I don’t write about my main condition often. In fact, I barely mention it’s name in real life (Kugelburg-Welander Syndrome, Spinal Muscular Atrophy (SMA), Type 3 or just SMA3). Besides the naming of it not doing much to manage or change it’s effects on me, no one knows WHAT all its name implies or what its effects on me are. So this usually has me launching into a super simple explanation of how this syndrome is my muscles’ inability to
For the past month, I have been creating… but not like you’d think. I’ve been giving answers to questions on paperwork to create means to clear up my backyard, still. I’ve been making phone calls, creating and rekindling connections. I’ve been taking inventory of our kitchen, creating a situation where ‘food insecure’ and our home no longer appear in the same sentence… except for this one, in words only. I’ve been making boundaries, creating safe spaces where I can rest.
The tops of my feet looked like freshly baked loaves of bread: sun-browned and puffy. Rather inviting if they were actual loaves of bread instead of feet. It was day five of no electricity, thus no AC and the house was broiling in the mid-day sun. Penelope The Dog, freshly shaven and splayed out on the cool tile floor beside me, shared the barely cool breeze that made it’s way through the front door and out the back door.
That one day, you head to your electrologist appointment and what is normally a very painful but necessary part of your life to keep you from looking like a mama bear, has you sitting there asking her if the machine is turned on cause you’re not feeling any of the customary bee sting-like pin pricks that you’ve come to expect. Two machines and three needles later, she has confirmed that indeed the machine(s) are on and working,
I don’t remember what her face looks like. I remember that she had brown skin like mine, that she was wiry, where my own Mom had not been and that she had this boundless energy that I could not for the life of my five year old self, understand. What her sole mission seemed to be though, was to make me walk from one end of the hallway to the next, despite myself. At first it seemed simple enough: she