2005-12-27 - 6:51 p.m.
I really feel slammed. I just talked to a nurse at Northwestern Medical who�s reviewing applicants for an experimental multiple sclerosis treatment program. It�s an FDA-authorized Phase II clinical trial of autologous stem cell transplantation. I referred to this before, but the basic idea is that they spin out your own adult stem cells from your bloodstream and kill off your immune system.
Then they inject your stem cells back in, with the idea that they�ll set up a new immune system that doesn�t attack your own myelin. (The basic problem in MS is that your immune system mistakenly decides that the protective myelin sheath on your nerve cells is an outside invader and attacks it. Much like a frayed electrical wire, nerves with their insulation thus damaged can�t transmit signals well, hence problems with moving muscles.)
I had initially thought that such a procedure involved waiting for weeks in an antiseptic �bubble� for your immune system to regenerate, but this apparently isn�t the case anymore (as I guess it was in the early days of stem cell transplantation before they�d worked the kinks out, so to speak). Still, it�s a pretty radical treatment. I told a nurse at the MS Center in Boston about the trial. She expressed shock and said it sounded extreme. Yeah, well so is MS. What do you expect me to do? Wait patiently to decline further?
I submitted a thick stack of my medical records to Northwestern. The nurse had reviewed them and noted that I walk with a cane now (and usually use a wheelchair outside my house, but this wasn�t in the reports). The study was looking for participants who could walk unaided, whose physical state hadn�t progressed to the point mine had. There was a cost-benefit issue here. They didn�t think this treatment would help me and didn�t want to use such an extreme procedure for no good reason.
Essentially, I realized, I had been triaged out. She said it looked like I would have made an excellent study participant a couple years ago, but now my MS seemed to be too advanced to have me in the study. My symptoms suggest I have permanent damage to my nerves that won�t be reversed by this therapy. They want to help everyone, of course. But the purpose of this trial is to test the procedure�s effectiveness in subjects in an earlier stage of progression. Someday they hoped it could be used on everyone, but not yet.
Well fuck. This was surprisingly disheartening. I�d spent much of the morning before that filling out an application for Social Security disability benefits (I figure it�s not like a charity handout since I paid into the system when I worked). This process involves a good deal of emphasizing what an unfortunate, utterly helpless invalid you are. Poor me, I can�t do any productive work at all; please pay me. Quite a kick to the ego. Now I felt like I was being told I had no hope of changing my lot and I was on a one-way trip. Get used to the role of helpless crip, buddy.
I don�t want any part of this, don�t want a future filled with such a part. It seems there�s an inherent tension to being an �official� disabled person. Receiving any sort of governmental benefit means you have to play up what you can�t do. But maintaining a sense of pride and self-worth calls for focusing on what you can do. I�ve tried to avoid walking this line as long as I can possibly afford to. Now it looks like I�ll have to figure out how to negotiate this balance.
Maybe I should just be glad that progress is being made in MS treatment, even if it doesn�t help me. It�s always been my strongest hope that no one in the future should have to deal with this shit. But I�ve recently come to realize that I want my own life to improve now, to be a better person for Nya and for myself.
I guess I�ve learned a lot to distinguish between what I can control and what I can�t. I can indeed manage how I live. Oddly, I live stronger now that I�m less physically capable than I ever have. I�ve also become aware that I don�t have power over the development of MS therapy, not being a researcher myself. So really, I�m no worse off than I expected to be. Still, it really stings to have the possibility of help dangled in front of you and then snatched away.
Oh, I�ll get over it eventually. But for now, I repeat: this sucks.
� 2005 Geoff Gladstone
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