68: Solo

Well, it’s almost like the old days again. Two posts in a week. This will be a short one, but there’s a few things that felt timely to discuss.

I had my follow up visit, post infusion 39 with my prescribing neurologist. I was dreading it. Despite the amount of conflict I engage in, both as an advocate for myself and others, I really don’t enjoy personal one-on-one conflicts. However, my fears were not necessary. While gaining no real headway, empirically, I was at the very least listened to and not dismissed. While he still does not see the need for a follow up PET scan, he has agreed to submit to my insurance to see if they will cover it. I fear he will not imply the necessity needed to get the insurance to comply, but at least he didn’t fight me. He also, while not saying he thought it was a great idea, was supportive of my attempting the trial route instead of continuing on with monthly infusions, and even offered to help find some. So that was huge for him. At this point, I’ve agreed to accept the monthly infusions until I decide to stop, which seems like the prudent way to continue. Overall I call it positive. I spent more time with him than ever before - although it still wasn’t much.

Yesterday, I did my first solo gig, and while in general, it went really well, it was also a learning experience for me. I started it with a book reading, which I think, in retrospect, was a mistake. I didn’t “own” the audience yet, and because when one reads, there is no eye contact and there is a lack of fluidity, it was a stifled start. Book readings are good, and I will do them, but in context. With all that said, I did a whole hour by myself, and people, at the end, seemed to really take something from it. It wasn’t a huge crowd - maybe 15 people, but those that were there were engaged. There were some good questions, and off camera, I spoke with a newly diagnosed woman and her sister who was caretaking her. I hope they end up reading this, and I hope they stay in touch. They have a rough road ahead of them, as did/do we all.

So here’s the video of the talk - I finally bought a direct mic to the camera so finally, you can hear the videos well and there is no need for subtitles. I’m interested, because it was my first, in what you think I should alter besides the placement of the reading.

I’m now getting geared up to sit on a panel at the State House in my advocate guise as mentioned in my last post. That will be fun. I really like the panel format as I can capitalize on what others say rather than just spewing my own verbal diarrhea on my own.

Last night Wendy and I had the privilege of seeing Sue Foley, a Canadian guitar player do her solo show in honor of the trailblazing women pioneers of the guitar. It was a master class. She’s a phenomenal player, and the repertoire, consisting of covers of songs by Memphis Minnie, Sister Rosetta Tharpe, Maybelle Carter and more was great. Sue kept up a between song patter, telling the stories and history behind the songs and artists, while noodling on her guitar. And her noodling itself was phenomenal. Here’s a little teaser: Last Kind Words Blues (Geeshie Wiley) – Live | Sue Foley – One Guitar Woman and another: Sue Foley - “Oh Babe It Ain’t No Lie”/“In My Girlish Days”/“Maybelle’s Guitar” Great stuff. She’s promised to come back to town with her full band and we will be there for certain.

That’s it for this short update. Thanks for tuning in!

Sean