stimulate myself.
Being a fairly outgoing child in Russia, I found it hard to be unable to communicate and the teasing of the cruel student body did not make it easier. The lunchroom was by far the worst. The standard stories of the nightmare of lunchroom is only evident to me now, then it was just unexplained hell. Standing there with my tray of two buns and some sloppy joe mix I looked around for a place to sit and saw groups huddled together, coordinated by colors and clothing. I never experienced the humiliation of having my tray thrown on the floor or any other type of bullying at this time, but I did experience neglect. I was invisible, a ghost. I found a seat and quietly ate my lunch and would repeat that on a daily basis, with no friends, no one to talk to. Just quietly eating my unhealthy lunch in my own loneliness. I had arrived in the most powerful, most desired place and I was alone.
The subjects covered in class were all kind of a waste of time. I understood nothing but sat there and tried to absorb what I could. The math seemed remedial to me since by the same grade level in Russia I was far ahead. This fact was indeed overlooked since the division was done in a slightly different way, upside down. I could not solve it on the placement exam and thus was just placed in a grade based on my age, rather than skill. Perhaps, if someone explained this to me, things may have been different, but it does not matter now.
Recess was an activity that was undertaken daily and most of the class engaged in playing some kind of sports. I just sat on the steps of the portable classroom since I really had no friends and very little interest to run around in the heat and then sit in an air conditioned box. I guess many considered me weird, and even more simply did not see me. Being a ghost was actually more comforting than facing criticism. Little did I know, I was in for a different kind of criticism than I had in Russia. Russian society at the time was not as materialistic to begin with, in addition to that we wore uniforms in school and thus ridicule for wearing a particular item was not something students encountered. In United States things were drastically different. My mother and I had purchased new shoes for me at a local store for the large sum of $30 dollars. I wanted Velcro since at this point I was not that great with laces and I wanted something that was easy to put on and not think about. The shoes were gray and I liked them very much and was happy that our frugal existence could provide new and expensive shoes for me.
Shlomo, the Israeli guy I had in my class, was a olive skinned son of Israeli immigrants and sat behind me in class. We tried to make conversation in a language that was new to both of us and we quickly progressed to comparison of our belongings. He loved the key chain I had with a Russian fighter plane on it. To me it was cool but not that cool. I had gotten it from someone on our journey to this new land. Something that was just a token given to a child. Shlomo had a pencil box that was reminiscent of pencil boxes I had seen in Russia as imports from other parts of the world. To us items such as that or even the comic prints found in Bazooka gum were items of great value because they were not easily available. The pencil box opened from both sides, had a small compartment for erasers and even a sharpener built into it. There was an intensely colorful space scene on it, and I liked it. Perhaps it was an old wish to own such an item that raised no question in my mind when Shlomo offered an exchange. I was happy to have this useless item and would carry it to school for years to come. It is quite remarkable how meaning is constructed even in the eyes of a child. Something that was not accessible immediately gained adoration and desire.
When recess came that day or a few days later, I took my seat on the steps and watched the rest of the class run around like animals. Shlomo came over and sat down next to me, we talked a bit about something trivial when he looked down at my feet, then at me and said “you know, those are girl’s shoes man.” The thought never occurred to me and perhaps right then was when my severe insecurity and self consciousness barged in on me. I asked everyone and assumed I was crazy. To me they were just grey sneakers but person after person confirmed the female identity of the shoes. The concept was strange to me and yet I felt ridicule, indeed the attacks and laughter followed as word spread and I just wanted to throw these shoes away.
That’s not kosher
My time at the distant school lasted from our arrival in April to the end of the year in June and during the summer months I began attending a summer camp at an Orthodox Jewish school. The white building reminiscent of an old colonial home was the place where I became a Jew, for awhile. The staff consisted of bearded rabbis and dedicated young women in long skirts leading the prayers and watching over the small groups of kids. Our daily activities included prayers, outside play time in the fenced in yard and daily trips to swim at private pools of various Jewish homes and sometimes to a park where we enjoyed watersports and hot dogs.
I became passionate about Judaism at this time, not due to my intense faith but simply due to kindness of the people surrounding me and their attitude of not trying to coerce me into any kind of belief system. I found myself not only wearing a Kippa but also the tsitsis, which were kind of like an A shirt under you clothing with four strings hanging off the four corners of the shirt. I had become orthodox in my approach and prayed along with all the kids indoctrinated while even younger and with less options than I. But I digress and its idiotic to judge others, so I became Orthodox, I wanted to be around these people always. In fact, I inquired about attending the rest of school grades with them. I was so desperate for kindness I found myself sinking into their way of life.
My mother stopped me from going to school with them since it was unaccredited and would likely produce further problems for me as I was at the beginnings of my education, but I loved spending all the time with them during camp. On Fridays we all had prayers and made our own Challah bread. We rolled individual strands that we later braided, the cooking of the braided breads was done by a rabbi and the follow up prayer was the opening to a Friday, Shabat, feast. It was already dark outside and the women lit the candles after the Sh’ma prayer. The bread was passed around to the person that made it. It was the most delicious bread I have ever had and Friday nights were a great time because of the delicious bread and the togetherness of the whole camp.
The rest of the week was spent playing in the fenced in yard, praying and going to the houses of various mitzvah oriented Jews to use their pools. The days were hot and the relief of pool water was wonderful. Sometimes I wondered who these people were that allowed thirty little Jewish kids to invade their pools. We were typically not allowed to go inside the homes and rarely met these people. I could not swim but stayed in the shallow end and cooled off, some of the pools had small slides that made pool time more exciting. Chlorine hurt my eyes but it was worth it to relieve myself from the ridiculous heat.
The lunches were had together with all the Jewish kids. We had our sandwiches and snack packs but even that was not simple here. “What is that you are having?” A typically Jewish girl named Hanni would ask me. I am not sure if it was Chani but nothing would surprise me. “Peanut butter and jelly,” I answered. “Do you want some?” “No,” she said “you know that’s not kosher.” Hmm, what the hell does that mean I thought, who cares, it tastes good. Everything in this fine country seemed to be about conformity and yet it has always been the beacon of freedom to the rest of us animals.
I was transferred to a closer school for fourth grade. It was still an ESOL class but that did little good since Spanish was a language spoken by most of the students and the teacher. I was getting an education in cruelty from neglect by children that spoke a language I never encountered before. I learned very little, by my expectations, but had my time occupied and progressed in my language abilities by reading and having small conversations. Being that young learning came very easy and the waste of time in ESOL ended with the end of the year. By the next grade I was in a regular class with regular American kids. They too were far from what I considered ‘normal’, but at least I was not with kids whom had parents that refused to assimilate into their new country out of principle.
The regular class proved to be somewhat more interesting as the curriculum was more based on learning than babysitting. Indeed, we read books and learned a bit of history but it was so minute as to what it should have been. The education system was all wrong. Activities such as cleaning the school and making tie dye shirts were hardy what a young mind was thirsty for but I had other problems. Wearing glasses and being a foreigner defined me as an outcast from day one. Even though I spoke fluent English by this point I was very shy, embarrassed by the name that was suddenly unloaded on me. “But I have a name,” I told my crooked toothed, Puerto Rican esol teacher. “This is your new name,” was the answer given by this substandard teacher with no real right to be around children, but she spoke Spanish and to the bureaucracy that was enough. Armed with my new name, I felt destroyed. This was NOT my name but that is how everyone referred to me now. It was my official name and I could do nothing about it. Hence by default, I became an outsider. My donated clothes, my glasses, my stupid name had turned me into a character to tease and I, having my ego damaged, accepted it as the way it was supposed to be.
I identified with another window faced “loser” since we would actually speak to each other without real judgement. He was tall and awkward but what did it really matter. I wished he was smarter and more interesting but I am sure he wished I was different too. We were always partners in group activities and even in larger groups we would be together. In yet another pointless project, Michael , which was his name, myself and three girls named Jennifer, Jennifer and Jessica were conducting an experiment of placing a Tylenol pill in water to watch it break down. Obviously a fascinating project illuminating nothing really but taking up time and keeping us busy. We carried on a dull conversation which somehow morphed into a conversation of sex. The way these girls saw sex was just what you do when you are married. Neither could describe it or really understand what it was. I read a lot and knew things many others did not even think about so I, in bad diplomacy, asked them what they thought it was. A response of “Ewwww” was the reply at which point I got up and retrieved a Merriam-Webster dictionary from the shelf. I do not remember exactly what it said but quite obviously it was not pornography and spoke of reproduction within animal species. No matter, the wine elevated to a very high pitch and before I knew it, I was punished. “Punishment, for what,” I asked. “You upset the girls,” another substandard teacher told me. “What? Its the dictionary,” I said to her. “Why is it wrong to look something up in dictionary?” “You can look things up at home, you upset the girls.” I had to write fifty definitions on paper during the time of recess for the following week. How clever. What was the big deal? We were all there because of sex and we would all engage in it but this was the maturity level of the students and the merits of American public education.
A lot of guys like her
Middle school came at a time that I was already compartmentalized as one of the loners/losers since I found most people uninteresting and kept quiet and to myself. I liked a girl that everyone liked which in retrospect was exceptionally stupid but the desire to be like others was a feeling of great importance. She was always with her friend who, no doubt, felt inferior and very conscious of herself. The girl, named Diane called herself “D”, had a D on her backpack, wore baggy clothes, listened to rap and thought she was all that any guy would want. She was attractive but not stunning, her personality fit a name of “B” better but all the wannabe gangsters thought that that was cool. Her friend, Mia, was overshadowed and rendered invisible by the loud array of flies around D. D never spoke to me as I was far beneath her but Mia did. She was quite nice and lonely but I, having the label of a quiet invalid so deeply ingrained, refused her contact and told her I liked D.
“A lot of guys like her,” she said and sighed. Yes, many did but what did I have that would interest D, what did she have that would interest me, probably nothing but I played along anyway. Who I really liked was the newly married Reading teacher but that was even a further wish. Her attention was not as easily obtainable as my beloved Moscow teacher, not to downplay the difference in my behavior. It was not the same, there was a wall that was not really passable here thus I was so desperate just to be seen, heard, spoken to that I would act as my surroundings demanded and my surroundings dictated that D was my object of interest. It is not that my perception was wrong it is the fact that in the end none of that mattered and life had to be lived to the most benefit of the individual. D’s blossom soon faded and she disappeared but Mia was starting to blossom very brightly. As though a glow about her. Two years later she was easily thought of as the most beautiful girl in school. Every guy would salivate at the mention of her name. In fact, so many guys wanted her that nobody dared to approach her. There were rumors of a modeling contract and an aura of mythological beauty that spread through not only our school but the entire town. She was the most beautiful girl and nobody was even close.
First day of school a year later I chose a seat close to the exit as habit dictated. Some students stood by the door chatting, others in their chosen seats discussing the experiences they had that summer. More people piled in with their new shoes, backpacks and lunch boxes. I watched who came in scouring for familiar faces and there she was, Mia. Without any hesitation she walked by several drooling guys and came up to me, leaning over my desk to be closer to my face.. “Hey, what did you do this summer?” She asked and smiled. “Nothing really, why?” I answered even though I was in Italy that summer experiencing the birth of my search for inspiration. No, I was rude instead, forming the idea that this was not happening. How could it? I had accepted my label and hid in my own universe. She shrugged her shoulders, “just being friendly,” she said and took a seat few seats behind me. Chastising myself and imagining what that situation could have unfolded into drove me crazy. It is not like I imagined some sort of fairytale, simply just that more experiences could have come and yet I was so involved in my own world, having been rejected by the outside world. I did dream of her and there was nobody that influenced me more at that time . I wanted just to be with her, to hold her. Her smell alone drove me crazy and yet I accepted it as impossible. What amazes me is that she saw something that nobody else did and I did not allow her to show me. I do not know what happened to her but her dream of a blossom in the shadows of her friend materialized, it materialized beyond her expectations but it faded just as quickly. In the grand scheme of things this was fairly insignificant but illuminates the fact that however seemingly impossible an idea appears to be, its not.
As high school came I had already decided to change tactics to be the friend that the rest of the neanderthals could not manage. I had identified with the label bestowed on me and did not even try to harness a relationship, besides I was hardly the object of any interest, or so I thought. Perhaps foolishly, I realized that the girls wanted honesty and friendship with a guy and not just the obvious but then again that was our time to be reckless, to be absolutely free. It did work though, the most attractive girls were now my friends, but nothing more. To me, this was good but not great. I wanted the feeling of closeness and friendship gave me that but I wanted love as I imagined it. A lot of my male friend were very jealous that I had girls of such apparent caliber around me; they could not understand but really, everybody just wants to be heard, even the most attractive girls needed someone to just talk to. In many ways beauty limited honesty and changed the focus of gender interaction to the one thing on all males minds. Deep down I too was going through changes and I too wanted them but alas it was just unrealized fantasies that I understood to be out of my reach. In reality, many of the girls presented little past their appearance and would surely be disappointing but that is the essence of teenage years; learning disappointment and collecting life experience.
While my comrades spent all day obsessing over the female body in a very sexual way, to me it was aesthetically beautiful. In fact the girl whom I was infatuated with for several years, completely undressed in front of me to show me her new piercings. “We are friends, right?” She asked as she took off her clothes. She wanted me but I just looked, observing her nineteen year old body. It was art to me. She told me later that she was nervous and she was finally ready to take the next step, she liked me, maybe more than I could have imagined but it was just not there anymore. Upon reciting the events to my, socially awkward, friends, I was ridiculed and repeatedly accused of wasting a chance that would never come again. Being friends with girls had already provided much of what these people were after and really all it took was honesty. Of course that chance never did come again, but why was it a lost chance? Maybe it had to happen the way it happened. I finally got to see her the way I painted her in my mind. To me it was a beautiful experience, it was honest. I never really regretted it. Timing shaped the situation as it often does and this was the script unfolding.
Plato not Prozac
I was told that college was the place of self discovery and indeed it proved true. Everything got much easier. I remained quiet and introverted but to my delight, many women had matured to find that more interesting and appealing than the constant noise. I felt normal and alive. It was not as hard or complicated as it presented itself earlier. Even though I do acknowledge that much of the hardships were self imposed, the social label influenced my own behavior in no small part. I began to see the slow emergence of my real self in college and I was slowly criticizing myself less and less.
I drifted through a variety of majors on a quest for something, not only challenging, which proved to be difficult, but also interesting and seductive. Art was the only true source of escape, Caravaggio intoxicated me, Renoir made me smile. Like a drug, it was very easy to lose oneself and feel free. I studied drawing and painting and although I, and my instructors, realized that I had talent that could have been pushed further, I was too hungry for the work already created. I wanted to feed myself more. I traveled, I searched. I was free to be whatever the author in me demanded. I looked to history but was not captured, I looked to religion and mysticism and felt betrayed. The discovery of philosophy was really a merit of two professors who baited me with discussions of the essence of things as opposed how those, phenomenal, things shaped the world and their behavior. I had always thought in these ways but never fully realized that that was how the world reveals itself. Its not just knowing what happened, its knowing how things happen, what really are those things. There is so much beauty that slowly reveals itself and it was not surprising to learn that philosophy was deeply connected to art but from another perspective. It was not visual but psychological. I was hooked and I wanted more.
Study of existence was perhaps the most fascinating to me and even though more modern thinkers hit the nerve inside me, the ancients danced around reality fairly closely and thus the two systems that introduced me to philosophy, stuck with me since.
By accounts of many others I remained depressed. My own self analysis left me thinking that it was not depression, just frustration. I was living inside myself and saw reality based on principles of art and philosophical revelations. I refused to understand things as many others did, which was not to be stubborn or annoying, I just saw everything differently. Maybe it was flawed but it was the way I saw things. Consequently, the more one understands, the more one is frustrated and disappointed and thus my sadness was no longer from my inability to form meaningless relationships in the pursuit of a good time, it was more of what is a good time and why are all these people after it?
I found solace in the echoes of great thinkers. Often, just the thought of something else gave meaning to the already absurd existence. Why were we here was not answered by anyone, how could it be, but many had thoughts and I absorbed them like a sponge. Philosophy and art intertwined and served as the base of my fabulous internal structure. I did not need Prozac, I just needed affection and order.
Part 3 – The World
I thought that after Russia, U.S. was the world, however being in Florida I quickly realized that this was not the world nor even U.S. really. This was a resort, vacation spot, that was slowed down and not nearly in tune with the rest of the planet. I began to crave more, specifically Italy. I learned about the Roman Empire and was fascinated to see this mystical land. I felt a connection to Italy like no other place and as soon as we gained some funds to afford the luxury of travel, we applied for our Travel Passports and left on the Italian Airline to the land of art, elegance and the largest empire of the ancient world.
I had never expected and never seen a more beautiful collection of flight attendants and a more beautiful language. The signs were in Italian and the Italian sitting at the window seat was as strange as all the humor stereotypes perpetuate. This man, saying scuzi every few minutes for one reason or another was so bored, he read everything available including the soda can he was given. Even though we were foreigners in our own home, this man seemed a foreigner to us. How odd this was I really only understand now.
Rome was gorgeous, just being in a city that has been alive for so long was mesmerizing. The people beautiful, the food delicious, it was like another planet. The metro was covered in graffiti at the time, but it did not change the magic of the place. Restaurants could seriously be picked at random without being disappointing and our low demands allowed us to take in the city by foot, sight and smells. The art was in the cobblestone streets, the vendors selling the most delicious fruit in alleys. Just walking around in many ways proved more beneficial than museums of unquestionable masterpieces. Breathing in the air filled with aroma of fruits, spring and food was just so liberating. I touched the ruins that are found all over the city, I touched the Colosseum. This was art that I longed for, this was a life I wished I was living. Just being one with time, one with art. The Vatican was a goal to visit and it was the only planned tour we wanted to take. We got on a bus outside the hotel and it took us through the city towards the sinister gates of the Vatican. We passed the city walls and entered the museum where I saw the treasures collected over thousands of years. Jesus did stare at me from The Last Supper table and the fresco’s on the wall did appear to be sculptures. How could this be done by human hands?
Seeing the majesty of the Sistine Chapel’s The Last Judgment really moved me and the rest of the Vatican museum was hardly a comparison. I stood under the ocular light in St. Peter’s basilica, and although these kind of architectural tricks would become obvious to me, at the time I truly believed that this was the light of God. The supposed bones of Peter were under the Basilica, along with the remains of past pontiffs who often laid within a crafted box of their own appearance. Truly a dark atmosphere of death that only enticed the experience and transported the visitor to a realm beyond. How did these people become ‘special’?
Such majesty and such a foreign atmosphere felt right to me, and even though we often took the longer path due to our own ignorance, it was always very rewarding to be in Italy. We stopped several times on our long walks to enjoy a piece of fruit from stands often lining the cobblestone walkways. By night we sat in our hotel room and watched Italian tv. Its strange but after awhile I began to understand what the conversations were about. I remember my amazement at the suntan lotion commercial that came on with a topless woman putting lotion all over herself. Civilization, I thought. Why have the breasts become so demonized in America. In any case, the city noises of conversations outside, occasional broken bottles and Police sirens gave me peace and I had found what I had left in Moscow, City Life.
The fascinating instrument that was next to the toilet took some getting used to. It was a bidet and being from a savage country where bidet was not very well known I tried to figure it out. I was not sure how to sit on a bidet and more importantly I did not know what I should do with the knobs but I tried, and tried. I was so embarrassed that I eventually stopped. I was from the United States and yet I felt like NOW I came from a zoo.
On the exit in the mornings we always saw the hotel staff cleaning the rooms of our fellow patrons and they greeted us happily, not because they had to but because they were just happier and more welcoming than their counterparts in the sunshine state. “Bon Giorno,” coming from every direction and “Bon Giorno,” spoken in a broken tone was the response that I always delivered with a smile. Not because I felt that I had to, but because I really felt like smiling. I walked around Rome breathing in the history revealing itself behind every corner. Ruins of a time long gone, stones left as they appeared hundreds of years earlier, sculptures turned green by the acidic rain created by modern man, were all signs and treasures of this place.
I saw a man washing in one of the numerous fountains, I saw beggars, I saw soldiers of the Vatican in their costumes, the clergy in their robes and hats. Strange and unexpected but full of life , full of art. The narrative within myself was born and ‘real’ life was not something that bothered me anymore.
We traveled to many other places after yet I remembered the Sistine chapel always. I found my soundtrack in London, where House was played everywhere and I was beginning my journey into trance. I submerged myself in the club atmosphere which presented a feeling of freedom and disconnect. It was so alive there and I could feel its vibrations. Trance especially just took me away from the place I did not want to occupy. I wandered from museum to museum, gallery to gallery, my headphones in my years keeping me marginally sedated. There was something in the paintings, something that felt real, alive. Of course some paintings were much more seductive than others. Some artists in general felt much more intense but the captured elements of life were forever encapsulated on canvas. Strokes of the brush was something that mesmerized me and I, violating rules, always tried to touch the paintings, the brush strokes. It was alive. Someone gave it life. No matter how many paintings I saw. The Last Judgement was by far the one that influence me the most. The demons towards the bottom of the masterpiece haunted me and no painting ever captured the same feeling in me.
I had developed an, intellectual, interest in religion and tried to find beauty in that aspect of humanity. University allowed for the path to enlightenment regarding this crucial aspect. I learned about Islam in a way that is difficult to imagine with the media portrayal in United States. I learned about Hinduism and other Asian, often Godless, religions. I wanted to understand why most of humanity chose to follow these. What was so beautiful, so promising? The Vatican was indeed beautiful but somehow seemed wrong to me. Israel called soon, among the interest founded in our supposed identity, we did have a lot of relatives there that wanted to see us. Among the faces I never met, there was the family from Parnu and I felt very comfortable with them. So, we decided to go and see this so-called Holy Land. We saw Israel from northern border to the southern, bypassing the West Bank for security fears. Remarkable,
Jerusalem both scared and seduced me. Oceans of tears, rivers of blood covered these streets. Charlatans and Saints walked these streets. God and Devil were both here and one can feel both regardless of their beliefs. This was the city of death. I touched the limestone of ancient walls, I touched the tomb from which Jesus ascended. I followed the path taken by Jesus of Nazareth as he struggled with the cross on his back. The path was not terribly long but what awaited me would make it clear that the distance made little difference and just around the corner would indeed take another meaning.
Romans were here too and I was glad I saw that first. The Romans were noted as being scared of Jerusalem and I cannot blame them. It is difficult to imagine it at that time as it was surely much darker and more sinister with the smell of death ripe in the air. I later learned that Romans often referred to Jerusalem as the city of death and yet I did not know this when I felt the overwhelming feeling. Strange rabbis, children, women all approaching obvious Westerners with their hands out. A very powerful experience that highlights that with all the beauty there is so much sadness and perhaps here is where I felt the devil.
I wanted to see Cairo and being close, we decided to go. We got into a van that took us to the border. A man with an AK47 checked the Visa gotten earlier in Tel Aviv and angrily waved us through. “Thank you,” I said grabbing my passport and walking into Egypt. There was a casino, and a bus waiting for our group, the guide waving us on. “Welcome to Egypt,” this long haired Israeli announced as he introduced Sayid, our driver and Abdul, our Egyptian guide. I closed the curtain on this fancy bus and closed my eyes to try to sleep. It was very early in the morning and the ride through the Sinai peninsula would take several more hours but I did not know this yet, I wanted to sleep. Of course, that did not happen and I soon was looking out into nothingness beyond the window.
The palm trees lining the roads in Israel were replaced by desert and more desert. The stories this desert contained fascinated me as I stared at a lone tree looking back. “Who are you?” I whispered. “How do you survive?” As Sayid drove our bus through the tunnel under the Suez canal, the guide screamed, “Welcome to Africa.” On the other end, an armed guard joined our bus, his name was Ahmad and the AK he was holding was for OUR protection. So far the country was living up to its image. Whether the image came first I do not know. The scenery was mostly desert with war relics that could not be removed due to mines nobody had maps for and so the instruments of torture and death sat there for forty years at that point. We kept driving and driving, stopping at what I would call a rest area. It was in the middle of the desert but had snacks, drinks and toilet. I used the toilet, purchased a drink and took a seat at one of the outdoor table when I noticed a British mother and son who were on our bus. The kid was in his early teens but appeared attached to his mother, who appeared to be in her fifties. I watched them and wondered how similar their story is to ours. After all my mother and I were on this trip alone as well but I was already exploring independence, this teen was not. The mother looked at me but said nothing.
We arrived in Cairo in the evening and checked into the luxurious hotel that was part of the tour. The pyramids could be seen through the window and it was just unbelievable. I soon proceeded to explore the rest of this hotel as was my ritual. The guide had warned everyone that even though water was filtered it was not advisable for westerners to drink thus I asked for juice with no ice at the bar downstairs and walked over to watch a game of pool. Couple of Arabs playing thought that they could take my money by pressuring me to bet in broken English. Scared but unmoved I just walked away and ventured outside. Perhaps the news media or movies had conditioned me to be scared of robbed men, I was so frightened by the scene of all the men in white or blue robes, that I went back inside. I brushed my teeth with the bottled water standing on the counter and fell asleep.
We all had breakfast in the morning and filling my glass from the juice machine the guide, on his way out stopped me, “don’t drink that, it has ice in it,” and pointed to the floating ice. “Thanks.” I said and got a bottle of water instead. We arrived at the Cairo museum early and waited in front of the doors for it to open. Once inside I was so overwhelmed and fascinated that I tried to see as much as I could. The little models of the residences date thousands of years but looked exactly like single family homes at home, complete with a swimming pool and gardens. The models of chariots with gears was just incredible. These people somehow managed to exist at levels deemed impossible by our worldview of the ancients as primitive. Of course, there is fascination with Egypt but seeing such wonders only made me realize that modern man is really the primitive one but is fooled and blinded to believe that progress has been made in human evolution.
We had to travel to the pyramids and to facilitate this I was pulled out of the museum. It was hot inside but through the sweat, it was just an opportunity not to be missed and an experience to be valued. I saw Tutankhamen and said hello before leaving the museum, got into our bus and Sayid took us to the pyramids. In a desert setting the pyramids stood not far from a road covered in tour buses and cabs, in front of which was the greenest vegetation as though in direct contrast to the desert plot of Giza. The air was dry and the sun hot but somehow the overwhelming sight of the great pyramid held focus. The pyramids were unsurprisingly amazing, our Egyptian guide presented various theories of the construction but even an untrained eye could tell that this was beyond human ingenuity available now with all our gadgets, how could they do it then? Each stone was the size of a small building and everything was just perfect. The tunnel inside was made by looters and lined with modern lights. The deeper I got, hitting my head on the low ceiling, made while digging a hole in, the cooler it got. I finally reached a room where I stood straight and could not believe the smoothness of the limestone inside. This was a burial chamber, yet the sarcophagus was stolen decades ago, as were the treasures buried with the Pharaoh. The ceiling was quite high and the stones darker. I felt the stones with my hand and it was cool. If it was in the dark I could maybe make sense of it but there was modern electrical lights on the ground and endless flow of tourists coming through, yet it remained cool.. Incredible and all in the name of death and travel to the afterlife. What a mystery. Who built this?
The brightness of the sun upon exit was intense and the newly discovered heat burned my head. The group was led to the Sphinx by the Egyptian shepherd who spoke briefly and then released the flock to examine the cat on our own. “What big paws you have,” I whispered to the kitty adorned with the face of a man. The head seemed too small for its body but that was a secondary problem. Its poor nose was busted as a result of Napoleoon’s army firing at it. Why, I wondered, why? But humanity tends to destroy things of beauty and wonder. There is so much beauty if its just allowed in but the forces of darkness are with us too. I stroked the cat’s paw and said goodbye as we were leaving for the oldest market in the Middle East. “Don’t forget me.” I whispered to the cat as I walked away.
By the time we got to the ancient market I was vomiting. In the bus, I swallowed, outside I did not manage to hold it in and covered the parking area in a greenish sludge that came out of me. At this point the Egyptian half of our tour guide team helped me to the toilet on the second floor of a restaurant. An interesting room covered in pillows, fabric on walls and ceilings and hookahs in every corner. The toilet itself was a different story. Egyptian traditional toilets had a crude form of bidet in them, at least that was how it was described. A thin pipe stuck out of the toilet bowl to facilitate washing yet everything including the little pipe itself was rusted. I felt sick and the sight of that made it worse. Vomiting did not stop. They brought water which did not help, my chest was in severe pain already yet I could not stop vomiting. Bile came and yet the urge did not stop. I wanted to see the market but could not go far from the toilet. Both of the guides kept asking how I was doing until the Egyptian finally disappeared and returned with three pills that I had never seen before. I took one, waited and was cured minutes later. “What was it?” I asked, I do not remember what he said but he alluded to the fact that it was most likely heat exhaustion. I was not sure but it made me feel better so who really cared. On the bus ride back I ate bread and drank water, another member of the group did not leave the bathroom as he drank the water and was now experiencing the punishment. The guide shook his head as we all heard another flush and I, sat there with my chest and head hurting bad but with at least the ability to hold down bread and water. Several agonizing hours later we were back in civilization looking at the Red Sea from the hotel balcony.
The train pulled up to the platform and the doors slid open. Crowds poured out and scattered in different directions. “Mind the gap,” the recorded voice said as I stepped into the metro. I was spending a few days in London, just going from gallery to gallery, absorbing as much art as I could, spending a lot of time at the museums the British Empire filled. Treasures from around the world, the ancient world. Wandering around the British Museum I, carefully reaching around the DO NOT TOUCH sign of the Rosetta Stone sitting in the middle of the room, touched it. I always had this urge to feel things, to experience something that many before me had experienced. To sense their traces, to share their experience, to feel alive.
I had to leave that night from an airport further away than the two major ones so I consulted the Indian man in charge of the night shift. “Just go to the coach part of Victoria station, a bus leaves from there,” he said. I thanked him and returned to my room to maybe sleep at least some. I had my tea and slept till four, when I got up, collected my things, checked out and left the hotel. I had to take a bus since metro did not open that early in the morning and so I walked and waited at Victoria station for my bus to board. Several other tourists found their way in the darkness of the night and with a frightened look asked me, “is this where we get on bus to go to Standsted?” “Yes,” I answered with a nod and smile. They were relieved and put their rucksacks down and took a seat.
The bus boarded soon after and an hour later we were at this small, clean, and very pleasant airport. Perhaps it was the time but there were practically no crowds and I was sipping coffee with my boarding pass in pocket ten minutes later. Flight 3243 to Paris began to board about twenty minutes past seven, according to my watch and flying time would be an hour, according to the boarding pass. I sat down in the plastic seat and pushed the button to recline. No luck, it doesn’t work. Well, I thought, for the price of this ticket I guess its wrong to complain. I closed my eyes in my erect position and tried to dose off.
“Welcome to Paris,” the intercom announced. “Currently nineteen degrees and raining.” Paris, there is no place like it. I had one goal in mind, I wanted a strawberry tart and a little cup of coffee. I proceeded to the exit, where I got into a cab and directed it to the hotel we had agreed on to leave my stuff and meet Lani, my travel buddy, at the train station. Lani was a girl I had known for years and tried to date once. Nothing came of it but we were still friendly. She was in EU on a study abroad program and we agreed to meet and travel a bit together. We walked around Paris, we spent the evenings in a variety of Parisian chill spots so to speak and we tried to lose ourselves in art. Walking past the Eiffel Tower towards the stairs up to the platform, the tower began to sparkle. This happens in the evenings and a group of African musicians began to sing and play their bongos. We reached the top and saw the tower in its full glory to the soundtrack of these guys. Constant beat almost put me in a trance and I wondered how life could be so bad, not like this. We asked a Chinese man to take a picture of us with the sparkling tower in the background. He happily agreed and positioned the camera while his wife and son stood next to him. I hugged and kissed Lani on the cheek. This was true beauty.
We walked all over Paris. It was summer and the weather was wonderful. Somewhere by Chatelet station we stopped at an outdoor vendor to get some shormas or shwarmas the spelling changed. We looked at the menu hanging below the counter on a large board and looked up at the chef. “A shorma?” The olive skinned man in an apron asked. “Yes,” I said and nodded as he cut the meat and prepared our orders. He handed the pita wrapped food in a paper cone to Lani and then to me. We both said “Merci,” and continued walking towards the river to enjoy our street food on one of the bridges over the water when at a distance I saw an elderly woman with a young guy that was strangely familiar. I looked them over trying to construct the traces in my head, and then I finally remembered. Years ago, in Cairo it was them. Mother and son. The son had obviously gotten older and taller while she looked the same. How could this be a coincidence? We sat on a bench in the middle of the bridge and unwrapped our cones, I kept looking at a distance to conclude that I was not hallucinating, it was them. I looked at my food. Lani had already taken several bites and seemed to be very satisfied so I bit into mine. We ate and watched the birds and people maneuvering about, restless, we soon left to go to a museum on the other bank and spent several hours lost in impressionism. I felt ill but nothing like Cairo. Was I pushing my luck?
At sundown the next day we went to the steps of Montmartre where a glorious view of Paris was completely breathtaking. During sunset the city had a golden glow that I only read about in books. Magic. We sat on the steps and waited. It was already ten but sun was just setting. The beauty is difficult to describe. While so many people had so many different life stories here, their city was beautiful. We came back to Eiffel Tower again, only even later. The grassy field in front of the tower was packed with tourists and locals. Indians selling water, wine and flowers to complete any evening experience. We bought wine from the salesmen and sat there absorbing. There was no place like this. We covered the major museums, spending three hours at the Louvre. I had spent hours there before and still had not seen everything. Mona Lisa gave me her smile again and I smiled back hoping to see her again. We packed our stuff, got into a cab outside our hotel and were off to a station from which a bus was to take us to a nearby city for our discount flight to Madrid.
That room is so me
We spent a few days in Madrid, seeing museums, gardens and palaces. The greatest discovery there was Sangria wine, the best wine I have ever had anywhere. In fact it was so good, we were drunk every night. Saddened that my search for love was not manifesting I thought and we agreed that at least one of the nights we would go clubbing. After all, Spain was known for this. I had grown very much into the house and trance music scene since my trip to London and had to include it in the story I was constructing. Unfortunately for us everything in Spain is late at night. Restaurants open at 8 and the party at the nightclub comes to life by 1 or 2. We came there earlier and had nothing to do but drink.
The club was an old royal apartment with several rooms. In one a dance class was on its way that we joined briefly while the room with lights and DJ was playing music that was not what I wanted. That would come later. One screwdriver, two. I was running out of money and the Sangria was making me very tired. The music got better as time moved on yet we both were getting more and more tired. We sat down in another room next to the DJ booth. He started spinning House , I closed my eyes. I turned to Lani, “You know that’s really me in there, that room is so me.” She nodded and smiled. “Do you want to dance?” She asked. “I do, lets go.” I offered her my hand and led her to the center of the room where we danced. I held her close and wanted to kiss her but I didn’t. I don’t know what she thought but I guess that we were both just using each other. The room was getting more and more crowded and the music better and better but people tended to make me ill and we both were getting very tired. “Do you want to go?” Lani said as I held her close to me. “I do,” I whispered back into her ear. We turned around, made our way down the beautiful hallway and stepped out into the cool evening in the Spanish capital.
The next morning, after a delicious breakfast at an outdoor cafe, the unrelenting search for aesthetics took us to Prado, a world renown museum where I fell in love with Rembrandt. Although I neglected him in his home country, the man in the golden helmet mesmerized me to the point that I could not look at anything else and even now do not remember what else was there. How could something so beautiful be made by a human being. How could any of it. There is so much beauty in the world but it has to be looked for, it usually does not find you. Lani did not experience art in the same way I did. To be honest I never knew how she understood the world but I guess we never know how others experience phenomena. The days were hot and the ongoing noise of the constant construction wore our excitement thin. We saw what we planned and it was time to move on. Wiping the sweat of her forehead, Lani said how Barcelona was much cooler. It was on the sea after all and a breeze could be expected but really I trusted her, she had been there before and so we booked a bus ticket since the train was too expensive.
ce bella Barcelona
Eight hours, a good book and some snacks later, we arrived in Barcelona. We took a metro to get close to our hotel and stumbled out into a square with a McDonald’s facing us. “Oh,” I said as we began our walk down the narrow street. Lani organized it all and led the way. We walked down the narrow streets lined with old buildings, by old I mean not of this century, to reach a large gate with an intercom box on the right side of it. People’s names made as though a residential building made me wonder but Lani found a small sticker next to one of the buttons. She pushed, we waited, “Pension S[something], a man’s voice responded and Lani explained in good Spanish who we were and that we had reservations.
Lani wanted to nap so we agreed that I would come back to get her and go to dinner. I put on my flip flops and walked down the 88 steps of this gorgeous apartment building. I walked out and saw a woman aggressively scrubbing graffiti on the wall. A huge dark mark of “420” was not coming off. The poor, aged, woman sighed and kept scrubbing. She paused and asked another woman washing the sidewalk, “Que significo?” Both did not know but I did. Americans, I thought. I walked, turning when the path turned, I walked by another McDonald’s, a KFC, bunch of local shops and a very busy street. I crossed the one lane road, then the big pedestrian street and then a one lane road going the other way. I kept walking, wandering into the bowels of the city. I was lost now. I had no idea how I found myself past the crowds and the sounds to a world of whores pulling on my clothes and drug dealers offering their supplies. I walked by a woman squatting with her pants around her ankles. She was urinating in the middle of the street. Well, I thought. Few hundred meters further a man was fighting with a trash bin. I was not scared, just uncomfortable. My shoes were starting to hurt my feet after hours of walking and I did not really know what to do but walk. I finally reached the metro station we had exited and retraced our steps back to the Gothic Quarter and to the gate of the building where I rang the intercom and in broken Spanish got the man upstairs to let me in.
Lani was sitting on the bed reading her book when I walked in and laid down next to her. “Where were you,” she asked as I kicked off my shoes. “I got lost, forgot name of hostel but I found it, eventually,” I told her with my face in the pillow. Without turning away from her book, obviously pissed off, she mumbled “Do you want to go eat now?” “Sure, but give me a few minutes to rest.” “Ok,” she said without turning from her book. I got up and put on my sneakers after spending some time recharging and stretched my hand out to her as an invitation to go. She got up, put on her shoes and grabbed my hand. We walked past the statue of Christopher Columbus towards the beach and decided to explore one of the restaurants on a man made island built for the 92’ Olympics. The food was ok, the wine excellent and the view spectacular. “Gorgeous,” I said while sipping my Sangria. “Yea,” she almost sighed while smiling. We sat there and stared at the sea, letting the cool breeze blow on our faces.
The following morning while Lani was in the shower, I stood on the balcony watching the rain over the Gothic streets. As aesthetics and art dictate the balcony next to me soon had a very cute girl whom I immediately sparked a conversation with. Her name was Bec and she was from Melbourne. Why was it so much easier to talk to women in Europe I do not know but it was. I was not a loser or the introvert, I was myself and people treated me as normal without the constant judgment and ridicule. We were very much into each other, she laid her head on the railing to look at me and touched me whenever she could. She and her friend/travel parner, went clubbing the night before and she was glad to have slept in later. She loved rain and found it magical. Rain always is and the way we were experiencing it was a rare treat that few pay attention to. It turned out her grandparents were from Russia and she always had a desire to go there. Her friend called her and she apologized and said goodbye shacking my hand.
Of course, I did not say all I wanted to. I did not ask where they were heading that night and if I could join. I rehearsed future conversation over and over yet I never saw her again. I chastised myself for being the usual fool, it was different here and I should have acted differently but I did not. Lani came in soon after, “hey,” she said as she closed the door behind her. “I found where to get tickets to Figures and the museum online,” she said as she took off her towel, wiped between her breasts and reached in her suitcase for clean underwear. “I am not sure I want to go,” I told her as she pulled the light blue laced panties on. “Really? What are you going to do?” She asked looking at me. “Just see more of the city. Walk around.” She nodded and said, “ok” Preparing her fan over the sink that was in the room, she looked at herself and suddenly spoke, “are we meeting for dinner?” I smiled, “of course, I will meet you here at seven.” I picked up my messenger bag, pulled it across my chest and walked towards her. I kissed her on the cheek and wished her a pleasant trip to Figures.
I needed to walk. To think. I walked to the large square surrounded by shops and looked at few things in several stores that sadly were not available at home. Walking through the sea of people I was stunned by the sight that revealed itself to me in front of Lacoste Store. An old woman sitting on the pavement Indian style with warts all over her face and a big crooked nose. She was dressed in black rocking with her hand out. Mumbling something I could not make out, but the sight as frightening as it was, made me think. She appeared to be invisible to everyone else yet I could not look away. She was yet another echo of something dark, something not of this world and yet people just walked around her. The noise of the city muffled her mumbling but I do not think anyone would care either way. She was a ghost. I left some change and kept walking. I went on top of Mount Juic, the highest point in the city overlooking the port and providing the most intense views of the city itself. I saw the Olympic structures and wondered around the very green and quiet area. There is a castle up there with cannons and a moat. At first I thought that I could just walk there but a local explained that to get to it a cable car had to be taken. I looked for other ways to reach the top but without a car, it would take hours so I finally decided to take the cable car. There was a line of people with the cars only taking four people each and so I waited. VarietyMy turn in the line came and I got in, an Italian family got in with me and spoke to each other while the car was pulled. “Ce bella Barcelona,” the woman said as we could now see a breath taking view of the city out of our cable car being pulled higher and higher. The castle was out of a story book, a bridge over the moat allowed for entry into this structure. Canons, on the roof faced the largest port in Europe and I can only imagine how they served as protection in times past. I looked inside the canon and wondered what it had seen in the hundreds of years of its existence. The roof, surrounded by a wall, had open spaces every few meters that allowed for canons and soldiers to conduct their process in the defense of the fort.
Upon the completion of my undergraduate studies I felt that I had to continue. There was so much to learn, to see. The world is art. I applied to different schools in Europe, very inclined to go to Spain. Programs did not fit and my Spanish was not strong enough to handle graduate level philosophy. Thus my choices narrowed themselves down to England. Knowing how expensive London was I felt like this was again an unreachable dream. Then, like magic, the idea appeared that University of Amsterdam had a Master’s Program in English. Wow, I had been there before and to be quite honest I was not in love with the place. Perhaps, I did not allow it to engulf me, perhaps I was too blinded by the overwhelming nature of drugs and sex. It was much seedier the first few times I found myself in this almost dollhouse of a city. I applied to not just that program but Mysticism and Esoteric ism as that always interested me. I waited anxiously, I was sure that Mysticism was probably a long shot but those who do not try do not get anything. I received a reply quite quickly as I was told I would and it was a rejection from entrance into the Mysticism program. I was denied based on my limited background in theology which was quite a legitimate problem. The philosophy response was delayed. I had no idea how the department functioned at this time and so that only made me nervous. To occupy my mind I decided to venture somewhere completely different, completely foreign.
I arrived in Tokyo twenty-two hours later. It was evening there and with no sleep I was very tired. I made myself a cup of green tea and passed out in my unusually large room in the most fabulous hotel, courtesy of being a guest of the Russian Government. Really its who you know and I was the guest of Russian Federation because it was the key to a substantial discount in this otherwise very expensive hotel. I slept better than I had in a very long time. I made sure to set the AC to the coldest temperature and the electronic notification to “DO NOT DISTURB” in Japanese of course. Its better to travel far as I woke up at a time that I could still get breakfast with the pack of coupons I got. Walking through this magnificent palace, I got into an elevator and went up to 40th floor where I had my first breakfast. I never had any breakfast that was as good. Unlimited buffet of whatever one wished for. There were eggs, fruit, biscuits. A very nice Japanese man ran up to my table by the window overlooking the city and asked if I wanted tea or coffee, as he was holding a pitcher of each in his hands. I said coffee and he flipped my perfectly arranged upside down cup and filled it three quarters of the way. “Arrigato,” I said thankfully, he bowed and replied something I did not understand. Everything is so perfectly arranged here.
I strolled outside during the best weather of the year. Everyone bowed to me so I bowed back. This was much more comfortable for me than handshakes. Besides there was something much more artful in a bow. I walked to the entrance of a metro station and took the escalator down, the station was very busy as most Tokyo stations are, the machine for tickets was in Japanese and the maps were in Japanese. I figured out how to buy a day pass with unlimited rides and bought that. The platform had strange yellow circles which where guides for people to line up single file. The train came within seconds of the displayed arrival time and oddly enough stopped with the sliding doors lined up exactly with the yellow dots and consequently in opened in front of the single file line that quickly and efficiently piled inside. Inside the train the phrase to remember and repeat is sumimasen which simply translated to excuse me. This was a culture based on respect and propriety. In fact many sat or stood in the train quietly with their eyes closed. There was no loud talking on phone or any distractions we are used to in our western life style. A child looked at me and his mother said something to him which produced a bow and a smile, I bowed back. Then the mother bowed. Many have said that the Japanese were cold but they were not, you just have to play by their rules.
I covered much of the city still searching for art and love. Several time Japanese women of incredible beauty came up to me just to talk. They all had to have English in schools and thus found white guys interesting. Not to mention that my Korean friend told me that Asian women love white guys but when I tried to date her, it did not work. Maybe she was in America too long. In either case I once again felt alive, visible, interesting. The culture fit very well even though there were strange aspects and what I knew of it was not nearly enough. I liked it. Clear, efficient, order within chaos. Crosswalks in very busy districts of the city would collect hundreds of people yet when the light and sound came on, in perfect order the people
Part 4 – Amsterdam
The driver of the black Mercedes-Benz S350 taxi said very little as he drove along the tram tracks of Nieuwezijds-Voorburgwal. He seemed to talk to himself in Dutch, but a bluetooth headset piece in his ear soon illuminated the situation. There was construction and the one way street in front of the hotel required the driver to make a few maneuvers to get close to the entrance. He backed up, then forward, then back again, turned and said “that is as close as we get,” and exited the car. He walked around, pulled the suitcase out of the trunk and said that he was owed twelve euros.
I dug into my pocket and pulled out a handful of bills among which I found a ten note and dug back into my pocket for some coins left over from the train ticket and was happy to hand the two euro coin and the note to the driver who got back into his Mercedes and left. I walked towards the entrance, rolling my suitcase behind me only to find stairs leading up to the actual door. Shit, I thought to myself as I prepared to lift the suitcase when a brown skinned man emerged from the hotel and grabbed the suitcase handle with a smile. “Hello, welcome. I’ll take this in for you.” “OK, Hello,” I followed him up the stairs and to the reception counter. The man left the suitcase by the counter and proceeded to talk to the people glued to the tv while sitting on a beige couch in an area adjacent to the bar.
There was nobody behind the counter and after picking through a variety of papers, I found the reservation print out and laid it down in preparation for an employee to return to their post to check me in. I turned to face the television and was instantly horrified by the mass flooding and the consequent panic and misery. People were dead, many were missing. The hurricane that was heading towards the area, struck while I was in the air over the Atlantic Ocean and now was dominating the news coverage all over the world. Everyone in the hotel was fixated on the screen, watching the disaster unfold, “how could this happen,” an elderly man exclaimed in horror.
The man who brought up the suitcase turned around and ran back to place himself behind the counter and reached for the paper laying in front of me as he continued to watch the panic. “Staying for one night,” the dark skinned man uttered as he typed on the keyboard behind the counter. I turned and nodded. “No problem, you are all set, let me show you to your room.” He came back around, grabbed the suitcase and proceeded down a hallway nearby. I followed with occasional glances back at the TV coverage.
The man opened the room and rolled the suitcase in and placed it against the wall. “I think you can figure it all out,” he said as he opened the only additional door in the room. “The bathroom is here,” he pointed out and motioned me to get comfortable. “If there is anything you need, dial 0, or come by the counter,” he said and left the room.
I put on the kettle, as I often do upon arrivals, and got naked. It was morning but I was tired so I crawled into bed and fell asleep. I woke up few hours later, put the kettle on again and took a shower. I poured myself some tea and glanced out the window. I had not been back to this city in a few years and I was now eager to see what did not change, and what did. I finished my cup of tea and ventured out of my room. The TV was still on and apparently the situation got much worse. People were sitting on their rooftops while others rowed by in boats. I did not want to dedicate myself to watching something I could do nothing to repair so I just passed by on the way out.
Part 5 – Darkness
On the way to Bimhuis, a massive center where we attended the jazz night in one of the bars within the building, I noticed an increased difficulty. The forty minute to an hour walk began to become harder, almost causing a feeling of dizziness and liquid legs. Surprised that I could stand at all, I did make it, however was nearly completely incapacitated to stand or move around when inside. I began noticing increased difficulty moving through the city as well, and despite my nature to ignore and move on, I could no longer.
Holding on to the walls of buildings lining the walkway, I became a man of the city in a completely different way, relying on the structures to support my failing body. Immediately my path relocated closer to the edges, allowing the possibility to grab something to lean against to support the quickly decreasing ability to balance myself.
I arrived back in U.S. on a previously unscheduled holiday return to see a neurologist to assess this sudden difficulty of normal functioning. I drove to the offices marked by a tower and parked my car. The receptioning who could not have been older than me gave me a clip board with numerous sheets of questions to fill out. Reluctantly, I filled it all out and was anxious to see the doctor, hoping to get some pills to improve my health. I was escorted to the little room, where I climbed onto the examination table and sat there reading the posters on the walls. The Indian man wearing a white lab coat walked into the office where I was sitting on paper stretched across the table and sat down lazily on one of the more comfortable chairs provided for the entourage of patients. Almost yawning and looking bored, he asked me what the problem was, in those terms. I declared my list of symptoms and he proceeded to perform an exam that would become very familiar to me. Hammer to the elbows and knees, standing with eyes closed, walking down the hallway and touching my nose with my index finger. Somewhat confused as to why such a level of exams was being performed I though that perhaps its all just routine. I did not really know what was wrong with me, but I guesstimated that it may be a pinched or compressed nerve somewhere in my knee, following the injury I had. The fact that I had the same injury on both legs made even more sense to me. In fact, the simple truth that I continued walking around in pain solidified in my mind that the compensation could have re-inured the older wound. I later learned that the exam consisted of CNS or central nervous system responses but this was dark water for me at this point and as most neurologist, he did not comment while doing the exam. I later learned that most neurologists do not comment, which drives a person crazy. Then again, we are not really people, we are one condition or another just sitting there. Anyway.
I asked him what he thought and he told me, without hesitation, that it is MS. A little surprised and really without complete belief I asked him what I should do. He pointed to the receptionist with piercings in multiple places on her face who looked at both of us and listened for instructions. “Give him some MRI locations,” he told her, then looked at me and said, “you need to do MRI of brain and spine, if you have to choose one, do spine.” “I need to leave to go back to Europe soon,” I told him. “You should see someone there, do not neglect this,” he remarked and walked away.
The cork board on the wall was covered with MRI business cards, which the pierced woman surveyed. She picked a few out and made copies of her picks. She handed the papers to me as she put the second copies into my file. “Good luck,” she said as she closed my file. “Thank you,” I replied while ruminating the life sentence I was just given. I walked out and to my car, still dumbfounded at the events of the past fifteen minutes. I was in for a world full of shit and I quietly understood. I called my mother to deliver the news and continued to swim in my own thoughts and reflections.
The return to Amsterdam came a week late, thanks to another neurologist my mother and I went to see. This guy, whose office was more of a psychiatrist, stirred a panic based on what he saw on the MRIs. Sadly, although his arrogant approach proved to be unfounded, his ideas for the treatment needed were correct. Regardless, traumatized, shocked and scared I left to go back anyway, knowing that nothing would ever be the same.
The entire flight back to Amsterdam, I kept checking my knee reflexes and the vibratory sensation in my feet. How could this have happened? How could a God take away my father and grant me this fate at the highest point in my life. My world was ending and I was conscious to see it end. What could I have done wrong in my short life to deserve this. I read everything and I knew what I could be in store for, and at that, to have such dramatic symptoms so early on was a very bad sign. I knew that all my friends, and everyone I knew in Amsterdam would continue their lives and have adventures and experiences that would now become unreachable for me. I also knew however, that I should get the degree at least.
Life in Amsterdam was hard, the trips to the store and back were difficult. I went to class once a week and I adapted a tram route that shortened the walking distance significantly. I continued to force myself to do simple things like going to a cafe or a coffeeshop, although things like wandering around the city became restricted for me and tormented my emotions.
I wished I could do something to ease this suffering but the only drugs I was offered were drugs that supposedly slowed progression. It never satisfied me and I never used the injections for that reason. My situation was bad enough that I needed help not a preventative measures. In either case, I was on my own in a sublime city that was closing to me quickly. I had a partner and a lover yet even that was torture, although without her I am sure it would have been worse.
She came to me, one day, and asked me to go with her to a movie about twenty minute walk away. I did not want to, but I agreed for her. The two of us walked down the curved road to meet her friend, that I knew as well. She did not like bikes, and I could not handle one, thus we were the only people without bikes but at least we were together. We walked and I took breaks and we kept walking. The light drizzle got my leather jacket wet and I was anxious to get to the theater faster, but I could only move so fast. The rain got harder and my head was wet when we finally reached the indy movie theater. The movie was in French and the subtitles were in Dutch, hence I understood nothing. My throat became more and more sore as we sat there and I was worried about the return home.
The movie ended and we walked outside, my suggestion for a tram was denied, since he had a bike and she did not want to separate the group. So we began our walk back, it was drizzling again and he walked alongside us, rolling his bike. The walk became harder and harder and the breaks on the now wet steps of staircases became more and more frequent. I was losing the battle against the uninvited guest. I got kind of dizzy and my balance deteriorated even further. I held on to the penis shaped dividers every chance I could and yet if that or the breaks helped it was for very short periods. I placed my hand on the next divider and slipped of it, hitting my face on the brick covered ground. I could barely move and could not get up. The both of them rushed over to help me and pulled me up, sitting me down on nearby steps.
“What’s wrong?” She asked, placing her hand on my forehead. “You’re cold,” she said. “Yes, I don’t know what happened,” I responded. My lip was bleeding bad and the night helped to mask the severity. We were not far from our building and he took his bike to the bike parking in the basement and came back to help move me. With my arm over each of them, I made it back to my bed and thanked them for helping me. I laid in my bed for half hour or so and proceeded to check the damage in the bathroom.
My lip was split and fat. This was unbelievable, but my walking slowly returned to its previous state. I did not know what happened and I still, really, do not.
Queen’s Day, the biggest national holiday, proved to be the most difficult. With all traffic shutdown the entire city center had to be covered on foot and to me there could be nothing worse. So in the spirit of an experence that I could not let pass, I walked with everyone, using every bit of energy I could and stopping for breaks often to sit down on one staircase or another lining the streets of this ancient city. It took an hour to get to Museumplein, an area that a tram would reach in about ten minutes. It was, as it always is, a central entertainment spot. Crowded beyond belief, we all just stood and watched the stage with variety of entertainment. Tiesto was supposed to play in the evening but I could barely stand as it was.
Pulling out a joint out of my pocket I lit up, perhaps to make myself a bit more relaxed in the already stressful situation. I passed to my Israeli friend, Gal, on my right and offered to everyone else. Gal and I smocked the rest and soon moved out of the crowd to the outskirts of the collection of bodies. Rest of my usual group of friends joined later and although sorry to miss Tiesto, one of my favorite DJs, I agreed that we should head back to a more relaxed location. So we headed back. Close to our building I could hardly walk, stopping for breaks often and holding on to the shoulders of my lover. “You are pressing hard,” she said and I could not answer anything but “sorry.”
We got ridiculously high, and it was amazing, the three of us were relaxed and I felt like a human being for the first time all day. I could do what others did, at least here, in relaxed setting where no function other than laughter was demanded of me. It ended up an amazing night, yet the torture of the day haunted me. How could I spoil such a day, but in the end I did get to see it.
Of course in such a sea of people I kept an eye out for others who have received the gifts of disability from God and of course although very few, I did see people in wheelchairs. I would continue to look for others the remainder of my time in this gorgeous place.
Sitting at a cafe few days later, I saw a man riding a tricycle and wondered why. I then saw him get off and struggle to get to the door of what I can only assume was his apartment building. The man could not place his heel on the ground, not only because his legs were shacking but because he could only touch the ground with his toes. It all seemed very similar and I felt the man’s agony and suffering in a way that few did. Perhaps the man had meaning in his life, perhaps he would even call himself happy, but I knew the truth, life is hard enough and he had to live with the same trespasser I had, or maybe worse.
I continued to smoke and write my thesis, I don’t know how I forced myself to finish in this kind of a state, but reading it now, it was good work. The Dutch professor took advantage of me and I got screwed on my second reader, whom I had the ability to choose and yet one was chosen for me. I did not care, I just wanted to graduate. Of course the choice was of a man that I disliked greatly to begin with and was not excited to see as my second reader. Regardless, in my thoughts of certain failure I just wanted it to be over.
My choice was a woman whose class I was in the first semester and who loved my writing style and my views. Sadly, I did not get the promised letter of recommendation or her as my second reader. I had asked her earlier and she agreed, but being unlucky in my adviser being the head of the whole department, my choice was neglected and his made permanent. In retrospect, I could have fought it, but I was in no condition to really take him on.
11:56p.m. somewhere in Europe
Suicide he thought, Escape. The doctors had told him that he was dying, yet it was
more than that. They told him he would suffer greatly before he died. He wanted to be
back at home, or what he knew as home, yet he could not go back, for what he knew as
home, as his life, was gone. He wanted to be in his past, which had faded away, leaving
only memories. This curious neurological phenomenon which Arthur Schopenhauer
identified as the source of madness was the only thing remaining of the distant childhood
and happiness. Buddhist philosophy kept going through his head, which stated that life is
suffering and the elimination of desire is the only path to peace, yet what about the
negative effects on life. It is simpler to say to man who wants a lot to stop wanting but to
a person who gets evils, all he wants is to be free from evils, not gain anything new.
He paced around his room, as much as he could, and wondered what has become
of his life. Had this all been a dream? These and many other questions clouded his mind,
to which he added by smoking the freshly rolled joint.
Sitting in front of the computer, blankly looking at the notes that he had been
keeping about his life, he thought to himself about his childhood. He had kept notes on
the computer because after all he was living in a technological age. As far as his
childhood is concerned, he thought about his life in the family country home, surrounded
by forests and cool summer evenings. The memories were so vivid and he just wanted to
be back there again, experience it again. Those days are far away now and he is alone in
this picturesque city, longing for a different time in his life. The days here are numbered
and soon he will be in a place he had come to see as home, but he is scared that the
shadows of this city will follow him back. Being ill allowed him to reflect on the whole
concept of being ill, it is odd to conceive of being not like the rest. Although, he often
thought of himself as being different, this was a physical demarcation from the rest of the
people he knew. He found himself alone, with people sympathizing but not truly
understanding what he was going through. How could this have happened he though to
himself, how could this have happened.
He got up and walked over to the fridge to get some left over pizza. He placed
the slice of cold pizza onto a plate and started up the microwave. Upon the completion of
the cooking, he took out the lonely slice of pizza and walked over to his lonely table and
sat down to eat. He was alone in his room, and although he can hear the noises of people
partying outside, he was disconnected from them. He was alone with his slice of pizza
and his glass of juice, which was already standing on the table. He ate his snack while
watching shows on his computer, since he had no TV; he watched all his entertainment
on the computer. He lay down in his single bed soon after in a daze and flood of
thoughts; it was complete silence outside, almost eerie. He fell asleep soon after in his
single bed, having put his computer on standby mode.
11:00a.m. still somewhere in Europe
He woke up tired and proceeded to his morning rituals of showering and washing
up, after which he grabbed his shopping bag, which he had bought at the store few days
before and started on his walk to get groceries. He ran into some people he knew in the
hall and exchanged a few nice words, fairly superficial and meaningless. On the walk to
the store, he saw a pigeon with its leg stuck between the bricks in the brick covered roads
of this ancient city. He wanted to help the bird but did not know how, so after some
moments of sad gaze he continued on his way..
The shopping experience was as usual. He had to replace a lot of his food which
had gone bad. Food there went bad quickly since by the time it hit the shelves of the store
it was already at or near its expiration. He found the things he needed, added some
chocolates for his minor pleasures and headed back to his room. The bag he carried was
full and heavy and it was not easy for him to carry due to his condition, he managed fine
though and upon the entrance into his room he pulled an apple out of the bag and held it.
This apple too, was on its way to meet its end, this apple too was lonely, he thought to
himself. He held the apple close to his heart, as though it was a prized possession, he
held it and stroked it as a mother would a baby. The apple was his friend in many ways, a
friend who would listen to him and feel with him. The apple’s life had come to meet its
end in his hand and yet the apple did not talk back to him. Would the apple rather rot
without being eaten, he thought. His misery was building up, especially seeing the
beautiful weather outside his window, and people enjoying their life in boats, moving
past him on the canal. He wondered yet again about the demarcation, how being ill
completely removed him from the world and into his own problem. He thought about
how he once was, how he could have been. Nothing seemed to make sense to him, and
he found solace only in his misery.
His day was spent reading, browsing the internet, and looking out his window. He
hit his joint from time to time, he thought it allowed him to see beauty of the world in
ways sober people do not. The special smells of cool summer evenings, the ways the
colors of the leaves had almost pierced his vision, with color of unreal green and gold.
He wanted to be free, to be alive, but he couldn’t. He got his pen and began to write in
his leather bound journal about his epiphanies of life.
How silly I find the world of human existence, really. I can not understand how
pathetic the life of the species really is. The life of fighting and war amazes me, war for
control of territory, for supremacy of ideas and make belief powers. How simple and
ridiculous the whole existence is. Like ants, humans will colonize a plot of land and
claim it as theirs, how they will fight to allow only certain others to remain within and
harshly punish the unwelcome ones. How simple, that society has found ways to demean
and torture others, based on their skin, or belief.
He wrote extensively, and realized what pathetic excuse for life, the humans had.
Perhaps he thought he had achieved something, something that he hadn’t before. Perhaps
he had realized the nature of reality, it is impossible for another mind to know what
insights may be gained by one will to confide in a royal gala.
He looked out his window yet again, he looked down towards the brick laid road
and thought to himself, what if. In a curious questioning of the extent of reality, he asked
the apple what if. He leaned in some more, before he knew it; he was falling, silently,
with his friend in his hand.
Being daytime many people quickly surrounded the ghastly sight, wondering
how, why, who. He was gone; the blood had filled the spacing between the bricks in an
almost artistic pattern. The apple had gently rolled out of his hand and lay nearby, in a
pool of blood, broken by the fall as well. A puddle around his head, his eyes still open,
his body in an odd position facing down on the ground.
His family had come to get his body from the morgue, a gruesome sight for any
relative. He flew back home in baggage, a piece of luggage to be checked and cleared.
An autopsy was later ordered which revealed an infection which could have been cured if
The doctor, the guardian of human health was always a somewhat magical figure possessing knowledge about our own bodies. The medicine men of tribal societies were often treated as mystical beings and to some extent that continues today. I, like many others, grew up believing that doctors are those that one visits when a malady reaches a bothersome point and a medical intervention is required. This is typically addressed by a primary care physician or PCP. That type of doctor is well rounded in their understanding but usually not a specialist in anything. This is but the tip of the iceberg of medical approach. When a malady beyond the PCP’s understanding is presented, a referral to a physician in the particular field is made. One would think that that field operative would offer their impressions to the PCP and together they would try to help the patient, but it does not work that way. For many PCPs, sending a patient to a field operative is, in essence, removing the patient out from their sphere. The field operatives vary as well and are eager themselves to move a patient along. Chronic, severe illnesses present a conflict for the physician as it is rare that anyone wants to approach an illness on their own, so they side with accepted approaches regardless of the human being sitting in front of them. In fact, one is no longer a human being, one is the illness that the field operative diagnosed.
So what of help? Isn’t the role of a doctor to help? Poorly understood conditions do not waive the mandate of a doctor to utilize their knowledge to help even if they cannot cure but that was not the case in my experience and as I speak to more and more people, it was not in theirs either. The frequently cited “do no harm” aspect of the Hippocratic Oath is used as protection of the doctor but really, the rest of the oath is rarely mentioned. For the sake of enlightenment here is the “modern version”:
I swear to fulfill, to the best of my ability and judgment, this covenant:
I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.
I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.
I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug.
I will not be ashamed to say “I know not,” nor will I fail to call in my colleagues when the skills of another are needed for a patient’s recovery.
I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given to me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.
I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.
I will prevent disease whenever I can, for prevention is preferable to cure.
I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.
If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.
Of course much of the blame for medicine can be placed on capitalism and the pursuit of ‘science’ regardless of the patient. Let us be clear, to continue research the object of research must remain. Thus, those with chronic, poorly understood diseases are likely not to get real help. Many conditions have drugs, yet in many cases the drugs do not work well, if at all, since the disease itself is poorly understood.
The following are my notes of the various ‘doctors’ that I have encountered. I refuse to see a neurologist ever again based on these experiences. The physical condition is bad enough, but the emotional and existential destruction was indeed delivered by people with letters after their names. These people placed as guardians to protect patients from conditions such as this or at the very least to do whatever they could to help appear to be more focused on the protection of the disease from the patient. The disease was claimed and the patient is just a carrier who is now expected to give up their sense of autonomy for these people to play with their disease. Patients come and go, this mystery illness has been around for 150 years and contrary to what has been purported, little has changed.
After a very troubling visit with my, then, primary care physician, I was handed off to a neurologist to unload the burden. I drove to the building with the erect bell tower, parked my car and walked inside. The office had a small waiting room with nobody waiting, but the sliding window opened and I was greeted by a girl with facial piercings that was probably no older than I was. A clipboard full of paper work was handed to me and I sat down to fill it out. I was soon invited to come behind the locked door to sit in the examination room and wait for the doctor.
What was he doing I wondered, I am the first patient. After a few minutes of playing with the medical office props an Indian man in a white lab coat walked into the room, shook my hand and sat down lazily on one of the chairs reserved for people accompanying patients. Of course I, as the patient, got the prime spot on the paper covered examination table. The man asked, “what seems to be the problem?” He was sitting very low with his legs stretched out, practically yawning. I took a breath, “I noticed that I get very tired walking. As though I am dragging my legs. I can walk for about an hour and then… It seems to be worse on the left side.” He listened and then, with his hammer in hand, approached me. He tapped the spot under my knee with his hammer, my leg jerked, he said nothing and moved to the other leg which jerked even higher.
Taking the other side of his hammer, he dragged it up the sole of my bare foot. I watched my big toe curl up thinking that it was just a ticklish response and his unremarkable face did not elevate my concern. A tuning fork was the next instrument that he hit against his hand and placed on my foot, I could not feel it vibrate. At this point I began to wonder what was wrong with me. He then asked me to stand up and close my eyes, holding me above the elbow he said “don’t worry, I got you.” He already expected me to have difficulty but said nothing. I was not worried but wondered what this, seemingly intelligent, man though about my peculiar symptom. He said nothing. I thanked him and asked what he thought it was. “MS,” he said while writing scripts. Thinking that it was a joke I did not worry and told him that I was on holiday and had to go back to Europe. He looked at me, almost lighting up in joy, “that is ok, do not neglect this, do the scans and take them to a neurologist there. If you cannot do both scans, do the brain.” I looked at the scripts, MRI brain, MRI T-Spine. Hmm, what does this mean? The tattooed girl with a piercing in her nose, searched through all the imaging ads they had. She wanted to find a good location with cheapest rate for me. She found a few among the hundreds of ads they had and made copies for me. I thanked her and left with the scripts in my pocket and ads in my hand.
About a decade earlier I saw an episode of Montel Williams show dedicated to MS that made me feel so sorry for those poor people suffering with this devastating, poorly understood disease. How does one get such a disease? Life is all based on luck and any kind of measure of hard work and perseverance can only, really, be judged after the basic charms of luck are met. Thus, these people were simply unlucky or damned through no fault of their own. They had no knowledge of the cause, they had no hope.
I remember hearing that “we are closer to the cure,” a sigh of the hopeless creature. Truth is that all the ‘experts’ were never going to find a cure, the goal was to just keep harvesting new, often absurd, ideas and continue to research. I knew none of this yet and at that point, given his calm demeanor, I thought that it is not the same anymore.
This doctor told me nothing. It was like having the flu but instead of any medications I received imaging scripts. Why? Just to prove what he was already sure about. Why? So he can put me on drugs. But what was wrong with me I did not know, what the drugs were I was not told, the prognosis was never discussed. No immediate help was given.
Neurologist recommended as being on top of his field was the next one. This man was more of a psychiatrist but claimed to be a neurologist as well. His office was a beautiful arrangement of Scandinavian-esq cherry wood wall unit, cabinets and his large desk that had a greenish frosted glass top. He had a few books and a computer. The familiar DSM IV was on the shelf along with other questionable literature that I had studied during my education in philosophy. After speaking to us in which he heard nothing that I said he performed his neurological exam with the same results that seemed to excite him. I knew then that I was most likely not getting out of this. He looked at the MRI scans, that I had already done, by holding them up to the office window. A man so wise, with arrogance soothing out of him, produced a few grunts. “Nothing is enhancing,” he said as he looked at one after another of the films I brought. “So, what does that mean?” I asked. ” It means that the plaques are not active,” he said and put the films back into their envelope.
He proceeded to perform the neurological exam again in a way as though he was showing off. He pulled a pencil out of his pencil cup and broke it in half gliding the broken end along my leg to establish if there was feeling. He hit my knees with his hammer and watched me walk along the corridor. His arrogance produced a vapor in front of him like the smell of a fresh turd and the phony smile made me nervous. “You have to contact [well known specialist] but before you do…” he wrote out several scripts for additional scan of C-Spine and blood work for all sorts of conditions including three types of HIV. “I am pretty sure of what the diagnosis is but we have to be careful and rule everything else out.” OK.
He leaned back in his over-sized executive chair and made it known that he was now ready for question/answer time. He was quite certain of the diagnosis so he took it upon himself to explain all the available medications. So, it does not help symptoms. What does it do? “Ideally it slows down the progression.” But what about side-effects? “There are many listed but my patients tolerate […] well.” Ok. I was damned and he looked at me as such, my life was over but he did not feel terribly concerned. Really upon retrospect it was not until the discovery and subsequent meetings with surgeons that I saw a concerned face on a doctor. Neurologists primarily deal with incurable diseases, some are treatable but not curable. I suppose that after all the patients this “doctor” had seen, sensitivity had dropped to zero, maybe it was never there. To me of course the situation was utterly different.
MRI facilities have a code of not saying anything to the patient, furthermore the radiologist report of the scans is only sent to the prescribing physician. I had become exceptionally well versed in the jargon and even in image analysis since but at that time I anxiously awaited Dr. G’s assessment of the received report. On the day after I was at the General Practitioner’s office getting the blood tests done when I received a panic call from this neurologist stating that I immediately need to check into the hospital to receive IV of ACTH, “well, maybe steroids will work,” he added. My GP was already running around the office in a frenzy stirred by this man and wrote the hospital orders for me. He called this neurologist and the man said that there is an edema in my Cervical Spine . Incidentally, the first thing this aged GP on the path to retirement checked was the pulse in my cold feet. How close to the truth he was I only know now but regardless I now had orders to go to the hospital and receive IV of one shit or another.
I returned to the office of the wise “doctor” with my films, he walked in a bit later. He is the “doctor” after all and I wait for him, was he smoking outside, sipping coffee or seeing another patient, I do not know but either way he strolled in with his phone on his hip like a cowboy’s gun, the air of importance filling the room. “Let’s see the films,” he took out the films and held it to the window producing a “hmmm”. Indeed there were plaques but none were enhancing. During an MRI an injection of a chemical called Gadolinium is administered which binds with active plaques signifying disease activity or what is known as an “attack”. In either case, nothing was lighting up. Suddenly the change of flight, the panic stirred, all seemed misguided. “What was in the report,” I asked. He pulled it out of my chart and realized that nothing was said about active or enhancing so where was this man pulling those details from? He repeated the exam to make sure he had not lost his mind and the results were same but what of the IV? “You do not need to do it,” he said as we all walked back to the counter. He said something to the receptionist who waived us away “there will be no charge for today.”
This experience scared me the most. The situation was grim, this asshole painted a rosy picture for me, containing a normal life with daily injections of some sort of drug that did not help symptoms and MAYBE slowed down the disease. He called his old medical school to discuss my case since it was very aggressive for my age and disease duration. He, in a way, found himself overwhelmed by me but would never admit it of course. Truth is that his original plan was right. ACTH is a natural hormone that mimics the action of corticosteroids. At the time, either would help but he chickened out when no activity was present. In reality, a fact that many neurologists choose to hide is that steroids help symptoms of this particular type of MS regardless of activity. This is an inflammatory disease and anti-inflammatory solutions do help symptoms, which at the end is the cause of suffering.
A “doctor” who was recommended by many, including Dr. G , had treated my grandmother for Parkinson’s but we will get to this saga a little later. This man’s office was quite different. The examination room was small but had a little counter that was basically a two person bar that had only one bar stool, a symbol of power no doubt. In any case, I was told to lay down on the exam table and a series of neurological tests began. A different test was done to my hands, more for his own amusement as there is rarely a positive result in his patient pool, but my finger jerked sending this man into excitement at my misfortune, “You got Hoffman’s,” he announced as though I was the lucky winner of some sort of a jackpot. At that point the rest of the tests meant little as far as my diagnosis but he performed the rest before sitting on the bar stool facing a young, terrified and doomed patient. “Is this Multiple Sclerosis?” He had a way of speaking by posing questions and immediately answering them. He went over some of my CNS findings and said that it is “likely.”
Everything I had read started to pour out and while remarking about the supposed intellect that I exhibited by asking questions he quietly already saw a dead person in front of him. He told me about patients he has known that lost feeling of particular body parts and nothing else. I bargained with other possible diagnoses that he dismissed. Surely, there must be something. You cannot even test for MS, so what else could it be. “It may be stenosis of the spinal canal,” he said and we moved into the corridor where he had a light machine on the wall to view my scans. He said that he was looking for possible stenosis. The idea was right, the body part wrong… He would neither find it, nor really look for it, but pretended to establish the appearance of doing all he could was paramount.
He remarked about Tysabri as a wonderful drug, but it caused PML. I did not know much about this drug since at this point, it was taken off the market. I did not know what PML was and he did not bother enlightening me. He told me that I had to go on the injections immediately. Since I was on holiday from school, I had to go back. Upon hearing this, he said NO, you have to go on drugs, leave school and focus on this. “You will be paralyzed in a foreign country if you go back.” He gestured my mother to come into his sloppy office to receive the news that we already got several times. he told my mother that if it was one of his many children instead of me, he would medicate immediately. His office had boxes as though he had just moved in, other debris and of course all the props of pharmaceutical residue, COPAXONE, REBIF, AVONEX. Another one that is not pushed as much is Betaserone, which was the first one. Together they make CRAB, the typical MS cocktail. Whichever is more prominently pushed is a company that pays these people the most but at that time it was all inconsequential. I filled out the order for one of them but then decided to wait and thus I left.
My grandmother who was treated for Parkinson’s by this same man was not recognized by him nor his staff. She had been medicated for 3 years, experiencing hallucinations and a variety of severe side-effects when he told her that the diagnosis was wrong. I learned this later. What can seriously be said about such a creature. Assumption that I was a dead person anyway certainly made him feel decreased inhibitions in forcing me to do something FOR HIM. The drugs in the end would not help me but he may reap benefits. It was not so much fear but disgust that washed over me after a few days. How dare he suggest that I would leave one of my greatest, nearly completed, achievement in life. NO. Fuck that. At the end I left with nothing and flew back to Amsterdam.
6 months later..
I scared this neurologist displaying the fact that he, like many neurologists, did not deal with chronically ill patients like me. In fact, as he reviewed my case he remarked while looking down and away that “it is the most common in young people,” referring of course to Multiple Sclerosis. He did not offer any drugs as he was just eager for me to evacuate his field of vision. It may seem odd but this has happened a few times since. It is a strange feeling to scare professionals who are supposed to help. Steroids help and anyone can prescribe it but again, I did not know this yet. I left with nothing.
A friend of a friend, this doctor asked me to undress and put on a paper robe. I don’t know why, but I did. Her exam was same with same results although she acted neither scared of me nor treated me as damned. She noted her findings, ruling the MRI scans as not the most significant. Yet… “We need to wait for another attack to make a conclusive diagnosis,” she said as she pondered my state. Many aspects of CNS exam pointed the same way and out of respect she could not just throw such a diagnosis around, especially on a friend of a friend. I still left with nothing but a nerve conduction study that I asked for. She called a few days later to announce that I had Peroneal Neurepathy in my left leg, which was much worse at the time. I had researched this condition on my own and the symptoms fit. It made sense to me. I diagnosed myself first only requiring proof and consensus with a professional and I had it now. Of course this did not explain the Central Nervous System signs but…
I learned later that this doctor had a neurological disaster in her family which most certainly made her act softer and more careful, not to mention the fact of personal friendship connection and not a walk-in of the street. The neuropathy eased my mind somewhat as now there was a problem fixable by a surgeon. Surgeons fix things after all.
I found this surgeon as one of few people who performed the surgery to free the Peroneal nerve and I was soon accepted for a consult. Excited I waited at home for few months, then the waiting room, then in the exam room. Of course before being honored by the good doctor, variety of staff came in and out to do all sorts of tests. The final staff member came in smiling, her job was to do the neurological exam and here we went again. CNS problem ended the possibility of such procedure right there and although I saw the doctor after, he seemed to feel sorry for me and told me that he cannot help and to him it seemed more like MS .
This was a difficult blow although not necessarily unexpected. My disdain for ignorance had indeed raised my own questions. I had studied a significant portion of literature and knew what every test neurologists performed meant. But I had a nerve conduction test, which was enough to accept me into a long line of people waiting. Did that mean anything? He hit my knees, asked me to walk around on my toes, on my heels, I wobbled with my eyes closed. I failed all his tests. A hand off was prepared and an appointment was made with head of neurology and I felt dead again.
By strange happenings I ended up sitting on the table of a spinal surgeon, just looking for answers Neurologists failed to provide. Earlier visit to an orthopedic surgeon proved useless as all my bones and joints appeared ok. He did find it strange that my symptoms were so severe and suggested stretching. This surgeon ran into the room and swung his arm and hit me with the blade of his hand directly in the spot under the knee used to test reflexes. I had removed the films which had lesions before I gave them the envelope. I did not want to give ideas and ensure that this surgeon would look honestly at the pathology. By the time he came in, he had looked at my MRI scans outside and came with a diagnosis in mind. “You got Chiari, thats why your balance is off.” “What, whats that?” “The tonsils of your brain are descended, pushing on the spinal canal. You can see it here.” He showed the scan and pointed out what he saw. “It is fixable.” The words penetrated hard and deep, the ability to fix this. He had called and referred me to a neurosurgeon who was one of a handful of surgeons who did this surgery. If this surgeon did this himself, he had enough. This surgeon who saved the lives of others has given a gift of unmeasurable proportions, and so I waited.
Naturally I researched and researched and indeed all CNS signs could be caused by this. Having my brain pushed up seemed drastic but I would do it. It made sense, but it was rare. I still thought MS was rare at this point so why not something else. It is a birth defect and not the immune system turning on the body for “some” reason.`
I never met this man but spoke by email with his nurse. He ordered more scans and seemed to be on track for me to get on the table and have my brain repositioned. Until the meeting in which the doctor, his nurses and radiology staff met to discuss my case. “You have demyelination,” she said to me. “You need to get in touch with the MS people at the university.” “But Dr. C Surgeon diagnosed it as Chiari,” I pleaded. “Your tonsils are descendant but they are not pushing on the canal. We think its different pathology.” That was the end of this doctor. Somehow surgeons seemed closer to my heart, maybe because they actually fix people. This was the end of my surgical search but I would see them again…
It all sounded too good to be true. As much as I had grown to hate neurologists, surely they would see this too. But then again, it cannot be treated with medicines so maybe they looked at the scans from a myopic point of view. Regardless, the university assessment was geared towards surgery and there was less chance that the particular finding they were looking for would be overlooked. Demyelination is the process by which myelin is destroyed, creating the lesions on the brain and spine. Myelin is the protein surrounding nerve cells that is responsible for fast communication. Damaged myelin slows down the signal, exhibited by symptoms. It was very sad to realize this and once again I felt dead. The nurse’s tone changed from friendly to you are damned attitude. There is nothing we can do. Of course they now wanted to hand me off to the MS team, but I already had an appointment with head of Neurology. Maybe he would have an idea of why my diagnosis was so shaky yet my symptoms so severe.
The head of Neurology took several months to get to see. Leaving neurologists’ offices empty handed seemed odd and pathetic but this Indian was no different. Spending hours together, he delivered his sad story of how he had a heart attack at the age of 40 and almost died but was saved by a surgeon who was now dying of cancer. Everyone’ sad story is the saddest for them but telling that to a patient with little to no chance of improvement was ridiculous. I talked to him about India, as the idea of traveling was still very fresh in my mind, I wanted to see it at some point. He said that my neuropathy study was not done right and I had MS. Now the choice of the CRABS or other goodies the MS Specialists had up their sleeve. And so I left this man with nothing but a referral to the next quack.
It took months to see this man and for no reason. He sadly told me how he couldn’t walk to the end of the room but now he could. I was 24 years old and I could maybe walk that far, maybe not. Why do I care about his sad story? He was lucky to be struck by a disease that medicine knew something about. They knew NOTHING of MS. Nothing. Young people were destroyed, some quicker than others and medicine just looked the other way, throwing their hands up. You are just damned. One useful piece of info that came out of this ‘doctor’ who prided himself on making more money seeing patients than his job as a professor was his friend, a neurologist close to my house with whom I would meet some time later.
MSS stands for Multiple Sclerosis Specialist
The waiting room was very large, full of neurologically damned people. People in wheelchairs, with walkers, canes. Nothing had really changed in 100 years, yet they said that it did. If anything, many of these people were worse off. Now with additional symptoms, courtesy of the drugs that they took out of trust in their ‘doctors’. Nothing was predictable because nothing was really known. How can a patient who has attacks every 10 years feel any benefit out of the drugs? Remissions unpredictable, attacks unpredictable. It was more of an international agreement to feed patients such and such just to pretend that something is being done. Realistically, these doctors were not sick. How could they know what it is like? This woman was younger than the rest but perhaps even colder. She came out in high heels holding a piece of paper and called my name. I already had a very hard time walking with my left ankle not bending regularly at all and I used all my power not to trip on my self. She led the way to her office which was not really an office like the others. This was a professor’s office, with books, desk and student papers. She wore a lab coat, but that was purely customary, pageantry. There was an examination table but even that was different. It was higher than the others, as though a stage to display the damned. This was the setting not to help but to observe. A live human cadaver. She hit my knees with her hammer, dragged the end against my soles, and the rest of the standard CNS function tests. She had no desire to help me, I was dead.
She looked through my scans and even commented that my spinal scans were not really consistent with MS diagnosis. The chief radiologist had commented the same way, that based on the scans of brain it did appear to be MS but spine pointed to something else. She was not sure what to diagnose me with by looking at the exam but my rapidly progressing condition forced her to order more tests and throw a diagnosis at me of Progressive MS. Why not, when in doubt… Anyway, all sorts of rare disorder tests were ordered. Ok, but “what about steroids?” The response to this was coming from a ‘scientist’ not a ‘doctor’ and it was simply stated, “steroids help everything, why would we give you that…” Hmm, so I am suffering and steroids help but I cannot have it because I need to be diagnosed and put on drugs which are shown to help only 30% of those on it and even that is questionable given the remissions that happens anyway so how to really know efficacy. But wait, no drugs help progressive MS so why is this even an option? “Well, even though you seem to have progressive MS, we will treat it as though it is Relapse Remitting,” she answered and I was silent. How can someone who knows nothing of the cause of this dispense drugs like candy. It may not work but you will get worse anyway so why not try, right? Actually people in multiple year studies have demonstrated no real results and moreover, felt worse on the drugs. Of course there are those who will thank their doctors and treat these drugs as religious artifacts, but isn’t it always the case that some will be found who are like that? Months of waiting has resulted in not only being denied actual help but an insult to go along. We are all dumb, damned patients that are now only good for the extraction of money and used to experiment and observe. I left, holding on to walls and unable to bend my foot with no help, nothing.
Soon after this disastrous appointment HBO began showing Lorenzo’s Oil movie. This true story movie chronicles the severe decline of a child, struck by Adrenoleukodystrophy or ALD. A neurological disorder shutting down EVERY system of the body, affecting children most often. Crying while watching, I could only be thankful that I had the power of suicide. My research changed to methods of suicide that were least painful and most effective. I wanted to just go to sleep. Medicine had failed me and my only definite prognosis is worsening. There was no way I would submit myself to these animals to feed off me, I rather die on my own terms.
Chemotherapy was loosely suggested as well, which just infuriated me. I once though that specialists in Multiple Sclerosis were people who were personally affected by it but what I learned is that that is not the case. Vast majority just found a mystery disease more interesting and the power to try all sorts of toxins to see what would happen was, exciting. I remembered a story of AZT, a drug developed for Cancer that was deemed too toxic for human consumption but when AIDS came this same drug suddenly became OK to give to damned patients. Many died from the drug before AIDS killed them but a mystery diagnosis opens the doors to use whatever means are available. MS was and still is at the time I am writing a damned, mystery disease, hence Chemotherapy, Tysabri and other toxic chemicals are given to diagnosed people under the guise of ‘treatment.’
She sent me for a lumbar puncture. A process that I have since learned was much less of a big deal than that first experience but regardless. It was inconclusive and left me with no Dx and no help.
This neurologist was the one connected to Dr. A as a past student, learning nerve conduction techniques in Electrical diagnosis of variety of peripheral nervous system problems. Another Indian man, whose office was in a building adjacent to one of the major hospitals. I will never forget the face of a wheelchair bound boy sitting in a waiting room with his mother, who was whipping the drool of this child’s chin. What could this doctor do for this child? For me? He came out and called my name. I sat close to the locked door so I would not need to walk far and I had a wall to lean on. I struggled up and followed him in. My ankle was not really bending, so I dragged it while holding on to walls. He watched he struggle and scribbled in my chart. We walked into his office which had magazines laying on the side of the desk where two seats for patients were, a computer and some papers decorated his side. I handed the CDs of my MRIs to him and he put it in his computer. “You are not from here,” he said looking at my name. Yes, I am from Europe, I was in school there when this started happening. “Oh, we love to travel. I love Europe,” he commented. That’s great but I cannot even walk, why tell me this. He began to look through my scans. “You got a lesion in the brain-stem, whats that called, hmm.” I turned and looked at my mother. “I don’t know,” I responded back. “Well,” he said, “there are two options we can make. One is going on one of the CRABS or we can try high dose steroids. I am not sure if it will help, nothing helps progressive and that seems what you have but I am willing to try.” He wrote out a script for outpatient infusion of 1g a day of SOLU-MEDROL for 4 hours a day for 5 days.
We proceeded to his exam room where the same series of tests were performed and he looked at my blood work results. “You Vitamin B12 is very low,” he remarked. Indeed, my level was quite below normal but the other ‘specialists’ did not even pay attention. “You know, B12 deficiency may be causing all your symptoms,” he commented while still reading. But what about brain lesions. “It can cause that too, I had a patient that did much better after increasing B12 level.” He pulled out his rx pad and wrote out a prescription for B12 and syringes. “You have to inject it, levels this low probably means you are not absorbing it.”
I walked out of the hospital on the fourth day of treatment without holding on to anything. The joy was difficult to believe. I could not walk far or fast but I was better. After the 5th day I went back to see this man. He was happy that I got better as it meant that it was not progressive. He prescribed steroid pills that I would need to take as a taper down measure. He warned that I should watch salt and that I would most likely gain weight. That was fine with me.
My return again was in a few months during which I continued to improve. I was almost OK. He was surprised, ordering liver function test and more MRIs while continuing steroid pills. I continued the pills for months, getting the liver function tests often. Liability management indeed but he was helping me so why not help him. The MRIs curiously manifested themselves in a strange pattern. My spine cleared up entirely, becoming what is known, in radiologist jargon, as “unremarkable.” The brain however did not appear to change BUT the enhancing lesions seen at the time Dr. M looked at it were now not lighting up. Incidentally, progressive MS hardly has any brain lesions, realistically it is a completely different monster. This was known at the time hence the confusion of how to label me. Dr. A laughed when I said that this was mentioned to me as I was quite young for such diagnosis and would be an anomaly although it does happen rarely.
My last visit to this doctor came almost a year later. I ,of course, wanted more steroids, they were doing wonders for me. Yes, I gained weight but it was not too much and I had a life. I got a job, I was going out with friends. I could not run but I could walk, quite far. I was able to hide my condition once again. Nobody knew. I asked for more steroids but something had changed with him. Eight months of steroids and now 90% improvements scared this man. He suddenly told me that I must go on one of the CRABS. But why? “You are not enhancing anymore, you do not need more steroids.” I want all symptoms gone. He smiled, “I did not think we would get this far. Now you have to choose one of these, I don’t care which one.” “Well, I should read more then.” “I won’t see you for a year,” he said and laughed. He would not see me ever again.
The first doctor in a long series of quacks that gave something to try. I did 5 days of IV steroid which made me feel better but still nowhere near where I needed to be and then, the magic drug which cost next to nothing pulled me out of a deep hole. Sadly, it was not a complete recovery and much of what I lost remained lost but to have most of it… So, the disease with no real treatment had a hidden approach. But this was not hidden, everyone knew. Why they did not want to help I do not know and perhaps it is unfair to make my own conclusions but when a ‘doctor’ tells someone they are essentially fucked, give them what will help and what they are asking for. It does not ‘treat’ MS but it does subvert the immune system from destroying the nervous system and most importantly, it helps symptoms. Yet, these so called ‘doctors’ held this information to themselves and I did not know. Steroids have been accepted for treatment of attacks but even then it is much less than the dosage I had, why? In a situation such as mine, the judgement of the ‘doctor’ plays a significant role. I am already here, I am already screwed, help me. Help me anyway you can.
Sadism is perhaps the best word to describe it. Patients are stupid, helpless, hopeless. They will take anything. Which is even more reason to give them whatever is known to help instead of what was decided to kind of slow down the disease, which in itself is VERY questionable.
Almost 2 years later
Upon renewed worsening I saw another neurologist who was so scared of me that she gave me what I wanted but only partially. She hit my knees with her hammer and watched me walk. Her face changed from smiling and welcoming to what kind of casket do you want. I kept asking for pills but according to protocol I had to get an IV first and so I went to the hospital . It was for 3 days instead of 5 but it was 4 hours each day Of course much more money was made from the hospital visits and so I had to capitulate to the machine of finance. Upon seeing her again, she admitted that my case was beyond her and I should see a ‘specialist’ that was close. OK. Pleading for something I knew helped did not move this woman. I was an ignorant, damned patient anyway and as sad as it was for a physician, she wanted me out of her sight. It is standard practice to prescribe a small dose taper after an IV treatment but I needed and wanted a high dose combination of pills which was outside of protocol because God forbid the patient actually gets better. And so…
The waiting room at this ‘doctor’ was large and revealed itself immediately upon the opening of the elevator doors. The room was nothing like the previous ‘specialists’ and in all honesty it felt somewhat better. There was nobody in the waiting room except a woman in a wheelchair with her husband who were called in shortly after. What could she possibly leave with I wondered as I filled out the packet identifying my symptoms and defects. I was called in soon after I turned in my confession and took my seat on the paper covered exam table in a room containing a computer table with a computer, an office chair and two seats for guests. A white man walked in and greeted us as he began to sift through my paperwork. He read and then turned towards me, “you need to be on DMDs.” Dmd stands for, Disease Modifying Drugs, a euphemism as these drugs are only immune-suppressants but come at a huge cost and many many side-effects. Their efficacy is questionable since the disease process is not understood. If the pathology is not clearly understood, how can it be ‘modified’? As I am sitting there looking at the posters in this room, this man wheels himself to me in his roller stool and begins his neuro exam. Constructing the perception of a more detailed exam, he threw in a few more tests that I had not encountered before; he felt my cold feet and notated it, having already known of the discovery that I did not yet. One would think that that would be something to mention to a patient with no hope but that did not stop him. “Do you have trouble controlling your bowels?” He asked, as though it was my cue to say YES. “No,” I answered, “that is not why I am here.” “Well, you know what this disease can do,” he stated as he scribbled something in my chart and proceeded to draw on the paper I was sitting on. “This is the MS building,” he said as he drew a box with 3 sections. “We got DMDs on first floor, Tysabri on second and trials on third. You need to enter the building.” He had mentioned Tysabri as being a great drug to stabilize MS. Really? What about PML? “Studies have shown that if it is taken for a year or less, the risk drops significantly.” By this point Tysabri was brought back to market due to patients’ demands for the “only” drug that had benefits. but it had to be done once a month at a infusion center, which this doctor actually had on site, and it had a risk of severe brain infection. But again, this doctor was no sick, how could he be expected to care if the established protocol dictated the following treatment.
I asked about blood flow, since my own research was starting to point that way and he responded instantly that blood flow had NO ROLE. He inquired if I was a member of MS Society to which I said “no,” and was quickly handed a flyer. A binder explaining his proffered DMD was given to me as well. Colorful binder with pictures and drawings explained the idiotic understanding of the disease and even less coherent explanation how the drug works. An absurd illustration of medical community’s ignorance wrapped in a shiny wrapper to support the use of a drug.
I told him that I just returned from Germany where I received an autologous stem cell transplant where they took bone marrow from my pelvic bone, processed it and re-implanted into my spine, to which he said that it was a waste of money because the immune system needs to be destroyed first. The attitude against the immune system baffled me but that is the way they thought/think.
I told him that I was now, on my own self-treatment schedule and was taking steroids, as a taper, that I got through different channels. He grunted, “ I don’t know what kind of taper that is, I give much less and for a shorter time.” Why wasn’t I surprised. God forbid something actually helps. He did do a good job of inducing fear and I guess that was his goal. So I agreed to the medications and filled out the forms but the feeling of it being misguided bothered me. I could not go on trials if I did Tysabri but that has been shown to help, I could go on regular injections but that probably does less than nothing. So I left, leaving the forms in my chart, a handshake and no help.
Lying inside a tube with constant banging and periodic vibrations, I ponder why I am even here. The ball in my palm is now covered in my own sweat as I anxiously wait to leave. The ball is to call the technician who, can hear me if they wished or in response to my summon. Nervously, I rub the ball debating with myself if I should just wait or squeeze it. Feeling the urge all over my motionless body I squeeze. “I need to pee,” I said, aggressively massaging the sweaty ball after a two hour marathon of images, providing little to nothing for my treatment. “Just few more minutes,” a voice answers, we are doing last images with the contrast that same tech injected into my arm. “Fuck,” I say to myself as the bench begins to move out of the tube. “We are done,” announces the seemingly twenty something guy in blue scrubs as he unlocks the helmet I was wearing to keep my head straight and still. A thought passes that I too was a twenty something guy who up until few months before was living a relatively normal life, undeterred by such, useless, adventures. Knowing that techs are bound not to say anything and my, lack of interest in what he saw, all I wanted was a toilet, so I removed the pulse meter on my finger, took off the headphones playing Michael Jackson and let go of the ball on a wire that had been occupying my hand to stand up holding the bench with my right hand, converting to a lean as I turned and sat down in an oversized wheelchair the tech rolled in, “to the nearest bathroom,” I declared and was graciously pushed to the giant, oversized door and into a bathroom, positioned right in front of the toilet, the tech put the brakes on and began walking out. With concern written on his face, he asked, turning around. “Do you need help?” “No,” I answered grabbing the bar on my right to stand up. I sighed as I finally escaped the maddening hours with myself and memories of a life nevermore.
It sounds awful, oh my God. How? Why? I cannot even imagine. Those poor people. Thoughts such as these entered the landscape of my, teenage, mind as well, as I think it does anyone confronted with seeming difficulties or deformities or just differences. Life comes with certain factors that cannot be changed and to those that are not or have not experienced it, it’s always somebody else. It is always easier, more comforting and safer to separate, thus its us and them, their problems remain theirs. Perhaps we will never have those issues. Our lives are ours and our systems, if we have been lucky enough to be in a sophisticated place, will protect us. At least we think the blanket of safety will wrap us up and comfort us. If all is well, we expect the status quo to continue, there could be problems but our systems of protection will either manage or eliminate those issues, worst case at least we can be made comfortable for the, usually, not too long a time of suffering.
This perspective is common, perhaps even necessary to exist but any kind of dis-sympathy or even sympathy belittles the agent as a source of entertainment or intellectual curiosity. One, cannot feel same then, the separation becomes larger and human race, distant. What if that somebody, is YOU. Although odd, really why not? We are all part of same species, humans are so complex, so much can go wrong and yet we are fed and feel as though the world is as perfect as possible and THOSE people were just unlucky. Indeed but it is different when it is you.
Being separated places one outside the human circle, not only are you now different but you have taken the spot of SOMEBODY, thus in essence lowering the probability for one of others, a lottery winner so to speak. In fact, one of ‘doctors’, I visited, happily declared upon performing my exam, “you got Hoffman’s,” and the winner is, I suppose it was rare for him to see but very sad to me, however I was SOMEBODY else and did not matter to him. This was one of the signs the Neurologist performs to evaluate consistency of a brain and/or spinal cord dysfunction, yet to me this was another confirmation that I was now not like others. SEPARATED, alone, in this space occupied by both of us but really we were more different than we were at first.
Every moment is just that but I remained an outsider. I kept hearing statements like “this is most common for your age,” “you’re a smart guy.” To my questions of how to make symptoms better I got “you can’t but these drugs, maybe, will slow progression,” “maybe?” I asked and as though I was an idiot, the useless, lost, doctor, depending on personality, either smiled, wiped their face or looked down no doubt hiding their impression in shame. It is not rewarding to see a doctor scared, at a loss of words. They knew. They knew but did not want to say it. They hid behind the mask of their job, much like Nazi soldiers or just workers knew the final outcome of their usually minute part but focused their minds on that part. Choosing such a job as a neurologist opens the possibility of such situations occurring, but these people chose it anyway, either with goal to stay alienated from such disaster, just brave or sadistic which unfortunately seemed far more common than I expected. Yes, the ‘healer’ became a spectator to a show that the patient pays for in not only money but self respect, dignity and shame. A sick festival of looking at images the patient had done, reviewing the performance of abilities the patient still had and testing medication to see noticeable results. If the doctor was privileged, pharmaceutical companies will pay to have desperate patients try their new products which essentially were guesses as no idea of cause existed. There was a noticeable immune response which became quickly blamed for the entire illness. “But, how?” I asked. “Your immune system attacks own body, it is called Autoimmune,” I received in response.
Thing was/is that it makes total sense for a physician to see troubles and offer direct help for the difficulties observed yet this parade was purely for doctor’s curiosity and sick entertainment as I left with nothing from almost all of these heroes although I am sure that some patients were helped and now I know, and what I wanted at start, would help. In either case, I did not choose to be a character in this play. but now for fear of malpractice something had to be offered yet they and I knew that it would probably be useless and my life, as I knew it anyway, was over.
I learned later that a very common and fairly cheap steroid drug was available to help my symptoms yet only one of the-, ugh, many doctors gave me a script to get IV steroids followed by months of that same pill. You see I was dead to the rest and only things to offer were the very expensive medications that decorated their offices on clip boards, pens and other branded ornaments. My young self could not understand why such a drug which did help symptoms and in fact is available over the counter in Europe was -not hidden but not even considered for me. How could few strokes of the pen be so hard? Instead the goal seemed to get me out of their office, their minds with nothing, to deal with my own misery without any attachment.
To the surprise of the one doctor who tried steroids, I got much although not completely better. Seeing this he backed away as entering a field of going against protocol already proved too much and I was too young to argue. I never saw him again as he told me the thing to do now was the protocol drugs, however I declined, using his steroid system for years after even as I got progressively worse. I returned to work, met my now wife and tried to regain much of normal life. I was a person again but I wanted all even if I had to take drugs to do this. I refused protocol drugs for reasons that seem even clearer to me now. My condition did not match other’s experience. I seemed to have no remissions and based on guesses was not diagnosed with progressive but of course guesses are not what one expects to hear from someone whose only responsibility is to know, medical school and experience should have given that. Obviously something helped but no, my destiny was to suffer and die in misery as somebody damned and beyond help.
Of course, given the seriousness, I was usually offered what was expected but having seen my rapidly worsening state, some creative or even just thoughtful approach should have been considered as I was NOT the one in a position of power. Multiple Sclerosis, as I read, MOSTLY came in waves, thus worsening then relief then worsening. This gave impetus to target relapses and to extend remissions as much as possible. But I kept getting worse with no remissions, so, what to do? I did not want to play trial games, I needed to improve at least for some period of time. The images too, were essentially pointless but gave something to see for the usually unaffected and alienated ‘doctor.’ HELP ME, I screamed inside, still holding on to a life slipping away but I did not matter and self research and self diagnosis was all I had. Indeed through this path I found one doctor who gave me a choice. Here I was, twenty-three, faced with decision of steroid IV or protocol drugs. Surely the 60 something Medical Director could have eased my decision, especially since a specialist at a university had confirmed what I knew and surely he knew as well ‘steroids helped everything,’ but no , I decided.
This game that ends same way had the wrong goal, battle can’t be won as knowledge was/is unavailable yet life can be made better and goal of physician to make the temporary time on this planet easier to handle, instead it is somebody with THEIR disease and THAT is the focus, a game of medicine versus disease. I got better and if was given help earlier would probably gained more than 2 year awakening but I trusted and hoped for someone to see me as a person.
These notes really the path towards. I have repeated the procedure numerous times to end up crippled even worse but I don’t think procedure made it worse, any improvement was temporary and I would likely be in same place but I did get a view of Medicine and met few charlatans.
Much has been said about stem cells and although not embryonic, I had the following experience:
Imagine then a fleet or a ship in which there is a captain who is taller and stronger than any of the crew, but he is a little deaf and has a similar infirmity in sight, and his knowledge of navigation is not much better. The sailors are quarreling with one another about the steering — every one is of opinion that he has a right to steer, though he has never learned the art of navigation and cannot tell who taught him or when he learned, and will further assert that it cannot be taught, and they are ready to cut in pieces any one who says the contrary.
They throng about the captain, begging and praying him to commit the helm to them; and if at any time they do not prevail, but others are preferred to them, they kill the others or throw them overboard, and having first chained up the noble captain’s senses with drink or some narcotic drug, they mutiny and take possession of the ship and make free with the stores; thus, eating and drinking, they proceed on their voyage in such a manner as might be expected of them. Him who is their partisan and cleverly kaids them in their plot for getting the ship out of the captain’s hands into their own whether by force or persuasion, they compliment with the name of sailor, pilot, able seaman, and abuse the other sort of man, whom they call a good-for-nothing; but that the true pilot must pay attention to the year and seasons and sky and stars and winds, and whatever else belongs to his art, if he intends to be really qualified for the command of a ship, and that he must and will be the steerer, whether other people like or not-the possibility of this union of authority with the steerer’s art has never seriously entered into their thoughts or been made part of their calling.
Now in vessels which are in a state of mutiny and by sailors who are mutineers, how will the true pilot be regarded? Will he not be called by them a prater, a star-gazer, a good-for-nothing?