By Andrea Scarpino
I have Thalassemia. This may seem like a big, scary admission, but it’s not. Basically, I inherited from my father a genetic mutation that causes my body to produce less hemoglobin—the part of our red blood cells that carries oxygen—than is considered “normal” (of course, as we know, “normal” is a construct).
What I love about Thalassemia: the word comes from the Greek words for sea and blood. And my funky blood is shared by many people from Mediterranean regions—Greeks, Italians, North Africans—possibly developed as a protection against malaria. Malaria can’t insert itself into my red blood cells very easily, which is a pretty handy thing given my ancestor’s proclivity for living in malaria-rich regions. And the word itself—just say it: Thalassemia. It’s a great word. Blood and sea.
What makes me cranky about Thalassemia: other people’s hysteria.
Case in point: last week, I met with a new primary care physician. I told her I have Thalassemia. I even wrote it on my chart. I asked for blood work, which I get every couple of years just to make sure my numbers are normal-for-me. She agreed. Two days later, she called me on the phone in a panic.
“This blood work is very abnormal,” she said. “Can you get to Marquette General Hospital right now?”
I’m usually the first person to panic. I will be dialing 911/running around unhelpfully/screaming hysterically before anyone else even knows there is a crisis. And yet, I had a feeling her panic was overdone. I asked her to read my hemoglobin count; it was higher than the last time I had blood drawn. She wasn’t convinced by that bit of good news. She had spoken with two other doctors and none of them could make sense of my lab results. My bilirubin was elevated! My spleen may be destroying my red blood cells!
I giggled. Just say it: bilirubin. It’s hilarious—just hearing it in my head as I type makes me giggle. And she kept saying it. And I kept giggling.
The doctor finally agreed to hang up when I agreed I would get more blood drawn from Marquette General that afternoon. Minutes later, the hematologist’s office called to schedule an appointment. “I just have Thalassemia,” I told the nurse. No matter.
So this morning, I waited patiently in the hematologist’s office. My mother—who had laughed pretty hard as I recounted the situation and even suggested I was lucky the doctor hadn’t called the CDC—had made me promise I wouldn’t be “a brat” about things. The doctor walked in, introduced himself, shook my hand, said, “So, it looks like you’ve really panicked some folks!” And then he laughed. Loudly. And shook his head in disbelief.
When he finally collected himself, he said, “So. . . (long pause as he looked through my chart). . . you have Thalassemia.” And I laughed. And he laughed again. Then, “You’ve probably known your whole life, right?” I nodded. He laughed.
It was a lovely thing, to be meeting with a doctor who understands absurdity, to feel like we were in on a joke together. He showed me my primary care physician’s notes on my lab results—there were circles and question marks and underlined writing like, “what does this mean?”
“Oh dear,” the hematologist kept saying, wiping his eyes. Because for someone—anyone—who understands Thalassemia, my blood work was fine, was normal-for-me. There was no reason to act like my body was imploding—well at least not like it was imploding any faster than usual. Basically, my doctor made a crisis out of her own ignorance.
Finally, the hematologist shook my hand again, and I got up to leave. “Well,” he said, “I guess I won’t see you again until you panic the next doctor!”
“I’ll look forward to it,” I replied.
And that was the truth. The hematologist is clearly the best doctor I’ve had in Marquette—and in all likelihood, I’ll have no reason to go back to him. Thalassemia like mine doesn’t require much treatment—good eating, a generally healthy lifestyle. If I were to have biological children (see last week’s post), I would want to do some genetic counseling. But mostly, I’m treated through monitoring, periodic blood work. Periodic panic-inducement.
Of course, I’ve lost complete faith in my new primary care physician, which I guess is too bad. But the good news is, I’ve been laughing all day.
Poet and essayist Andrea Scarpino is a frequent contributor to POTB and one of our heroes. You can visit her at:
– Posted using BlogPress from my iPad
Location:Marquette, MI
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