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Countless times I’ve gone back to the June 2018 scene of Sean and I in Ken’s office (our accountant). I’m in shorts and my clipped hair is behind a headband. The pain in my right arm from the fresh shoulder break and dislocation is nearly unbearable, yet it pales in comparison to the financial and professional losses I’m sustaining. Sean has his hand on my knee. And I’m sobbing.


Life was never going to be the same. All that I had worked for, everything that was finally visible from those years of delayed gratification, was instantly demolished.


And in that moment, Ken had the audacity to say, “The Jackie I know isn’t going to take this lying down. The Jackie I know is going to find a way back to the top.”


When I said in Unwillable that I was searing mad at Ken for his sentiments, I wasn’t lying. And if you know my absolute admiration and respect for him, you can imagine just how depleted I felt that day.


Because in those early moments, weeks, months, and long after, an emptiness overtook me. A feeling of pure defeat. It was all over for me and there was nothing I could do to rectify the disastrous situation.


Except there was. I could make a daily choice to decide that I’m not done with life. That I could find some way to do something. To find meaning. To plow ahead.


Thank God Ken had the -a-u-d-a-c-i-t-y- generosity to say to me what he did.


The dark mountain of recovery loomed ahead. It was cold and steep. It was full of pitfalls, hurdles, and rattlesnakes. It was a place untraveled. And any distant path I saw that I believed would provide some respite if only I could reach it, was immediately followed by a downed tree or an unexpected blizzard.


With every ounce of my being, I fought the notion that life after autoimmune encephalitis was both utterly impossible and had to be possible.


In Unwillable’s second edition and new Afterword, my friend Clay gets his public apology. While I was writing the book, we fought repeatedly about the crux of the story. Clay said it was about what I did next. What happened after AE. And he was ultimately right, just as Ken was in those early moments after my diagnosis. But in the same way I was angered at Ken, I was seriously irritated at Clay. How could he not understand that my story was the tragedy of autoimmune encephalitis? And why couldn’t Ken just accept my ruin?

Maybe it’s because of Ken that I’ve felt such an urge to climb. Why even though my body has given me serious limitations, I still envision myself trekking to the top of something. Maybe it’s because of Clay that I continue to write my unfolding story. The story of hope, redemption, and perseverance, not of brain inflammation, hospitals, and weird behavior.


Probably they were both right, but true to my nature, I got pissed off instead of listening.


Maybe through all the hurt and devastation, I really did believe to my core that I’d rise again. That no matter the obstacles in my path, I’d find a way over, around, or under them.


That’s possibly why I feel so pulled to mark my anniversary of AE symptom and seizure free on May 26th by climbing. There’s just something about scaling the side of a bluff or butte. The fear of rattlers is very real to me, but it’s a tiny bit of the thrill.


Mostly, it’s about looking down and seeing the miniscule point from where I started. And just how high I ascended. It’s about knowing that my own two feet carried me to the top. Even if my time there is fleeting, the sun isn’t always beaming, and the trek down adds some extra aches, those few moments where I get to enjoy everything it took to stand in that place are priceless.

As of today, it’s been six years since autoimmune encephalitis tried to maim and kill me. It’s been over two thousand days of reminders to Just Keep Swimming. Seventy-two months of believing in the promise of Better Days Ahead. It’s been the joy and battles of buttes, mountains, and molehills.


On May 26, 2020, only eight weeks after delivering my miracle AE-baby, I scaled the Bowman Butte. And today, on my sixth anniversary, I climbed again. I hoofed up a butte in North Dakota’s badlands, in Medora. My body and mind ask me to do something a bit easier on my weary joints, but my heart goes all in.


Today reminded me that no matter what, I will continue to climb. I will not lie down. Against any odds, I will keep showing up. Hurdles, obstacles, and fears be damned. Uncertainty and medical maladies will not win. They won’t stop me. Because they’ve tried for six years and while they’ve won some battles, they’ll never win the war.


I’ll never stop soaring. I cannot rise enough.

Each week, I walk by Ken’s office a few times. And every single time, I smile as I cross his door.


See you at the top.


JM Stebbins friends, if you find yourself at the base of the mountain, looking up, or at the precipice, gazing out below, know I’m behind you all the way.


Love, jackie


“Feel the rain on your skin

No one else can feel it for you

Only you can let it in

No one else, no one else

Can speak the words on your lips

Drench yourself in words unspoken

Live your life with arms wide open

Today is where your book begins

The rest is still unwritten” ~ Unwritten by Natasha Bedingfield


/ / The JM Stebbins blog is an autoimmune encephalitis blog by 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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