Lying inside a tube with constant banging and periodic vibrations, I ponder why I am even here. The ball in my palm is now covered in my own sweat as I anxiously wait to leave. The ball is to call the technician who, can hear me if they wished or in response to my summon. Nervously, I rub the ball debating with myself if I should just wait or squeeze it. Feeling the urge all over my motionless body I squeeze. “I need to pee,” I said, aggressively massaging the sweaty ball after a two hour marathon of images, providing little to nothing for my treatment. “Just few more minutes,” a voice answers, we are doing last images with the contrast that same tech injected into my arm. “Fuck,” I say to myself as the bench begins to move out of the tube. “We are done,” announces the seemingly twenty something guy in blue scrubs as he unlocks the helmet I was wearing to keep my head straight and still. A thought passes that I too was a twenty something guy who up until few months before was living a relatively normal life, undeterred by such, useless, adventures. Knowing that techs are bound not to say anything and my, lack of interest in what he saw, all I wanted was a toilet, so I removed the pulse meter on my finger, took off the headphones playing Michael Jackson and let go of the ball on a wire that had been occupying my hand to stand up holding the bench with my right hand, converting to a lean as I turned and sat down in an oversized wheelchair the tech rolled in, “to the nearest bathroom,” I declared and was graciously pushed to the giant, oversized door and into a bathroom, positioned right in front of the toilet, the tech put the brakes on and began walking out. With concern written on his face, he asked, turning around. “Do you need help?” “No,” I answered grabbing the bar on my right to stand up. I sighed as I finally escaped the maddening hours with myself and memories of a life nevermore.
It sounds awful, oh my God. How? Why? I cannot even imagine. Those poor people. Thoughts such as these entered the landscape of my, teenage, mind as well, as I think it does anyone confronted with seeming difficulties or deformities or just differences. Life comes with certain factors that cannot be changed and to those that are not or have not experienced it, it’s always somebody else. It is always easier, more comforting and safer to separate, thus its us and them, their problems remain theirs. Perhaps we will never have those issues. Our lives are ours and our systems, if we have been lucky enough to be in a sophisticated place, will protect us. At least we think the blanket of safety will wrap us up and comfort us. If all is well, we expect the status quo to continue, there could be problems but our systems of protection will either manage or eliminate those issues, worst case at least we can be made comfortable for the, usually, not too long a time of suffering.
This perspective is common, perhaps even necessary to exist but any kind of dis-sympathy or even sympathy belittles the agent as a source of entertainment or intellectual curiosity. One, cannot feel same then, the separation becomes larger and human race, distant. What if that somebody, is YOU. Although odd, really why not? We are all part of same species, humans are so complex, so much can go wrong and yet we are fed and feel as though the world is as perfect as possible and THOSE people were just unlucky. Indeed but it is different when it is you.
Being separated places one outside the human circle, not only are you now different but you have taken the spot of SOMEBODY, thus in essence lowering the probability for one of others, a lottery winner so to speak. In fact, one of ‘doctors’, I visited, happily declared upon performing my exam, “you got Hoffman’s,” and the winner is, I suppose it was rare for him to see but very sad to me, however I was SOMEBODY else and did not matter to him. This was one of the signs the Neurologist performs to evaluate consistency of a brain and/or spinal cord dysfunction, yet to me this was another confirmation that I was now not like others. SEPARATED, alone, in this space occupied by both of us but really we were more different than we were at first.
Every moment is just that but I remained an outsider. I kept hearing statements like “this is most common for your age,” “you’re a smart guy.” To my questions of how to make symptoms better I got “you can’t but these drugs, maybe, will slow progression,” “maybe?” I asked and as though I was an idiot, the useless, lost, doctor, depending on personality, either smiled, wiped their face or looked down no doubt hiding their impression in shame. It is not rewarding to see a doctor scared, at a loss of words. They knew. They knew but did not want to say it. They hid behind the mask of their job, much like Nazi soldiers or just workers knew the final outcome of their usually minute part but focused their minds on that part. Choosing such a job as a neurologist opens the possibility of such situations occurring, but these people chose it anyway, either with goal to stay alienated from such disaster, just brave or sadistic which unfortunately seemed far more common than I expected. Yes, the ‘healer’ became a spectator to a show that the patient pays for in not only money but self respect, dignity and shame. A sick festival of looking at images the patient had done, reviewing the performance of abilities the patient still had and testing medication to see noticeable results. If the doctor was privileged, pharmaceutical companies will pay to have desperate patients try their new products which essentially were guesses as no idea of cause existed. There was a noticeable immune response which became quickly blamed for the entire illness. “But, how?” I asked. “Your immune system attacks own body, it is called Autoimmune,” I received in response.
Thing was/is that it makes total sense for a physician to see troubles and offer direct help for the difficulties observed yet this parade was purely for doctor’s curiosity and sick entertainment as I left with nothing from almost all of these heroes although I am sure that some patients were helped and now I know, and what I wanted at start, would help. In either case, I did not choose to be a character in this play. but now for fear of malpractice something had to be offered yet they and I knew that it would probably be useless and my life, as I knew it anyway, was over.
I learned later that a very common and fairly cheap steroid drug was available to help my symptoms yet only one of the-, ugh, many doctors gave me a script to get IV steroids followed by months of that same pill. You see I was dead to the rest and only things to offer were the very expensive medications that decorated their offices on clip boards, pens and other branded ornaments. My young self could not understand why such a drug which did help symptoms and in fact is available over the counter in Europe was -not hidden but not even considered for me. How could few strokes of the pen be so hard? Instead the goal seemed to get me out of their office, their minds with nothing, to deal with my own misery without any attachment.
To the surprise of the one doctor who tried steroids, I got much although not completely better. Seeing this he backed away as entering a field of going against protocol already proved too much and I was too young to argue. I never saw him again as he told me the thing to do now was the protocol drugs, however I declined, using his steroid system for years after even as I got progressively worse. I returned to work, met my now wife and tried to regain much of normal life. I was a person again but I wanted all even if I had to take drugs to do this. I refused protocol drugs for reasons that seem even clearer to me now. My condition did not match other’s experience. I seemed to have no remissions and based on guesses was not diagnosed with progressive but of course guesses are not what one expects to hear from someone whose only responsibility is to know, medical school and experience should have given that. Obviously something helped but no, my destiny was to suffer and die in misery as somebody damned and beyond help.
Of course, given the seriousness, I was usually offered what was expected but having seen my rapidly worsening state, some creative or even just thoughtful approach should have been considered as I was NOT the one in a position of power. Multiple Sclerosis, as I read, MOSTLY came in waves, thus worsening then relief then worsening. This gave impetus to target relapses and to extend remissions as much as possible. But I kept getting worse with no remissions, so, what to do? I did not want to play trial games, I needed to improve at least for some period of time. The images too, were essentially pointless but gave something to see for the usually unaffected and alienated ‘doctor.’ HELP ME, I screamed inside, still holding on to a life slipping away but I did not matter and self research and self diagnosis was all I had. Indeed through this path I found one doctor who gave me a choice. Here I was, twenty-three, faced with decision of steroid IV or protocol drugs. Surely the 60 something Medical Director could have eased my decision, especially since a specialist at a university had confirmed what I knew and surely he knew as well ‘steroids helped everything,’ but no , I decided.
This game that ends same way had the wrong goal, battle can’t be won as knowledge was/is unavailable yet life can be made better and goal of physician to make the temporary time on this planet easier to handle, instead it is somebody with THEIR disease and THAT is the focus, a game of medicine versus disease. I got better and if was given help earlier would probably gained more than 2 year awakening but I trusted and hoped for someone to see me as a person.