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.

1 Comment

  1. reasonablesandra said,

    So hard to imagine what it’s like to be you. Thanks for keeping it real.

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