I’m happy to welcome author and motivational speaker Jackie M. Stebbins. Today, Jackie shares interesting facts about autoimmune encephalitis and her memoir, Unwillable.
In 2018, after a traumatizing onset and near-death experience at age thirty-four, I was diagnosed with a rare brain illness, autoimmune encephalitis (AE). I had never before heard of AE, but I’m not alone; eight out of ten people in the world haven’t heard of encephalitis (spoiler alert, that’s one of my ten facts, please keep reading).
I wrote my memoir, Unwillable, to help raise awareness about my rare brain illness. And I hope to add to the conversation with this list.
Here are ten (hopefully interesting) facts about encephalitis:
What: Encephalitis is inflammation of the brain. It is caused by an infection or through the immune system attacking the brain. (I have AE. My immune system sneakily attacked my brain.)
Who: Anyone can develop encephalitis regardless of age, gender, or ethnicity. (I’ve met women and men older than me with AE, and I’ve met a boy who was diagnosed when he was under five years old).
Outcomes: Encephalitis can have a high death rate and survivors might be left with an acquired brain injury and life-changing consequences. Early diagnosis and treatment can save lives and improve outcomes. In some cases, encephalitis can impact mental health, causing difficulty in dealing with emotions and behaviors, and can lead to thoughts of self-harm and even suicide.
Death: Encephalitis has a high death rate (up to 40% dependent on cause) and a relapse rate of between 12 and 35% (dependent on cause).
Awareness: In many countries, encephalitis is more common than ALS, multiple sclerosis, bacterial meningitis, and cerebral palsy, but eight out of ten people in the world have never heard of encephalitis. (But not you, because you’re reading this blog!)
Symptoms: Autoimmune encephalitis symptoms may include: confusion, altered personality or behavior, psychosis, movement disorders, seizures, hallucinations, memory loss, or sleep disturbances. Infectious encephalitis usually begins with a ‘flu-like illness’ or headache, and more serious symptoms follows, such as loss of consciousness, coma, a high temperature, seizures, inability to speak or control movement, sensory changes, neck stiffness or uncharacteristic behavior.
Diagnosis: To diagnose encephalitis, doctors perform a variety of tests such as a spinal tap, CT or MRI brain scans, an electroencephalogram (EEG), various blood tests, and cognitive assessments.
Prognosis: Encephalitis can be complicated to diagnose and is often misdiagnosed. It can also be hard to treat the cause of encephalitis (infectious or autoimmune) and to treat the symptoms and complications arising from encephalitis.
Recovery: Encephalitis recovery can be a long and slow process, because the brain takes much longer to recover than other parts of the body.
#StebbinsStrong: I wrote Unwillable after Susannah Cahalan’s memoir Brain on Fire was a NYT #1 bestseller. I wanted to add to the knowledge base about my rare brain illness and I wanted to show people that even when life throws the worst at you, you can survive, recover, and rebuild your life in a meaningful way. There is life after autoimmune encephalitis!
“Jackie Stebbins’ UNWILLABLE is an inspiring story of a brilliant woman’s battle with autoimmune encephalitis and the circle of support–from loving family members to dedicated physicians–who helped guide her through a hard-won recovery. Her story is as moving as it is important and is destined to help so many others facing this condition.”
Susannah Cahalan author of NYT #1 Bestseller Brain on Fire
While my complete stay isn’t embedded in my memory, because of what the illness was doing to my brain, my time there will never be forgotten because of its place in my life’s story. That experience definitively marks where I’m right at the edge between a well-educated, successful, driven, independent, and thriving woman and an incapacitated person, powerless and relegated to the care of those around her, on the brink of brain damage or death without the intervention of the correct diagnosis. And a small part of me now believes I then understood that I was teetering on a life-altering and explosive line. But that same small part of me can’t say whether, for the first time in my life, I believed my situation to be unwillable. Perhaps my own will would not be enough.
I will always remember crawling into bed the first night, ragged with emotion, and the racing thoughts my mind was still able to conjure up. The questions pulsed through my silent tears. What the hell happened to me? . . . I cannot possibly belong here. I haven’t led a life that would lead me to this dysfunction. I was doing so well. . . . I’m the senior partner at my law firm. I’ve never before had a problem with mental health. . . . Why am I at rock bottom? How the hell did I end up in a psychiatric ward?
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Author Bio and Links
Jackie M. Stebbins was living her dream as a nationally recognized family law, criminal defense, and civil litigator. But Stebbins’s career as a lawyer abruptly ended in May, 2018, when she was diagnosed with a rare brain illness, autoimmune encephalitis. Stebbins persevered to make a remarkable recovery and turned herself into an author and motivational speaker. Stebbins is the author of the JM Stebbins blog and host of the Brain Fever podcast. Stebbins’s side hustle includes raising three lovely children with her wonderful husband, Sean, in Bismarck, North Dakota, and in her leisure time she can be found reading, trying to be funny, and aqua jogging.
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Jackie M. Stebbins will be awarding a custom #StebbinsStrong t-shirt (US only) to a randomly drawn winner via Rafflecopter during the tour. Find out more here.
Follow Jackie on the rest of her Goddess Fish tour here.
Jackie M. Stebbins is new to me, but I really want to read her book. I love all I have read in this post.
I hadn’t heard of this disease- scary! From that long list of symptoms, I can see where patients, as well as doctors, would misdiagnose the condition. Thanks for sharing this information and good luck to you!
Thanks for hosting!