There was a taped interview I did locally when my art was presented at the gallery last year.

I got dressed and showed up that day, sure that my hat and winter shawl were all in place. Camera pointed at me, mic catching my lilting voice, charm on fully – the interview went well. The videographer assured me he’d send a link once the clip was compiled.

When the link arrived some days later, I eagerly watched it, waiting for my segment to come on, wondering if my hat did sit just right or if I looked ok. Things too late to fix but hopeful that I looked just fine.

My section of the clip popped up and I watched on, my heart skipping beats while simultaneously sinking by the second. What I was not prepared for, was how one side of my face drooped a bit, how my lips pulled to the side when I spoke, how my face and voice had… changed.

Up until that point, I didn’t have a mirror above my sink. I spent 17 years washing my face from rote. Making sure to pass my wash cloth in my ears (rinse), on the corners of my nose (rinse), in each nostril (rinse), in the corner of my eyes (rinse), across my lips (done), with only a cursory look in the mirror of my bedroom, to ensue that nothing was out of place.

But to LOOK at myself?! I never stood in front of a mirror or camera long enough to look at my face or body… not what SMA was doing to them, not to see what SMA had made me look like now as an adult.

That video clip made me SEE myself. Inside, I wept when I saw how folks were seeing me. In my mind’s eye, I imagined my face as capable and animated as I had been in my early twenties, when my youthfulness was full of vanity and bravado.

Instead, I saw my face touched by SMA’s reach, robbing me of my straight smile, my nuanced facial expressions, a part of my light. I wept inside for weeks, afraid to look in the mirror and watch as SMA took more of me from Me, with no way to stop its thievery.

Telling Bestie of my lament, she suggested I deliberately look at my face, my body, mySelf to help match up the person I saw in the mirror and on the video clip with the person I envisioned I always was.

It was hard.

I didn’t want to look at what SMA had done to my face. Looking would make it real. I didn’t know if I was ready to admit that SMA was overtaking me, that it would best me, probably sooner than I would care to admit.

But I slowly did it. Day by day looking at Me for more minutes at a time, determined to love who I saw in that mirror and determined to meet the slow death that was transforming my face and body, in the eyes. It would take me, I would see it and I would love Me through it anyway.

And you know?! It worked. I’d look at myself in the mirror and marvel at being here, being my version of beautiful, being brave. I’d back up and look at my body, see how it sustained me, housed Me, took care of Me. How it’s beautiful and whole, as is. I began to love the small, round package of Me. And it felt great.

The rift between what I look like and what I thought I looked like to everyone began to close.

And then Spinraza happened.

I’ve been looking at my face these past few days and…

it’s more symmetrical. The left side doesn’t droop as much. My lower lip doesn’t pull to one side as much when I speak. My voice is miles clearer.

I thought these things were just my imagination. My hopeful, eternal optimist eyes seeing what they wanted to see. But my case manager, who only gets to see me once every three months, remarked how my face was more…

She made these gestures with her hands, indicating how my cheeks were once fallow and how now, they’re plump and plentiful. How my lips were more closed when I spoke, how my face just looks… more alive.

My morning aide remarked today how my chin and face seem slimmer, how my neck and shoulders seem smaller, how my arms aren’t as flabby or big. Changes I’ve been telling myself aren’t really real or are only visible to me.

But they notice them too.

They’ve noticed how my body has changed over these three months. Spinraza has made the little muscles in my face, upper lip, chin that began their long slumber, to wake up. It’s whispered to my biceps, that the time is not now. It’s sang a love song to the long muscles in my glorious thighs, that there’s a bit more time yet.

Spinraza is making me love this body in new ways. It’s both fascinating and frightening, these changes.


#DisabledChronicles #SpinrazaStrong #SMA #SMAShit #TrueStoriesOf2019 #ThisBody