My Neurologist Left Me.
And Now I'm Singing Country Music.
(Reposted from Jackie's Willable Substack.)
For the first 34-years of my life, I enjoyed the great privilege of never having to give much (any?) thought to the field of Neurology. Just like any other scientifically-dull lawyer, I knew that the subject loosely translated to “brain,” so I at least had some working knowledge … But generously speaking, it was slim to none.
Overall, outside of when I once sat in on the deposition of a local Neurologist in circa 2011, I was blissfully unaware of brain doctors.
Until May 23, 2018.
That day is clearly etched inside the motley history of what it means to be me. It was the day I officially met Dr. Ralph T. Dunnigan in the Bismarck clinic. If “met” can be defined as sitting on a chair and table in the examination room to come under a doctor’s care while not really in your conscious mind—then yes, I definitely met him on that Wednesday in the worst month of the worst(est) time of my life.
In my speeches, I always set up my encounter with Dr. Dunnigan by saying, “I’m lucky he had his morning coffee that day so he was ready for what was about to hit him. And I’ll love him till the day I die, because he saved my life.”
“He’s somewhere right now with his ears perked up and he’s unhappy that I’m talking about him! He knows that I’m out and about sharing my story and proudly proclaiming what a beloved genius he is, and he’s so humble, it’s killing him!” I pretend to feel a little awful about betraying his serious quest for modesty and anonymity—but I don’t at all.
I will proudly proclaim the word of Dr. Dunnigan for as long as I can speak. (Cue the narrator in a Dateline voice: And we all know that will endure for a long while.)
For any who are unfamiliar with my story and Unwillable, May 23 is the day my husband, Sean, literally carrying our three-year-old son, while our five-year-old daughter was at preschool, brought me and my mom to my first appointment with Dr. Dunnigan. The day before, my bona fide Angel, Stephanie Macdonald, NP, immediately began my life-saving process in a post-psychiatric hospitalization appointment by recognizing that I was in the throes of neurological hell. Steph lobbied to get me to a Neurologist, but her hospital was booked until that fall. Steph could see I wouldn’t live that long and personally called Dr. Dunnigan.
There are a million things I’ve wanted to pester Dr. Dunnigan with over the past eight years, but knowing how much I’d drive him crazy(er) amidst my insane quest to know every detail about the months that are lost to me, I’ve abstained. I’d love to know just how and why he cleared his schedule for me. And I want to endlessly thank him, but … I think he knows and I’ve tried to leave him some peace.
On that fateful day, Dr. Dunnigan first conducted an interview with mostly Sean, while I sat like a clueless, ghostly figure. He then examined me (I thought a paperclip was a butterfly; had no idea which one of my toes he was wiggling; hardly knew right from left; was startled by him to the point he apologized after he simply asked me to close my eyes; and wasn’t allowed to stand for a portion of the exam, because he could tell I’d fall over). And finally, I failed the cognitive assessment his nurse, Kelsie, administered. [This is the exam Donald Trump brags about passing. And we’re all very proud of him for reciting man, woman, person, TV, camera …!] I violently sobbed while in the room with Kelsie and (I believe another nurse), because I couldn’t understand what they were asking me to do. And clearly, I couldn’t handle much.
It’s here that I have the lovely memory of Dr. Dunnigan handing Sean, our sleeping son in his arms, and Mom, a piece of paper while saying, “Well, her clock is interesting.”
And I merely sat there. Just like I did when he emphatically asked the rhetorical question, “You don’t leave her alone, do you?!” Also, when he made it very clear that I was not to drive.
Past all comprehension and in a testament to how wild my brain is under the influence of inflammation, it was also in that room that my elephant memory told me: I’ve seen this man before.
I had. And I know that’s an authentic memory, because when I “woke up,” I told Mom, Sean, and my law partner that I was in his deposition years ago in Jane Doe’s case. Months later, I pulled Jane’s case and the transcript, and sure enough, as co-counsel, I’d sat in on his expert, trial deposition. (He was not on trial. In what is a matter of public record, he was an expert/treating physician witness for our client.)
I didn’t have any conversation with Dr. Dunnigan during the deposition, but I heartily deduced he wasn’t in any lawyer fan clubs. It didn’t really faze me though, as the majority of white coats (underappreciate?) (hate!) (disdain!!) (can’t stand?!) crocs.
I had to get to know him better to understand his true affinity for lawyers! (One of the last things he said to me today, at our final appointment, was that we really need to work on my sarcasm. Maybe tomorrow, Doc!)
As I was lost inside myself during that first appointment, Dr. Dunnigan spent nearly two hours with us. And because he’s the most brilliant and wonderful person ever, he correctly gave me a working diagnosis of autoimmune encephalitis (“AE”) then and there. And he began the complicated workup for what is not an exact procedure, but a comprehensive, multi-step, and exclusionary process.
This is nearly unheard of in AE-land!
It was from him that my family (and me later through osmosis) learned of the NYT #1 bestselling book, Brain on Fire. And of a condition where my immune system was attacking my brain that otherwise knew damn well how to draw a clock, walk unaided, and do light math.
And in him, we believed I had the most formidable doctor and advocate by my side to walk me through the flames of my newly afflicted hell. He was up to the task. He was the man for the moment.
The story progresses over the next few days to my disastrous, shaky, and likely terrifying-for-me experience in the MRI machine; the piercingly painful spinal tap; the grand mal seizure that tore through me to fracture and dislocate my shoulder, break my back in three places, and presumably, rouse a few blood clots in my leg and lung; to the hospitalization over Memorial Day weekend; to Dr. Dunnigan’s return and phone call to Sean; to seeing him on June 4 where he made the critical decision to prescribe I.V. steroids.
To June 5 where my family saw Dr. Dunnigan’s order awake my brain. To June 6 where I felt my return and promptly sobbed out, “It’s all gone! My life is over! I can’t recover from this!!”
From those early days in 2018 where he made life-saving decisions for me, to the lingering days of 2018-19 where I turned into an isolated-steroid-mutant, he was with me every damn ugly step of the way. He adjusted my seizure medicine, highly-dosed my inflammation fighting and immune-suppressing steroids, examined me, and ordered labs. No hyperbole, he took up arms in the battle for my survival for one year.
But also, as the story goes, I wasn’t healed, nor was there a final bell to ring after that long and terrorizing year. It took many more for me to find some light at the end of the tunnel. Yet, Dr. Dunnigan was right there beside me. For all of it.
For eight years and one month (But who’s counting?! Me …), he graciously held my hand as I was hurtled off the Yellow Brick Road and tried to find myself and some semblance of good health.
He saw me through a (surprise!!!) pregnancy in 2019-20. I can still hear his comforting words after I called his nurse sobbing, upon finding out (which would prove to be a pattern for me; I’d get some insane medical news and knee-jerk call his nurse’s line bawling … Thank you Kelsie and Marcie!). He stayed with me through masks and distances in 2020-22. He hung with me when a rare and dangerous infection was found floating in my body (news–tears–nurse’s line …) and personally wrote my Mayo Neurologist for an expedited trip to Rochester.
In June 2023, I sat next to him while he typed his notes and offered to pass the hat to buy me new jeans that didn’t have holes in them, and managed to stoically muster, “My dad just died.” We paused the clinic visit for a moment and I’ll never forget his kindness.
For eight years, he was my fierce ally when copious medical calamities struck my every system, when truly, the poor man’s only role was to chill out my brain.
I could go on and on and on. (Cue the narrator: Yes, she really can.). Suffice it to say, Dr. Dunnigan means the world to me.
But we really are a funny pair.
I don’t know of the correct compare and contrast for us. Oil and water just doesn’t cut it.
He is a genius. You know it the second you encounter him. Sometimes it honestly baffles me how much he must know about science, engineering, and brains. And I can’t imagine he ever met a math or physics problem he couldn’t solve, much less a woman in her mid-30s who suddenly and mysteriously can’t walk, draw a clock, barely talk, and is having seizures.
And I’m … well … me.
(Don’t know much about historyyyy. Don’t know much biooloogggyy. Don’t know much about science books ….)
My big mouth, sharp linguistic edge, and lack of shame are so divergent from his personality, it’s a wonder we don’t just simultaneously combust when in the same room.
Our combination is best described in what comes easiest to me: a 90s basketball reference. He’s my Yoda Zen Master, Phil Jackson. Slow and deliberate. Quiet and revered. Commands respect by his presence. Arranges and manages the championship team. Whereas I’m a good cross of Jordan’s relentlessness, Rodman’s elbows, and Pippen’s ability to hurt his back.
He doesn’t step on toes, and I aim to break ankles. But it works for us.
Years ago, I bugged him for months to come on television with me. He did a great job of ignoring me and I was fabulous at not taking the hint until we came to a stalemate: He was not joining me on a news segment. And even my tenacity and protestations couldn’t force him to introduce (Brain on Fire’s) Susannah Cahalan and I when I interviewed her for our Humanities event (Me: “But Susannah and her neurologist have a picture together in the back of her book!!” Him: Chuckles.)
I bested him just once, when on World Encephalitis Day, 2020, he and his lovely wife attended the inaugural Bismarck Brain Walk. I felt on top of the world with my family, friends, and our then-Congressman-now-Governor there. But it meant everything to me to have Dr. Dunnigan walking.
We may be an odd duet, but after all our time together, I got to know him! and he learned to tolerate me? He even told me I’m his “favorite lawyer.” (That’s like saying you have a “favorite” rattlesnake.) Better yet, our teamwork conquered my own world championship: Eight years of AE-remission and seizure free! Based upon the perilous shape I was in the day Sean literally walked me into his clinic, that feat is nothing short of a miracle.
In my early days of AE, I worked hard to locate and build my community. It was challenging to find others in my similar, ragged boat, and difficult to cope. But I’ve never yearned for a world-class medical team. Spend more than five minutes in any sort of AE social group online or in person, and you’ll hear a common refrain: My doctors are awful and they screwed up and no one gets me and I was misdiagnosed and I can’t find a good Neurologist who listens… By the grace of God, I’ve never, ever, uttered that complaint.
Neither exaggeration nor bragging—I’ve had the greatest Neurologist in Dr. Dunnigan. (Cue the narrator: She is known to exaggerate and isn’t terribly afraid to brag.)
Don’t believe me? Ask around. In every speech I’ve given in North Dakota, at least one person from the crowd has grabbed me afterwards to share a story about Dr. Dunnigan and how he saved them or someone in their family. At a speech last fall, a quiet gentleman in the crowd told me he’d seen Dr. Dunnigan himself and that he’s a “doctor’s doctor.” I recall a woman who smittenly told me all about how he cares for her aging mother with Parkinson’s and another woman who told me he discovered and stopped a genetic deformity/mutation in her family. It has honestly happened to me so many times, I cannot possibly recall each story. But what I do know for certain is that if you mention him anywhere in this state, his name is met with reverence and respect from both doctors and laypeople alike.
Yesterday, a June Tuesday, was my last appointment with Dr. Dunnigan. He’s retiring in a few days. Since last year, I knew this was coming eventually. And not too long ago, I told Sean, “I have a feeling I’ll only see Dr. Dunnigan through the end of this year.”
While I’d been somewhat preparing myself for the news, nothing could prepare me for how I feel now.
As I started to consider the possibility of his retirement, I kept coming back to the idea of: Without Dr. Dunnigan in my life and as my Neurologist, it will feel like this never really happened. But that wasn’t it.
At the end of our last appointment, after I legitimately forced him to take a photo with me and we had some good smiles and laughs, I got into my car, and the big emotions took hold. I texted Sean and Mom and said, “I feel like crying.” Then (pre-tears), I shared on my Stories that I’d just lost my Neurologist and that while I knew I’d be OK, it was definitely going to be a rough day.
I grew up in a small town, so I can sing the lyrics to every 90s country song with the best of them, yet I don’t often break from my Elton-Phil-pop to listen to it much. But I’ve really gotten into Kasey Musgraves’s music. She has a unique and lovely voice, coupled with her adorable looks and witty lyrics. I often quote her song “Rainbow,” in speeches. When I settled into my car, I turned to “Rainbow,” but that didn’t help. I skipped ahead and up popped “Neon Moon,” her cover of an old Brooks & Dunn song. I played it and it landed.
Now, I’m FULLY aware that the song is about the loss of a lover. Country music has lots of dead dogs, honkytonks, pickup trucks, and tight-fittin blue jeans, but it’s sorely lacking in the “I’ve lost my Autoimmune Neurologist,” department. Thus … saddened AE patient-ers can’t be choosers.
The steady, soft beat, the repetition, and the lyrics helped me feel all the feels as I drove home. And I kept my composure. Until I saw Sean. Then I broke.
When something hits me this hard, I know what I need to do. So I hopped on my bike and let it out. And through the heat, miles, and my watering eyes, I repeated the song.
“When the sun goes down / That lonesome feeling / And the whole world turns blue /
“Where I sit alone / And I think of losing you /
“If you lose your one and only / There’s always room here for the lonely /
“To watch your broken dreams /
“No telling how many tears I’ve sat here and cried /
“Telling my poor heart /
“And the words to every sad song / Seem to say what I think / And this pain inside of me / It ain’t never gonna end /
“Oh, but I’ll be alright /
“As long as there’s light”
Music has a way of taking me outside of myself. And what I realized through the “Neon Moon” replay is that I’m overwhelmed by grief and loss. Unfortunately, it’s the norm in my post-AE life. I tried to trick myself into believing that without Dr. Dunnigan it would feel like the explosion hadn’t happened. But AE did happen, and it happened to me. Nothing ever can or will change that. And while time has been my great healer, the scars remain.
The song helped me see that my pain lies in the realization that I have to continue to walk this road without Dr. Dunnigan by my side, and I don’t want to. It’s scary. And it’s going to leave me bummed for some time.
Later, when I was on my socials, five or so other AE survivors and an AE mother had replied to me and offered their condolences (we’re a small but mighty group, so that was a substantial return of anguish). Each one of them commiserated and shared that they also cried when they lost their neurologist. When you’ve swum through a rare and hard to diagnose, treat, and recover from brain illness, you get it. Our neurologist is our person. The loss of them in our life is a tough pill to swallow.
Oh, but I’ll be alright. As long as there’s light.
I wish I could keep him forever, but his absence is also a stark reminder that while AE has taken and taken, it has also given. AE and all its BS gave me Dr. Dunnigan, which is possibly the greatest gift of my near-death experience and something I can always appreciate. I’m grateful that my fortunate recovery allowed him to see the real me. And I can only hope my alarmingly interrupting presence has also been meaningful in his life. It’s all really wild, because our connection is something I never could have imagined.
Dr. Dunnigan is a man of deep faith. He often left me with a “God bless” or frightfully made a sign of the cross over me when he exited the room. While every now and then I detected a “she-devil, get back!” vibe, it was mostly another reminder of how much he cared. And I believe with my whole heart those blessings are part of the reason I’m writing this today.
I appreciate the many variations of the oft repeated quote: “One person can’t change the whole world, but they can change the world for one person.” I actually do believe he has changed the world with his work, and he undoubtedly changed my world. Both Neurology and I have him to thank for giving us a better place.
(Although, I must say: I definitely learned about Neuro the hard way! I do not recommend this! Instead, try to find information in a book near you—like a textbook or Brain on Fire or Unwillable …)
Dr. Dunnigan graciously served his patients for over thirty years. And while I realize this is a hagiographical piece, he is mortal and deserves retirement after a storied career. I’m happy for him.
I need to end now, as I’m blistering his already burning ears. Plus, I’m starting to look strange in Starbucks, because this has been an emotional piece to write.
Thus, on behalf of myself and a gazillion others, thanks for your career, Dr. Dunnigan. You’re the best!
Losing your Neurologist is awful—yet, gratitude and perspective through grief and music are Willable. 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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