I’m grateful that my wife went with me to my neurological appointment in Peoria. I’m grateful that she not only took part in the conversation with Dr. Zallek but even stayed with me (I asked her if she preferred to go outside) when I brought up the matter of what I call my “exit strategy”. Zallek went into some detail about what it might feel like when my lungs stopped working (“like trying to inhale through a straw that is too narrow”).
When we left to go to our car, I commented that I have no intention of becoming an ALS diehard survivor, permanently strapped into a wheelchair and dependent on life-supporting technologies; but I added that I also didn’t want to suffer excessively and that I was relieved to learn that I’m not the only patient to make this choice; and that palliative medicine has been developed accordingly.
Veronika suffers under uncertainty, and I expect that she feels less uncertain now. I had the sense that a fog of uncertainty was clearing up between us. Our American way is to strive for some sort of underdog victory (“No white flags”). Each to their own! As for me, I’m not a subscriber to those scenarios. I prefer to die with dignity. I hope now that, knowing this, my wife’s attitude toward me will soften. However, I can’t be at all sure of that. She and my daughter respond to ambiguity—to the moral ambiguity of their passive acquiescence to my decision—by becoming even more rigid and insensitive. Are they perhaps a little too ready to see me, the irritant of their troubled consciences, disappear? A challenged conscience has often been the stimulant of their frigid cruelties in the past.
Either way, all the more reason to exit, loving them as best I can and giving them the benefit of the doubt. I only wish they would somehow manage to dispel my doubts. A few sincere kind words might do it.
Signed
Andrew (Weeks)
Normal Thoughts 