Patience for the patient

Reflecting on a dozen years of chronic illness ⏰

L. Frank Baum’s The Wizard of Oz. Illustrated by Michael Hague.

12 summers ago, weeks after crossing into legal adulthood, I became ill. I was recovering from a supposed flu when I started to experience memory loss.

Through years of ballet, my ability to remember had sharpened to a fine point. I could reach my toes and memories with little effort. Forgetfulness, for me, was uncanny. But that summer of 2011—quickly, and with alarm—my cognitive abilities stiffened. They would remain that way for thousands of future stretches.

Like a faithful oil leak, other symptoms begin to show themselves, puddling into a darkness I fear will permeate my life. I wake every morning to pain all over. I feel a closeness to the Tin Man from The Wizard of Oz with a stiff neck, rusted joints, and heart elsewhere.

Fatigue drapes over me. Anything and everything is too exhausting. I had once been so lively, so active, so full of giggles. I try to will my body into cooperation, showing people what an overcomer I am. But every time, I end up back in bed, defeated and grieved.

For the next four-ish years, my parents and I pursue a diagnosis. I fill out new patient forms in Hawaii, Florida, and Virginia. In the seventh year of illness, Georgia is added to the lineup.

A discernible pattern emerges as I move through the medical world, and it unnerves me. I list my symptoms over and over and over and hear the doctors’ chorus rise: you’re making this up, you’re just homesick, how about antidepressants?, there’s nothing I can do for you, everything is normal.

It’s true, my blood gives little insight, but the constant dismissal and skepticism from medical professionals is a middle finger to my pain. I want to be seen by a doctor. That is, after all, what I think they are for. Seeing patients. Why do I feel so… invisible?

My body is an equation no one I approach wants to solve. I know something inside is wrong, but over time, it feels more like I am in the wrong. As a lifelong goody-two-shoes, I say nothing back to the silent shrugs or irreverent comments. Maybe it’s what I deserve, though I’m not sure why.

*

When my symptoms first begin, I’m in vocational ministry and far too young to know what I am doing. But I’m confident this is the life God wants for me. The Christian faith of my youth was bolstered through certitude, and this is no different. I tell God I’ll go anywhere and do anything for him. It’s only a couple of months later that my health declines.

When you’re part of a faith community fixated on the supernatural, stories of healing are commonplace. My body becomes a case study for the would-be miraculous. Hundreds of people lay their hands on me, praying for pain to leave. Seconds later, I’m asked to report back. Notice anything different? Feeling better?? they’d want to know.

If I experience relief, it’s temporary. Placebo, perhaps? Most often, nothing happens at all, and I worry I’ll somehow let friends and strangers down.

Other times, I feel worse after receiving prayer. How do you tell someone that? I don’t know how to speak up for myself. I don’t want to embarrass or offend. I’m not sure the theology in the room can hold this type of disruption.

I’m told just have more faith and repent for hidden sin! and your family line must be cursed. The goal is to remove any barrier standing between God and me. If I could, then I’d make my way over the rainbow and closer to God’s healing hand.

Well, the miraculous doesn’t arrive. So, naturally, I believe the error is with me. Just like in those doctors’ offices, shame tucks into my heart, and I start to hate myself.

*

Around Christmas 2015, while living with my parents again, the illness finally gets a name. It’s Lyme disease.

Getting to this point required rabbit trails of research, but my suspicion of Lyme is most reinforced by a different source altogether—my own memory. In a way that has to be providential, I remember a crucial detail from that fateful summer.

A month before the onset of symptoms, I visited a Connecticut farm. There, I’d developed an aggravating rash on my chest and gotten sick, which I forgot about soon after. I check with an old friend from that trip and sure enough, they confirm I’d complained about this rash.

Once I’m given a diagnosis, I begin treatment. The goal is to scoot these unwanted bacteria minions out my body, but their obstinance extends the treatment timeline beyond what I’m prepared for.

I spend 15 months unemployed and at home. People say I inspire them, they don’t know how I do it. I’m weak and sick and lonely—not extraordinary.

To fill my time, I read and read, expanding the range of topics and genres, and growing my heart in new directions. I finish 50 books from my bed. When I read Anthony Doerr’s All the Light We Cannot See, I hold tight to these words: “…it is not bravery; I have no choice. I wake up and live my life. Don’t you do the same?”

All of these stories bring me to deeper and different ways of thinking about, being in, and relating to the world. My curiosity takes me down some roads more than others, and as I follow, I see life beyond spiritual platitudes, manmade certainty, and the shame ever-knocking at my door.

Whether treatment works or not, I want to move toward accepting that this is and has been my life. A friend knows I could use help and sends money in the mail, encouraging me to use it to start therapy. I have so much free time, I might as well.

I tell my new therapist nothing super terrible has happened! and then describe losing my health, cognitive abilities, ministry and job opportunities, friendships, and sense of identity. I use well, at least… language to make sure she knows I’m grateful and holy and not at all self-pitiful. (ha!)

She listens. There is a softness in her eyes, and she seems moved by what I have to share. The experience is almost weird. I’m used to being belittled, not believed in. But after several sessions, I, in the Tin Man’s words, start to “…register emotion, jealousy, devotion. And really feel the part.”¹ I no longer have to hide what I feel. It's a baffling and welcomed change, and I notice my heart is waking up.

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A quick note

This is the first of two essays covering my story of chronic illness. Writing it was cathartic, and getting to share these words with you feels special. 😌

Do you have any thoughts or questions for me? Can you relate to any of these experiences? Let’s chat in the comments! (My only request is that we’d refrain from giving each other medical advice there. That can be such a tender topic, you know?)

Talk soon,
—E.T.

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Update: here’s the next post in the series!

1. “If I Only Had a Heart” from The Wizard of Oz.