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.
In the beginning I tried God. An arch atheist I never believed in anything but quickly declining I had to, maybe. I went to Buddhist temple, every church I could find, wailing wall, wherever , all fake, perception. Were humans that weak/stupid? We can only hope to coincide in interests of people that know the problem to find salvation.