These Hands. I began writing this for Muscular Dystrophy Awareness month but just now finished. Better late than never:
September is Muscular Dystrophy awareness month, so I wanted to share an intimate and honest snapshot of what a progressive disease can feel like.
These hands. Hands that lovingly used to constantly cook (from scratch) for friends and family. Hands that could dress and feed their body. Hands that could independently embark on solo road trips with only the objective of getting lost. These hands have been slowly distancing themselves the past few years, and I hate it.
I have a very rare and progressive muscle wasting disease (GNE Myopathy) that has been taking me to complete immobility since I was 15. I drew this illustration in 2013 to visually express the noticeable weakness and loss creeping throughout my upper body, hands and arms. What was, is lost in the wind, never to be again. This piece is titled, Please, Don’t Leave Me. The little girl (me) has thrown herself onto her hands with the plea…please…please, don’t take these hands, too.
Sometimes, I think the most simplified (or anger and outrage) message garners the most attention and following, but that’s not the kind of attention I want. I want to talk about the realities of loss. I want to talk about struggle, grace, triumph, human condition and more of what’s gray than black and white. I want to be real about disability, not fake or singular-only blaming ableism, as if, without it, only then would everything about disability be perfect. Maybe it is for certain levels of disability, but for my level, loss is a never ending game—and completely losing all independence, down to scratching yourself, is not easy.
But here we are. I’m doing my best to accept this impending destination as no treatment exists yet. I’m struggling with the knowledge this won’t end until it’s eaten up my body. I’m struggling with feeling more frail, in pain and weak every year. I’m struggling with wondering if I’ll die young. I’m struggling with my hands as I feel the weakness spreading. I’m struggling with knowing one day soon I’ll no longer be able to draw—another form of personal expression taken from me.
I’ve always held the security that at least I have my hands, my creativity, and I can write and do almost everything with these fingertips tapping furiously on my phone, but this is even changing. My next significant loss is the ability to draw and use my phone independently and freely.
Losing my hands is the milestone I’ve always dreaded. Slowly losing my legs was hard but it was nothing, nothing like losing hands. Society always thinks losing your legs is the most devastating thing that could ever happen, but losing your arms and hands is 1000% more difficult; especially for such a curious, creative person who expresses themselves physically.
I could never accurately express how much the milestone of one day completely losing these hands devastates me, and often I say these progressive milestones feel like the death of a dear loved one, except it happens over and over again.
Now my weakening hands are affecting how I interact with my phone; my lifeline and consolation through other milestones—at least, I can use my phone. My fingers are now unpredictable as they accidentally delete posts or comments or unfollow; something I’ve received angry messages for. I slowly sink into myself out of embarrassment because it feels like an attack, and yet they’re following a physically disabled person…(grace before attacking or shaming is always encouraged.)
In terms of trips and handling house and life affairs, I do all the work, planning, researching, booking and navigating from my phone. But this is becoming challenging. I write in bed on my back during nights of insomnia. I write in planes, trains and automobiles. I’m always writing thoughts, ideas or questions for humanity on my phone. Here, there and everywhere. It’s constant. But now this unbridled freedom is diminishing, too. Perhaps, this is why I write such long posts, because I know one day writing won’t be easy.
I have so much to say, such little time.
When I look at my hands I see languid sentiments of what once was. They look drained, always in pain. My pointer fingers no longer bend, and my index and pinky fingers are now weirdly curled.
It’s hard. My hands, our hands, they do so much. “I don’t need legs. I’m fine being in a wheelchair, if only I could be independent (like many disabled are) and it didn’t deteriorate my upper body”, I tell myself. But I don’t get to choose. It is as it is.
I don’t share an honest disabled perspective for pity or sadness. I want to show the full spectrum of this experience for those out there who struggle; those who are newly disabled searching for acceptance or those who’ve been disabled for a lifetime and still working on it. Even the strongest advocate has a days of disliking disability, so don’t be fooled and don’t feel guilty for honest feelings. There’s a difference between being proud of your disabled self, and struggling with all that comes with it. I don’t think we have to choose. My disposition behind the bravado of disability pride are tender moments we have to admit live beyond society or ableism.
When things get dark, I remember one of my greatest strengths is adaptation and working with what I have. Of course, I’m afraid, but I have a sense of self, and art, creativity and expression lives within me, not my limbs. My drawings are physically drawn, true, but what you’re really seeing is my true self splashed on a page. So I have faith that the core of me won’t deteriorate, and instead find new ways to express. It’s not my hands, it’s the person. This can’t be taken from me.
Disability has pushed me to move on and explore and find new loves. Disability has taught me life is about working with what you have, like a designer or engineer has to work within certain parameters and limitations of a project, while the process of adapting creates new opportunities.
The loss is never easy, and longing for what used to be never really goes away, but there is comfort in knowing there is a path forward for everything. This is the wonder of life: it can go so many different ways. So. Have faith in you. #kamdraws
*Feel free to #share, it helps my advocacy.
More ♿️ travels, art, mini memoirs, and disability and accessibility musings @ Instagram.com/kamredlawsk