"I'm dying thanks, and you?"
Apparently I’m dying of a rare neuro disorder. That’s what the (provisional) diagnosis says. But if I say that in response to friends asking about my medical condition; “How are you? “They found anything yet?” then everyone gets really quiet (and if you don’t say anything they blurt “You look great!” or “I’m sure they’ll find a cure!”). We don’t talk about dying, we don’t know how. In our culture people with terminal conditions are supposed to quietly slip out of sight or take world cruises or go to Disneyland. Except I need to get the laundry done, don’t you?
A lot of people with disabilities have an attached “shortened lifespan clause” (people with your disability live X years less than ‘average’); come on, I know you’ve googled it. Even conditions thought completely non-terminal a few years ago like CFS/M.E. now (in a few cases) have recorded death progressions.
How to deal with it? I dunno, this is my first terminal condition (isn’t it for everyone?). Denial mode would be great if I didn’t spend several days a week hunting for a GP who will treat me (I was dumped when my (provisional) diagnosis came in). Doctors literally get to the paragraph in the specialist report, stop reading, stop talking and eventually say, “I’ve never heard of this” with this edgy wide eyed look.
I’ve gotten to the point of trying to cheer them up, “Hey, it’s okay, there’s no treatment! I’m an easy patient.”
Two days ago, another GP, talking possible care after he read my (provisional) diagnosis suddenly said, “I wouldn’t feel comfortable touching you.”
Time stopped. O…kay.
Dude, I don’t have leprosy (not yet!).
But this afternoon I was too busy scamming free girl-scout mint cookies to be dying. When I first got my diagnosis Sara gave me a pep talk and I think it was about not letting life revolve around that Sword of Damocles over your head. So the point is, “I’m not dying today!” Well, usually I say that at night, when pain is worst and my home care person is moving me to position 26 in hopes I can relax enough from the pain to sleep. I say to myself, “I’m not dying tonight.”
H., my home care worker keeps repositioning me and says “I hope so because I’m not explaining that to the supervisor.” Of course 40 minutes of pain later and I am asking H. to find “A ball-peen hammer” so she can hit me on the head to sleep because “that’s what works in cartoons.” H. is a very patient woman.
Dying becomes a lumbering thing which hangs about the house. The probable progression becomes just a part of life, like buying snow tires and upgrading the internet connection.
Linda is helping me shower and we are planning our trips.
Me: “So if incontinence occurs two years after symptom onset; what kind of trips could we do then?”
Linda: “Car trips?”
Me: “I wonder if changing how I drink during the day would help with the incontinence?”
Linda: “Oh, talking about uncontrollable body fluids, my flow started today.”
Me: (Laughing.) “That’s your transition? Incontinence to periods? You are getting WAY too used to medical talk.”
I find I have two lives; the life I plan and the life I live. And sometimes they aren’t so far apart. Finally, after three weeks, I was strong enough to return to boxing Thursday.
Coach Ian calls out; “Sparring! Liz and T. you’re together, everyone else choose a partner.”
T. is over six feet and big; bouncer sized big. My first thought is, “What did I do to piss off Ian?”
We tap gloves. T. is giving me these weak slow-mo punches. The kind big tough guys give to girls; girls in wheelchairs.
“Don’t hold back,” I tell T, my gloves defending my face, “you need to give me your best.”
T. continues, not even in a defensive crouch, throwing painfully slow punches that don’t even touch my gloves. I feign to his head and tap his stomach with a shovel hook. I am getting seriously irked. “I was an athlete before the chair,” I tell him, “and I am about to start.”
He stares at me, shuffles his feet a bit and throws another weak ass punch. Over the next fifteen seconds I tap him in the head and face three times. I finish with a left shoulder block to hide my right hand roundhouse to his ear. T. wakes up. He starts finishing his punches. I cover him with a flurry of hooks working both sides of his body until he backs away then comes at me, all 200+ pounds, raining me with punches. Linda said my chair teetered on back wheels, almost flipping over backwards more than once from his attacks.
Now this is fun.
T. gets in some licks of his own; he stops dropping his head and his right hand and by the second round, he is batting my jabs away and coming in for easy head taps. We had a good time.
Afterward Ian came up and made a comment along the lines of “Do you remember the ‘non-contact’ part of this class?”
“He just kept running into where my glove was.”
“Yes Liz, I notice they all happen to do that.”
People say I’m “resilient.” That’s a word which makes me think of an oak tree. I’m no oak tree. I worry people think I am cruising through all this physical/emotional crap. The truth is that I shatter with monotonous frequency; those hit-the-wall crying jags when all you are looking for is that metaphorical red “exit” sign. I like to think of myself as the dandelion. I’m not particularly strong or have a big defense, and even a little event or an unthinking person can squash me flat. But one thing any lawn owner knows; dandelions always come back (whether wanted or not).
“In the fall, I am going to go back to indoor rock climbing.” I tell Linda.
“Sweetie,” she says in a way which means I am not going to like what she is going to say, “you can’t do rock climbing any more.”
“Oh.” I think about it for a moment, “Sure?”
“Your arms can’t hold your body weight anymore.” She gives me the “I know you don’t want to hear this but you need to” look.
“Oh. Okay.” I think to myself that she’s probably right but maybe I should sneak away one afternoon just to see.
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