Long Haul by Miriam Sagan

As my friends and readers know, in 1976 I was stricken with flu, possible swine flu, possibly a seasonal variant. My 21-year-old immune system kicked into high gear, and attacked…me. After dramatic surgery, I spent many weeks in the ICU, and months in the Beth Israel Hospital in Boston. I lost my right lung, mobility in my arm, leg, and torso, and the sense of ownership of my body. I would never feel “young” or pain-free again. I was detoxed off of morphine, discharged, and left to reconstruct myself. My world did not include any concept of healing.

I wasn’t dead–and I was on my own.

That is the basic version, but it is also a tale full of questions and obscurity. Forty-five years later, I’m still parsing it out. In my sixties, I basically thought of myself as disabled but grateful for my mobility–hard-won with endless PT, exercise, and a trusty cane. I thought of myself as happy–thrilled–to have lived long enough to consider myself an old lady and to experience having a grandchild. I thought of myself as someone with chronic pain and fatigue–sort of like arthritis or fibromyalgia. And I thought of myself as unique–and sometimes in a fit of self-pity, utterly alone.

When a slightly older friend heart-breakingly died of post-polio syndrome, I saw something of myself in her. What did a viral load really mean? I’ve had PT’s tell me I had neurological damage, but leave it without details. I’ve had PT’s tell me that my jumping muscles, spasms, neuralgia, tingling, numbness, and more, are…well, somehow connected.

But again, I’m not in any cohort. What happened was rare enough that it might be close to unique.

Enter covid. I don’t like to say anything positive about the pandemic, but it has given me a rush of insight. Reading about covid long-haulers, I certainly see the similarities. I have empathy, of course. But I’m also surprised by the narrowness of our model of disease–you get sick. And then you recover. This might be true of strep throat treated with antibiotics. but it certainly isn’t true of most disease–not chronic conditions, not many cancers or heart attacks or strokes, and not numerous viruses.

Long haul response is somehow seen as a failure–of treatment, of the patient. And yet anyone who has been seriously ill usually has some lifelong after-effects, and not just physical ones. This leads me to the question–do I wish this had not happened to me? The answer is NO.

I’m not glad I almost died and walk with a cane, but I am very glad that I learned about the reality of death at a young age. To not waste time. To not live inauthentically. To not take my body for granted. To not believe in some false idea of health and youth. To know where my organs are located. To understand how to breathe. To have joie de vivre and a bit of hedonism. To not be shocked by mortality.

I can credit almost every important decision I’ve made–to persist as a writer, to move to New Mexico, to recover from widowhood, to wear loud, bold colors, to swear whenever I want to–to my having been sick.

I wish I could say that covid has made me feel more connected to others, but it hasn’t. Forty-five years of my own philosophies and character have forged me into someone who by necessity must think for herself. And that can be a sloppy, confused, and lonesome process. But what would I be without it?

Thank you, still unknown virus, that made me who I am.