“It’s a like pacemaker for the brain” and (many) other stories.

I’m considering adding some additional hardware to my previously upgraded brain. Consideration for any additional parts is hard for me, no matter how big or small. This one’s called a vagus nerve stimulator. No brain surgery would be required this time (yaya!), just a simple procedure to implant a small device into my chest and feed the wiring up to my neck to attach its leads to the vagus nerve. The device stimulates the vagus nerve and can potentially halt some seizures in their tracks or at least make them shorter in duration and severity. VNS ImplantIt isn’t a cure for my seizures, but combined with the medications I take, it may improve my situation. As with anything, it comes with risks, and having gone through my fair share of medical procedures and various treatments with varying levels of success, I need to take the time for careful consideration of all potential outcomes. VNS ImplantAside from the fact that I have intractable or “refractory” Epilepsy (Epilepsy that does not respond to medication therapy), I’m considering this option because the damage from a specific type of seizure activity I have is now clearly affecting my cognitive abilities. I’m getting “dumber”. (Jokes are welcome, but only if they are really, really good. I’m still an asshole at heart, and it’s still potentially funny. Sometimes. Bring your A-game, fuckers.)One of my greatest fears is slowly becoming reality. I don’t know how to process this, yet. I don’t know how to glean the positive from this. I don’t know how to turn this one on its head and shape it into something ok. All suggestions, other than feeling sorry for myself, are welcome.

I’ve taken many aspects of this in stride, because I’m fucking awesome, of course. But this one is the hardest. It’s getting harder to write. I’ve always felt that as long as I could still write, could still tell stories, that the best of me remained intact. My ability to write, and do it well, serves as a personal benchmark for holding on to my brain as it functions as Sara. If I can still tell stories, I’m still here.

Perhaps pieces of me are beginning to depart. Perhaps, if I’m being honest with myself, pieces of me are already gone. (Yes, Sara. They are.) At what point do I lose me, Sara, the Sara I identify with, the Sara that has always been? Will there be a point when I don’t even notice these changes at all? It’s kind of a giant mindfuck, to say the least. Tears have been shed, sleep has been lost, and I’m tired of expending my limited energy on it, but there it is.

Physically, changes have been happening to my body for years. I remember the first time that fact really hit me, like roundhouse to the face kind of hit me. I was looking through photos from when Nora was almost one and Grace creeping up on three years old. We were at the pumpkin farm on a sunny day in October. The visit to choose the perfect pumpkins for beautifully imperfect jack o’ lanterns was fun, and the photos are great. I lingered on a photo of me holding Grace in the pumpkin patch. The very first thing I thought as I stared at the photo of myself was, “I remember her.” A profound sadness washed over me. Then all the feels all at once — I felt a boot kick to the pit of my stomach. I felt an odd sort of panic, a need to scramble and catch her, and goddammit hold on tighter this time. I felt angry because I didn’t appreciate her enough when she was here. I felt like someone should mourn her, at least for a minute or two. I decided to take those minutes, and maybe a few more. Then I quietly realized that … I miss her. I wondered if Augie missed her too. Then something bigger hit me. A feeling I can’t yet describe properly. A crushing, cruel feeling sat down on my fucking chest.

The girls will never know her.

They were so young. She was gone before their memories could really take hold of her. More than anything, that was the single most heartbreaking realization I had that day. Maybe ever. I wept. I sat on the floor of my closet so no one would hear me, and I wept. How badly I wanted them to know her. How badly I wanted them to love her. How terribly much I wanted her back.

I catch glimpses of her now and then, and in those moments I try to get her to stay. I tell stories about her. I cling to my memories of her. I secretly wait for her to come back. I play the part of Her for as long as I can, until she’s tucked away in the crushing grip of an angry, crowded, damaged brain, or whisked from my sight in the unforgivable throes of an electrical storm.

She left with stories untold, things undone. Her departure, not all at once, was subtle enough not to stir my concern until she was far enough gone that I couldn’t reach her. I convince myself that if I had noticed the small stuff, I’d have held her more tightly. I’d have chronicled her days with the most perfect words. I’d have written her lines so you could hear her laughter between the syllables. I’d have kept her safe from the storm.

The Sara I am has so much more to do that I can’t waste time lamenting over the Sara I lost. The Sara I am feels like less-than, but I’m trying, every fucking day, to see her as different-than instead. I am trying to be kind to Her. I am trying to be patient with Her. The last time I spoke on stage I did so without Her, and it was miserably apparent. Something that had once been a labor of love lost all the love. I haven’t taken the stage since. Over the last year, molehills have grown into mountains, and I’ve lost my footing time and again. So, I let more old loves go. I set out to conquer the flatlands, instead. I pretended it would be enough. Realizing that it is becoming significantly more challenging to write snapped me back from a comfortable haze of “fuck it, I’ll take the road already taken” complacency. It’s not enough. So, I’m diverging again. If it’s getting harder to write, then I will just write more. When I can’t find Her anywhere, I will just search harder, listen for Her more carefully, reach my hand out further, but more than anything, believe that the Sara who is different-than is worthy enough to walk in Her stead while She is gone. I might even acquire more hardware if it means it will guide Her back to me when she can’t see her way through the storm.

In September I will take the stage again. This time to tell our story, Her’s and mine. It might be a disaster, or it might be the talk of my lifetime. It doesn’t really matter which. What matters now is that I do it, that I keep telling stories. Whether I think I still have the chops to tell them “just right”, or I can only manage to puke the words out for someone to try to piece into something coherent, I have to tell them. Fancy robot parts or not, if I stop trying, if I stop telling stories altogether, she’ll never have a beacon to follow. If I surrender our voice, she may never return at all. I don’t know how it will all shake out, but I’ll tell you more about it soon. Perhaps you will join me on that day, and whether it’s a beautiful summit, or a glorious disaster, at the very least, it’ll be one more story to tell.

I’ll eat you up, I love you so.

***

Also.

The company that manufactures the vagus nerve implant has the word cyber in its name. This kind of “wearable tech” ain’t for pussies, so it just might have a home in Sara 2.0. Booyah. (Original SkyNet Matriarch, FTMFW.)

Stay tuned, turkeys. There are (many) more stories to come.