Relearning Health

May 16, 2017 at 2:58 pm (Uncategorized)

I’ve been out of the hospital for a couple of months now. The symptoms that landed me in the hospital have thankfully abated. There’s been a lot less pain and vertigo. I’m able to drive, to write, to be up and about for a few hours each day. It is wonderful. But I’m also finding it incredibly challenging. It’s like I’ve forgotten how to be healthy.

I’ve become very skilled at being sick, what with all the practice over the past thirteen years in Chronic Town. As the sarcoidosis has hopscotched across my body—from lungs to heart to liver to joints to bones to skin to brain—I’ve had to learn to give up aspects of my life that once gave me pleasure and sustained me. Regular exercise, trips to the grocery store, family dinners, writing, cooking meals, TV or movies with Jay. I hunkered down and learned to let go. You can survive with a pared down life, and I got to be pretty good at it.

The past twelve months have been particularly challenging. It’s hard to believe, but I spent fully half of the last year flat on my back in the hospital. I went from having narrowed life to an empty one. But I adjusted, eking out an existence in the hospital. I shuffled around the building with my IV pole for a walk every day. I listened to countless audio books. I made sure to have questions ready when the doctor made his rounds twice a day. When you spend half a life in the hospital, you are, for all intents and purposes, a professional patient.

So what happens when you come home and start to feel better? Turns out, it’s quite an adjustment. I developed patterns and mindsets based on being sick—on letting go and pulling in. Every morning, I was proud that I could shuffle out of bed and make myself breakfast and drink the cup of coffee Jay made for me. Afterward, though, it was time to go back to bed and lie down, plugging in to an audio book or podcast. Then I’d try to get up and about a little after lunch. Maybe I’d try to call my mom, read the newspaper, or send a couple of texts to friends. I couldn’t overdo it, though, because I wanted to be conscious when Andrew got home from school and have a modicum of energy for a quiet evening with my family. Repeat, ad infinitum.

Except it wasn’t infinite. Not only am I now in less pain, I’m finding that I have more energy. But for a little while, I still caught myself habitually shuffling back to bed after breakfast. It’s like I forgot that I could head from the breakfast table to the shower and then to my office to work. I didn’t remember what it was like to have the stamina to meet friends for coffee, to work, to cook dinner for Jay and Andrew, and still have enough left over to read in bed before sleeping.

This being-more-well thing is a balancing act, though. I still don’t have the physical resources to work for a full day. If I overdo it, I’m exhausted and have a resurgence of pain and vertigo. I need to listen closely to my body—something I continue to find challenging, even after so many years of practice.

But practice is what it comes down to. Life changes every day for all of us, and we have to learn to live amidst constant flux. There’s no way through it but to learn it. And that’s what I’m doing these days—learning to flex my muscles and push myself again. I’m like a toddler with wobbly legs. But I’ll get there.

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May 1, 2017 at 1:51 pm (Uncategorized)

For years I’ve been at war with myself. I’ve been fighting sarcoidosis. I’ve envisioned myself in mortal combat for my life. It’s not just me that’s been thinking about warfare. I’ve had doctors talk to me about killing the disease, and friends encourage me to keep fighting. For the 13 long years I’ve been in Chronic Town, I’ve kept at, getting medication dripped into me that promises to be ferocious. Just a few days ago, I got an all-day infusion of Cytoxan—literally “cell killer”— in an attempt to manage yet another flare up of this damn disease.

As the IV dripped into me, my mind wandered. It has a tendency to do this on infusion days because I need horse doses of Benadryl to tolerate the toxins they call medicine. Cell killer. Just whose cells are getting killed? The idea, of course, is both to suppress my immune system that has gone awry and to target fast-growth cells that build the troublesome little balls called granulomae that are the hallmark of sarcoidosis. Usually I stop there. I’m a good patient. I follow doctors’ orders, swallow my pills on schedule, and have never once in nine years missed a chemo appointment. “You’re a fighter,” I’ve had more than one doctor tell me in praise. Part of my self-imposed job description has been not to think too hard about just whose cells my cell killer is obliterating. I’ve kept my head down and fought on.

But lately I’ve been picking my head up and taking a look around me. The nature of autoimmune diseases is problematic, even as a concept. It’s one thing to be invaded by a foreign attacker, say, bacteria, but quite another to have one’s own body turn against itself. How do you treat that? Strip away the clinical language of “suppressing an overactive immune system” or “targeting fast growth cells” and you are left with the idea of going after yourself, a kind of “we had to destroy the village in order to save it” type of thinking.

I’m tired. Being at war against oneself for thirteen years is just plain exhausting. Nine years of chemo is brutal. I’ll admit there are days when I intend to give up, to call it quits on all “treatment” options and let the proverbial chips fall where they may. Sometimes that sounds like the easiest path. But what is easiest is not always best. No, I am looking for something more nuanced than being a quitter. I’m not ready to consign myself yet to a life wholly bedridden or to death. I just want some peace.

How can I find it? I think it starts by changing of how I conceive of the disease. I’ve had enough of the language of warfare when it comes to my body. When I envision every day as a “fight” for normality, for a modicum of health, I’m simply wearing myself down more. I believe language matters. And the little voices in the back of my mind need a new script. No more battling, grinding, struggling, attacking, fighting—or, at least less of it. I’m aiming for way of living with this disease. After all, the disease is of me and in me. It pulses in time with my heart, flows through my veins. Living in a state of civil war for the rest of my life just isn’t possible.

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