I’ve been done with breakfast for about two hours, but I’m still sitting here. The air in my room is heavy with the scent of tuberose and ylang ylang. The blazing warm light of the candle, shining where I feel I can’t. I’m trying to convince myself of all sorts of things this morning: – that I can get some coloring book work done -that I can get some writing done -that I can enter that intimate space of Study
I take near scalding showers. If the water don’t make my skin red and prickle – I don’t want or need it in my life. The ‘safe’ setting for most water heaters is B – warm enough to do something but safe enough not to burn children. The one at the house is set between C and D – well past the safety. Any children visiting my house, must use the waters with parental supervision. My Aides have snatched their
I haven’t spoken in weeks. Outside of the idle prattle with my Aides, I’ve been pretty silent. On social media and in real life. Things have been hard. Realizations sobering. Life has been feeling very short, finite. But today, I need to do some talking, cause this Village… Having to take care of my regular medical needs during this pandemic has been a special kind of hell. Last week was particularly difficult because I suspect the added stress of knowing
My kidneys decided that the 18 of June would not be a good day for my next Spinraza injection. This, despite my admittedly questionable attempt at hydrating in preparation for it. My urine, though average looking in the sample cup that I zip bagged and cradled in my lap on the way to the lab, carried a protein payload that would choke a horse. For the second time since being aware of and keeping track of protein to creatinine levels,
He was late. I hung around the TeleHealth conference room 20 minutes past my 3:30pm appointment. I checked if I had connected correctly, followed all the procedures… and I had. It wasn’t me, it was Him. So I waited some more. A very bored but familiar lead doctor popped up on my screen, followed by a very quiet secondary Fellow I had never met. We exchanged pleasantries and I was informed the Neurologist (in charge of the SMA Clinic overseeing
Hi, my name is Sandra and so… this blog will be about my writings, my existence as a writer, my living as a disabled person, my thoughts on being a creative and my book and self publishing exploits. But mainly? It will be about my writings.
Disabled Chronicles, No.2g 
Pandemic 
Disabled Chronicles, No. 69053389432794 
Disabled Chronicles, COVID 19 Edition, No. 12 
Disabled Chronicles, No. 2f
Recent Comments