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Heads Carolina Tails California


My first memorable hot-headed experience was in fourth grade basketball. It was my first year of playing organized ball and I snapped at a girl on the other team (after what I’m sure, was a terrible call). My coach got after me. And my parents …


Sometime after that, my dad said, “You’re a legend in your own mind, aren’t you?!” He was chiding me a bit, but there was a message there, too: My parents wanted me to be humble. And kind.


I’ve always had a very healthy ego. And I don’t apologize for it. As a female, it’s my greatest strength and I hope both my girls grow up with unmatched and untamed confidence.


Because here’s the thing: I grew up in a hardworking, go to church on Sundays, and stay-humble community. I also grew up in a red county in a red state. It was hard to be a budding and confident feminist in that place. And it didn’t get much better when I got to (North Dakota) college and law school.


I’ve tried to keep my head down (actually, up) and ignored or retaliated against anyone who unfairly tried to push me back or put me in my so-called place. And I’ve stayed true to myself and to who I know I am. My intentions are to always be confident, resolute in my goals, unapologetically successful, kind, and humble.


Yet no matter my longstanding confidence, autoimmune encephalitis destroyed me. It torched every bit of my ego, agency, independence, professional role, financial world. Everything. I no longer felt my assuredness. I actually swore I’d never be me again.


AE also changed me in unthinkable ways. In a speech just the other day, I explained that my common denominator remains the same: My commitment to my values, ethics, and family. But my numerator has varied.


While it took years for the return to me, to again solidify who I am, I’m proud to say that I did indeed regain my confidence. Yet my ego is tempered by AE’s most disastrous and intense humility check ever.


But it’s not just what the illness did to me that humbles me, it’s what it continues to do to those in my community. I’ll never stop feeling some type of emotion, guilt, and questions to God when I meet others who are mired in the long-term mud of encephalitis.


In March 2022, Sean and I attended the 10th annual Florence Forth race in Durham, North Carolina. Florence tragically died of AE when she was only six, and her parents, along with another set of AE-affected parents, co-founded the Autoimmune Encephalitis Alliance. The trip was my first big AE event, and I met a lot of great new people and friends, but only one other AE survivor: my friend Alison. Being with Alison was so humbling to me. She has a beautiful smile and infectious personality. And I loved the way she kept saying, “But I’m still here. I’m still standing,” as she simultaneously told me about her experience. Her challenges post-diagnosis seemed to be far greater than mine.

This April, Sean and I had the good fortune to attend an Encephalitis Society event in NYC. There, I met the award winning playwright of Prima Facie and former lawyer, Suzie Miller, who had encephalitis in the 90s. We ate at the legendary Sardi’s restaurant and walked into the play (cut the line) behind the creator. It was a trip I never could have envisioned or imagined while I was fighting for my life. And it wasn’t lost on me that I was invited to the table with Suzie, Dr. Ava, and others (like Brittany who once interviewed Elton!!), because of my success at raising AE awareness while rebuilding my life.

But (heavy emphasis here), it’s only because of the absolute good fortune I had in my quick diagnosis, world-class healthcare, successful treatment, and support that I recovered the way I did to be able to create JM Stebbins. It took a lot of good luck to sit at those tables.


In September, Sean and I traveled to San Francisco, to join the Encephalitis Society and the UCSF Encephalitis and Meningitis Clinic for the My Brain and Medicine event. While NYC is my mecca and I felt like I was living the Better Days Ahead, North Carolina and San Francisco brought back the Just Keep Swimming feels.

For the first time in my life (after personally meeting only five other survivors), I was in a room and at an event where every single person there knew and deeply understood encephalitis. I was surrounded by 100 people who were all greatly affected in some way as patients, caregivers, family, or physicians.

Amongst questions, tears, personal stories, a group photo, and camaraderie, I was humbled beyond measure. Mostly when I heard Kyle explain his underlying autoimmune condition that led to encephalitis and graciously say from a wheelchair: “But, I’m still here.”


“Never give up.”

I cannot fix anyone’s medical problems. Can’t guarantee others my success in treatment and recovery. I cannot change a devastated person’s life. There is so much I’m unable to do for other patients, survivors, and their families.


But what I can do is offer my humble opinions, thoughts, experiences, smiles, and warm embraces. I can be there as the hope AE survivors so desperately need. I can give it my all to help others in this most aggrieved community.


Sometimes I wonder what life would be like without Stephanie and Dr. Dunnigan’s quick actions; without the privilege of being a Mayo patient; without me being a lawyer; without the advocacy and support of Sean, my parents, my family, and the legions of backing I had in recovery.


What would Jackie look like now without the benefits she’s enjoyed since 2018? Sure, I’ve demonstrated grit, but what about the blessings I didn’t control.


If I sat in the back of that room in San Francisco, I wonder whether I’d like me or resent me.


Part of why I procrastinated reading Susannah’s Brain on Fire was that I wanted to wait until I wrote my own book and I was living it so I didn’t need more AE, blah blah … but if I’m honest … It’s because I immediately resented her when I woke up and learned of Brain on Fire’s success, but believed my life was destroyed. By holding that book, I knew she returned to a successful version of herself and I deeply feared I wouldn’t. So I was “mad” at her.


Others may feel the same about me and I don’t blame them for it. I cannot take full credit for the way my illness presented, the way I responded to only steroids, and the way I’ve risen back up. It’s a lot of luck and God’s grace. And I’m sure others have rightfully wondered: Why her and not me?


Yet overall, I feel like many in my community have not only embraced me, but look to me in their time of need. And I can find no greater blessing or feeling of humility than that. I can only hope to have continued grace bestowed upon me as I move ahead.

This year, AE took me from coast to coast. I Just Kept Swimming. And so fortunately for me, I’m living my Better Days Ahead.


I’m humbled and eternally grateful.


(But my ego is still healthy enough to comfortably talk trash … hee hee)


Stay as humble and kind as the situation calls for.


Love, jackie


“We're gonna get out of here if we gotta ride a Greyhound bus Boy, we're bound to outrun the bad luck that's tailin' us


“Oh, heads Carolina, tails California

Somewhere greener, somewhere warmer

Up in the mountains, down by the ocean

Where it don't matter, long as we're goin'

Somewhere together, I've got a quarter

Heads Carolina, tails California” ~ Heads Carolina Tails California by Jo Dee Messina


__________


/ / 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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