The paradox of disability
Disabled? Yes, but NO. I have been wavering for 5 years, in my head and in my body. There was the announcement: you will never walk again, and the rebel, that I am, looked at these experts, these doctors who, 24 hours earlier, were boasting about changing my life for the better, to wonder in the name of what the script had changed. And deeply disbelieved their words, whatever they were.
"stop bitching, you're standing up"
But the reality was dead legs, insensible, a wheelchair and nine months in hospital which, handicapped at 80%, allowed me to return to civilian life, but with a walker and a wheelchair. Nine months in hospital, where I was able to put things into perspective by being around people with more severe disabilities, hearing one of them say to me "stop complaining, you're standing up", even though my loved ones had been transformed into "helpers" and my life had changed radically.
With time, I met those who judged me as disabled, those who wanted to tell me that "it was getting better", and those who had the good taste to say nothing, but to suggest a trip into the world: a walk, a movie, a museum.
Over time, my caregivers have been freed from a lot of assistance: I climb the stairs, I shower, I go to the bathroom alone. But there are still some impossibilities, such as walking alone in the street, and the loss of total autonomy.
Today, when I am in a state of "appearing", depending on my fatigue attacks, and in a caring context, I am "fine". That is, my disability is rather INVISIBLE.
In the street, the one who, with his nose on his cell phone, pushes me, complaining about my slowness and the space I occupy between my cane and my companion, thinks "she's giving me a hard time with her sprain, she should just push herself! Except that by the time I push myself, you've already pushed me, my legs have given out under the pressure, I'm on the ground flattened, and I can't be straightened without two pairs of muscular arms.
Today, when we meet at a conference, there is no indication that I can't make it to the bathroom by myself, and that it's urgent, nor can I zigzag through a crowd. Today, none of you know that I haven't slept a wink because restless leg syndrome wakes me up every two hours, because violent neuropathic pain in my legs and feet takes over in the meantime (and if I don't take it easy, even during the day), that my shoulders and arms are exploding with joint pain because I put so much strain on them. You don't know this because it doesn't SEE, and frankly, I REALLY don't want to talk about it. It's the invisible disability.
And I also think that I am not THAT disabled, that I am lucky to be a writer and a lecturer, to be loved by a family and wonderful friends, to live, to be alive, to have evolved so much in the last 5 years, physically and morally, that I will not have the indecency to whine. Besides, I don't like to ask people for me. I love to be helped, supported, loved, but I believe - perhaps a limiting belief - that one receives help - gratitude! - but that it is inelegant to ask for it.
I don't feel VICTIMS, of anything or anyone, and I am not my disability.
But the paradox is that in order to continue to BE and live among you, among my renunciations - including those of what I can no longer do and of my past life, - and without apologizing of course for my handicap, - I must renounce not declaring it and claiming it, because you see, as in golf, I have a handicap, and you? I need a little attention, I admit it!
Copyright Nadalette La Fonta Published on July 9, 2019