Last episode of What’s The Matter With Me? Episode 27 wasn’t very focused and I could have explained myself and foregrounded what is going on with my Multiple Sclerosis disability more effectively. The title of this podcast is What’s The Matter With Me? after all. I resolve to run things a little more by-the-book this year. For this episode, at least.
Crowd outside Cafe Oto in Dalston, East London
Last episode, I reviewed Marshall Allen’s Volcano Quartet CD Volcano Swing, a live performance at the BBC in London, where he was in town for three nights at Cafe Oto. Listener Chris lives there and wrote in to let me know about the location, in Dalston, East London, and some live shows he had seen there. It sounds groovy and I hope to check it out myself someday.
Never give up
I can have a bad episode. A terrible episode. Ghastly. But I won’t give up or cede an inch in any direction.
I discussed in Episode 25 as well as Episode 4 that I won’t give up. The pressure to give in and let go of the rope and drown in my disability is extreme. Multiple sclerosis is suffocating and pervasive. I have been dumped and it felt very bad — I bet that anybody having a hard time with something feels the same.
I called my neurologist to request help with tapering down Gabapentin, they said I’d get a call-back in 24-48 hours, but they called me back in about an hour. I was concerned because I had adjusting my own dosage without any guidance, which is bad practice. The nurse told me that my dosages had been fine, and outlined the boundaries for my pain meds. My dosage is back to normal, and I am not in pain.
No-tie Shoelaces and shoelace replacements
I’ve bit the bullet and decided to get rid of my laced shoes. I’ve got some no-tie shoelaces which turn my shoe into slip-ons. They’re working OK but my shoe feels like it might fall off. I’m glad to be done with shoelaces because they came untied and I wouldn’t retie them. I’ve got some shoelace replacements in the mail. I’ll go over them in an upcoming episode.
Disability Visibility Project
Disabilty Visibility Project Alice Wong icon
Disability Visibility Project is a platform for creating, sharing, and amplifying disabled voices created by disabled activist Alice Wong. I said in Episode 25 that in 2018 I would bring new voices to the podcast and the Disability Visibility Project is part of that effort.
Interrupting the Uninterruptible
I hosted the Blues Collective with Jack Tar from 10am to 2pm on KFJC yesterday,. For the first hour, Jack plays the music and runs the mixing board while I sit below in the interview area. At 11, we switch places, and I run the board and he is below on the mic. We do it again at noon and at one.
While it was my time to run the board, I played the same song twice. I put my foot on the wrong place and unplugged whata the engineer told me was the “Uninterruptible Power Supply” — it turned off the CD players, the lights — pretty much the entire station! I ferlt like I lacked focus or was fatigued, and I messed up the show.
Everybody feels that way sometimes. “Uninterruptible”? All I had to do was unplug it.
New Year’s Resolution
Talk less, act more. This podcast is a bit of both. Don’t think too hard about it.
https://whatsthematterwithme.org/wp-content/uploads/2018/01/IMG_20171227_084108_366.jpg14791479Johnhttps://whatsthematterwithme.org/wp-content/uploads/2017/11/cropped-icons.pngJohn2018-01-03 21:37:552018-01-08 18:51:40#28: New Year