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April 28, 2021 |Tessa McKenzie
Message from the IAES blog staff:
We’re excited to introduce you to Tessa McKenzie, the latest addition to our fabulous group of IAES volunteers! She’s an inspiring AE Warrior and certified Life Coach who is joining us in the role of IAES Chief Resilience Officer.
Look out for the official program announcement for “#TuesdayTries,” a series of Zoom meet-ups and resilience-building activities led by Tessa, coming next month!
I am an Autoimmune Encephalitis (AE) survivor. I’m also a life coach.
Meaning matters and it’s taken me years to ascribe my AE journey any meaning beyond “Why me!?” My story may be just like yours or infinitely different, but one thing I’m sure of is that you’re not nuts.
This is not game over. You will feel okay again, and I look forward to one day reading your resilience story.
My story began in May 2019 when I woke up shaking and didn’t stop for 60 days. Panic, severe insomnia, loss of executive functions, dizziness, and tachycardia followed. One day I walked 20,000 steps around my house due to excess energy; on other days, I could barely move. I was on high alert, forever scanning the room, and the moment I fell asleep my body would jolt awake over, and over again. My arms and legs tingled all over. Food lost its appeal and I went on to lose so much weight the doctor suggested I drink bone broth to fatten up.
Like yours, my story is long but here’s what I most recall: my husband holding my jerking body at night, begging me to recall our honeymoon in effort to remind me of what peace felt like; my two-year-old child crying because I was so unlike the mother he had known just months earlier; taking hours to fold laundry because I couldn’t figure out how to match socks. I remember endless medical professionals telling me nothing was physically wrong with me, yet psychiatrists believing my illness was nothing short of physical.
Time did not exist. I couldn’t recall things that had transpired seconds prior and also lost the ability to plan ahead, even for the most ordinary of activities.
Have you experienced bewildering confusion in a grocery store, too? The kind where you’re unable to comprehend its contents due to competing colors, shapes, and depths? Like me, do you know loss of credibility that comes with being overwhelmingly unwell, all the while appearing too normal to be incapacitated? There are a lot of details I can’t recall but more memories I wish I couldn’t remember from that time.
Thankfully, AE warriors also know how to overcome challenge. Yes, you. You’ve done it your entire life and the things that you’ve experienced with AE are nothing short of superhuman. You are better poised for a comeback story than most.
As for me, I was at first shocked by my brain’s ability to develop skills that I had lacked just days earlier. On November 26, 2019, I regained some inner dialogue of thoughts. Soon after came longer term memories followed by the return of some shorter-term ones. With every victory came the confidence that greater gains were possible.
I started to cook again! It took me multiple tries to make eggs – it took phone calls with friends and a lot of tears, but I made my son eggs again and all seemed forgiven. I kept a post-it by my bed to aid my morning routine, too: underwear, pants, shirt… I recall chanting it but couldn’t remember all three items at once (in fact, I still struggle remembering three of almost anything!).
I felt happy again, too. The moment I noticed beautiful sunlight on golden leaves in the wet road remains striking to me. I called a friend to tell her I had experienced my first moment of God-given happiness again.
It took a year and a half to get my diagnosis of Autoimmune Encephalitis from the Neuro-ophthalmology and Neuro-immunology departments of Johns Hopkins Hospital. We all have some equation of red flags that got us into this group. Mine was an ANA titer of 1:1,280 at the time of onset + symptoms + MRI showing scattered foci in the white matter of my brain + past infection + neuropsychological testing demonstrating diminished IQ: a perfect storm causing my “Brain on Fire” experience.
Nonetheless, I am a walking miracle and I know it. I’ve been called a “rare-mermaid,” one of the lucky ones who has improved so significantly with devastatingly little medical attention. As I have been given the gift of a second chance, it is my aim to turn my life’s mess into my life’s message.
Standing on the shoulders of giants, AE warriors and advocates who have quickly become family, I am grateful to share space with those of you who ‘get it’; to walk beside you in turning our greatest tests into profound testimonials of strength together.
Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who 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 the 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.
For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store! This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.
Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society cannot provide medical advice.
International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.