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.
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
My Peers are in their late 30s/early 40s. Some have been to and graduated college or University. Some of them are married. Some have children. Many of them have careers that they either love or hate. All of them are making it through the best they can. And I am on the outside of their experiences, looking in, wondering what normal would feel like. Some time ago one of my peers posted how their Parent had a cold and that
In the midst of a morning full of fuckery that my sister and brother are bailing me out of… Me: (To Sister) If you wash my face, I’ll brush my teeth and I’ll be able to get done faster. Then you can get a yogurt for me so I won’t leave on an empty stomach. Sister: Okay, stand close to the bathroom door… (Gets washcloth and puts soap on it while I park like 6 feet