My name is Gretchen Cannon, and I am a 38 year old woman living with a rare disease that is thankfully becoming more recognized in the medical community, called Autoimmune Encephalitis. Basically, my body's immune system attacks my brain cells, leading to inflammation of my brain and devastating neurologic and psychiatric symptoms that I wouldn’t wish on anyone.
Before 2006, I was a successful Marketing Manager, avid fitness competitor and runner, and just all around busy babe, loving my life! I had Hashimoto’s Thyroiditis, which is common in people who contract Autoimmune Encephalitis (or “AE”), and I had a common surgery at the very end of 2006, which the trauma from that is believed to be perhaps what triggered my AE. Since then, I have been at the lowest of lows because of this illness and was not always able to see my chronic illness as a gift, but I can tell you that there are SO many lessons to be learned from living with AE, or any condition for that matter. The gifts that this disease have given me include: perseverance, appreciating the small things in life, learning to be present in the moment, love and accept myself unconditionally, trust my instincts, listen to my body, and also focus only on relationships that are positive and supportive.
I want to explain the scary symptoms to you first, so you can understand my journey a little better. My short term memory was greatly affected, and is like this every time I have relapsed. It is like I have small seizures all day long, felt in my brain and body. I shake from the inside out, and have problems with my balance, speech and vision. My family would describe me as looking at them with a blank stare, no life in my eyes, and on the other side of those eyes, inside my brain and body, I felt SO lost, foggy beyond words and extremely terrified. Nothing looked familiar, I couldn’t be alone at all, because I didn’t know where I was, sometimes who I was, or what was going on. I couldn’t speak or relate to what people were saying around me, I couldn’t watch tv or read or remember anything anyone asked me. I lost all independence and had to hold out hope that things would get better, although sometimes they felt like they never would. I knew something was wrong, but it was hard to explain and impossible to stay calm or have hope, because it felt like the same nightmare every single day. My body was in constant fight or flight mode attacking itself for no good reason and I was obsessive and anxious and depressed and scared and so lost! My particular symptoms, when flaring, get progressively worse if not treated. The longer the symptoms prevail, people can end up in a coma or worse, which also happened to me, but I was lucky to wake up from mine when it happened. I will probably have this disease for the rest of my life, and I will continue to be aware of the possibility of the symptoms coming back at any time, which will be devastating, but I have hopes that I will remember that I have been there before, and that I have made it through.
Like I said, I have relapsed and been in remission several times since 2006, seen dozens of doctors, tried hundreds of treatments, and I am still fighting it to this day, 12 years later. I mentioned several things I have learned from living with AE above, but I want to focus on the top 3 things it has taught me along the way - perseverance, being present, and loving myself.
Gift of perseverance - I have had to face doctors that didn’t believe me, I have travelled to different states and cities and hospitals and tried different coping techniques, therapies, chemotherapies, drugs, depressants, anti-convulsants, oxygen chambers, IV vitamins, steroids - you name it, I tried it. Yes, I tried all of the natural things as well and nothing helped. I wanted to give up so bad, but I had seen improvements before, I would read about other people who came out of this, I had support from my loving family, and so I persevered. I got up every morning, even if I was shaking and had to call my Mom into the room to help me get up and face the day. I endured spinal taps, hundreds of blood tests, MRIs, CT Scans, Angiograms, Neuropsychological exams, drug trials, doctors sending me away, and being told that they didn’t know what to do any more. I know that if God didn’t give me this gift to fight on despite all that wasn’t going my way, and if I didn’t have such a patient mother and loving father, I would have given up a long time ago. I would have wanted to end my life. But I didn’t. I knew that life could be good and if I could just get the right doctor to believe me or try the right treatment on me, that things could improve. I have friends who call this my warrior mentality. I cried and I suffered, but getting through these hard trials and learning about perseverance, I know I can handle anything that comes my way, and I hope I can help others do the same if they are feeling hopeless. I had to fight for myself and advocate as best I could despite my disabilities and I will never give up.
Gift of being present - I know that this has been a buzz phrase in the psychological or self help communities over the past few years, but it has been a hard lesson learned for me. When you are deep in the trenches of the worst time of your life, all you want to do is go back to the times before these - when things didn’t hurt so much, when you were healthy, when life was easier and more pleasurable. You daydream about what you could have done differently to prevent this from happening. I spent so many hours in the past, and I had so many therapists and loved ones begging me to be in the moment with them, even if that moment was so hard for me to even make sense of, because that moment was all they had with me. Last Thanksgiving I was very depressed and anxious knowing that my brothers and family were going to be bustling around the kitchen, taking walks, eating meals together, catching up and laughing, and I knew I wouldn’t fit in - I would be scared to be alone, I wouldn’t be able to be a part of their conversations, I couldn’t help with the cooking, take funny pictures with them, or any of the things I normally love to do. I had to remember to “be here now” and realize that if things got worse, I wasted this day on wishing for something else. So I tried my hardest. I may not have done it before this time, and I may not have done it perfect this time, but I tried so hard to know that even though I was scared, in that moment I was safe, I was lucky to have family around me, to be loved, to be fed, to have a home, to breath and to be alive. I counted each blessing one by one, even if I had to repeat them over and over to convince myself to calm down. I sat outside and tried to watch a sunset with them and walk down the street with them. I tried my hardest to get ready to go to a nice dinner and be present instead of wishing for more. Even to this day, as I heal and am doing so much better, I still have to “bring it back to the present” when my mind drifts to the losses or the way things could be or were. I have to realize what I have in this moment is the most important, because it is the only moment I have. If that is hard, I tell myself to breathe in this moment, and if I can make it to the next moment I will just keep doing it over and over until one day things will get better.
Gift of loving myself - I think this has been the hardest gift to accept or take control of and responsibility for. Every time I relapse, I can’t eat much, I’m not smart anymore, I can’t make people laugh like I used to, have a normal conversation, or work or contribute to society and maintain my household and family. relationships. All of these losses felt devastating, but most the most devastating thing is that I wasn’t even loving myself. I hated how my life had turned out, and I wasn’t even nice to myself - as if I could control this horrible disease. Every week in therapy, I would be told that I need to speak to myself like I would my best friend, like my Mom would speak to me, or like I was a child that needed to be nurtured. But it was a struggle. Some days, during the hardest times, when I wanted to give up, I begged God for hope, and sometimes the tiniest miracle would happen - I would have a clear moment, or I would get a lead on a doctor or treatment that would give me some hope. I think this is when I started to love myself and realize that even with perseverance and being present in the moment, if I didn’t take responsibility for the love within myself, that I would never make it this time around and I would definitely never make it if it happened again. I had also been in a 13 year relationship with a man who missed the old me, who did not want to take care of a sick woman, and I loved him unconditionally anyways. I wanted to marry him and he is all I saw in my future. I would try to see him or do things for him no matter how sick I was, and this year, I took a giant leap of faith and stayed with my parents, where his stress was not my stress, and he wasn’t pressured to help me get well. I had to love myself enough to remove myself from a situation that was no longer healthy for me to be in and it was so hard because I felt like I was losing our dreams, memories and our life together, but I am so proud that I did it. My Mom took me to a new church where I met people who valued me, at my current state of confusion and despair, and new and old friends supported me when I didn’t want to see anyone for fear of what they would think. This love made me feel worthy and this finally gave me the courage to end the relationship I had fought so hard for, and instead I chose to fight for and love myself fully. Loving myself also includes listening to my body, trusting my instinct, and accepting my new life as it is. I have come a long way and that makes me proud of myself and love myself even more.
I have a new team of doctors, a less stressful life to manage, am on steroids and plasmapheresis, and am working to slowly wean off of these. I work on my blog at GretchCannon.com and take each day as it comes. My illness came with some serious baggage, but also with life lessons and gifts that nobody can take away from me and I will cherish and never forget. Thank you for the opportunity to share a little of my story. I hope it becomes a gift to you and helps someone who may need a spark of hope.