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Hi Friend!

How’d you spend your stimulus? Mine just arrived. The SSA took way too long to deliver information to the IRS, so elderly and disabled people like me were among the last to get paid, but it’s here now! I’m getting my bass fixed up and putting a big chunk in savings.

This kid & his bass. (mid-aughts, Charm City Art Space in Baltimore, photographer unknown!)

Strange as it may sound, I’ve been reflecting on how lucky I am. Consciously choosing to be grateful provides all sorts of physical and mental health benefits. It doesn’t require ignoring or dismissing negative circumstances–my pragmatic personality would never agree to that. You can acknowledge the hard stuff and still look for the good. It gets easier with practice, so let’s give it a shot!

Musically, I’m so fortunate. It’s physically harder for me to record now, but I have easy access to a tape machine, four track, iPad, and laptop; and I’ve got a decent selection of microphones too. It’s harder to play now, but I’ve got so many instruments–guitars and drums; keyboards and drum machines; plenty of digital instruments. If I need something else, I have generous friends who’ve offered to lend all sorts of gear.

Brendan just upgraded my MPC and put fresh white pads on it, so that’s my current focus. Any sound you can imagine can be loaded onto a sampler like an MPC and then played like an instrument. Herbie Hancock does a nice job explaining sampling on Sesame Street in 1983 (he’s using a CMI Fairlight, which cost $32,000 at the time; it’s currently available as a $10 iPad app!). Sampling is central to my musical collaboration this month, which involves taking some pretty unusual noises and making music out of them.

Like fresh little marshmallows!

Speaking of unusual noises, mere hours after I sent my previous health update, I ran into a bizarre situation. I had a bad reaction to a drug I’m no longer taking, and it triggered my aphasia. Basically, I couldn’t speak–at best, I could squeak out a few clipped phrases, with a heavy stutter.

This is not a new symptom for me. I’ve had intermittent bouts of aphasia for as long as I’ve had migraines–it’s technically an aura. A migraine aura is usually a visual distortion that precedes a headache, but in rare cases, it can interfere with your use of language. It’s supposed to be tied directly to a migraine, but occasionally, it hits me at random. I once called Brendan on the phone, and when he picked up, I couldn’t respond!

Normally, it lasts a few hours, tops. But this time? Aphasia lasted five days solid. My doctors were alarmed, worried I had a stroke. But it wasn’t a stroke, it was a “persistent aura without migraine.” A rarity among rarities! More simply, I just have a bunch of weird neurological symptoms that get triggered pretty easily, and sometimes they stick around for a while. There’s not really an adequate medical term for that.

But rather than dwell on my ambiguously broken brain, let’s get another hit of gratitude. How am I grateful for my health situation?

Many ME/CFS folks can’t get to a specialist, but because of where I live, and because of Brendan’s insurance and his ability to drive me, I literally have access to the best specialists in the world. I’ve seen physicians in GA, NY, PA, VA, MD, and DC. I’ve had some awful healthcare experiences in the past, but unlike most people with ME/CFS, my current team of doctors all take me seriously and work hard to give me the best care.

The significance of that becomes clear when you take even a brief look at chronic illness forums online. The number and depth of healthcare horror stories is stunning. Especially from women and people of color.

Invisible diseases that primarily affect women–like migraines and CFS–typically don’t receive much funding. Studies show that even today, women often don’t get the same level of medical care that men receive, especially if it involves cardiac problems or pain issues.

For Black Americans, it’s even worse. A 2016 study found half of all white med students believed lies about Black biology–such as, “Black people’s nerve-endings are less sensitive than White people’s nerve-endings.” The white students believed Black people felt less pain as a result (nonwhite med students did not treat Black pain differently). For years after ME/CFS was identified, Black people were told they couldn’t get it, and they were left without proper diagnoses.

So, I’m lucky. I’m trying to remember that. One of the places I’m especially lucky to have access to is Jefferson Headache Center in Philadelphia, and I’ll actually be going back there for a week in May. I’ll get an IV of Lidocaine, which substantially reduced my headaches for several weeks last year, as well as an IV of DHE, which should help the effects last even longer. My previous visit was pretty miserable, but we learned a few things that should hopefully make this trip more bearable. I’m not eager for another PICC line, but I’m trying to focus on the benefits.

The techniques at Jefferson are cutting edge medicine, much like the Abilify I take for CFS. The headache psychiatrist at Jefferson also works at the edge of the field. He prescribed Pristiq for me–an antidepressant, which sometimes reduces migraines. I think it actually has reduced them a bit, and Brendan says I’m less grumpy. Bonus!

But what does a tape machine *really* sound like?

For anyone curious, I recently revamped the paid tiers on my Patreon, and I’m working hard (too hard?) to bring rad sounds & collaborations to my supporters. This month features a demo from a secret punk band you’ve never heard of and a tape machine being played as an instrument. Never boring!


PS If you’re still catching up on my health story, here’s the Cliff Notes. If you want these updates in your inbox, head to my profile page, scroll past the subscription levels, & click Follow (it’s free!). If you know anyone who might be interested, please share!

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