I can’t remember for sure but I think I was just out of the wheelchair when we went to see Jeremy Delphi at this do-gooder social service agency. I think I had just started walking with the cane. I turned to Jeremy for help. Because I’d known him for a long time I figured that when I was so badly hurt and really in trouble I could count on him and the agency. Boy, was that wishful thinking. ' I was always being put in a position where I had to argue that I had, in fact, been brain-damaged. I was having all these feelings about death. It’s only natural. After all, I had just about died. In the beginning, they were taking bets if I was going to make it at all. I wanted to “ deal with”—therapy’s like a card game where you “ deal with” s t u f f - deal with feelings about being crippled and brain-damaged, family and friends, work and money, what’s left for me, you know: Love and Death. But there wasn’t time to “ deal with” all these feelings about dying and getting crippled because we had to deal with The Relationship. Jeremy didn’t have much to offer when it came to dealing with feelings about dying. He had a well-worn agenda about Relationships. You know, when a llyou got is a hammer, you tend to treat the whole world as a nail. It was like any sucker bet. “Just one more card.” I figured we werejust inches away from working it out. To get somebody to put a lot of chips on the table they’ve got to believe that they can’t lose. Or at least they’ve got a really good chance (which translates to they won’t lose). Honest to God, I figured we were going to work it out. The idea was to first deal with The Relationship and then, maybe, we could deal with life and death. All this time, nobody could see that I was injured. When I was still in the hospital people were telling me “You’re OK, You’re OK.” My Fd forget what I was mouth, who I’d known for over twenty years, since way before he went to law school, told me, “You’re back to normal.” Part of this junk is denial and part of it is that people just can’t see it. Through this whole deal I was painfully forced to relearn that “ seeing is believing” for most people. Maybe if I would have put my heart into it I could have learned to drool and make baby-talk. It probably would have made people a lot more comfortable. Or it would have made more of them split. Jeremy was one of those who didn’t see much wrong with me. I remember saying to him, “ I’m crippled.” “You’re not that crippled,” was his loud insistent answer. When he thought that you didn’t catch his meaning he spoke louder and clearer. He saw me walking with d ifficulty, unable to use one arm, having some difficulty talking. Not even in a wheelchair. I mean, he wasn’t having no trouble walking. And he wasn’t having no trouble with his memory. I mean, if you ain’t been through this junk, how much empathy you gonna have, anyway? It took me a couple of years to get a hint of what was going on. Of course, the loss of the use of one arm and one leg caused by the brain damage and all the many problems that come out of that. Difficulty “ controlling” my emotions. Loss of memory that’s common to everybody with brain injury. You know, I couldn’t count change because if there were a nickel and a dime and a quarter, by the time I’d get to the quarter I’d forget the nickel. I’d forget what the hell I was talking about in the middle of a sentence. I’d forget what I was doing all the time. Forget appointments and meetings. And, everybody’d say to me, “Oh, I have trouble with my memory too.” I was having “judgment” problems, difficulty swallowing and a tendency to choke, little control over going to the bathroom, the abandonment that happens to people with serious problems (they might be catching), the lack of income—75 percent of the handicapped are unemployed and most of those who do work can only get part time jobs. And Jeremy is saying, “ You’re, not that crippled.” When he became director of the clinic he sent me to see this woman at another branch of the agency. She suggested that I go to Al-anon meetings. So, I was always being put in a position where I had to argue that I had, in fact, been brain-damaged. What am I doing now, for God’s sake? I kept continually asking for help and, as I’ve just said, nobody would see that there was anything wrong. My mom was just in town and told me about a TV show where she just saw The Truth about brain injury and all brain-damaged specimens on the show were complaining because nobody could see that there was anything wrong. doing all the time. Much later, a doctor told me, “ No! No! You have been through something.” “Well, why the hell can’t these social work/therapy types see it?” “ Most of them haven’t had neuropsychology,” he said, and all them other ologies. The National Head Injury Foundation calls brain damage—they call it closed head trauma—the “ hidden epidemic.” I wanted to explain what happened to me so I tried for about a year and a half to raise money to produce a radio documentary to let people know about brain damage. Victoria Sprague, the cofounder and director of the Midwest Association for Comatose Care felt that the documentary I wanted to make was related to what they’re doing and worked with me. A lot of brain-damaged people do some coma time. She has a brother who is a researcher for the Library of Congress. He did some research and wrote: ...in this country, over 500,000 people are hospitalized each year as a result of traumatic brain injury. Of these, 70,000 to 90,000 will sustain head injuries severe enough to cause lifelong physical and mental impairments. Put another way, there are three times more head injury victims than [victims] of multiple sclerosis. There are ten times more head injury survivors than spinal cord injury survivors. There are forty times more head injured individuals than persons with muscular dystrophy. It was not only hidden but the doctors don’t know what was pulling off. I did a talk show about brain damage on KUOM, the college radio station where I used to work. I said just that: “You guys are just guessing. You’ve got white coats and big words but you’re just guessing.” The doctor on the program acknowledged that was true. Somewhere in there is the feeling that shrinks can see and therefore know what's going on. I was trying to put together a national radio program abo6t brain damage. I had done a bunch of documentaries that ended up on National Public Radio, had a watl full of awards, had the injury myself, and had worked out distribution with NPR as much as you can before there is a product. So I figured that it would be a piece of cake. But, like Woody Guthrie says, If you ain’t got the do, re, me... Can you imagine how all the people who are brain-damaged feel? Five hundred thousand every year, a million in two years, a million and a half in three years....Frustrated. Nobody hears them or sees it or else they get written off like a sack of potatoes. And there’s this other thing going on called disinhibition that’s got to do with the brain damage. Disinhibition means not being able to inhibit yourself. I never thought about it, but civilization has got a lot to do with inhibiting your responses. With not telling your boss what an asshole he is, with not kicking in the TV when once again you can’t tell the difference between tonight’s news and a sit-com. There’s a lot of stuff that we don’t do—that we might even want to do—that we inhibit. Well, it ’s your brain that stops you. Anyway, it ’s real common in the brain-damaged that inhibiting don’t work so good. On top of that you get pissed off real easy. Tom, this guy with a nice-nice come on, who works with the handicapped, says the brain-damaged are “an angry population.” He says it in that kind of do-gooder, understated way, making sure to let you know by the paralanguage that he’snot one of them. You got the message that he was above that wretched lot. Some of the nurses who were familiar with brain damage would offer a generalization that they had learned. “You’re sooo angry.” In other words, they might not have known anything about me as an individual but they knew that I had suffered closed head injury and therefore I rriust be “ sooo angry.” While most everybody acted as if there wasn’t too much wrong with me, the doctors assumed that everything that was going on with me was caused, or at least affected, by the brain damage. Like pissing. I started to piss a lot. Every ten, fifteen, twenty minutes. And after examinations and sticking tubes up me and examinations their best guess was that it had to do with the brain damage. The brain damage gave them something to hang their “ I don’t knows” on. Over six months this pishing went on. Losing control in my pants, in the car, and forcing me to hang around near the bathroom at home. Six months is a long time ten to fifteen minutes at a time. And everyone else’s attitude was like Jeremy’s “You’re not that crippled.” My father was ragging on me in the car, “You’re not brain-damaged,” he said trying to argue me out of it. One time I got stopped by the cops and said I had to go to the bathroom before I could even talk to them. Thank God, the cop was nice enough to let me do it. So anyway, one day Dr. Szabad says to me on the phone, “Good news! You’ve got a bladder infection.” The injury caused me to really depend on my friends. Like, I couldn’t climb the stairs without a handrail. Years later, I still ain’t no maven on the stairs. I was waiting for a couple of friends to screw in the screws to hang the handrails so I could get to the bathtub at the top of the stairs. And I couldn’t get up the stairs until my friends got around to putting in those screws. They kept putting it off. It was over a month before I could take a bath. Stink much? And that wasn’t the only way that I was depending on people. But, all this time I couldn’t see that they were splitting. I mean everybody loses a Having all these people go away and ignore you is fiendish punishment. 28 Clinton St. Quarterly—Fall, 1989
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