December 2010
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My Role Model
by Ed Dewke

posted <January 1998

My late friend Rita snapped her spine in an auto accident when she was eighteen, about to graduate from high school. Her graduation present was intended to be a trip to Hawaii with her younger sister. Instead, she spent the summer and most of another year after high school in hospitals and rehab centers learning to become a quadriplegic. When she finally got home the first thing she asked her parents was, "When can I go to Hawaii?" A few months later her sister wheeled her onto an airplane and they were off. The extended family was no doubt consumed by anxiety as they watched Rita's plane take off. The trip, they were sure, would be a disaster. As it happened, nothing in Rita's life after the accident was a disaster. Her quadriplegia eventually killed her, in her early forties, and she spent whole years of her life after the accident in hospitals. Rita didn't deny the importance of all she went through. She professed without hesitation that her quadriplegia was a "distinguishing part" of who she was (and who she was becoming).

Rita was one of the most quick-witted and completely alive human beings I have known. Ostracized by her disability from the society she had belonged to, she set about "collecting" the subjects of her own society, and I was honored to become one of those subjects. For seven years Rita and I spent a few hours virtually every Sunday together—I helped her nurse move her from her bed to the bathtub for her weekly bath. I'll never forget Rita's report to me on having found the "perfect job"...

"It's terrific," Rita said. "I'm going to be a hearings officer for social security cases in Jefferson County. Just imagine! These malcontents are going for their day in court, trying to weasel as many bucks as they can from the public coffers because their back aches or their arches are broke or the steel plate in their skulls makes their vision fuzzy. They're going to be standing there in court waiting to plead their case, drooling in advance over the monthly checks, and then in rolls me, in my wheelchair. These malcontents are going to go, Oh shit! How can I expect sympathy from that poor woman?"

God knows how many welfare dollars Rita saved the County of Jefferson.

Rita passed from her society's lives before I became a psoriatic and that was my misfortune. I'm sure it took me longer to come to terms with my psoriasis than it would have if Rita had been around to mock me. I can just imagine her, sitting across her kitchen table from me, sipping brandy and swaddled in one of her luxurious Afghans, saying, "Geez you're lucky, Ed. I can barely remember what it feels like to itch. And to think, you can just reach down with your hands and scratch the little sucker until it bleeds. Is it fulfilling?" And then she'd laugh and ask me if there was a hole in the bottom of my snifter.

Rita had no use for people who felt no affection towards her. But she was quick and decisive about the difference between sympathy and affection. "Anybody who feels more sorry for me than I do for myself bores me to tears," Rita would say. "Anybody who has to feel compassionate on my behalf hasn't got enough meaningful things to do."

The last time I saw Rita she was finishing a fourteen-month stint in the hospital. She had just commanded to be discharged despite her doctor's prognosis that she would die if she went home. She smiled at me and reminded me of all the Sundays neither one of us went to Church because she had to bathe and I came to help her. She snickered and said, "I've been discussing those years with God, Ed, and I think my case is pretty well mitigated. You, on the other hand, ought to be worried." I sat there dumbfounded, incapable of the laughter she was trying to engender. Eventually she laughed herself and said to me, "Ed, I'll try to put in a good word for you."

Whenever I get to feeling too sorry for myself, and there's no member of my society on hand to help me think of other things, I talk to Rita. Oh yes, we have conversations as visceral today as we used to have when she was alive.

"You're pissed because you can't go snorkeling in Bermuda anymore," Rita says, harumphing with condescension.

"Well? I only got to go once, and I loved it," I cry.

"Well, shit," Rita says. "You were in the water for twenty minutes, got to see colorful coral and noisy parrot fish, didn't have the nerve to dive deep enough to panic, never scraped your knees on rock outcroppings, didn't have a run-in with a moray eel, weren't traumatized by curious sharks, and came out feeling like Mike Nelson reincarnated. Right?"


"Well then, quit bitching. You have a perfect memory of a perfect experience. Who knows? If you'd have gone a second time all those bad things may have happened to you. You can go to your grave with a pristine recollection of the joys of snorkeling."

"But it's not fair—"

"Yeah, yeah, yeah. It's not fair that you get to walk around the rest of your life thinking snorkeling is God's gift to humankind when those that do it all the time, and who have run into all the bad things, want nothing more than to die on horseback in the desert."

After a conversation with Rita, I'm inclined to think that psoriasis might actually be enabling. That's a bit perverse and too easy; something akin to a crucifixion complex. Rita's point is that our disabilities and our deformities are only as handicapping as we and the society we keep deign to make them. These days my best friends—those whose homes I stay in when I'm on the road—let me know as a matter of course where they store their vacuum cleaners. Good but unafflicted houseguests will have the manners to strip their beds and deposit the linen, as well as their bathroom towels, in the dirty clothes. Good houseguests with raging psoriasis will sweep up after themselves, too. Sympathy? No thank you. Functioning vacuum cleaner? That will be very much appreciated.

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