Chances given and taken

Still moving forward after 12+ years of illness 👠

Hi reader! Below is the second part to my story of chronic illness. If you missed the first essay or need a refresher, I recommend reading Patience for the patient to gain context and then returning here.

Patience for the patient

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In 2017, my first round of treatment ends. Somehow, I gain enough strength to hold a job again. My interviewer (and soon-to-be manager) tells me I’ll take a chance on you, and it’s the happiest news I’ve heard in awhile.

I spend five days a week supporting kids with complex physical disabilities. In the classroom, we all learn from each other—students and teachers and assistants alike. Everyone works hard and celebrates widely. It’s a place with little pretense. A holy place.

The job is rewarding, and I imagine building a career at the school. But after six months employed, the early mornings and physical demands wear me down, and I need significant accommodations. In a quick act of kindness, my manager takes some of my responsibilities. She keeps saying we want you here!, and with my tasks added to her crowded to-do list, I know she means it.

*

Eventually, a well-timed opportunity pops up, giving me the chance to move out of state. I quit the job that’s been too good to me and begin the goodbyes. The move happens less than a month later, just before Thanksgiving.

It’s unclear whether my health will hold up or if I can work enough to pay for necessities or if several weeks later, I’ll have regretted the whole thing and driven my station wagon back down to my mom’s. But I don’t see the move as an experiment. I’m stubborn and determined to make my home in Georgia.

Before meeting people, I find solace in anonymity. I walk the trails near my house daily, starting with 10 minute jaunts till one day, I can last an hour. The movement becomes habit and a means to process my life. With no one to wow or please, I mutter prayers to God. Squirrels stare, but they don’t really give a damn. Neither do I.

Winter’s hush beckons me to honest reflection, and I attend to the emotions inside me. As I pay closer attention, I realize the losses in my life have piled up. Many of my friends have what I don’t: fine health, partners (or at least a dating life!), degrees, full-time jobs. They aren’t quantifying the day in spoons or making plans or saying no based on forecasted fatigue.¹ I envy the nimble way they move through life, seemingly unbound by their bodies. In addition to chronic illness, there’s familial trauma, too. From Florida to Georgia, the sadness hurtles across state lines, lengthening its reach.

Over time, grief becomes a shapeshifter whose patterns I can’t understand. All of it is beyond what I can manage. I return to my hallmarks of coping: restricting food, losing myself in service to others, engaging in lopsided relationships. Depression becomes my body’s newest tenant. I wonder why I am even here.

*

After neglecting my needs to the point of self-sabotage, I see a new physician in 2019 and start a different medication. I learn it is possible for a man in a white coat to listen without judgment. He doesn’t have many answers, but he believes what I say.

Next, I meet a specialist who diagnoses me with two genetic mutations. After hearing my roster of symptoms, she tells me I’m certain you’ll live a pain free life. She’s confident she can help. Believing her would mean risking disappointment for a chance at some puzzling, wonderful, near impossibility. I open my heart to hope and begin a third round of treatment. Simultaneously, a pandemic sweeps across the globe.

Then the IV therapy backfires and labs show tortoise-paced progress and new medication provides no relief. The office takes a month to return my calls and refill a necessary prescription. My boyfriend rescues me from a Kroger parking lot, miserable and shaky and hardly myself.² Finally, while on a long weekend at a cabin, the specialist calls. Your body isn’t responding, we have nothing left to try, and oh, we lost all of your paperwork. I hang up, emotionless. The sky cries on my behalf.

*

It’s 2022, and I stop playing medical detective. No longer suspended from reality, I face the losses of my late teens through my twenties, and I accept them. This act doesn’t come with a ceremony, trophy, or even a speech. It is a quiet forbearance, one which began all those years ago in my first therapist’s office. I learn the path to acceptance often starts with grief.

I explore more of my story and poke at questions, beliefs, and experiences in ways a younger, more certain version of myself might find surprising. In doing so, I’m ushered into greater spaciousness—a word my boyfriend loves to use. The illnesses don’t disappear, but how I feel about and engage with my life shifts. And each moment starts to feel like grace.

I take better care of myself, work full time at a software company, use my mind daily to problem solve, have my own apartment in a gorgeous part of the city, and continue to walk further from self-hatred and those disordered ways of thinking, eating, living, relating. I’m not staring down a claw machine, hoping to grasp fragments of my old life and self. I hold my quirks and shortcomings and dreams and needs with gentleness. I start to feel at home in my body. It is no longer a scary place.

*

There is a brief time where I’m well enough to be truly active, the first in 11 whole years. I try hiking, swimming, tubing, rock climbing, and working out. Each in tiny doses, but still, remarkable. All those action verbs, suddenly possible? I wonder if all future happinesses in life will feel this sweet. I feel like the tourists in Oz, experiencing a day in the Emerald City.³ So much to see, so much to do!

Friends wonder what happened, but I have no magic tricks to share. Maybe it’s working with therapists for five years? Falling in love? Exercising? Or God? I don’t have answers for this either. I simply take it as a gift.

My darling Aaron and I get engaged. We are two best friends who share many dreams about the wonderful life we want to make. The list is long, and we’re eager to get started. Our wedding day is bliss, and we are starry-eyed till I’m cough-cough-coughing on our honeymoon. It’s C*VID, a second time, unleashing symptoms of the past in a mad dash. My health altered, again, this time at the start of our marriage.

I rifle through the shame and he the disappointment, all of it inevitable perhaps. My heart—no, our hearts—are both heavy and full. The weight of our love, this sacred commitment, measured already against those vows, in sickness and in health.

*

I don’t have a masterful way to end this essay, which might frustrate some and comfort others. Even I find myself swaying between those two conflicting feelings these days. Aaron and I could play Guess Who? forever, trying to describe, eliminate, and make our best determinations on what exactly is going on in my body. I still go to new doctors, repeat my story, and subject myself to the persistent, painful question: will you believe me? Most don’t.

If I could spend one short day apart from these amplified symptoms, I’d be so happy. But we know multiple illnesses and conditions have crossed the street and come knocking. Since they haven’t gone away, I sure as heck want to learn that secret of living, no matter the situation.⁴ Although sometimes my faith is fragile and God seems to tinker behind a machine, pretending to know what he’s doing, I hold to my most basic beliefs. I am not alone as I move towards a wider place.

Over 12 years of chronic illness is long enough to embitter the soul. It could happen to any of us. But astonishingly, I like where I am in my story, more than ever. This is a measure of healing, in its own way, and one I didn’t expect. I receive it as a divine sort of grace to keep going. And keep going I shall. 🌈

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I’d love to hear from you

If you’ve made it through both essays, phew! Thank you for trusting me with your time and being open to learning about my experience. It wasn’t easy to write and took a few months, but I’m glad I did it.

I’m curious:

• How did this story resonate with you?

• Did anything make you feel encouraged or challenged?

• What would you like to know more about?

Please comment with your thoughts or questions if you’re comfy with that. It’s always so special hearing from y’all!

Happy new year, everyone.
—E.T.

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1. The spoon theory is a metaphor to describe the limited amount of “spoons” (energy) someone might have in a day based on their chronic illness, disability, mental illness, etc.

2. Boyfriend = my now husband, Aaron!

3. I can’t stop thinking about the song “One Short Day” from Stephen Schwartz’s Wicked. 🏰

“One short day
In the Emerald City
One short day
Full of so much to do
Every way
That you look in this city
There's something exquisite
You'll want to visit
Before the day's through!”

4. Philippians 4:12