/ Author's Note: I wrote this stream of conscious blog on my phone by the river on May 26, 2023. I spent my first anniversary on May 26, 2019, overlooking this same river, just from a more northern location. I've posted the blog here, completely raw and unedited.
Just now as I load the text and the pics I took, I see the shooting rainbow in the background above. God is good.
It's the first of its kind. Hope it hits you in some way. /
I'm sitting here on a picnic bench overlooking the Mighty Missouri. It’s a beautiful sunny 75, but it’s also ND, so it’s windy.
I'm in contemplation, because it's May 26. D-Day always comes to mind. I’ve heard it said as my "I lived" day. But I’ve never used it. I'm not even sure what the actual metrics are for AE remission, but in my mind where truly nothing is Unwillable (at least not forever) it was one year.
Stay alive for one year. Do not die. No more seizures. If you can make it to May 26, 2019, you can do it. You can put AE behind you.
I did it. The year was daunting, if not impossible. It took every ounce of spirit AE didn’t suck from me. I knew I didn’t have much to work with.
But I had to believe. I had to constantly believe that I would only be stuck if I allowed it. If it weren’t for better days ahead, then I could never be at peace and would never forgive God. There had to be meaning in what happened to me and it was up to me to find it. To dig for it.
My best friend called me as I was driving to my walking location to find a little peace on this most powerful day. 5 years seemed to shock her. She said it feels more like 3.
The time since AE escapes me. Has it been forever or still so close? The days where I got up and went to work every single day as a lawyer, seem like a lifetime away. I believe I’ve forgotten much of what I knew. But I still tell myself it’s like riding a bike. I still know it. But I’ve chosen to unknow it.
She told me that I should never regret my loss of practice, that I’m right where I want to be. Why would I choose to be miserable? Like I seemingly did all those years. Except for all that time that I genuinely loved what I did and was proud of being a trial lawyer.
She told me that when I said on May 8, only two days after my dad died, I also had to face that I’ve now been gone from that lawyer life I knew more than the half the years I practiced.
Tough pill to swallow.
But why? If I’m right where I need to be. Right here. Right now. My husband working, my kids safe and happy, ready for summer. Unwillable’s success. My successful suRvive, Recover, Rebuild. A worldwide following for an unknown woman in Bismarck with an even more unknown brain illness.
There’s something about this 5 year mark. Something I can’t quite nail down. It’s like enough time has passed that I’ve let a lot of the terror out, but maybe the fear is that then the memories can’t get back in. The bad, and the rose colored ones of the worst summer of my life, that my brain believes was one of my best.
Maybe it’s that no matter how far away I get, I’ve accepted that 2018 stands in the shadows. Until death do us part.
Maybe I’m afraid that no matter how good it gets, I can’t forget how bad it can get. How terrifying it was.
Or maybe it’s because I’ve unearthed myself so much, that on this day I drove my car to the park, walked along, sat alone
Currently standing on a picnic table because a very ugly gray snake slithered under me and God alive I hate snakes.
So back to it … everything that I am led me here today to think. To take it all in. To be proud of the hell I went through. To be amazed at where I led myself when I rose from the ashes. To never stop thanking the village who loved me and supported me and kept me alive. To never stop thanking God for my miracle baby and resilient kids. The two kids who watched their mom lose her mind, but wear shirts with her Brain on their back, because they know there was a time that Mom was sick. Very sick.
There’s just something about today. And 5 years. And the call to write was alive in me. It feels more real and raw to be in nature. To feel the May sun and wind the way I know it shown and blown that day after the ambulance parked in the ER garage. After the fireman carried me out on the board.
I’ll never truly feel those moments again. Nor would I want to. But maybe, just maybe, I feel them a bit more on this day. Five years later.
Just as the song comes on: Send me on my way.
Off the table. Get back on the path.
The sun keeps fending off the wind.
Cheers to five years! And love to everyone reading this.
jackie
"Well pick me up with golden hand I may see you, I may tell you to run (on my way, on my way) You know what they say about the young
"Well, I would like to hold my little hand And we will run, we will, we will crawl, we will I would like to hold my little hand And we will run, we will, we will crawl
"Send me on my way (on my way)" ~ Send Me On My Way by Rusted Root
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/ / The JM Stebbins blog is an autoimmune encephalitis blog from former lawyer and autoimmune encephalitis survivor, Jackie M. Stebbins.
Jackie M. Stebbins is also the author of Unwillable: A Journey to Reclaim my Brain, a book about autoimmune encephalitis, resilience, hope, and survival. / /