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Bridge Over Troubled Water




If you know me or follow my social media, then you know I believe that every single thing that comes out of Kate Bowler’s mouth is perfect. If you lead what she has coined a “Beautiful, Terrible” life (which means you’re human) she’ll land for you, too. But she especially lands for those of us who make constant doctor’s appointments and medical uncertainty a way of life.

 

(Kate’s book “Everything Happens for a Reason: And Other Lies I’ve Loved” is a beautiful memoir about her working as a Duke Divinity professor and prosperity gospel scholar when she was diagnosed with late-stage colon cancer. I highly recommend it and her other books. She’s also a joy on social media and her podcast, “Everything Happens.” Humanities North Dakota is hosting an event for her this fall, and I’ve already claimed the spot up front, next to her, for a new level of my stalking!)

 

I’m not sure whether I heard Kate say this or she wrote it, but it was so profound to me, I saved it: “There is this death by a thousand papercuts kind of feeling. Over years of uncertainty or chronic illness or chronic caregiving, these seemingly small losses compound over time, and can lead to a pervasive sense of exhaustion or even hopelessness.”

 

Last week in particular, I had to channel that beautiful, terrible energy when I felt like I couldn’t overcome my multiple tiny wounds. Because it has been one heck of a few months in the non-romcom we call “These Are the Days of Jackie’s Medically Hectic Lives.”

 

(Yesterday, a new-to-me doctor told me, “You are more than a handful. You are a double handful.” He’s really sweet. And he’s not lying.)

 

Actually, it’s already been a year. And it’s only May.

 

In all honesty, it’s all been terribly overwhelming since 2018. I mostly mean my health, but also, I kind of mean life.

 

(If you’re new to me, I was diagnosed with autoimmune encephalitis in 2018 and I almost died. And I had to give up my lawyerness. I now live with serious, devastating, demanding, complicated, and chronic health conditions. And grief. But I also believe myself to be a PT comedian and people often tell me I look “well,” so I do have that going for me!!)

 

Have you ever wondered how to spot someone with chronic health conditions in the wild? I’ll tell you: 7 out of the 10 times you see us, we’ve come from a blood draw and have bandages or IV bruises on our arms. We also have a look in our eyes, if you’re close enough. Depending on the day, no matter the smile, those in the know can detect in us what Kate calls the pervasive sense of exhaustion and sometimes, hopelessness.


Real get real. And folks with serious underlying health conditions get serious underlying health conditions. You been through hell, you get hell.

 

No matter my wide smiles, OOTD, or hilarity, the exhaustion from my hypersomnia alone can make my life challenging. Add in one more condition, one more specialty, one more hard phone call from the doc, one more decision on whether to experiment with a drug, one more appointment, one more blood draw, one more week of waiting for tests to pop up on your portal, one more confused nurse to redirect, one more long explanation, one more x-ray, one more call to the insurance company, another loud clanking MRI surrounding you, another waiting room blaring the news, another copay or prepay, another bill… Until all those little, tiny cuts proliferate. And you start to wonder when one will finally go a little too deep. Then you question whether anyone can stop that kind of bleeding.

 

It unravels you. It gnaws at you.


Oftentimes, it takes some help to put yourself back together. And you wonder whether anyone other than God himself can really succeed.

 

(My faith usually wins the day. I believe in miracles. I’ve witnessed them. I believe I’ve found meaning in the pain of autoimmune encephalitis. I believe God grants us free will. I believe that you have to make space in the palm of your hand for all the beauty and cruelty of life. I’ve learned a lot of this from Kate. And from Suleika.)

 

If you know me or you follow my social media, you know that I believe Suleika Jaouad is one of the most amazing humans ever. And that everything she writes is the most beautiful and perfect thing I’ve ever read. Especially as a sickly person. Her memoir, “Between Two Kingdoms: A Memoir of a Life Interrupted,” is probably one of the top five greatest memoirs of all time.

 

(I highly recommend her book. Chronic illness or not. When you get to the part about everyone having dual citizenship in the land of the sick and the land of the well, it breaks you a little. And if you’re new to Suleika, I recommend this article in The Atlantic by a great journalist who suffers from long-Covid, which is quite similar to patients with long-autoimmune encephalitis. Kate also interviewed Suleika on her podcast, and it was fantastic.)

 

If my counselor has taught me one thing, one piece of wisdom that has resonated with me the most through all the work I’ve done the past four years, it’s this: On some academic level, we all know that life is unfair. Life can be short. Really bad things can and do happen to anyone. It’s one thing to know it; it’s another to have it happen to you.

 

I’ve done some hard time in the land of the infirm. I spent many days living with the blissful notion that I controlled life and made it my own.

 

I was an autoimmune encephalitis patient at the Mayo Clinic.

 

I was a self-employed trial lawyer, with a stay-at-home husband, two kids, and an Audi.

 

I’ve had specialized doctors tell me, “This is fairly unique and unheard of,” and “We don’t know.”

 

I plowed my way to a black belt and paved my way through law school.

 

But for the right now, the recent past, and hopefully for long into the future, I’ll probably take up my residence right smack dab between the desperate and destined, and the bleak and beauty. Or in the case of Kate Bowler’s Venn diagram, that middle spot of limited agency, scrunched between the drastic feelings of everything’s possible and nothing’s possible.

Papercuts, deep wounds, and all, I’ll continue to embrace that in-between and take pride in the agency I still occupy, and the faith and hope that keep me moving ahead.

 

I’ll channel my resilience as I keep swimming and keep showing up. No matter what.

 

I carry perspective like an umbrella. And faith as my walking stick.

 

Because what I realized today for the umpteenth time, is that I carry the beauty and the cruelty alongside one another. I have beautiful, terrible days. And that no matter how hard I try, I cannot see any part of my life that hasn’t yet worked out in some way or another.

 

Papercuts be damned. I still got this.

 

And I hope that you do, too.

 

Luv,

jackie

 

“When you’re weary

Feeling small

When tears are in your eyes

I’ll dry them all

 

“I’m on your side

Oh, when times get rough

 

“And pain is all around

Like a bridge over troubled water

I will lay me down

Like a bridge over troubled water

I will lay me down

Sail on, silver girl, sail on by

Your time has come to shine

All your dreams are on their way” Bridge Over Troubled Water by Simon and Garfunkel

 

__________


/ / The JM Stebbins blog is an autoimmune encephalitis blog from former lawyer and autoimmune encephalitis survivor, Jackie M. Stebbins.


Jackie M. Stebbins is also the author of Unwillable: A Journey to Reclaim my Brain, a book about autoimmune encephalitis, resilience, hope, and survival. / /

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