I live in what would probably be thought of to many as a weird world. It’s a world that’s fairly consumed with encephalitis. It’s because I joined the “Encephalitis Club,” in May, 2018. Believe you me, I didn’t want to involve myself with this Club and prior to my diagnosis, I didn’t even know it existed. I’ve only begun to understand the world of autoimmune encephalitis and I’m hooked.
In my new weird autoimmune encephalitis world, there are two types of people: patients and carers. I am the patient and I frequently write from that perspective. But in the world of encephalitis, carers are just as important, if not more important, than the patient. My carer, is my husband Sean, and he is an exceptional carer. Without Sean, I don’t believe I would be alive, nor would I have had the successful recovery that I am so thankful for.
Because the month of May is the month I was diagnosed, it carries a lot of powerful feelings. So do the months of March, April and June. The process of my onset and diagnosis was long and like many other survivors, I sustained memory loss. The few memories I have are upsetting and terrifying. Things that I don’t know about are equally terrifying. And much of the terror happened in May.
So during this month of May, I have been using a slogan from the Autoimmune Encephalitis Alliance – “Ask me about AE.” I try to get over my fears about the tragedy that struck my life by talking about it. You can ask me almost any question under the sun about AE and included in my answer almost every time, is something about Sean. Without Sean, my story is incomplete.
AE doesn’t just affect the patient, it affects everyone around them and those connected to them. It greatly affects the patient’s partner. Sean watched my onset and helped me in my recovery. Sean kept me safe when I was vulnerable. Sean took care of me like a child, while he also took care of our two young children. He kept everything in our life steady, to make sure that when I woke up, that everything was still normal for me. He was patient with me, kind to me and loved me no matter what. He loved me through all the side effects of steroids, including: mood swings, facial hair, extreme weight gain and my hair falling out. He loved me through my constant fear, tears, anxiety and pain. He jogs with me down memory lane, which is more painful for him to relive than me. He never asks me to stop asking questions and he always answers me. He knows that I want to know every detail about what happened and he always obliges, even though I know he’d prefer to bury the memories and forget them for good.
He was a rock that never moved, even when the winds blew at him with gale force. Everything in our world was going up in smoke, but he reassured me we’d be fine. I’m sure he didn’t believe it was going to be fine, but he led me to believe it. He lay with our children night after night while he watched me deteriorate, and wondered what life would be like for the three of them when I died. He witnessed my violent seizure and feared what I’d be like after. He thought about the job he would take and where we would move to, so I could have full time care. And then he observed me come back, slowly but surely, and walked with me every step of the way. We never sprinted, we just took it easy, and we did it together. He has seen it all. He survived it all. We are survivors together.
Sean’s role as a carer can never fully be explained by me. What I can say, is that he was the best one I could have asked for. When AE patients or their loved ones contact me, especially in recovery, I tell them that one thing matters more than any other in their new and possibly different relationship. That thing is patience. The patient has to be patient with the carer who is adjusting to his new role and is possibly adjusting to having a different partner. The carer needs to be patient with the patient, because it’s incredibly difficult to recover from autoimmune encephalitis. Every patient is different and unfortunately, a recovery handbook doesn’t exist for the patient or the carer. The only road-map is the one they make for themselves. And that road-map is full of twists, turns and bridges under construction.
Thankfully, much of Sean’s carer duties over me changed within a few months and mostly ended after one year. His role as my chief advocate and personal psychiatrist still remains. He has seen me at my worst, but keeps working with me to be at my best. I am forever thankful for his support, his care and his unwavering love.
If you’re a carer and you’re reading this, thank you for what you’re doing. I know that many carers take on a lifelong role and that it’s a daunting task. Please keep it up, please keep the faith and please stay patient. From all of us in the Club, thank you carers for what you do. We would be lost without you.
Thanks for asking me about AE.
All my best to you,
jackie
“I was so lost, didn't know what to do with myself I was my own worst enemy, I was lost and oh I needed help Then you came along, and saw what state I was in You picked me up, when I was down Showed me how to live again.
I say thank you, for pulling me through I'm a lucky man I didn't know what life was But now I understand.
This is precious love, its precious love No I can't let it go This is precious love, and its teaching me Everything I need to know This is precious love, oh its precious love No I can't get enough Oh I'm down on my knees begging you please To gimme more of that stuff.
Love, love, love, love, love, precious love Oh its love, love, love, love, love, precious love.” ~ Precious Love by James Morrison