Zallek will be my last one, so it’s good that we got on well. He reserved two hours for me in order to gauge my reflexes and responsiveness. If he sees a fair number of ALS patients, I can imagine that he has to blunt the force of the diagnosis and perhaps struggle with disbelief and the reactions of those who blame the messenger for the bad news. Since he seems to genuinely care, it may be a burden. If so, he may have been relieved that I was cheerful, uncomplaining, ready with my questions, but not demanding that he know or do more than humanly possible. For me, it meant a lot that he didn’t sugar coat things when I talked about an “exit strategy” and about how I didn’t want to burden my family. My cancer had nearly destroyed them. I know better than to expect the impossible from them this time around. I let him know that his colleague Dr. Herman Dick is my medical power of attorney who knows my wishes and is aware of my personal situation.
Dr. Zallek is the most agreeable neurologist I’ve seen in my year of consultations and EMGs, the most agreeable, that is, since Herman whom I consulted first and who launched me on my path of treatment and examination. After Herman was Dr. Mo, whom I only consulted once. He was also no sugar coater. He maintains a clinic in his native East Africa and I had the feeling that, coming from a place that has to ration medical resources, he balked at prescribing the exorbitantly expensive IVIG infusions without any indication that I was treatable. He would have been right. After Mo, I saw Dr. Kelly of the University of Chicago at Orland Park. He was a humorless electrician who, losing no time on pleasantries, took out his toolbox and began delivering the unpleasant shocks of the EMG. Next came a nerve biopsy by Dr. Horowitz of the U. of Chicago, followed by an EMG administered by two rather thorough doctors whose Hispanic surnames escape me. My bad joke about them was that they must have learned their procedure in a CIA torture school in Panama. They didn’t soften their shocks with gentle gestures or kind words, but that’s ok. I would have been thankful for the rudest manner if paired with an effective treatment. Then I saw Dr. Rezania of the University of Chicago neuromuscular clinic. I saw him twice. The first time he told me summarily that he was not at all ready to diagnose me with ALS. The second time he just as summarily reversed himself. He didn’t draw it out or make a long face. “You’re an educated man, you know what that means.” Yes, thanks, I did know very well what it meant.
Again, I must repeat that there is no point blaming the bluntness or brusque manner of the messenger when in fact it’s only about the message. No sensible person pretends otherwise. Give me the rudest manner if only it’s accompanied by effectiveness. But since in fact there is no effective treatment or cure for what I have, I did appreciate the sympathetic attitude of Zallek. My rejection of any artificial prolongation of life and my frank question about an exit strategy elicited an honest response on how and under what conditions oxygen might be administered on a temporary basis without violating the terms. I am the one who sets the terms, he assured me. I set the terms. Older patients typically stop eating to signal that they’ve had enough.
Signed,
Andrew (Weeks)
A correction: when I was listing my kind and responsive friends, how could I forget to mention those first responders Tony Crubaugh, Tedy Nikolova who gave me the cherished martinitzy, Jim Pancrazio, my excellent chef, and now Chris Breu, who is sharing painful but vital information with me. A reserve cadre of friends!
Normal Thoughts 