Hi Zan, Hi Pa
Volume #23
August 25th, 2024
HI, PA: Beyond our Christopher Columbus Syndrome and our contemplative natures, you and I have something else in common—a lot of physical health issues. I’m sure some of our readers can relate. So do you want to start by giving a quick overview of what your body has put you through?
HI, ZAN: Sure, Zan, though I know I speak for both of us when I say we’re not fishing for expressions of sympathy. We’re just hoping to explore the variety of aspects connected to a chronic disease or chronic bodily troubles (we’ll talk about mental health in another issue). As you say, I’m sure a lot of people can relate.
ZAN: Considering that almost half of the American population lives with at least one chronic health condition, I’d say so!
PA: I’ll start. I broke my upper back in a bad fall when I was 25 and working at the Killington Ski Area. The doctor my boss sent me to told me I didn’t need X-rays, so it was left untreated, and I was too young to realize that the doctor was protecting the company. After seven years of daily pain and regular spasms, I had an X-ray done by a chiropractor who asked, “So when did you break your back?” I said, “I never broke my back.” “Really? Come take a look at this X-ray. This is what a broken back looks like.”
I worked as a carpenter for years after that, and the mess in my upper back caused a disc in my lower back to rupture, and, after sciatica, some nerve damage, and other associated troubles, I had surgery. I was 31. I’ve also had psoriatic arthritis, a gift from my mother’s side of the family, since I was 25. PA affects the tendons, not the bones. All that has meant four and a half decades of pretty much daily pain, a whole pharmacy worth of ingested and injected medications, fifteen steroid shots in various bodily locations, frequent back spasms that have ranged from annoying to debilitating, and one interesting ambulance ride. There’s more, but you have something bigger going on, so, your turn, please.
ZAN: Well thanks to you and Mom, I was born with cystic fibrosis (CF), a genetic disease that changes the way salt moves through the cells, leading to thick and sticky mucus that negatively impacts the function of several organs. Although I have a relatively “mild” version of the disease (to the bewilderment of all my doctors, it seems my version of CF doesn’t affect the lungs), I also have to take pills every time I eat or drink to help my pancreas process fat, and in the last 12 years I’ve had 10 sinus surgeries and dozens of rounds of antibiotics, some intravenous.
PA: Well, we’re sorry about that unintended gift. We had no idea we were both carriers of the gene, and you seemed so healthy in your first three years, even though one obviously has CF from birth.
ZAN: I’m only teasing—you had no way of knowing, and you made amazing parents!
PA: I know you’re kidding, but Mom does feel a little guilty sometimes.
ZAN: She shouldn’t. I have an amazing life!
What’s interesting to me is that I seem prone to all kinds of other health issues—I also had a chronic pain and fatigue condition known as POTS when I was a teen, suffered from chronic headaches in elementary school, discovered a gluten intolerance as a young adult (even though until that point I believed gluten intolerance was a made-up condition), and have experienced everything from cluster headaches to stomach ulcers, pinched nerves, fibromyalgia, and more.
Again, as you say, I’m not sharing all this for sympathy. Life with a broken body is the only thing I’ve ever known, and despite all these issues I’ve managed to have some amazing experiences and enjoy plenty of healthy phases along the way. But speaking to other people with similar health issues (like you), it seems that those of us with chronic conditions are particularly sensitive to developing other health problems. Does that ring true for you and, if so, why do you think that might be?
Spoon Theory was developed to explain how chronic illness (especially chronic illness that results in fatigue) affects daily life. You can read more about it here.
PA: Yes, it does ring true, unfortunately. Once the body’s ordinary working system gets messed up in one way, it seems to lose its balance in all kinds of other ways. And I have to say that, bad and worrisome as all your CF problems have been, when you had POTS I nearly lost my mind. Watching you suffer like that—a healthy, athletic teenager lying on the couch all day in pain, for months, unable even to read—was just brutal. Especially before we had a diagnosis. I see the acronym now and just feel a surge of pity for anyone touched by it, and anyone who loves the person touched by it.
ZAN: Me, too. It’s common among Long Covid patients now.
PA: I had something a little similar, maybe a lesser cousin of POTS, so maybe it’s connected to the CF gene we share. I was 40 and working out at the local karate dojo. I’d gotten to the level of brown belt, where the 90-minute workouts were really arduous, and I loved it, and loved being in such good shape. And then, literally in one day, I lost 50% of my cardiovascular capacity, couldn’t sleep, couldn’t digest foods I’d eaten all my life…and that basically went on, in very very slowly diminishing fashion, for nine years. I had to quit the dojo, had to stop working out hard, something I’d loved from the time I was 14. I’d have these ‘spells’ a few times a day where I’d have so little energy that I’d need to summon all my concentration just to walk up a set of steps. Making the hour-and-a-half drive to Bennington College on a couple hours of sleep and teaching all day before driving home again was a challenge. I used to try to nap on my office’s wooden floor.
I’m free of whatever that was now, finally, the only reminder being the weird symptom that, if I get my heartbeat up in late afternoon—mowing the lawn, walking up a steep hill—I can’t get to sleep until about two a.m. Who knows what it was? During those years, I went to every imaginable kind of doctor and health practitioner, spent all my savings on various alternative treatments, and no one ever figured it out. Like you, in a lot of medical offices, I heard doctors say: “But you look so healthy!”
Right. Thanks. And I’m sure the few people I told thought I was a classic head case.
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