Picture This

Whenever I come out of my movement disorder "flareups," I'm filled with latent energy and cram as much as I can into my indeterminate well moment. I take a walk, I do dishes, I read, I take a shower and wash my hair... Usually only one or two of these things get done before the flareup returns and I once again move in slow motion and spend hours on the couch watching "How I Met Your Mother."

My roommate and I have this phrase we use for what my messed up brain experiences: "If you can't picture it, you can't do it." If I stand and look at the shower head and can't picture myself being under it, I know I'm in too much of a flare to hop in. Same if I stand and look at a pile of dishes and can't picture washing them. Same if I try to play a fast song in my head to see if I can listen to music. Because I haven't been able to balance on a bicycle ever since my disorder started, I can't get a mental image in my head of the wheels spinning around as I ride down the street.

Today I saw my public health general practitioner for the first time, and to my surprise she personally knows the movement disorder specialist that my neurologist wants to refer me to. When I told the GP that I often couldn't make sense of words on a page and have recurring bouts of sleep paralysis, she agreed that I need to see this specialist as soon as possible.

Now, I don't have much faith that the specialist will cure me. What I've read about cerebellum abnormalities and movement disorders leads me to believe that my symptoms will be treated but not cured. This will probably include experimentation with medications and maybe a surgery which will act like a temporary fix. These are all just speculations, as I still don't even have a name for my abnormality.

It's hard to admit this, but the thought of being completely cured scares me. This seems sacrilegious, lazy, and martyrly to say, for who doesn't want to be well? But then it dawned on me... the fear I have over getting well is the knowledge that I will lose benefits and have to find a job, that I will have to pay back my student loans and figure out how to buy a car and live as a well person does. More than the financial changes I would have to figure out who I am all over again. I've lived with this disorder for so long that the thought of it being taken away is disorienting.

But the hardest part in thinking about what I will need to do if I get well, is trying to picture doing something that I can't right now do. The "If you can't picture it, you can't do it" rule extends to thinking about how I'd go about living my life if I were well from a sick point of view. My slow brain can't wrap its head about re-entering society at full speed.

Yesterday I did errands in the downtown area of a small city while I waited for my roommate to get off work. By the last half-hour of the four-hour excursion, my head was about ready to shut down. I opened a book in Barnes and Noble and the words didn't make sense. I then had to flee B & N because a phone kept ringing. I tried to sit in the adjoining Starbucks but the music was too loud. Then I saw outside seating that was just what I needed: a quiet place in the shade with absolutely no one around. I sat there, bookless and fuzzy brained, and lost myself in my own thoughts and the quietness of that particular part of the city, and I felt really lucky for being forced to simplify my life. If I were well I'd have to be doing  something every minute of every day, because that's how our American minds operate. But since I wasn't I was allowed to revel in the sights and sounds of nothing. And that's something that, in the days before my sickness started, I used to not be able to picture myself doing.