Rainbow
- jms685
- May 26
- 6 min read
Yesterday, as I sat with my friend Deidre, working on the TEDx Talk that I’m fervently hoping to give someday, I admitted to her that when I attended Bismarck’s TEDx event in August 2021, I was scared to go. By myself. To the Bismarck Event Center.
A 37-year-old woman and married mother of three children, worried about driving a few miles away, to sit in a conference center, to hear speakers for the day, alone. Because she was so afraid.
Afraid of what? The panic attacks that had steadily persisted since she first broke down in March of that year. The depression that had claimed a few months of her life, including her baby’s first birthday in April. The anxiety that swelled in her like icy waters.
Three years after her AE onset and the loss of her beloved career, and two years after a stressful and high-risk pregnancy, with a global pandemic sprinkled in, had all been too much, for too long, and she was still disrupted. And damaged.
Of course that broken and fragile woman was me. And I lived in a constant state of terror. Of being by myself, of my health, of the constant uncertainty, of life. Each day transported me back to 2018, and as I attempted getting through, I constantly wondered if there’d ever be a way out.
It’s gotten harder to remember the days of what became the worst time of my life. That first year living with AE. My existence spent in tortured isolation, where I hoped my eyes would come back into focus, I could use my right arm, where my chest didn’t feel like it would explode all twenty-four hours of the excruciating days. Where I kept to myself, struggled with memory, shut-out the world, and began my days at the steroid-induced hours of midnight or 1 a.m.
Where I spent an inordinate amount of time questioning whether a “full recovery” from AE was possible, no matter what my beloved geniuses Doctors McKeon and Zekeridou said. And even if it was, I grappled with how I’d ever quantify it and obsessively ruminated about how I’d prove it to others.
As I look back, I’m fairly convinced that I was quite assured that AE had won the battle it waged. And I’d never make it to a place of higher ground.
Over and over I turned about the question in my mind that poor-mental-health-Melvin (Jack Nicholson in “As Good As It Gets”) seriously and maniacally asks a group of depressed patients: “What if this is as good as it gets?” The thought haunted me.
Because I believed it. This terrible, horrible place. This is as good as it gets for me.
But did I? Did I believe the mud pit of horse manure where I had landed was the place I’d forever stay?
I don’t think I did. Actually, I did not believe that.
That does sound a bit insane, just like poor Melvin, but it’s true. Both sentiments felt true, and I held them simultaneously in the palm of my hand. I’ll never get through this. This is it. My life is over. I’m stuck in the worst. Right here will be as good as it gets. Yet at the same time: I cannot let AE ruin me. I have to rise up. Just Keep Swimming. Better Days Ahead. I’ll die trying. I will make another life for myself.
And it will be a damn good one.
Make it make sense, Jackie. Help me understand. If you’re obsessively replaying Melvin’s words, but you’ve also decided to prove to yourself that you’ll will your way out, what won the battle of the thoughts?
One word. One tiny word won the day each day, and eventually, it was undefeated: Hope.
Hope.
Somehow, someway, my hope in my SuRvival, my Recovery, and the ability to Rebuild my life, was victorious. All else seemed lost. Except for the one thing that I never lost: Hope.
In all the dismal reality, it was all I had to cling to.
Because I never wanted to concede where I was at was as good as it would get. I couldn’t imagine returning to a life where I didn’t recognize me, with my personality robbed. I couldn’t bear living in a world where I wasn’t present for my kids. I couldn’t envision the day-to-day without my productivity and worth. I couldn’t swallow that if I had lost my career, income, and identity, that I’d absolutely lost everything.
For that year, and a long time after, my daily reality sucked.
But through all life’s inclement weather, there was always a colorful glimmer of something else. I couldn’t identify it in those early days, nor could I always see it in the years that followed when I continued to face hurdles in my long course.
Yet there it always was. Hope.
Hope required me to recite the events of 2018 for the course of that year of survival, so I could spew it all out on paper. So it could turn into my memoir, Unwillable.
Hope required me to dig way back into the archives of my mind and hear my mother’s words from high school: “To be a motivational speaker, first you need a career, and then you need some type of special story.”
Hope made me acquiesce to Sean when he said, “Let’s start a podcast together. Please! Just five shows, let’s just do five shows leading up to World Encephalitis Day.”
Hope told me to write. To write and write and write. On CaringBridge and then a blog. Jot down your thoughts about AE, resilience, and the stories of others. Show the world that there’s a way through.
Hope asked me to infiltrate the AE community. To find others and be the voice and friend I so desperately wished I’d had in 2018. To meet with others for hugs and swapping tales, so no one feels alone with this most dreadful illness.
Hope nudged me to take chances. To write emails to famous people, to make videos, to create, to share, to speak, to sing, and to wear bold colors.
Hope required me to be brave. To share my whole story, warts and all.
Hope promised me, that if I just stayed at it, I’d be the best mom to my kids, a great wife, and a professional, independent woman again.
Hope pushed me. It told me that slowly but surely, if I’d grit my teeth and bear it for a while, I’d learn to fly solo again.
Hope asked me to be patient, for years and years. It assured me that life would knock my ass down and repeatedly punch me in the face, but it also promised me if I Just Kept Swimming through it all, it would lead me to Better Days Ahead.
Hope guaranteed me that I would become the person I recognized. That I would be me again.
As I look back, hope never lied to me or led me astray. It promised me life would be hard, but it also assured me that I was up to the challenge. It guaranteed mountains, but gave me the courage to climb them.
Hope demanded I accept that life’s together both hard and beautiful – and that I only control my reaction.
Overall, the most beautiful part of hope, is how it continues to remind me, that right now, in all my days,
Life
is
as
Good
as
it
Gets.
Seven years. Seven years today, May 26, 2025. Seven years of AE-symptom and seizure free! Seven strong years of remission! Thank you, Lord. Hallelujah.
Life will take. It will grab and pull. But it gives, too. It always allows for hope.
Hope is what kept me swimming and believing.
Let hope spring eternal, friends. And thank you for riding with me for all these seven years.
Love,
jackie
"When it rains, it pours
But you didn’t even notice it ain’t rainin’ anymore
It's hard to breathe when all you know is
The struggle of stayin’ above the risin’ water line
"Well, the sky has finally opened
The rain and wind stopped blowin’
But you’re stuck out in the same ol’ storm again
You hold tight to your umbrella
Well, darlin’, I'm just tryin’ to tell ya
That there’s always been a rainbow hangin’ over your head
"Oh, tie up the bow, take off your coat, and take a look around
Everything is alright now
"‘Cause the sky has finally opened
The rain and wind stopped blowin’
But you’re stuck out in the same ol’ storm again
Let go of your umbrella‘
Cause, darlin’, I'm just trying to tell ya
That there's always been a rainbow hangin’ over your head
"Yeah, there's always been a rainbow hangin’ over your head
It’ll all be alright"
__________
/ / 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. / /