The Trump Card

Yesterday I ran into "O." It was the first time I'd seen him since we passed each other in the hallway a couple months ago after our sixth month flirtation ending in what I'll call a "one night sit" since I wouldn't go all the way. To refresh everyone's memory, that night I darted out of his room after he fell asleep, left a note saying we should go out on an actual date, and he texted back the next day saying that that was a great idea. Then I never heard from him again despite my occasional text messages asking him what was up and telling him that as a neighbor I needed and deserved the "It's not going to work" talk.

Anyway, when I ran into him a couple months ago I was dressed in a cute outfit. I had been well enough to take a shower that day and I was getting groceries out of my roommate's car. We stopped in the middle of the hallway and he introduced me to his long time friend and said that he would talk to me soon (which he never did). He was open, unreserved, and seemed to know that his lack of communication was his problem and not because of anything I had done.

But when I saw him again yesterday, I was in pj sweats, my hair was in four slept on braids bunched together, and I hadn't showered in a few days (though a wash cloth and deodorant hopefully kept me from smelling). O was getting out of his car as I carried a garbage bag full of recyclables down to the bins which are located right next to his parking space. I did a little half wave, and our conversation went like this:


O: (smiling but scared) Hi.
Me: (smiling but aloof) Hi.
O: How are you feeling?
Me: Good.

Then I proceeded to drop of the recycling. As I came back out of the trash area he was getting something out of his car, so instead of saying bye I just continued on my way to get the mail.

That "how are you feeling" really irritated me. The only change between our first chance meeting and our second is that I had texted him of my brain abnormality, since when we were still friends we had discussed my search for a diagnosis which my doctor thought at that time was probably the rare seizure disorder. The last time I had heard "how are you feeling" in that tone of voice, it was said by an MRI tech as I was getting a scan to rule out MS. When the tech said it I felt the same irritation, though at the same time I felt a bit of fear that what ailed me may be worse than I had imagined. Luckily it wasn't, at least not then, and I left knowing that the tech was trained to treat his patients with fragility.

O, however, is not an MRI tech. He is a guy who tried to sleep with me and never called me again, despite knowing that I live right below him and can hear everything he does. The MRI tech was allowed to ask how I was feeling. The only thing out of O's mouth should be an apology for standing me up. Or it should at least be the first thing.

It's not that I don't want people to be aware of my disorder. When friends don't understand the complexities of it, I'm always open to discuss it with them so they'll get the full picture. And when they ask how I am as if I were fragile it doesn't bother me, because our friendship goes beyond me being ill. It's filled with talk about how our days went, drinks and food consumed with laughter, and a sense of connection that's separate from health.

But potential boyfriends are different from friends. Friends see my fragility but they also see my strength, and it's the strength that they focus on when they interact with me. When I find the right guy he will also see this strength. Not in terms of thinking of me as a warrior or hero, but just an average person dealing with a hard life issue who tries to take it in stride. But to O, I am someone to be pitied and ostracized. In his eyes I lose my sense of humanity, and even my right to be treated respectfully, because I am not well. It's as if "congenital brain abnormality" trumps "being stood up," and because my disorder is so much worse than his actions, he shouldn't be responsible for apologizing for them.

I ended the night being tortured by his karaoke party where I could hear every song sung and every laugh laughed. But the "torture" was cut short when my gay friend picked me up for a night on the town. We met our other friends, we laughed and talked and danced, and when he dropped me off his final words were not "how are you feeling," but "I'll see you again soon."

I am America

My dad was a hustler. He hustled himself in and out of marriages and parental responsibilities to numerous women and kids. He hustled himself straight into prison by attempting to rob a bank, and he hustled the government by getting social security disability even though he wasn't disabled. When my dad died he didn't have a penny to his name, he was still an active alcoholic, and he had recently "moved up" to an apartment that didn't have rats running around or stray bullets flying through his living room window. My relationship with my dad was probably similar to most middle class girls with working class fathers -- I love talking about his deviousness and his spunk but neither I nor him wanted me to turn out like him. I was supposed to rise above his station and make something of myself.

Today I applied for SSI and SSDI, and I wonder how my dad would feel about me being on welfare just like he was. "The apple doesn't fall far from the tree," he'd probably say, and probably still tell his neighbors about what a bright and gifted daughter he has. I can't shrug the feeling though that he would probably also be a bit disappointed to see that despite all my education and middle class upbringing, I'm right in the same spot he was in. And I can't deny the fact that I feel a bit disappointed in the situation myself. When I look at all the details that have led me to where I am now, it all makes sense, and I know that my case is different than his was. But coupled with that is the knowledge that despite our largely different life experiences, I am my father's daughter. I'm a bright and intelligent human being who is thwarted by a body that can't overcome its demons.

My dad had a lot of problems, and was not really a father at all, but the one thing he gave me was a sense that I am worth something and that I can do anything I set my mind to. My dad had a lot to say but did not have the strength to say it. He died an astute man who was not able to make his mark on the world. The longer he's been dead the more I learn about what his life must have been like... What it meant to be a black man born in the Midwest in 1930. What it meant to live through Martin Luther King, Brown v. Board of Education, and the LA riots. When Michael Jackson died it felt like my dad had died all over again, yet more tragically this time because I'd had years to get over his abusiveness to my mom and to grieve the relationship I wished we'd had. When Obama was elected into office my first thought was to my father and what that would have meant to him.

This is what keeps me writing. My dad left me with nothing but he also left me with everything. He and my mother created a daughter on Haight Street in the 70s and we lived in a walk-up apartment home until I was three. I slept in the walk-in closet in between the bedroom and bathroom, and got up and yelled "Daddy!" with a big smile on my face, every time he tiptoed past me to take a bath.

I may be on welfare like my father was, I may have even inherited my congenital brain abnormality from his genes, but he also gave me a legacy important to the history of mixed race America, and because of this I can't not share my story, no matter what it may be. So I'll take my food stamps and government handouts, and I'll be my welfare father's educated welfare daughter, writing writing writing till the day I die.

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.

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.