You’re walking better

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.

 

Stem Cells

 

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.

 

CCSVI

 

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.

 

Train

train

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

nothing left.”

“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.”

Amsterdam

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.

Train

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.”

 

Suicide he thought.

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.

12:25a.m.

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.

3:00

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.

Afterward

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

properly diagnosed.

Guardians

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.

 

Neuro K

 

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.

 

Reflection

 

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.

Neuro G

 

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.”

 

Reflection

 

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.

 

Neuro C

 

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.

 

Reflection

 

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..

 

Neuro B

 

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.

 

Neuro L

 

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…

 

Reflection

 

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.

 

Neurosurgeon #1

 

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 .

 

Reflection

 

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.

 

Spinal surgeon

 

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.

 

Reflection

 

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.`

 

Neurosurgeon #2

 

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…

 

Reflection

 

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.

 

Neuro A

 

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.

 

Reflection

 

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 #1

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.

 

Reflection

 

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.

 

Neuro T

 

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.

 

Reflection

 

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

 

Neuro V

 

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…

 

MSS #2

 

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.

CCSVI Story

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.

http://ccsviandme.blogspot.com

Ship of Fools

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?

PLATO

Frozen

WomanSoon as I saw her I wondered about her story. Her imprisonment seemed to have frozen her in a dance, did she want to become frozen? Was she punished? Was she rewarded? Are the conceptions twisted to suit my beliefs? Magical thinking does make life interesting however and nature’s randomness is awe inspiring, indeed dancing woman.