Perhaps the medical condition that had the most defining impact, both in terms of its effect on my well-being and the length of that impact, was ITP. It was 1976, I was living in Detroit and working for BBYO. These were the days of HMOs, and thus I went to an HMO clinic for my annual checkup. This particular HMO was in one of the less pleasant neighborhoods in Detroit, which at that time was saying a lot.
The day after the checkup, I was asked to return for follow-up blood tests. That evening, I received a call from a hematologist. My blood test revealed that my platelet count was one-tenth of the normal range, and I either had leukemia or another blood disease. I needed to return to the HMO to have a bone marrow sample taken. I spent that evening alone in my studio apartment, pondering my death.
The following day, assuring me that he had done this procedure twice before, the hematologist inserted the largest needle I'd ever seen into my sternum to extract bone marrow. Think of someone sucking out your innards with a straw. I spent another 24 hours in fear for my life waiting for the results.
In the end, I was diagnosed with ITP, a rare autoimmune disease that causes a dramatic reduction in one's platelet count. When the hematologist warned me that among the side effects of the prednisone would be a "moon face," I asked whether that meant I would have a dark side. He didn't get it. I was put on a high dosage of prednisone, which, other than making my face blow up, had minimal medical impact.
ITP is a condition with a particularly scary name, "Idiopathic Thrombocytopenic Purpura." Any disease that begins with the word "Idiopathic" is not good news. Basically, it's the medical way of saying, "When it comes to this disease, we're idiots. Let's throw high dosages of steroids at it, and if that doesn't work, let's remove an essential organ."1
For the next five years, before the removal of my spleen in January 1981—two weeks after my wedding day—I was forbidden from playing any sports. The risk was that I would be injured, and the internal or external bleeding could not be stopped. The world of basketball was the better for this interregnum.
There was, however, a positive outcome of my ITP experience. One fall morning in 1977, I sat at a diner on Broadway and 110th Street, around the corner from the Columbia University School of Social Work, eating breakfast and reading the New York Times. In the Science Section, I spotted an article that spoke of the link between dyslexia and autoimmune diseases. Thinking about my bout with ITP, an autoimmune disease, my long-term undefined learning challenges now had a name.
In articulating the symptoms of dyslexia, the author was describing me: my difficulty decoding written words, propensity to reverse letters, disastrous, undecipherable handwriting, and most profoundly of all, a complete inability to spell even simple words. A lifetime of challenges now made sense. My disability had become my identity.2
Vitiligo is another medical condition with a scary name that has visited me. Having made an appointment with a dermatologist to have a wart removed from my finger, I happened to ask him about the white blotches under my arms. In a cheery voice, he said, "Oh that's interesting"—a phrase you never want to hear from a doctor. The diagnosis was vitiligo, another autoimmune disease of uncertain causation.
For those not familiar with this form of ailment, an autoimmune disease "is a condition that results from an anomalous response of the adaptive immune system, wherein it mistakenly targets and attacks healthy, functioning parts of the body as if they were foreign organisms. It is estimated that there are more than 80 recognized autoimmune diseases."3 What are the chances that I would have two of them? Naturally, this leads me to wonder—what do I have against myself?
My most recent medical aberration actually has quite a pleasant name—"floaters." Black spots or spiderweb-like lines float across my right eye like dancing apparitions. According to the Mayo Clinic online site: "These painless symptoms could be caused by a retinal tear, with or without a retinal detachment. This is a sight-threatening condition that requires immediate attention." Thank you for that.
One final thought. At this stage in my life, conversations with friends mostly focus on our panoply of medical conditions. Knees and hips and their replacements are often dominant topics. High blood pressure, cholesterol, and cataracts are close seconds. The conversation invariably begins with, "I haven't seen you since my last colonoscopy."
What we don't need are more medical conditions to worry about. For instance, when did "restless leg syndrome" become a thing? Just about every other commercial on YouTube features happy, healthy people enjoying life, having recovered from some recently identified medical condition magically cured by a medication with a perfectly nondescript name: "Albrunia," "Normastra," "Plazonica." All these medications have an endless list of side effects that, more often than not, are more serious than the condition they purport to cure. What are we prepared to risk to have our legs remain placid for the remainder of our days? I choose to be peripatetic—which, by the way, is also a good name for a new drug.
[1]: By the way, to cover their asses a bit, the medical field has changed the name to "Immune Thrombocytopenic Purpura." I like the way they kept the "I" as the first initial, and I wonder what the conversation was like. "Okay, 'idiopathic' is out." "How about 'impervious'—no, that would be a bad look." "Identifiable—well, that's not actually true." "Let's go with 'immune'—it's perfectly vague."
[2]: This might be a nice time to take a break from my meandering to explore a piece I wrote many years ago about dyslexia and such. Click HERE if you are a glutton for punishment.
[3] https://en.wikipedia.org/wiki/Autoimmune_disease
