Head games

The most exciting thing about getting the MRI showing I have a brain abnormality is that finally I have proof that what I have isn't in my head. I thought this would come in handy on Saturday when I became extremely dizzy, stumbled around the house, got into bed with the room spinning, and then stood back up for a blanket and realized I couldn't walk.

This has happened once before, and in that instance, at the advice of my general clinic, I called 911. Sure, it wasn't life-threatening, but when you can't even get yourself to the bathroom, let alone to the doctor, it's quite alarming. In addition, as I'd been watching my legs slowly get worse, having them go out completely was my biggest fear. I wasn't even sure how to unlock the door for the EMTs until I realized that in my 10x10 apartment I could get to my computer chair in one fell swoop and wheel myself to the deadbolt. Once at the hospital, the doctor was less than helpful--actually downright rude as he yelled at me to put one leg in front of the other and couldn't understand why I couldn't complete that task--and after a few hours my legs started working again and I was sent home.

On Saturday night the same thing happened. It had been a year since the previous instance, and while I was pretty sure it would go away in a few hours, the fact that I had to pee and couldn't even take a step while leaning on my roommate was scary. Plus, she said, "Maybe this time, going in armed with the knowledge of having a brain disorder, it will be even more crucial to get yourself checked out."

The advice nurse said to call 911. The paramedics said, "This is only for emergencies" as they looked at me in bewilderment, until I tried to walk and they saw my right leg completely stationary. They carried me down the stairs in a kitchen chair and took me to the nearest hospital, where the doctor yelled at me for coming in and the nurse asked if it was mental. Now, the doctor and the nurse did have their reasoning. The ER didn't know what to do with a rare brain abnormality and a nurse couldn't really understand why my legs can't move but my reflexes and strength are intact. Still, I was hoping that "congenital abnormality of the cerebellum" would carry just as much weight at the hospital as it did to the Department of Social and Health Services. On Sunday night my legs went out again, and I now have a walker by my bed for future occurrences, which I hope I'll be able to use. (Wheelchairs are out as they affect my sense of balance.)

Today my roommate went up to see her parents. Her mom, who is a nurse, tried to persuade her that my case is worse than we think it is and that it won't go away. We pretty much agree with this statement so it wasn't controversial. When she questioned the reasoning behind my roommate calling the movement disorder specialist on my behalf, my roommate let her know that we are trying to keep the appointment date a secret from me because sometimes I can come out of episodes for a few hours due to the adrenaline rush of knowing I have something important to do (and then I crash hard after). At that statement, my roommate's mom questioned the validity of my disorder and concluded that it must in fact be mental.

I don't begrudge her for thinking it's mental. I mean, if I wasn't experiencing it I would think it was too. But it is a little disheartening that I'm probably going to have to defend myself for quite a long time if not forever, and that some people will never be able to grasp what's going on. My neurologist understands the adrenaline rush, and the fact that I can have it and still not be able to control my disorder, and that's the important thing. So does everyone I have lived with throughout this experience. It's impossible to see me day to day and not know that something is happening to me in almost an exorcist or out of body fashion. But on my well days, which is when people outside the house see me, I always look, and feel, completely normal.

Well, nothing about dating in this post, but man, those EMTs were sure hot.