I want my book to first and foremost help people who are diagnosed with AE.
I also want my book to have broad appeal and hopefully be about an interesting person with an interesting story (or a weird person with a super weird story – you pick).
For AE patients and their carers, recovery is a big black hole, so I want to be the person who can say, “Hey, I can offer you a little bit of advice.” For over a year, I prayed for someone to tell me how to recover, but that person didn’t exist for me.
In the book’s final chapters, I outline what I think recovery entails. And in that, I talk about taking my memories back. I started doing it intuitively without really knowing why or what I was doing (this is common for me, but thankfully, it usually produces good results, although sometimes it produces fashion faux paus and bad haircuts) until my Cousin Alison, a social worker and one of the best humans on earth, told me what I was doing: taking my memories back. It’s actually a thing.
I can’t take them all back, so some of the nasties are here to stay. This morning, Ed Sheehan’s “Perfect” song came on my Spotify and it immediately gave me chest pain. I once had to leave the grocery store when I could hear it playing. (Music is an integral part of my story – but I won’t spoil it here – just work with me, some songs are burnt into my brain and trigger me.) I guess I can’t get around that one.
Last week, I got into our kid van and I was immediately transported to May 14, 2018. I literally felt Ashley and Sean taking me to the psychiatric ward. I can’t really remember, but I can feel. And smell brings on the feelings more than anything. We have a big bottle of Covid sanitizer in there and that can either give me a good memory of St. A’s or a bad one of Sanford. Depends on things I can’t control. Like the Netflix opening sound I also heard this morning, that too is a mixed bag for me. Minds are funny things.
My car challenges me. Its smell is so engrained in my head and mind that absent selling it, nothing will cure the feelings. It’s a cool car and it’s proof of how hard I worked to chase my trial lawyer dreams. It’s also something that I’d prefer to see dropped off a cliff. That car symbolizes so much – good and bad – that I’ve literally had therapy sessions on it. I open the door and the smell catapults me back to the two spring days I can point to my AE taking over, when I kept hearing “Perfect,” when my insomnia took over, and my immune system began stealing my mind. If only the car was as easy to deal with as my alarm clock …
I have gotten around a few memories and managed to even make some fun. I visited the fire station to meet 3 out of the 4 guys who showed up in my bedroom when I was having a seizure. I have a powerful drive I take once a year. I went back to the hospital to give one of my favorites, Dr. Vadehra, a hug. I have smashed things - I have relived things – cried about things – forgotten things – written about things – and everything in between.
But a few weeks ago, I did something really big for me. I went home with my mom and dad.
To be continued …