"I'm not here to cure you." (My GP, Dr. Death)
I think becoming suddenly disabled should have cards and a gala event like weddings or a graduation. Or at least a pamphlet to hand out to friends entitled: “Your friend is disabled....get over it!” People tend to drop like flies the first few months when “so, you’re disabled” sinks into “Oh...you’re one of them. Call me when you get better!”
Friends and relatives often don’t “get it.” They have this idea that Disability Elizabeth is like a diet meal; pretty much the same but with a little less oomph.
Ways to tell that your friends don’t understand: They want to meet you in a pub that has five stairs to get inside; they want to go to a film and expect to sit together (your offer for them to camp on the floor in the wheelchair area is declined); after you fall face first onto the pub table and have to be revived with oxygen a friend tells you, “You’re not as fun to be around anymore.”; they keep asking, “When are you getting better?”; they suggest a stroll together, then meander so aimlessly they walk in front of your wheelchair several times plus go down a steep grade before saying “Oh wait, this isn’t the way”; when seeing you they ask, “Why don’t you stand up and walk, aren’t you tired of being in a wheelchair?” (that last statement was my ex-epee coach who believes illness is caused by weak willpower).
Elizabeth=disability. Was that so hard to remember?
Wait, shouldn’t I be saying, “I am not my disability?” Except I WAS my disability. My disability controlled everything: When I slept, how I ate, how I got around, what I could do and eventually even my personality. Know the saying “Good guys finish last.” There is another saying which comes from the wheelchair version of A Streetcar Named Desire, “I have always relied on the kindness of strangers......after I boldly and bluntly told them exactly what to do.”
During my second week using a wheelchair, I got a ride with my friends to the waterfront. Once there, they remembered another appointment. “But I just got here,” I protested. Oh, okay, they said, and then they turned and left. As I watched my ride drive away I thought, “Wait a minute, that’s not how the script is supposed to go.” Here I was, stuck away from home with a loaner chair borrowed from the Amityville Horror. The chair weighed over 35 pounds, and was so front heavy that when the sidewalk slanted it tended to run into the street. I couldn’t do wheelies to get over bad curb cuts and it had a habit of running into trees. Plus, I couldn’t brake with my hands yet or manage uphill (or downhill, hence the running into trees). But the friends who left didn’t know all that (though my frequent swearing at the chair might have tipped them off). They didn’t know how hard using a wheelchair is for the first weeks. All they knew was I was Elizabeth, you know, the super-fit, super-independent Elizabeth who didn’t “need” rides but occasionally “accepted” them. Except I wasn’t that Elizabeth anymore and though I was sitting in a wheelchair, they still couldn’t see it. And because I was still in “nicely nice” able-bodied mode I just watched them go.
Four weeks later I graduated to level one of urban wheelchair survival. I was in the mall and needed the elevator to go down a level in order to leave. But it was Saturday. The elevator came, it opened, and I patiently waited for people to make space for me. Cue able bodied people shoving past me to fill the space as quickly as possible. I waited for the next elevator. This happened seven more times. The eighth time, I said in a loud voice, “Coming through”, pushed forward (eyes fixed to floor) and left everyone else to guard their shins. That was the start of deciding I was going to have equal or needed access whether other people found it particularly convenient or not. And you know what; when you get a staff member to clear out the people at the pool who think the blue sign on the changing door means “Family changing and storage area”; they can’t actually make your head explode with dirty looks, no matter how hard they try.
Somewhere in all of this my therapist/friend told me a story about a woman with Lupus strangling a doctor with his tie (my friend knew the type of story I wanted to hear). The woman was in the hospital when the specialist came leading a crowd of doctors. The specialist pulled down the woman’s gown so he could show some interesting lesion development. To him the woman was merely the host of a particularly fascinating disease progression. She grabbed his tie, brought him face to face and reminded him that she was human and she expected to be treated as such. My therapist finished by saying that was the moment the woman took control and the disease no longer controlled her life, even though it eventually killed her. Like many therapist sayings, it sounded really profound until I tried to figure out how to apply it. I honestly sat at home saying over and over; “She controlled the disease, the disease didn’t control her.” What did that mean? If I got too hot, I passed out. If I wheeled too long, I was in bed for two days. How could I control it?
All during these months’ people would say, “Lucky you’re a writer, since you can write books at home.” But I wasn’t writing. Eventually I told Linda the truth: with the little time I was awake and the effort involved, I couldn’t find the motivation to write if I didn’t know whether I would be alive to see the work published. This was not helped by my GP (Nickname: Doctor D.) who met with me weekly to say, I quote: “None of us really knows how much time we have left”, “Any activity you do could kill you”, “It’s hard to say how many months you have left.” And my favorite: “I’m not here to cure you, I’m only here to help your quality of life (as you die).”
At some point, amidst daily medical tests and appointments I said “Fug it!” (I said something else but the BBC is a family site). I got up that morning and told Linda, “I want to go to Japan next year, maybe in the spring.” The next day I said, “I’m going to start writing again.” I wasn’t sure about the disease but I was going to be darned if I would let Dr. D. dictate how I viewed or lived my life.
So I was down, but at least I wasn’t out. And while I may not do as much as able-bodied Elizabeth used to, I can still do things. I may not have as many choices anymore, but I still have choices. I can still go to a film, or go to the park, or go shopping, have a meal out or go exercise; it just takes a week or two instead of doing it all in one day. Roll with it.
I started telling people, “I’m Elizabeth....and you better be wheelchair accessible.” Was this what my therapist had been talking about? When would I get to strangle a doctor? I was looking forward to that. It is not that all the medical crud had disappeared; it is just that I realized what it really was: a distraction. A few years ago I asked a friend to explain what living with AIDS was like. He said it was like living with a monster in the house. Now I knew what he meant.
Back to the medicals; another day, another specialist medical appointment. God, I’m tired. That’s when the Doctor said, “Live? Oh yes, you’re going to live, a lot of years.” (I experienced this hope against dread epiphany feeling which would have made a great end to this piece if only the doctor had simply SHUT UP!) She continued, “Of course,” she peers at my medical charts, “Do you want to really live that long? I dunno. Can’t say. Course, that’s my opinion, but in any case we’ll need to run some more tests....”
It looks like the monster and I are going to get to know each other really well.
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