seizures are really bad today. Don’t know how long they’ve been lasting or what time it is when I wake up. Thought it was around noon. Turns out it’s 4 pm. Feel like I’m losing my mind. Kitten woke me up just now from confusion by jumping on Adam’s laptop and turning on a song that brought me back to the appropriate time period.
I hate jumping back in time.
I hate the feeling of being lost in my own home, in my own skin.
Sometimes, I’m lucky. I get stuck. The seizure hits me hard enough that I’m tired. I’m so tired that I don’t want to move, or I still can’t move because it hasn’t let go of my body. Sometimes, I just give in to that and usually by the time I wake up, Adam’s turned on the Doctor Who or Entourage theme song.
I don’t know why that works, but it does. My mind is so strange the way it works, but I remember the moment I first heard music that I’ve memorized. If I hear the Entourage theme music and I’m in a mindframe that is earlier in time – hearing that music RIPS me right back from where I was in consciousness into “today’s” me… or at least the me that has seen Entourage. The rest comes back fast enough. The important stuff is there: I’m the right age. I know I have MS and a seizure disorder. I know where I am. I know who Adam is. I know I’m safe.
Adam jokes sometimes about how I should write Doctor Who and Jane’s Addiction to let them both know how their music’s positively affected my life, since that’s the sort of thing that I would like to know about as a musician. I think I may. Who knows. 🙂
There are times where I think that if I ever wrote about any of this, I’d get sent to an insane asylum, but then I realized that if I write it on the internet, it’s more tame than most things. heh.
I’d say I’m not crazy, but I know I’m not in control of any of this. Not in control of the seizures. Not in control of where in time I wake up… whether I’m suddenly 4 years old, 10 years old, 20, or 28. And it still amazes me that I’m that young. I could swear I’m in my 80s.
I called Dr. Sutherling’s office and told them that I’m having an increase in the number of seizures that I’m having over the last couple of days. I’m waiting for them to call back.
These consciousness knocking trips are what make me question my ability to live a good life.
I worry that I’ll lose my sanity. I worry that I’ll lose the love of my life. I worry that I’ll forget the most important or beautiful things…
But oddly when I’m “transported” – I remember, with exacting detail, so much I thought I had forgotten. It would even be as if I were there. I remember the feel of the rock that the fireplace was made of…the one at my parent’s first house. I remember the feel of the carpet where it met the hearth and how I always made it more crumbly and it made Mom crazy… It’s funny but I almost always start repeating the address to myself. When my inner child gets scared, apparently, it’s very important to give your address, phone number, and where they can find your parents and grandparents… At least she’s trying to stay safe! 🙂 And Adam almost always gets music on faster than I get worried, if I’m in that frame of mind.
I feel so out of control. I wish I could just accept it.