Nearing the end of my second day in the Epilepsy Monitoring Unit at the Mayo Clinic in Rochester, or maybe not quite the end. I just found out that I am supposed to be sleep deprived again tonight. I am a person who usually goes to bed around 10 or 11pm. Last night I stayed up until 3 am. Tonight I’ll be trying for 3 am again in hopes of inducing seizures. So, right now I have another six hours to go.
Today I am thankful for all the little things that bring me joy. I’ve been sitting in bed all day, but happily keeping myself entertained. I’m glad I brought Sol (my guitar) with me to Rochester. With the help of a nurse who brought it over to my bed for me, I got Sol out and practiced for about an hour today. What a wild thing to be sitting here in my hospital bed just plucking away. I felt like Woody Guthrie for a moment there. I wonder if he had his guitar in the hospital and how long into his illness he was able to play?
I learned yesterday that I’m referred to as being “pre-operative” in my record, so it seems clear that the likely plan is that I’ll eventually be undergoing brain surgery. It’s left me to ask, what is it that I would like to do when I am seizure free again? What are my hopes and goals? It feels like it would be good to write down what I am thinking about to give it some structure, some greater sense of reality, to give myself something to attain, and to hold myself accountable. What I’m writing here is simply what’s coming to my mind. It may grow and change, but it is what’s here now and asking to come to the light.
Here’s what’s come to the light for me, what I want when I am seizure free again. I want to regain my right and ability to drive again and with that right I want to travel home to see my family, maybe take a vacation, and just go visit different little fun sites, day trips to learn about where I live and just have some fun. I’m hoping that ability to drive might give me the opportunity to see my Dad again before he takes his final journey. He’s 92, and a strong man. It’s hard to say when that journey might be, tomorrow or a few years from now. I’d like to do foster care again. I want to build my writing. I’m still unsure of what that might look like, what is my story to tell and where should I be telling that story? I’ve even wondered if I should be taking all of this stuff and creating a book to tell the epilepsy story. There really doesn’t seem to be a lot out there and there are a lot of people struggling. I’ve also thought about children’s books and works on racism and community organizing too or maybe just continuing to grow my blog. In any case I have a duty to keep telling stories someplace, somehow. I want to find my home or maybe it’s make my home. I’m not happy with my work at UMM. I love my students and our community partners, but the hierarchy and atmosphere of mistrust and political game playing is painful. Still, I don’t know if going somewhere else changes that. Maybe the answers are internal as much as they are external. I just know that I want to keep searching and find that contentedness and connectedness with my community wherever that might be again so that I might thrive. I want to act again and to keep playing music and enjoying my fun with the arts. I want to just simply enjoy life, build new connections, celebrate the ongoing connections, and be thankful for all the goodness in my world. That’s what I want. That’s why I want to move forward with brain surgery or whatever course of action that the Mayo staff and I agree on. I want my life back 100%. There’s a lot out there to celebrate and to learn.
I wish you all well on your journeys.