Like most of those my age—perhaps all—I've had a series of medical conditions.
My first was a double hernia, which I was born with and was repaired when I was
two years old. I have no recollection of being in the hospital, visits from my
parents, or the surgery itself. I do have one memory—or perhaps a memory of a
memory—of the boy next to me in the ward. I remember that he had a net over the
top of his crib, and I remember thinking that was odd. Was he an escape risk?
Should I be thinking about escaping?
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