Happy 4th Birthday, Unwillable!

May the 4^th be with you, and also … Unwillable!

Today is Unwillable’s fourth birthday! In honor of its publication anniversary, and because my kids have me far too busy this spring to do anything but fly by the seat of my tired pants, I’m going to write and publish this in real time.

Since the book’s initial publication in 2022, I’ve received more beautiful feedback than I can possibly remember. I’ve often said I wish I could take every message and put them in a bottle. Alas …

But as I tap my weary mom-mind this morning, an overwhelming number of words and faces flood over me. Like my homeboy Elton says, “I hope you don’t mind, I hoopppeee youuuu don’t mindddddd, that I put down in the wordsss. How wonderful life is while [Unwillable is] in the world.” 

One of the first notes I received was from a legendary lawyer, Sherry. I’m sure I was a terrible pain in her side as we battled out cases, yet we became close upon her retirement. She told me that as she and her family went back through her mother, Betty’s (a giant in our community) things, they realized just how much her book had changed life for her.

I couldn’t see it at the time, but Sherry’s words were poignant. Unwillable was about to change everything in my life, but in the best way possible!

From its inception through today, it has been one hell of a journey!

As I say in speeches and in my book, upon my brain reuniting with my conscious mind in 2018, I understood a woman had written an important book about our illness, called Brain on Fire. I knew she had made a full recovery through those causal, little words on the cover, NYT #1 bestseller! Something inside of me (presumably my stubborn stupid driven persistence that forever plagued me) said, She wrote a book, now I’m going to write a book! That’s how I will recover.

Who does that?

Considering that at the time my brain was broken, I had little short-term memory, and my eyes were still too out of focus to read, that was a giant leap, even for the likes of Jackie’s willpower. But I vowed to do it. And … you know me.

For three years, I wrestled with … everything: My health, survival, (still!) denied mental health, what the hell had happened to me, grammar, interviews to piece together my story through my amnesia, and oh yeah … how the hell to write a book?!

For one year straight, I wrote an autobiography and probably a treatise on my hometown and practicing law. I had a lot to learn about “memoir.” It was after that year that Humanities scholar and my dear friend, Clay Jenkinson, started pumping the brakes and we began our cat fighting.

I believe that I set out to write a book for two reasons: 1) (publicly) to help others affected by my condition and 2) (privately) to set the story straight. I was fragile and devastated by my condition. I didn’t want other AE survivors to feel alone on an island, and I was desperate for people to understand what happened to me. In my myopic view, that was all I needed to accomplish. And that’s where the claws came out.

Clay persistently worked to get me to understand that this book was: 1) to reach a broader audience than the AE community (which is admittedly small) and 2) NOT about what HAPPENED TO ME, rather it was about WHAT I DID after!

(If you know me and you know him, well … haha! When the second edition was released on May 4, 2024, with a new foreword where I admitted he was (whisper) right … he threatened to take out a billboard in Bismarck!)

I worked in a vacuum for almost two years, before I even showed my own mother, who patiently answered my constant calls for information and snippets of her journal, and husband. She and Sean selflessly suffered through voluminous, painful interviews with me. They never doubted me or asked me to stop. They knew: 1) I was on a mission and AE or not, wouldn’t be deterred and 2) That I desperately needed it. But it was so damn hard.

General Clay’s work was to break me. I vividly recall his email where he told me to go back to basics. Write brief sentences with a subject and verb. Stop repeating yourself (legal writing habit). This book needs to be 60,000-70,000 words MAX (not my 100K+). And for the love of God, he threatened, stop using the word incredible!

I only had a few casual calls with the legend himself, my beloved Tony Bender, during that time. I mostly called him to whine when I was mad at Clay, which gave him enormous pleasure. He was always gentle and patient with me. His advice was cheerful and aspirational. He said, “Give people insomnia! Make them want to stay up to keep reading.” He noted that he loved long, flowing, run-on sentences. But he edited them. And that incredible was a powerful word. Although one to be used sparingly, like once every one hundred thousand words (which he claimed was a “shit load” of words!)

Outside of my limited convos with those two, I held off on any feedback for those years mostly as a matter of ego, thinking I’d quickly pick up the necessary skills, and to keep all the horrors to myself. But my pride was quashed when even cheerleader-literary-Mom, told me, “You’re getting there! It just needs … something.” So I turned to my friend, Wolfgang, an author with a Master’s degree in English, who let me down gently, but affirmatively: “This book is nowhere near ready for anything. You need to put it away and start reading other memoirs.” I was devastated. With my last tinge of hope, I turned to my friend and philosopher, Dr. Jack. He too was careful with me, but firm: “You need a writing class.” He and his English professor wife, Dr. Kim, led to me to the Loft Literary Center in MN. It all felt brutal, but was also the perfect trifecta.

I set off again to work tirelessly. I had to figure out not only how to write a book, but how to write a good one! But it was so damn hard.

For that final year, I read every memoir I could hold (sans Brain on Fire, I vowed not to read that until mine went to publication) and took an intensive, online writing class with Kate at the Loft. I repeatedly printed my pages, gutted them, and rewrote.

Eventually, I saw the pieces fit together, and so did Mom. And then serendipity led me to my friend Sue, who did the first rough edit, and gave me the confidence I needed to seek publication.

When I found Calumet Editions in Edina, MN, the work wasn’t complete. Lacie had to finalize the initial cover design of my final courtroom scene, Stevie and I had to collaborate on a title, and Rick had to copy edit. For two weeks, Rick and I spent probably twenty hours together on the phone and I read the book about five times to his ten.

On May 4, 2022, Unwillable was finally released into the wild. And Sherry’s advice began to play out.

On June 1, 2022, we held a launch party in Bismarck. We didn’t know then that Dad only had one more year with us, and Tony, who had driven to Bismarck, only had two left. Family, friends, judges, lawyers, my old office, and a high school basketball teammate who drove almost three hours and I hadn’t seen her in nearly twenty years, gathered to celebrate.

I signed books at locations all over North Dakota. I was joined by old teachers, professors, law school professors and staff, friends from college and their children, friends of my parents, and people who told me they stopped by because it looked like a good time. In Grand Forks, I met my second autoimmune encephalitis survivor. At home, I told Fr. Chris’s mother that he was instrumental in my story. She smiled and told me she had begun to assume the same. My fifth-grade teacher attended, and one of my two fourth grade teachers came to purchase the book for the other, who was on end-of-life care.

At some point, I learned that signing books was more than just lovely on the surface. It was also full of whispers, tears, and people baring their hearts to me. 

In Bismarck, through tears, an old friend told me that she was a recovered alcoholic. She said that Unwillable was just like an AA meeting, a reminder that you aren’t alone. People have told me about abuse, miscarriages, stillborns, addiction, mental health, commitments to the hospital, death, suicide, loneliness, illness, and burnout. My dear friend, Nancy, shared with me that as her husband was dying in the ICU, she read Unwillable to him, and that it felt like a friend was in the room with them. A few weeks ago, a woman cried when she asked me to sign the book to her friend who just lost a baby. A room full of mostly men, cried as they gave me a standing ovation after my keynote, and they wiped away tears when they stood in the book signing line.

My heart has broken hundreds of times with the stories of others, as prompted by my book and story. I have held a lot of hands.

I hosted an event in Bismarck to recognize all the heroes of my story. We gathered at the State College auditorium so Clay could interview (ridicule) me and we could take a group photo. It was there I met the mother of the nurse who cared for me in the psych ward. Upon the release of the book, the news of my name and story spread further, and folks saw themselves in the pages. Some reached out to me through Facebook.

I met Carlie, who was in the throes of a severe health struggle. Her family found me through my hero-physical therapist, and they came to the event. I met her for the first and last time that night. Our encounter was profound and will stay with me forever.

We gathered in my hometown of Bowman at the historic theatre. I’ll never forget seeing my dad slipping in the back in his black coat and a mask. Or my mother-in-law’s tears. She lived with us for a month and ferociously fought to help keep me and the kids alive. My old Taekwondo instructor about broke my back when he hugged me.

I was asked by Encephalitis International to give a global keynote. After that, George, a fellow survivor in the U.K. emailed me to tell me that I was just as he’d pictured me while reading Unwillable. I honestly believe that’s the highest compliment I’ve ever received! He graciously asked me to write a foreword for him. A copy of the published book he sent me sits on my bookcase.

I exchanged a book with the famous playwright, Suzie Miller, at a VIP event for her play, Prima Facie, on Broadway. Had I turned just a hair to my left, I would have seen Dua Lipa walk right next to me. I went whale watching in the Pacific and spoke with Dr. Ava in San Francisco. I met Dr. Dalmau who discovered AE, Robin Williams’s widow, Susan, and an NFL Super Bowl champion at the American Academy of Neurology event in San Diego. I interviewed Brain on Fire’s Susannah Cahalan, who laughed that I called her the Michael Jordan of AE. And I tripped (wiped out) on stage in front of my hero, Kate Bowler.

I have worked with the Autoimmune Encephalitis Alliance staff and founders, and Sean and I attended the Florence Forth race in North Carolina. I’ve interviewed NYC lawyers, a retired FBI agent, a writer from the West Wing, and a famous Booktoker. Because of a book signing event in MN, I met the firefighter who was the first responder to George Floyd. My writing has appeared in the American Bar Association and Psychology Today, and I’ve said a lot of (weird? funny?) things on television and podcasts.

My children have drawn illustrations of the book cover and gifted them to me. When they find purple and green things, they ask Sean to buy them for me. Just yesterday, my eldest told me, “Mom, when I’m older, I’m going to read your book every day.” They know that three copies of each edition wait on the shelf for when they’re ready. Until then, they remain mostly (blissfully) unaware of what happened to us, outside of that mom got sick, quit practice to spend more time with them, and that I seem to go to the doctor quite frequently. My love, Sean, takes on extra duties every day to allow me to share my story with others. He is adamant that I continue to speak and answer every message, so no one has to feel as empty as we did upon my diagnosis.

The feedback I most consistently receive is that people cannot put the book down, and they cannot go to sleep until it’s finished. Man, I miss you, “Uncle” Tony.

I have done more, seen more, and heard more than I ever could have envisioned when I was fighting with Clay about the story arc.

I believe God sent me to law school and to work as a trial lawyer to train for the life I live through Unwillable.

AE survivors across the globe thank me for sharing that book with them and their families. Along with Brain on Fire, it has given them a shared language and emotions and validated their horrific experience. For that, I’m humbled and grateful.

Sherry was correct. Writing a book changed my life. Nevertheless, thank God I persisted, even when it was so damn hard.

People in all walks of life see themselves in my story. And that is the greatest return I ever could have asked for.

JM Stebbins friends, from the bottom of my heart, thank you for all you’ve done for me and for Unwillable! I love you all!

P.S. I’m not sure if the story will ever be “set straight,” as people still have a lot of questions and sometimes my battles feel entirely novel, secret, or misunderstood. It’s OK though. That’s what counseling is for!

__________

/ / 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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