Please rewind to 1996, the early, foggy days.
So that was what cerebral involvement was all about. There was no way that I could have imagined how horrible it could be. Nonetheless, at least for the time being, my MRI looked good: I did not have to worry about this business, and that was a fine development. Nevertheless, I was left facing an ocean of emptiness. Although perhaps I was able to believe that I might survive the balance of 1996, there was just too much unknown. I had never really thought of myself as being overly curious, and I guess I was not. No, it was something beyond simple wanting to know. No, what I was then dealing with was bordering on obsession.
I had a reasonable understanding of pathophysiology. This would need to be my foundation. Now a patient, I set out to learn as much as possible about this disease and its peculiarities. One thing that I did know was that it was genetic, and X-linked, putting males at greatest risk.
So, first off, I called my brothers, and told them to get tested. For some reason, as the first diagnosed, I felt some strange sense of responsibility. While it was not apprehension, there seemed to be little interest in getting it done. Eventually, I convinced them. Just to make sure, I drew their blood myself, and shipped the samples. Both brothers, Todd and Matt had positive test results. If you are to believe in genetics, as taught by Gregor Mendel, the odds of this outcome were 1 in 64. So, either there is more to it or my parents were a bit unlucky. Something to do with gene penetrance, something else, maybe….. What could I know?
Most all of the males in my large, extended family, eventually got tested. There were some that did not want to know. It turned out that in addition to Zach, my cousin Chris and another of Vicki’s sons came up positive. As I alluded to previously, the disease can take a variety of different courses. As such, it was not clear what these findings meant. I had no idea what others were thinking, but I was not going to take this sitting down.
I was driven to learn. The first step was to read everything that I could get my hands on. This was not an encouraging process. I found out about plenty of things that could happen to me- none of them good. I also discovered that it takes very little imagination to realize that all of this nastiness was already happening, or soon would be. This was hypochondria out of control: to my calculations, I had about 6 months to live.
Two things came to mind: my wife should certainly divorce me, she was quite young, with her whole life in front of her. Why should she take this on? Secondly, although we did not have much, I decided to liquidate everything we had and travel the world. Mike Dobbles, a good friend and rocket scientist (for real), the ultimate voice of reason, suggested that I not do anything rash. I did not. Dobbles made sense at the time. Jumping ahead several years, I came to realize that he had given me the worst possible advice. With disease progression, traveling and doing became difficult. Of course I should have done it.
So far as divorce, well that is another story, for another day. At the time, I was happy that she stuck with me, although it is impossible to know if she would have found better things without me. You never know about what I might have done.
I charged ahead without a comprehensive plan. Nonetheless, I figured that if I dug deep enough there had to be some way to cure or manage the disease. I would fling anything that I could find at the fence to see what might take.