- Posted by Elizabeth McClung
- 14 Oct 07, 07:42 PM
Apparently I鈥檓 dying of a rare neuro disorder. That鈥檚 what the (provisional) diagnosis says. But if I say that in response to friends asking about my medical condition; 鈥淗ow are you? 鈥淭hey found anything yet?鈥 then everyone gets really quiet (and if you 诲辞苍鈥檛 say anything they blurt 鈥淵ou look great!鈥 or 鈥淚鈥檓 sure they鈥檒l find a cure!鈥). We 诲辞苍鈥檛 talk about dying, we 诲辞苍鈥檛 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, 诲辞苍鈥檛 you?
A lot of people with disabilities have an attached 鈥渟hortened lifespan clause鈥 (people with your disability live X years less than 鈥榓verage鈥); come on, I know you鈥檝e 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 (颈蝉苍鈥檛 it for everyone?). Denial mode would be great if I didn鈥檛 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, 鈥淚鈥檝e never heard of this鈥 with this edgy wide eyed look.
I鈥檝e gotten to the point of trying to cheer them up, 鈥淗ey, it鈥檚 okay, there鈥檚 no treatment! I鈥檓 an easy patient.鈥
Two days ago, another GP, talking possible care after he read my (provisional) diagnosis suddenly said, 鈥淚 wouldn鈥檛 feel comfortable touching you.鈥
Time stopped. O鈥ay.
Dude, I 诲辞苍鈥檛 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 over your head. So the point is, 鈥淚鈥檓 not dying today!鈥 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, 鈥淚鈥檓 not dying tonight.鈥
H., my home care worker keeps repositioning me and says 鈥淚 hope so because I鈥檓 not explaining that to the supervisor.鈥 Of course 40 minutes of pain later and I am asking H. to find 鈥淎 ball-peen hammer鈥 so she can hit me on the head to sleep because 鈥渢hat鈥檚 what works in cartoons.鈥 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: 鈥淪o if incontinence occurs two years after symptom onset; what kind of trips could we do then?鈥
Linda: 鈥淐ar trips?鈥
Me: 鈥淚 wonder if changing how I drink during the day would help with the incontinence?鈥
Linda: 鈥淥h, talking about uncontrollable body fluids, my flow started today.鈥
Me: (Laughing.) 鈥淭hat鈥檚 your transition? Incontinence to periods? You are getting WAY too used to medical talk.鈥
I find I have two lives; the life I plan and the life I live. And sometimes they aren鈥檛 so far apart. Finally, after three weeks, I was strong enough to return to boxing Thursday.
Coach Ian calls out; 鈥淪parring! Liz and T. you鈥檙e together, everyone else choose a partner.鈥
T. is over six feet and big; bouncer sized big. My first thought is, 鈥淲hat did I do to piss off Ian?鈥
We tap gloves. T. is giving me these weak slow-mo punches. The kind big tough guys give to girls; girls in wheelchairs.
鈥淒on鈥檛 hold back,鈥 I tell T, my gloves defending my face, 鈥測ou need to give me your best.鈥
T. continues, not even in a defensive crouch, throwing painfully slow punches that 诲辞苍鈥檛 even touch my gloves. I feign to his head and tap his stomach with a shovel hook. I am getting seriously irked. 鈥淚 was an athlete before the chair,鈥 I tell him, 鈥渁nd I am about to start.鈥
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 鈥淒o you remember the 鈥榥on-contact鈥 part of this class?鈥
鈥淗e just kept running into where my glove was.鈥
鈥淵es Liz, I notice they all happen to do that.鈥
People say I鈥檓 鈥渞esilient.鈥 That鈥檚 a word which makes me think of an oak tree. I鈥檓 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 鈥渆xit鈥 sign. I like to think of myself as the dandelion. I鈥檓 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).
鈥淚n the fall, I am going to go back to indoor rock climbing.鈥 I tell Linda.
鈥淪weetie,鈥 she says in a way which means I am not going to like what she is going to say, 鈥測ou can鈥檛 do rock climbing any more.鈥
鈥淥h.鈥 I think about it for a moment, 鈥淪ure?鈥
鈥淵our arms can鈥檛 hold your body weight anymore.鈥 She gives me the 鈥淚 know you 诲辞苍鈥檛 want to hear this but you need to鈥 look.
鈥淥h. Okay.鈥 I think to myself that she鈥檚 probably right but maybe I should sneak away one afternoon just to see.
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