February 8, 2021 | By Kerry Jones
Introduction from the International Autoimmune Encephalitis Society Blog Staff:
We present the second in our blog series for AE Awareness month! This blog is a heartfelt story from a member/Warrior who, with his family has battled mightily for several years. He has published two blogs prior to this with IAES that speak to his diagnosis and struggle: https://autoimmune-encephalitis.org/light-at-the-end-of-the-tunnel/ and https://autoimmune-encephalitis.org/living-in-the-moment/ .
Although, our paths are never straight and not without curve balls thrown at us at every turn, this story certainly highlights the utter joy we can all feel upon receiving very good news regarding our health! This news and outcome only come about with AWARENESS! Here is to you Mr. Jones…. a Survivor and Thriver!!
I cried with relief and joy over having learned from my Doctor that the testing for the antiLGI1 autoimmune encephalitis antibodies which attacked my brain a little over two years ago were no longer present in my bloodstream or spinal fluid. Sure, I am likely to have residual difficulties with cognitive function and memory, but I at least feel I’m finally on the road to recovery. I cried because I know I’m one of the lucky ones.
I cried in sorrow for those who have been on the AE journey longer than me and are not progressing as well. While I can never fully understand the pain and anguish they are going through, I do have an inkling because of my experiences of the past two years.
I cried in sympathy for those who are just starting out on their journey. I cried for them and their wondering how and why this happened to them, for their confusion and fear about what lies in store.
I cried with love for our families and friends who we drag through this disease with us. For their loving desire to comfort and help us while not knowing what to do or how to do it.
I cried in empathy for our doctors who know that every case is different, and that medicine is not an exact science which can provide an easy solution for every case, yet they work tirelessly to try to help us each as best they can.
Yes, I cried last night, albeit mostly silently.
Yet, as I look out the window this morning on a rainy day, I’m able to marvel at the beauty in the gray sky, the green in the trees and grasses and the sounds of thunder reminding me of the power of nature. On other days, I wonder at the beauty of the cardinals, orioles, goldfinches, blue jays and other birds which bring such bright colors into the world. I try to savor these moments and bask in them, if only for a moment, for I find they bring me great solace.
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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.
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Beautiful Kerry, and a great privilege to be one of those friends who love you.
I am so glad for you, thanks for sharing & giving us a chance. I wasn’t sure it was possible to get there. I am also also Lgi1 AE warrior, having tested positive in January 2018 & again recently. I am in a much better place, still suffering from cognitive & memory issues.