One of the original titles I thought of for my blog was "Anxiety and Me." And while I still have plenty to say on that subject, polycythemia is my current obsession.
But ... before I start talking about what I've learned since being diagnosed with too many red blood cells, also known as high hematocrit and high hemoglobin, primary or secondary erythremia, primary or secondary polycythemia or polycythaemia, absolute or relative polycthemia, polycythemia vera or vera rubra, or myeloproliferative disease, or Gaisböck's syndrome, or just plain old plethora (actually, these aren't all interchangeable, and I'm not sure yet which one is my particular lottery ticket)--I feel compelled to consider a more philosophical question.
Is it wrong for a person who has been diagnosed with a malignant condition to talk about said condition?
I ask this because, in my transformation from healthy person to not-so-healthy person now diagnosed with her third--count 'em, sports fans--serious chronic illness--I have noticed that a good number of people in this society do not want to hear anything about what it is like to have said conditions and how said conditions affect one's daily life.
Now, bear in mind, I'm not saying that I go around 24/7 talking nothing but polycythemia, for heaven's sake. I am careful to keep my references to these illnesses at a minimum in number and length. Yet, I've seen that many people--interestingly, often people I'm closest to and, hence, turn to for advice or merely listening--turn their heads and even leave the room when I say anything at all about my health. (A few, though, show more sensitivity.)
I can hear you right now, dear viewer: "You must not be properly self-monitoring! Obviously, you must be going on ad nauseum about being sick!"
I plead to differ. But, lest I begin to sound like a kvetch, let me say that, in contrast, I have been unaccountably blessed with a significant other who sees me on a daily basis and does, in fact, take my illness(es) seriously. We also don't focus on those illnesses 24/7. We focus on having fun together, on raising our kids--even the grown ones--together, on caring about our society and our planet together, on reading and writing and partying and loving together. But when I'm feeling down or sick, he listens. He knows the details of my conditions and where I am in their treatment. He shares my concerns and frustrations with doctors and others who don't understand or do enough. We can cry together if we have to. And we laugh.
That's something I learned when my son was diagnosed with a serious mental illness--it's important to laugh. Oh, not during the acute phases, necessarily--but as soon as possible. And as often. There's plenty of humor in bad health. It doesn't always have to be so deadly serious. I mean, everything's deadly, isn't it? Aren't we all headed in the same general direction? Some of us just get there faster than others; some of us get there harder than others. But no matter how hard or fast, laughing can make it a hell of a lot easier.
One night shortly after my mom was diagnosed with terminal liver cancer, our family sat around in her living room eating vanilla ice cream she'd just dished up for us. "I met with the guy who's going to do some work on the house," she told us. My father had died of a sudden heart attack three years earlier, and Mom was struggling with the home details he'd always tended in their thirty-seven years of marriage. She showed the handyman the various jobs to be done--new cement front steps, a gutter repair, some painting and caulking. She went on, "I told him that I hoped it wouldn't be too expensive. And then I told him I'd just been diagnosed with terminal cancer, and I was trying to get the house fixed up now so my kids wouldn't have to deal with it after I died." She paused for a moment--she had good timing for punch lines: "And then I said 'But don't let that affect your price!'" We all cracked up laughing despite ourselves. The handyman, however, did a lousy job on the steps and made my mom cry.
Ah, so here I am, and showtime is over, and I haven't even described one tiny symptom I'm dealing with regarding polycythemia! So, you see, I'm not some hypochondriatic boor the way I sometimes believe others see me. But, dammit, sometimes I've just got to talk about this stuff, and hopefully laugh about it a little. And so I turn to you, my "viewers"--my imaginary public--to share these stories. Maybe, I imagine, someone else will have gone through something similar and will find something of kinship or maybe even hope in something I say--I definitely don't want this blog to be a downer. Even if, by necessity, a large part of what I write about is illness and death, why the heck can't we be entertained?
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