It’s a typical November morning at the Bismarck home of Jackie Stebbins, her husband, Sean Arithson, and their kids, Kennedy, 7, and Kirby, 5. Dad gets up, gets dressed, eats breakfast and heads off to work. Mom gets the kids ready for the day, feeds them breakfast, gets one off to school, the other to preschool, and settles into the routine of a “housewife.” Could be a scene right out of the 1950s.
But it didn’t always work this way. And Jackie’s “housewife” agenda includes things like writing a book, preparing Power Point presentations and scheduling speaking appearances. Here’s her story:
Two years ago, Jackie Stebbins was a young woman on the rise. Just 33, she and her 30-something partner, Micheal Mulloy, had built a successful law firm, billing a million dollars a year. The business success meant Sean could leave his job and stay home with the kids until they were old enough to go to school. That was important, because Jackie worked long hours as a busy trial lawyer.
Jackie had been active in Young Democrats at the University of North Dakota and after college, as she was building her legal career and starting a family, had served five years as vice-chair of the North Dakota Democratic-NPL Party. She was examining the possibility of a future in politics and government.
Then it all fell apart.
Jackie was struck down with the debilitating and sometimes fatal disease Autoimmune Encephalitis, turning a dream existence into a nightmare.
It started in the fall of 2017 with trouble sleeping. She blamed it on the stress of her career. The insomnia persisted into winter, accompanied by night sweats, causing her to believe it was a hormonal problem. By spring, she was going full nights without sleeping, and she started to question whether she suffered from work-induced depression and anxiety.
Soon, she noticed irritability, a clenched jaw, shaking hands and ringing ears. She was anxious, suffering memory loss, paranoia, hallucinations, full body tremors and chest pains. She became unable to walk and had to quit driving.
In mid-May 2018 she was admitted to the psychiatric ward at the Sanford Hospital in Bismarck. She said later she was pretty sure she had “shorted out my brain” from anxiety and overworking.
“I thought I was going crazy.”
“The illness presents as a psychiatric problem,” she says. “I believed it was my fault. My brain was messed up. Everybody thought I was working myself to death.”
Treatment with anti-depressants began, and she was sent home from the psych ward after 48 hours. Finally, Sanford nurse practitioner Stephanie MacDonald said, “This is not behavioral, it’s neurological.” Mid-Dakota Clinic Neurologist Dr. Ralph Dunnigan agreed and began testing her for what he believed was Autoimmune Encephalitis. But just a few days later, in the middle of the night May 26, she experienced a grand mal seizure so violent it broke and dislocated her shoulder and, she discovered a few days later after CT scans, fractured three of her vertebrae.
She was hospitalized for five days at St. A’s and upon her release, they immediately began treatment with steroids and contacted Mayo Clinic, where doctors confirmed the diagnosis.
“Dr. Dunnigan and Stephanie MacDonald saved my life,” Jackie says.
Many of Jackie’s friends, colleagues and family had become concerned about Jackie’s condition over the winter and spring. To keep them informed, Sean started a Caring Bridge page for Jackie, posting May 27, 2018:
“Jackie has been experiencing a wide range of symptoms that has bounced her from behavioral health, to specialist after specialist, until it took one neurologist, Dr. Dunnigan at Mid-Dakota, to pin down that she may have Autoimmune Encephalitis. For the past month, Jackie has experienced:
- Cognitive impairment.
- Memory difficulties.
- Involuntary movements.
- Slowed or loss of ability to speak.
- Behavioral changes such as agitation.
- Visual hallucinations.
- Paranoid thoughts.
- Severe anxiety.
- Sleep disruption including severe insomnia.
- Weakness or numbness of part of the body.
- Loss of balance.
- Vision changes.
- “Jackie will be going to Mayo Clinic on June 19.”
Autoimmune Encephalitis is a disease in which an overactive immune system mistakenly attacks healthy brain cells, leading to inflammation of the brain and eventually all the symptoms Sean listed Jackie as having in his Caring Bridge post.
It’s generally treated with something called immunosuppressive therapy, which lowers the body’s immune system, and the danger in that is susceptibility to other diseases, including cancer. In some cases, the disease can be fatal. Indeed, Jackie survived a breast cancer scare while in treatment.
For Jackie, treatment consisted of massive doses of steroids. It worked. It took more than a year, completely upended her life — she was unable to work — for a long period of time not even able to leave her house except to see a doctor — and she was forced to sell her share in her law practice. She thinks her legal career may be over, although she is retaining her law license.
The steroid treatments caused tremendous weight gain, but she didn’t back away from her friends and family because of it. Occasional updates and photos on Facebook documented her travel through treatment, and while she’s now off drugs and is regaining her youthful figure, she knows this is a disease than can strike back at any time.
A woman of strong faith, Jackie was guided spiritually through her treatment by frequent visits from two priests who were longtime family friends, one of whom had married Sean and Jackie. And she put some serious miles on her rosary.
“But at least I’m not going crazy.”
Jackie’s reached a major milestone: She can drive again, after many months of relying on Sean. She drove to meet me at a local coffee shop this fall so I could talk to her for this story, after dropping Kirby off at preschool.
She’s hauling the kids around now because Sean has gone back to work as a communications coordinator for a local environmental group. Although Sean’s working and she has the benefit of a long-term disability insurance policy, the loss of her law firm income has been “financially devastating.” But she’s taking steps to deal with that.
“It’s always kind of been my dream to be a motivational speaker,” she told me in October. “But first I needed a career. I didn’t plan on retiring from the practice of law at age 35, but here I am. So I’m going to do it.”
She’s already on the road, delivering hourlong Power Point presentations about her experience, how it changed her and raising awareness of AE. On her Facebook page, “JM Stebbins,” she says she “wishes to share inspiration, hope and resilience through her work as a motivational speaker and writer. The story of her Autoimmune Encephalitis diagnosis and recovery is powerful for all walks of life. Jackie also enjoys speaking on various topics related to the leadership and business skills she acquired in her work as a lawyer and senior partner at her law firm and about all things related to motherhood and work-life balance.”
She’s taking appointments at (701) 471-2136, and is working on a website, jmstebbins.com.
If you spend any time with Jackie right now, you’ll be amazed at how strong she is, how very much like the “Old Jackie” she has become again. Still, there’s an understandably cautious tone in her voice that was not there in the Jackie I knew before she went through this.
“This scared the shit out of me for a year,” she told me over coffee. “I have two kids, and one on the way …” Oops, the cat’s out of the bag.
Because there’s one more thing she’s doing right now: Shopping for baby clothes. She and Sean are expecting their third child — totally unplanned, they say — in the spring. And her doctors say pregnancy is the best possible thing that could happen.
“It’s painful to see the law firm without my name on it,” she says. “I’m still trying to figure out my role. But God and the universe have a plan for me. I’m just kind of going with it.”
One more thing: She’s writing a book about her experience, again to raise awareness about AE. The genesis of the book is the journal she and Sean kept on a Caring Bridge page throughout her ordeal. Here are excerpts from her first and last posts on that site. There are a lot more. She’s a good writer. You can go look at them here. Or you can wait for the book to come out. It’s tentatively titled “The Lawyer who Wasn’t Crazy.”
Caring Bridge Aug. 9, 2018
“I can tell you that I miss a normal routine. I miss my friends. I miss trips to see my family. I miss being at work with my colleagues. I miss early swimming with my gal pals at the YMCA. I miss going camping this summer. I miss driving. I miss going out to eat with Sean. I miss being able to pick up my kids. But, I know it will all come together again someday! The best way I can describe where I am today is by the analogy of “I’m a smart phone.” The phone literally crashed and then needed a reboot (steroids and treatment for the encephalitis). It’s now performing a system restore to hopefully restore everything (my continued recovery and treatment now), which will take some time. Once the system restores, I will hopefully come out as the 2.0+ model with all the glitches and viruses worked out. Sorry — maybe a lame analogy — it was either that or me breaking into Celine Dion’s song ‘It’s all coming back to me now …’ and no one wants that.”
Caring Bridge April 8, 2019
“I still have my moments, gang — and I’m sure I will always have them. Even though you all have made me feel brave, strong and tough, I’m not sure if I am. I’m afraid of relapse, I’m afraid of death; I feel afraid of a lot of things. I try not to worry about the future, my kids’ health, my husband’s health, my health, my career, and everything in between — but it’s hard not to. When my insomnia hit I would lay awake and lecture myself to snap out of it (not knowing that it was not my fault and having no idea what was going on). Little did I know what the future would bring. But in the recent words of the famous Ma Stebbins, “You don’t have a magic ball dear, but no one does.” She’s always right. I will try to remain calm, patient (oh stop right now – I can hear you rolling your eyes!) and thankful, and take life one day at a time.
“From my heart to yours: Love your kids; love yourself; love your partner; love your family and friends, and complain if you need to. Don’t wonder whether you have it worse or better than others, that’s not the point. Everyone is going through something — be there for them when they need you – and lean on others when you need them. And grieve when you feel like you’ve lost something; I’m still grieving from this experience and maybe always will be to some extent. I now have a life pre-illness and post-illness.
“For as long as I can remember, I’ve always wanted to be extraordinary and never ordinary; my brain is just wired that way. All through school, college, law school — I wanted to be Jackie the extraordinary. I wanted to be an extraordinary trial lawyer. Everything I’ve done, I wanted to do it in a big way. I still want Kennedy and Kirby to be extraordinary, but now, more than ever, I just want to be ordinary. I want to be the Jackie I remember, the Jackie I recognize and the Jackie others recognize. I want to be a Jackie who isn’t preoccupied and focused on Autoimmune Encephalitis and my health 99 percent of every day. I want life to be normal again.”
Thanksgiving will indeed be a little more “normal” this year than the past two years, and there’ll be thankful people around the Thanksgiving table at the Stebbins-Arithson house.