(Dis)(En)Tangled

Separation before advocacy.

(Reposted from Jackie's Willable Substack.)

“Somehow, I intuitively knew I had to wait at least one year to venture upon Unwillable to not reign down shame and publicize gaping sores.”

Over the past few months, I’ve had voluminous discussions with autoimmune encephalitis (AE) survivors everywhere. People have made contact through my website, TikTok DMs, and someone from halfway across the world found me on Substack.

The messages and Zoom chats are usually quite similar: devastation with faint glimmers of hope. Each sender is almost reaching for my lapels to shake answers out of me, just as Sean and I wanted to do when we were in the early days.

There’s a certain beauty and humility in people parroting my mantras back to me in their notes. They tell me they will Just Keep Swimming! That they’re trying to find the promise of Better Days Ahead! That they aren’t sure where they’re at in my 3Rs of SuRvive, Recover, and Rebuild, but they’re working through them! Yet the messages are painful. For them. And for me.

Husbands and fathers want to know how to best support their AE-inflicted wives and children. Diagnosed moms want to know how long their insomnia will last and subtly beg for reassurance that they aren’t terrible mothers. And when I eventually get to the part of either directly answering their question or clearing up their misunderstanding, I almost weep, too: “No, I could not return to my career as a trial lawyer.” The pain of my loss feels almost second to their newfound shock and terribly personal fright: It happened to Jackie. Is that going to happen to me? It’s hurtful to see their faces as they absorb the news.

Their raw pain and uncertainty are palpable. And I’m left to do my level best to be hopeful, but truthful. Thank God for my days of delivering trying and terrible news to clients in practice, or I’d never believe I was helpful in this crusade.

Lately, there’s been another twist in the conversations, and it essentially boils down to: “What do I do with this diagnosis? How can I help others?” These questions aren’t unusual. AE’s depravity is such a sock knocker’offer, it leaves a person reeling. After being harmed so greatly, we feel a strong pull to make any sense we can of what the hell just happened to us. But as we feel around in the darkness, we quickly realize that we cannot comprehend what the hell just happened to us. So we immediately shift our focus to supporting others through this most dreadful experience.

I’m not complaining about this goodwill. I assume it’s our innate human nature and a testament to people’s inherent goodness to want to guide others through the worst of the worst. I vividly remember doing and feeling the same. As it was I who began talking about writing a book when I was far too ill to read more than a few pages, nor had I ever before even heard of AE … because I wanted to help others.

But my learning curve was slow and tedious, with a dreadfully-long arc. I had to work through a few lingering and traumatic years to personally get to much higher ground before I could attempt to venture back down to lend a hand. And I’m now fervently trying to share this hard-won (and sometimes painful) lesson with other survivors.

It’s not cliché, it’s the truth: Each passenger must first don her oxygen mask before she can turn to her struggling seatmate. My personal experience validates this, and a few books I recently read also illustrate the point.

“My conclusion about the memoir published hardly a year after her husband’s brutal death was that she broke Glennon Doyle’s rule of writing with scars, not open wounds.”

I read Stephanie Madoff Mack’s The End of Normal and am obsessed with it. You’ll note Stephanie’s unflattering last name. Bernie Madoff was her father-in-law, and her husband Mark, died by suicide after battling his father’s exposed lies, harm, and the relentless lynch-mobs chasing the entire extended family. Fellow booktokers called it the most “unhinged” memoir they’d ever read. I didn’t quite get that from the book. My conclusion about the memoir published hardly a year after her husband’s brutal death was that she broke Glennon Doyle’s rule of writing with scars, not open wounds. Justifiably so, she set out to tell her unfiltered and honest side of the story. Given what happened, I can’t fault her for it, but I wonder what more could have been said (or withheld) had she written the book years later.

Writing is healing. The act of stringing words together is cathartic. It’s why one of my first pieces of advice to other survivors is to journal, journal, journal! Not only do I believe it’s a best practice for life, it’s critical in your early days of sense making. It’s your journal. Dirty, rotten, ugly, unflattering facts and details be damned. It’s your paper and your craft. Write. It. All. No. Edits! Say fucking hell as often as necessary! Let your warts roam and grow, but pray that with time, they’ll hopefully disappear, or at the very least, become nearly imperceptible.

Somehow, I intuitively knew I had to wait at least one year to venture upon Unwillable (what was originally awkwardly entitled “The Lawyer Who Wasn’t Depressed”) to not reign down shame and publicize gaping sores. That and because my tired brain didn’t allow for its deep utilization for years. It’s also the reason why there’s many iterations of my memoir and some not only suck, but were verbose, ragged, cringey, and raw.

Learning how to write a book, shaping its story arc, and practicing what not to say, was an entire therapeutic and academic experience in and of itself. I had to trust the process and believe it couldn’t be rushed. Unwillable was molded into its final form because I kneaded out the hurt and bitterness along the way. That process was where the magic happened.

Dick Van Dyke has a lovely new memoir with his one hundred rules for living to 100. In it, he shares the story of coming to terms with his alcoholism in a time where it was deeply stigmatized. He showed great courage in admitting to his addiction leading up to a role where he played a hopeless alcoholic. When he was finally ready to do so and began telling the story in all its layers and versions, he realized that the sharing was helping him release the power alcohol held over him. And he correctly noted that it was how he separated himself from the disease.

Bingo.

Beginning about 10 minutes ago, I’m more confidently detached from AE and the chokehold it had on me. It’s also no exaggeration to say I wrote Unwillable still entirely in denial that I HAD SERIOUS AND LIFELONG ANXIETY!!! And that post-AE, I was depressed, anxious, and fending off panic attacks on top of newfound crippling (and probably lifelong) exhaustion. I was still battling some demons, but I believe that what saved me was my devout quest to be hopeful and uplifting. (Maybe to my own detriment, but we can explore that in Unwillable, Part Deux.)

I can now mostly see the forest through the trees, but I don’t deny that some of that came from unattractively plodding through my story via writing, speaking, and interviews in those early days. I concede that everyone has to start somewhere, but I also caution that you must at least be somewhat comfortable in the snugness of your mask straps before you begin to venture from your seat.

If anything, these messages from other AE warriors have served as yet another powerful reminder of not only how far I’ve come, but just how freaking hard it’s been! I say that not to applaud my efforts, although I’m proud of them, but to be painstaking and sincere in my advice to others: The promise of Better Days Ahead should always be with you, but your recovery is going to take time! Patience. Rest. And reduced life expectations for a while. It’s going to be a few steps forward and a lot back for a while. But stay with it. Just Keep Swimming. Only then can you turn your heartache into meaning for the benefit of yourself and others. And you will.

“Just Keep Swimming. Only then can you turn your heartache into meaning for the benefit of yourself and others. And you will.”

Recovering from AE was the hardest thing I’ll ever have to do, because I had to learn how to redo life with a broken brain and shattered heart. But all of those combined baby steps eventually carried me up the mountain. And it’s only in my (slow, my joints hurt!!) descent, that I can help others the way I do now.

Writing, organizing, and sharing your story to advocate for others is noble and Willable, but it takes patience and cannot be rushed. Pass it on.

Luv, jackie

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/ / 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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