April 15-2020 | Jackie M. Stebbins
Lawyers have two great fears in life: 1) missing a deadline and 2) getting sick. Missing a deadline is scary and keeps us awake at night, but getting sick is about the worst. A simple cold or the stomach flu can require us to reschedule a deposition which could possibly change the course of the case and other deadlines, and it feels like all the dominos then start to fall. We’re humans, so we’re going to get sick, but we’re also lawyers, so we can plan for everything. Or wait, can we? I am a lawyer and I fell deathly ill while in private practice. It was unexpected, there was no accordingly tailored action plan, and it was worse than I ever could have imagined. In late May 2018, I was diagnosed with autoimmune encephalitis (AE) and it has forever altered the course of my life. My disease is a sneaky assailant. It took my body and it took my mind before I, or anyone around me, could get a serious hold on what was going on.
I suffered from insomnia for quite a while before I decided to take it seriously, but only because I was afraid it would start affecting my work. All signs pointed towards depression and anxiety. Lawyers become depressed from their workload and stress, that’s a fact. Who was I to believe I was any different, especially because of the hours I was working and the nature of the cases I was handling as a family law and criminal defense attorney. I didn’t want to admit to any mental health issues, but the slow and serious deterioration of my health finally made me admit and accept it. I was prescribed antidepressants to sleep and continued to plow through work. I told myself I’d take time off in the summer, I just had to make it through my busy spring. By the end of April, I was still an insomniac, my jaws were clenched, my hands were shaking, and my ears rang. In early May, I left work for a week’s break. Earlier that day, I had what I now know was a serious anxiety attack at my desk, and I knew I couldn’t stay at work any longer. I believed I needed time for my medication to kick in, which would hopefully allow me to sleep. On the surface, I told myself I would return to work very soon, but a deep down dark thought told me I’d never return to my office as I nearly collapsed out the door that day. Only six days after I left work, I checked myself into the psychiatric ward. My decline was obvious. I wasn’t very communicative, I stared a lot, I couldn’t sleep during the day or night, I no longer believed I was fit to drive with my children, and my body stopped working while I tried to swim or bike. I suffered from paranoia and confusion and hallucinated with prescribed sleeping medication. During my 48-hours in the ward, my mind started to slip and things, like knowing the date and reading a clock, became a challenge. I struggled to read and write. I cried and exhibited serious tremors. Something told me I didn’t belong in the ward, but I was desperate for help to sleep and to feel better.
From the time I left work until my time in the ward, my memory isn’t great. Once I left the ward, I nearly ceased to exist as a person and my memory is bare. My life during that time has been pieced together through records and my family’s recollections. For six days after I left the ward, my husband of 10 years took care of me like a child and wondered if I had dementia or was possessed, because of my cognitive impairment and strange behavior. At a follow-up behavioral appointment, my nurse practitioner immediately believed I had a neurological condition and expedited my referral to a local neurologist. Her astute thinking absolutely saved my life. However, the word “neurological” led my husband and family to think the worst. They believed I had a brain tumor. My neurologist’s diagnosis the next day was also life-saving for me. He believed I had AE but ordered more testing to rule out other conditions. Over the course of three days, I failed a neurological examination with flying colors, had an MRI image of my brain that was of poor quality because I shook so badly and could not lie still, and I underwent a spinal tap. I have only a few memories of the testing the first day and I don’t remember much after. My family cried for days and I was oblivious to everything. I repeatedly asked the same questions about what was going on but was fairly easily reassured and was compliant. My mother repeated over and over, “Thank God she doesn’t understand what’s going on.” Just 20 days prior, I had successfully defended an order to show cause hearing, but could not draw the face of a clock during my neurological exam. During the early morning hours, the day after the spinal tap, I had a grand mal seizure in bed that broke and dislocated my right shoulder. I was taken to CHI-St. Alexius Hospital in Bismarck, where I spent the next five days. My memories from the hospital are almost nonexistent and the ones I have are skewed. My health was incredibly fragile and there was serious discussion of having the Mayo Clinic’s airplane fly to Bismarck to retrieve me. While I was sick and rendered incompetent, my husband, family, and a few close lawyer friends took over my life and made all of the decisions for my cases, my role in my own law firm, my health care, and whether my husband had to sell our home and move us closer to our family. I had no idea any of this was going on. They all went into crisis mode to fight for my health and so that no one missed a step at the law firm. The thankfulness I have for my Superman husband, my beloved family, and my friends can never be fully explained. My health started to stabilize, so I stayed in the Bismarck hospital. Upon my release, I began a week of IV steroids to treat the AE. By the second day of treatment, my mind rallied, and my family saw the signs of me again. I underwent a CT scan that same week, which revealed blood clots in my right lung and leg, and three broken vertebrae in my back. It was also during that week that I was able to understand I was never mentally ill, but that all my health problems were the AE at work.
I went to the Mayo Clinic in June and my diagnosis and treatment were all verified, which was good news; it was the devil we were coming to understand. But the recovery process was slow from there. I struggled with people diverting my attention, noise, anxiety, fear, personal interactions, any public outings, could not drive, felt broken physically and mentally, was limited in movement, and was shaky and unsteady. I was mostly confined to my home for a year. I had to repair my mind, body, and spirit, and the Superwoman efforts required of me to survive and recover were overwhelming. With the love and support of my husband and family, and my determination to recover for the sake of my children, I rose to the challenge.
I never returned to my law firm after the onset of the AE, and I elected to retire from private practice based upon my health conditions. Starting in fifth grade, I only wanted to be a lawyer and have sacrificed more than I can explain to get to where I was in my career when the AE hit. Feeling like I lost the career I loved and the law firm I was so proud of, felt like the end of me and everything I knew. Although I have lost in unexplainable ways, I have gained an incredible new perspective on life. I have a lot of hope for the future. I also believe I can use the same drive and skills I honed to be a respected lawyer to accomplish the same goal I had as a lawyer: to help others. How I can best do that, only time will tell. I am currently working on a book to describe my experience with AE and I hope it is out for readers to enjoy in 2020.
As I’ve gone through this journey, I believe I’ve learned a few things along the way and hope to offer a little advice. 1) Take your work-life balance seriously. Upon deep soul searching, I know I was working too hard and not enjoying enough around me. I will live with that guilt and lots of “what-ifs” for life. 2) Make sure you surround yourself with colleagues and friends you admire and trust because your professional life requires it if you are ever unexpectedly debilitated. 3) Purchase long-term disability insurance. It is a great investment and was a life-saver for me. But most importantly, understand and read your policy before disaster strikes.
Become an Advocate by sharing your story. It may result in someone receiving an accurate diagnosis who is suffering right now and is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org
International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families and Caregivers through their Journey with AE to ensure that best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.