TWO days ago, after two months of on-and-off visits to the doctor, I was diagnosed with sarcoidosis.
I wrestled for some time with the idea of turning something so private into a public announcement, but I thought there was nothing much to gain by keeping it to myself. I'll admit that I'm loath to be even loosely associated with today's hyperconfessional culture, where deeply personal matters are cheapened into Facebook status updates. However, my reluctance to add my own voice to that shameless free-for-all was countered by the importance of raising awareness of a disease that, until yesterday, I personally never even knew existed (it was one of those rare instances where I learned the German word—Sarkoidose, for the record—before its English equivalent) and the fact that other newly diagnosed sarcoidosis sufferers might stumble across this post in the future and perhaps end up feeling less frail and vulnerable than I did. Loneliness and futility are the last emotions anyone wants to grapple with after being diagnosed with a potentially fatal illness.
There are plenty of online resources about sarcoidosis, so there's no great need for me to re-describe the disease in any detail here. The
Wikipedia entry, as always, is a good place to start, followed by the
Sarcoidosis Research Foundation, the
Cleveland Clinic page on the disease,
this page on potential Chinese and Western remedies, the
SILA support forums, and finally
this UK page to restore a tiny bit of optimism to the proceedings. What it boils down to (and please excuse any minor errors that stem from my crash course on the subject) is an adverse reaction of the immune system, particularly the lymph nodes, in which granulomas—that is, clumps of cells that ordinarily fight infection—coagulate and fail to dissolve. They collect and cause inflammation in sensitive organs and, ultimately, internal scarring. If the scarring is severe, the afflicted organs (e.g., lungs, heart, liver, eyes) are irreparably damaged and can fail.
My own experience: In mid-July of this year, I had two back-to-back booster shots (polio, tetanus, and measles; then hepatitis B). A few days later, for reasons that might or might not be related to those inoculations, my ankles became swollen, hot, and extremely sensitive to the touch. Not long after, my lower joints seized up arthritically. It reached a point where I felt as though I'd aged fifty years in as many hours; I could hardly stand when getting out of bed in the morning. By the time I made up my mind to see a doctor, who prescribed ibuprofen (which, incidentally, did work to reduce the swelling and almost crippling discomfort), the worst of the joint pain was over and a dry cough, the result of a tight-feeling airway and a tickling sensation in the throat, had set in.
Some days since then have been better than others. Occasionally I have had long coughing fits, but for the most part it has been mild. Persistent irritation more than anything else.
A series of blood tests in mid-August and again in late September revealed that I had continuously elevated levels of angiotensin-converting enzyme, or ACE (114; "normal" is about 40). While the last round of bloodwork was still being analyzed at the lab, I was sent to have chest X-rays, which, upon the scrutiny of a specialist, revealed swollen lymph nodes in the lungs. Combined with the radiologist's hunch that it might be sarcoidosis, the high ACE levels and previous joint problems—along with additional symptoms such as night sweats and fatigue—pointed almost unmistakably to that diagnosis. There is apparently still a slight possibility that it could be the cancerous Hodgkin's lymphoma, which has similar symptoms and has affected distant members of my family, but for now all signs seem to confirm the initial conclusion.
That pronouncement is something I've been mulling over with mixed feelings. To be sure, I now have a much clearer idea of what's afflicting me and what may come of it, but there was a certain bliss in the ignorance of its true name. With the doctor's utterance of one five-syllable word, Sar-ko-i-dos-e, an annoying cough has suddenly transformed into something serious, possibly debilitating, even deadly. The future that I had no problem envisioning at the beginning of the week has been pushed aside by one that is more uncertain, more ominous. I think of my wife and young children, of the house we've just bought, of a burgeoning freelance business, and I imagine what it will be like to try enjoying all of that in a diminished capacity. And, yes, those unhappy projections constrict my throat and sting my eyes.
There's the past to consider, too. Was that infrequent tightness in my chest some kind of indicator? And when did that even start? Three years ago? Four? Back then, was I on to something when I felt that my breathing had become more shallow, or was I simply noticing the inexorable process of aging? If they were indeed indicators, could I have used them to prevent the more serious symptoms, or would those indicators only have enabled me to identify the inevitable? And what of those inoculations in July? Would avoiding them also have avoided triggering this outbreak? Would it have been worth it, or would I have fallen prey to one of those illnesses instead?
It's incredibly tempting to take these questions, for which there will probably never be answers, and use them to construct an entirely fictional but satisfying narrative. Because I like stories with clear causes and effects. I like things to make sense, to have a logical flow that leads to a generally foreseeable outcome. The idea of my body spontaneously deciding to destroy itself does not fit in to that well-ordered scheme. Nor do the statistics. This is a disease that primarily affects women, North Europeans, and black Americans. So how did I end up squeezing my own sorry self into that slim remaining percentile? And does that mean I will join the equally marginal ranks of those for whom this disease is fatal?
To best combat a disease with no known cure, they say the most important weapon in one's limited arsenal is a positive attitude. To maintain one, I have to leave off this abortive questioning and those grim time-traveling exercises in which I see my children wanting to run in the park with their Daddy, who, for as long as they can recall, has never been able to do much of anything without becoming breathless and tired and grows visibly older and feebler every year. It's hard, though; this kind of mental activity, however counterproductive, is something my brain regards as almost recreational in nature, especially when the conceived world it became so comfortable with has been demolished. Quickly, assimilating this inconvenient influx of fresh data, it sets about creating a new one in which to operate. This is natural, I guess, and in time, as even the abnormal becomes normal, it will begin to subside. But that will not completely change the fact that I would prefer hard answers, that I would like the angels of the future to whisper my detailed fate into my ear, that I would like to assure my immediate family that all will undoubtedly be well. I know those things would elude me even in health, but the inherent precariousness of life seems so much more sinister when each day we awaken to a stark, needling reminder of our own mortality.
And so my mantra: Breathe deeply (lungs permitting). Chin up, chin up.
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