Update on the hearing loss situation

I really appreciate the message and that is a fantastic idea for seeking out some lesser known avenues to explore. Also dig your ideas around non-audio music!! I've had a similar thought about the LEDs one when I've got a good dancey lights patch going on the big modular :D

Andrew Huang

WOW, NICE JUMPER! In all seriousness though super inspiring video! Well done! Also, I call dibs on being in one of those open collab projects! It really speaks to me that you care so much about getting the community involved and I think that's something creators lose touch with as they grow so it's awesome to see you still care!

I have two thoughts, a long one and a short one. The longer one: I don't know the detailed specifics of your hearing issue, but it really does sound more like a neurological issue than a physical one. I'm a disabled musician with medically puzzling conditions (ME/CFS = chronic pain/fatigue, which is actually a bunch of complex, body-wide multi-system issues) and let me tell you: regular doctors, even experts like rheumatologists, are often completely uninformed. I've learnt a *lot* from the disabled community, and there are patient-led research projects, advocacy and sharing of experiences. It's been the same with ADHD and autism, where the disabled and neurodiverse community is often *decades* ahead of the pathologizing, stigmatizing and limiting frameworks the average psych has been taught to see us from. (A friend who's an actual doctor finally figured out his chronic fatigue/pain issue was caused by craniocervical instability, after three years of life-altering symptoms, not thanks to the experts he consulted but because I had been reading about similar cases and recognized the symptoms. Which is shocking but also unsurprising to me at this point. 🙃) All of this to say: if you haven't pursued this avenue yet, I recommend sharing details about your process (what tests you've had, comorbidities, etc. etc.) or, if you'd rather not be so public, anonimously interacting with the disabled community online. You might be surprised and find new leads your doctors didn't know about! I might be able to think of a few places to start, if you're interested? Also, a bunch of us already follow you, lmao. And now for the short thought, which I'm sure has been tackled by avant-garde and Deaf composers: does music necessarily require sound? Can you write a piece of music that is not meant to be listened to? Can you write a rhythm piece for an ensemble of LED lights, meant to be perceived purely through sight but which still makes your brain feel groovy? Can you write a piece of music for deaf people where the only aesthetic principle is how vibrations are felt, in the physical/mechanical sense? Etc. As always, thanks for being inspiring. And: I see the work you do, taking all of these experiences and relentlessly trying to find the light in them. It might feel like it's the only option in the end, but you still deserve a big hug and to be told that we SEE you making that effort! It is NOT easy! 💖💖💖

Félix Marqués