Disabled Chronicles, No.68643
My body has been moved and manipulated by many pairs and sets of gloved hands over the last few months.
New hands, unsure hands, cold ones, warm ones. Hands with chipped Tiffany blue polish blurred through the vinyl of the gloves, some with watches, most with no jewelry at all.
I generally just lay there, waiting for them to decide on where and how much they should move or adjust or bend my arms and legs and torso, even after I’ve explained to them how. I’ve perfected this Nowhere Glance, where I’m not looking at their faces as they puzzle out just what I meant when I told them to move me just so, even though I’ve explained it to them 22 different ways till sundown.
There used to be this flash of peeved frustration that would ride shotgun with my 23rd, 34th, 67th explanation that usually only begot more fumbling or inability to complete the moving of my body. So now, I mindfully force my voice to be a bit sing-songy and my tone to be low and even, to hide the fact that I just want to scream till my throat is sore if I have to give them instructions one.more.time.
But I don’t scream.
I patiently take a deep breath and try again… and again, again and some more.
There is a privacy that I lose every time someone has to move my shoulder or adjust my thigh. I have to allow them in my space, in this intimate fashion, to do something for me that I cannot do myself. I have to trust that they won’t pull too hard or let go too soon. I have to trust that their touch will help and not harm.
I have to trust their confidences when washing places only lovers should know; throwing away modesty for the sake of being clean. This takes pieces of me away, having to share Me with folks who stay for a week, a month, a year, then leave for personal reasons or job changes or life events.
It’s hard, having so many different different hands touch me so. They all leave part of their story, their struggles, their grief on my body, in my psyche, through their act of washing and moving and dressing me.
There are nights like tonight where I am laying in my bed after my night aide has moved and lifted my limbs and body into sleeping position and I just want to disconnect from them all. Where my joints and muscles are achy, cranky, tired of being miss handled, pulled wrong, grabbed too hard or not firmly or carefully enough. Trying to erase the traces of folks from my person and just sit with Me, with/in this body.
Having my body moved by other people makes me spend a surprising amount of hours locked within myself. Most times I just wonder how soon before they’ll be done, how much time I’ll have to do a thing I want before the next person is to arrive to help me with the next thing.
This is the part able-bodied folks don’t consider and can’t imagine. That I am to be grateful everyday for the ways that I hand over pieces of me because I cannot do things all on my own.
And I have to be, really. Because what is the alternative? How would my life be without those aides? How would I get to enjoy the hours where I can do things on my own, now thanks to Spinraza?
But this gratitude, still doesn’t stop the feeling like pieces of me are breaking off like dandelion seeds drifting away on a breeze.
It is a constant low level churning and turning over. It’s depleting, uses more spoons than I’d care for it to. And it is necessary, for as long as I draw breath.