Pity, Party of One

"What are you bawling about?"

It could've been my mother speaking. Those exact words, in that exact tone, "What are you bawling about?" I half expected it to be followed with, "Suck your snot some other time," or "Those crocodile tears don't work on me." I nearly had to pinch myself to make sure I wasn't standing in 1994 with tangled hair and dirt on my face.

"I'm not bawling about a damn thing, Bill."

Good old Bill, with his unwashed hair and his grimy sweats and his gut out to kingdom come -- Bill, whose job it was to drive me to State College to see Dr. Ayleward at Geisinger Medical Center, whom I had always liked way more in theory than in practice, the guy I talk to twice a year at the most -- Bill had the fucking gall to ask me what I was "bawling" about. Fiercely, I wiped away the one tear that had gathered at the corner of my eye.

"Well, you have tears."
"I'm just a little upset."
"I can imagine how upset you are."

No you can't, asshole.

I didn't say it. I turned to the window and watched the mountains roll by. I felt slightly ashamed of myself: for one, only those I am closest to are privileged enough to have seen me cry. I haven't shed a tear in front of anyone for the past seven years unless I damn well meant to do it, primarily because every time I cry, even when I'm alone, I hear something like, "What are you bawling about?" Secondly, looked at from a face-value perspective, it appeared that I was crying over not having a horribly disfiguring autoimmune disease. I took a second to wonder whether or not I should be crying at all. I finally decided that if I had to cry, I'd do it later. Alone. Me myself and I would cry together, since the three of us knew what I was crying about in the first place.

I really am glad I don't have a horribly disfiguring autoimmune disease. One of my biggest fears was getting scary bird-lady hands. Now that I know that won't happen, I'm unspeakably relieved. I guess my problem lies in the idea that I was hoping, for once in my life, for someone to say: "Here, Miss Bernard, is the answer, and this is how you fix it." Instead I got the same answer I've always gotten: "It's just a new part of the palsy ... there's nothing we can do." You just have to put up with it. We're sorry. Etc, etc, etc.

The rheumatologist actually looked sad today when he gave me the same old lines, like he knew how often I'd heard them before. "I know you're in some pain," he said. "Sometimes a lot of pain. I know you don't feel well. I know you're sick. I wish there was some way I could help, but there isn't. I'm sorry."

I can't help you ... I'm sorry.

I've heard that from so many doctors now. I've gotten so many secondary side effects no one prepared me for. When I was a kid, my mother was too busy trying to convince herself nothing was wrong with me to give it to me straight: This is what will happen. Get ready. As a child, I could run. Jump rope. When I fell, I could spring up from the ground unfazed. Now I walk half a block and my ankles swell. I couldn't get half an inch off the ground if my life depended on it, and when I fall somewhere outside my own home, I have to crawl to the nearest building and use a wall to get up while everyone around me stares. Over the past seven years, I have watched my life become cluttered with mobility equipment: canes. Crutches. A walker. A wheelchair. A power scooter. A shower chair. A special toilet seat. Grab bars. Low-vision software. At the pharmacy, I have to ask them to clip the edges off all the caps on my prescription bottles so I can pry them open. I recently made the switch to Velcro shoes because I can no longer bend down enough to tie mine. It seems that I'm either regressing to toddlerhood or aging  five years a day, and there's no way I can stop it. I've done the therapy, I take the medicines. Now I'm just watching everything slip away, and I'm scared. I'm so afraid. I'm afraid it's all my fault.

When my mother finally stopped my daily therapy when I was sixteen, she sneered at me before she left the room that morning and told me matter-of-factly that I'd be in a wheelchair by the time I was twenty. She was right: I was. I can't help but think that somehow, I'm doing something wrong. If I had let her continue for two more years, where would I be? I have had people tell me that working me to the bone and leaving me bloody and shaking did more harm than good, and that makes sense. I want to believe them, but I don't know what to think. If I still had leg braces, would that help? If I went to physical therapy more often, would that help? Or would I just be adding blistered, pinched, aching feet and twice-weekly absolute exhaustion to my list of problems? It seems that no matter where I turn, there is some monster waiting to jump me. If I went to PT, I'd have to fit it between classes and I'd be too damn tired to do my homework two nights a week, at least. If I got leg braces, I'd walk even less than I do now because my feet would hurt with every step. I'd have to buy knee socks and extra Velcro and moleskin to cover the fastenings on the insides. And all the little things Medicaid doesn't pay for add up, like crutch tips and tires for the manual chair, which they refuse to replace or upgrade because I also have a power scooter, which strands me more often than not.Having a disability is a full time job that takes money out of my pocket instead of putting money in. I can't keep up with my friends; I can't climb in and out of the car, and I'm always the brunt of gimp jokes, like I need another reminder of how ridiculous I must look. Even my college contrives to keep me out, with its inaccessible classrooms and tiny, ridiculous excuses for elevators.

Anyhow, now I've gone and totally blown whatever pride anyone ever had in me for being a chin-up sort of girl. I try to be admirable, but I'm tired of pretending none of this bothers me. I'm tired of pretending I'm not afraid. I am. I am afraid. I'm a 25 year old woman who really wants her mommy, but I know all I'd get if I called up the woman who should, above all others, want to be my mommy, all I'd get is, "What are you bawling about? There's nothing wrong with you."