On the heels of some pretty awful news two weeks ago, I received an email from someone advising me that they were curating a digital art show and wanted to invite me to participate. I wanted to ignore it. As a matter of fact, when I received a similar email from the same said person a week prior, I did in fact ignore it. I had gotten my hopes up once before on someone who was ‘interested’ in showcasing my
She barely whispers “Good Morning” when she comes into my room. She thinks I may be asleep. Most times though, as soon as her key slips through the deadbolt, I am instantly awake. My hearing that acute, my alertness that intense. I let her think she has woken me up, using those few sweet minutes to ready my mind because I know that I take time. She always asks how I spent the night. I actually stop and think about
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 call Nephew into my room, greet him and ask if he can help me. He nods and waits. I take as deep a breath as I can and rattle off a list of medications I need him to pour, shake, spray and give me. He used to categorically object to my use of so much medication in such a short amount of time but he no longer questions. He trusts the method to my madness, backed, I suspect solely