Chronic Illness, Disability, Making Music

While a search “disable” gets lots of hits here for obvious reasons, I don’t see much discussion of chronic illness and disability.

I have a chronic illness that has and is transforming my relationship to music-making. I imagine I’m not the only one.

Do you have a disability or chronic illness that affects or shapes how you make music? Want to talk about it? How about here?

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I have a chronic illness which makes my energy levels extremely unpredictable, but since it makes me unable to work, it has actually kind of helped my music process.
While many days it prevents me from making music, it also frees me up to spend all day on music on the days that I am able, as not working lets me sit down at my modular as soon as inspiration strikes.
It is also partly what lead me to electronic music. I have fallen off playing many instruments before because they require physical movement, posture, and a certain amount dyscomfort to play. I came to modular because slumping Infront of a small box and twisting knobs to create generative melodies is much, much more doable. Chronic illness has also prompted me to keep my system fairly small and self contained, and those limits I find also really helps me creatively!

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My music is impacted pretty heavily by hearing loss. As a child I had malignant tumors in my inner right ear that went undiagnosed for long enough that they destroyed the little bones in there. I had two surgeries to remove the tumors and rebuild the inside of my ear, but all told I ended up with significant hearing loss in the right ear. It’s been a few years since I tested it but there’s a dropoff in perceived volume of up to 40dB once tones get above a few hundred Hertz, compared to my left ear, and some frequencies are completely absent.

It often makes me nervous and hesitant about making music, especially when mixing, since I know it won’t sound quite the same to other people. It used to bother me much more, and I convinced myself to quit entirely for about 4 years because of it. I’ve steadily grown to accept it more, though. I think it’s the main reason why I’m drawn to bassier mixes, and I like putting melodies in the lower registers and working in mono a lot of the time. It’s also very weird to put headphones on backwards and listen to other peoples’ music I like, as sounds I never knew were there will emerge in the left ear.

Thankfully it doesn’t have a huge impact on the rest of my life, but I’ve always been slightly annoyed that music is the artform I’m most drawn to.

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This is going to sound weird (and maybe I’m projecting a bit), but sometimes I think hearing is overrated in music? Does not stop people like Evelyn Glennie from making music.

I always take comfort in the fact that Emerson Moser, a senior crayon maker at Crayola, was actually blue-green colorblind.

Also stumbled across this Theodore Roosevelt Quote today: “Do what you can, with what you have, where you are.”

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Interesting topic. I’ve got a life limiting (as in length) chronic condition.

I haven’t really thought about how it impacts my music making until now.

I think perhaps I’ve arranged my life in greater accordance with things that bring me immediate joy.

This has expressed itself in some rather impulsive purchases and also allowing myself to bathe in music indefinitely when I find things which match my mood.

It’s also the early days for me relating to my condition so I know it’s going to change over time.

This thread might also be a good place to raise the existence of different models of disability. The two most common ones are the medical and social.

Medical: focuses on the impairment or condition, sees it as a problem that can be solved/cured/treated. People have disabilities.

Social: people are disabled by society and the way it is organised. Disabled people are discriminated against. Stairs and stares.

Also worth noting that language around disability carries different meanings in the UK and North America because of the different histories of activism in these places.

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My first thought when I saw those subwoofer chairs gamers use sometimes was wondering if anyone had made music for just bass frequencies meant to be felt more than heard.

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Thanks for the replies so far. I agree that hearing may be overrated. There are elaborate Deaf musical cultures—love the story of The Deaf Club here, and there’s a great chapter in What can a Body Do about Gallaudet University dorms. Also I think may musicians have acquired hearing differences as well, and at least one famous artist told me he can’t hear aspects of mixes he did ten years ago.

Also big props for pointing out that language on disability is regional—and hotly contested! Some recent writers like Allison Kafer have tried to thread the needle between medical and social models—disability is “real” in the sense that eg, pain is real. At the same time, it’s social. But environments are disabling, as is discrimination. Some “disabilities” like facial differences are just stigma.

In my case, I’ve “gained” some pain and fatigue (and a bunch of other stuff) due to treatments for a chronic condition, one that also could shorten my life, though who knows.

So I agree on not waiting around to get what I want (I’m lucky to have the means). I’ve had to change what and how I play. Hand hypersensitivity has transformed my relationship to bass and guitar and led me to gloves and touchstyle instruments. Fatigue means nighttime practice generally doesn’t happen, though apparently typing on my couch is fine…

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The ‘hair dance’ vids on YouTube where there is soooo much bass in a car that the passenger’s hair literally dances is a bass-subculture that this reminds me of:)

That’s the closest thing to pron I’ve seen on lines…

I hope that’s not built into the drivers seat…

(please include at least a paragraph of writing to facilitate discussion)

Hi. I’ve been on this forum for awhile, but haven’t done much. Sort of got out of the habit of forums when a couple old favorites shut down. I would like some help if anyone can provide any at all.

I was born with synesthesia and it was never a problem. It’s not really a problem now, but it’s far more… interesting and sort of alarming now. I had a TBI five years ago and things have gone really odd in the last three years or so. Of course, there have been other factors. Like the unreality of the world these days. The shapes and colors I always sensed accompanying sound sort of started… crystallizing into living things with emotional intent. Crazy right? It was like the sounds that triggered the images had come alive. So, I just turn on my DAW, arm a track and let it out. Then I do it on another and another and another track until it’s done. I feel more like a scribe than a creator. I’ve heard about this, but experiencing it is a different thing. It’s sort of difficult to deal with. Even after three years of constant daily output. It’s all first takes, in most cases. there are a few more formed, structured guitar pieces, but even those sort of fell together by themselves.

So… when I had a brain injury, things didn’t get weird right away. Then they did. I started recording piles and piles of music. And it was all far more interesting than I had done before. To me. And to my musical partner in Egret Zero, a forum member, Suss Musik. I like what we do together. I like my solo music, but I am having an impossible time getting anyone else in my life to listen and then talk to me about it.

I do a few musical things. I’ve just started releasing music, finally after a half century on this planet, and it’s at a time when there is so much going on in people’s lives, or they are so addicted to video games or whatever that they can’t break away to do anything else. And I’m talking about previously productive artists.

I feel like I’m living in a simulation, partially from the brain injury… oh and covid-19 made my mind much worse. So despite a couple of people saying they love my music, and a few who like it, but “it’s not their thing” , I have no real support system, artistically. It’s making my condition worse.
I need to get one going, so I’m trying the best I can. Just like with my music and art… and remembering my name.

I don’t know if this is the place to find a group of people who might have enough interest to investigate, and give a very confused person some feedback. It may do nothing to assuage my concern that the stuff I am proudly releasing, is what everyone does, and then immediately throws in the trash. I fear that it’s sort of like proudly showing someone your poop.

This does not say anything about how much I trust and treasure Suss Musik. He’s a brilliant, criminally unknown artist, and an amazing person. Brains and brain injuries are weird and often the symptoms make no logical sense. He tries. He helps. And makes great music too.

I do sort of broken new age, Fahey influenced, Hedges without all of the technical stuff. Fripp Frith and Frisell inspired stuff too. Ambient frippertronics sort of stuff. And lots of other stuff. From Modular noise to simple songs.

If you can, If you managed to stick with this long post, Check out my releases that I’ve put up in the last week and if you have any feedback, let me know. Also, if there are any musicians or artists you know with either. a brain injury or synesthesia, or both, tell me about them too. This is very embarrassing. Apologies if I’ve made anyone uncomfortable. Thank you very much.
Thanks for your help.

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Brains are weird :brain: your music’s gorgeoussss

My partner’s also a musician/synesthesiac/TBI survivor. He’s emphasized how unsettling it is to have a brain that thinks differently post-injury. Like moment-to-moment, there’s a different embodiment of thought, a new creature in your skull. And the old embodiment is missing, which lends a weight of grief to overall recovery.

Take care of yourself <3 Honest scribework is exhausting, even if you don’t feel it in your body right away

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Random thoughts in response, barely awake, unfiltered but well intended…

Very recently I was thinking about my own aspirations for guitar and came to exactly your “Fripp, Frith and Frisell”. Seeing this blew my mind.

Next, my own experience very much tracks the idea that we are all in some kind of simulation or collective hallucination. What feels like the end of the world that we seem to be going through can be viewed metaphysically as a transitional period in which we collectively awaken or collectively decline into chaos. This is an ancient idea, which many people are experiencing now.

Next, despite the fact that creating music or other art requires work, often exhausting and devoted work, I am convinced that the source of the work is not us, individually. Rather, we are channels for a consciousness of which each of us is a tiny reflection. Again, an ancient idea…

I hope you can come to experience your creative outflow as a kind of blessing, as it clearly wants you to give expression to it. And there will definitely be folks for whom it is deeply resonant. Just do your best to keep the channel open and let out as much as you can as purely as you can to the extent you can tolerate it.

Lastly, and this is not in response to anything specific you said, but I would try to avoid thinking about marketing or monetizing it. Not that those are inherently wrong, but they are distractions from the real work, and you are being called strongly to the real work, and that other stuff will happen as it should, or not. It doesn’t matter in the end.

I hope none of this is upsetting or offensive. I’m replying from the same place of spontaneous creativity…

I’m happy to chat if you like, pm me…

Edit: just starting to listen and already love what I’m hearing :pray:t2::pray:t2::pray:t2:

Ed

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Glad to see this thread up and happening again. @Mister_Niles – the music is quite lovely. Seems like you might be well received in the whole ambient guitar scene.

It terms of music pouring out, why not just let it happen? I have several friends who are very prolific improvisers and release tons of stuff on Bandcamp as a result. Some have developed serious followings; others not, but as @eblomquist said, why worry about “monetization” if you don’t have to?

I can’t relate to a brain injury, but I am on drugs that cause me to be more or less constantly fatigued, and my voice is constantly changing as well as a result of a paralyzed vocal cord. So I am not living in a hallucination but I definitely feel a split between “me” and my body (but also so much closer to my body). I think it’s kind of a standard thing for those of us with “acquired” disabilities (as opposed to being born different).

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@ZacharyTalis : Thank you. I accidentally deleted the comment I left for you, attempting to edit it to combine posts. So here it is again: What you said was wonderful.
Thank you.
I wept.
I really needed it.

Just feeling understood, by you, via your experience with your partner, for the first time since the accident, was huge. Even my closest friend in the world… and we are very close. Many years ago, we considered trying to get married, even though we don’t have a romantic relationship. We’re just in love. Like all best friend should be. Family life has made us communicate less, but we are still as close as ever.
Even he couldn’t understand what I’m going through. And he’s an insightful super-genius who knows me better than anyone else.

I would love to hear your partner’s music if any is out there to be heard. I would also like to know if he had to re-invent music for himself. I not only had to limit structural complexity, and my color palette (at first) but I have had to limit the harmonic and melodic content of my music, by creating a limited set of parameters and allowable chord changes. All chord changes are based on the basic harmonic series notes. I do use many, many alternate tunings, and I document them in the song, not only as a courtesy to other musicians who might like to try and play my pieces, but so I can remember the tuning. I could write it down, but Id’ forget I’d written it down, or I’d lose it. This way, the tuning is always right in the song. Most of my acoustic pieces do that.
It also echoes something I heard about Indian classical music… I think, or folk music from somewhere else… I think it’s raga. The melody is introduced, like a head in jazz. I guess I got mixed up and thought the announced the tuning, because of the tanpura. But as one of the things that make music possible for me, I do that in a lot of my songs. Mostly as a reference, but it has become a sort of signature. I find it a comforting, familiar thing in my music. Other people may not. I need to remember that :slight_smile: Thanks again. So much.

@eblomquist Thank you Ed. Yeah, it sure sounds like you and I think about certain things in similar ways. I don’t think we have any idea what process we are actually a part of, or processes. I personally suspect, and this is from ketamine treatments (which I could only get one round of @ 5k, thank you kind benefactor) for constant suicidal thoughts. Man that stuff works. 5k for 100mg. I hear it’s a hundred bucks a gram on the street, but I don’t go to raves or anything. Sorry, got lost. I personally suspect we are living in a closed system. Not the only one. Nature doesn’t do things in singles much… maybe? But I saw it, and it was a little bit cheese in the representation. A taoist symbol. What appeared to be a fluid, swirling in this fluid dynamic system. Little, fine tendrils from the white side, slipping into the swirling canals left by the black tendrils shooting into the white side, only to be processed, brought to the center dot in white or black, where it was held, to slowly be fed, intentionally back into the side where it belongs most of the time. I saw this and understood that the loss of ego was becoming “god” or, rejoining the gestalt. The big "all’ that psychedelic explorers speak of. I suspected at that moment that consciousness as an emergent property of matter conglomerations that meet certain parameters was always come back together. Of course they can be put together in infinite ways. So this Wolfgang person will be back after death. Eventually. Trillions of years later? And I also understood at that moment, that what we call fiction or art or music, is all real, and probably conscious too, like many inanimate objects. Maybe Godley & Creme were right to Pity Inanimate Objects :slight_smile: We are talking about in the moment. I don’t “believe” this as a fact. I don’t subscribe to strict belief very much. But in that moment, I was fully confident that I had seen the truth. Psychedelic duh moment, I suppose.
At the very least it’s an interesting ideas. If you read a book that is so rich that you feel you could live there, is that because it’s an archetype or something like that, and it happens all the time, and some of us have been a tree on Arrakis or Charlie, in the chocolate factory? We tell each other these stories, play each other these songs, to remind ourselves, or just because it’s a deep memory. Sorry for going on. Insecurity is a big part of this injury. 53 and I feel as insecure as a ninth grader.

Thank you so, so much for reminding me about how I feel about trying to monetize music. This is the first time I’ve ever done it… other than making beer money at gigs… and opening a recording studio… and a record store… and being a regional A&R rep for Columbia records, I’ve never done anything commercial with music. Not my own.
Not to mention my wife has all of her gold and platinum records hanging in the house. I guess I have it better than her. She can’t stand to even listen to music much anymore, from being in that part of it.

So yeah. I’m only doing it out of desperation. I need medical help and any little bit of money… probably wouldn’t be enough… so.

My life has been approximately 8 x more than decimated. Or it feels that way. And go fund me stuff makes me feel gross to even consider. But YOU, are correct. I need to stop that crap. Thankfully I’ve only been at it for a month or so. It’s injuring me. I can feel it. Feeling actively ignored hurts my brain even though I know it’s an illusion. I know these platforms (band camp, instagram etc) have millions of people on them, and they won’t see it. Also, I talk a lot. Most people have been trained to despise anything that is more than a soundbite. And in the U.,S., being so busy you are near death, is a badge of honor, so everyone is playing busy, because they believe they are, or need to be seen as that to be a valid citizen.

I cannot tell you how much I appreciate your comment. It made me want to be on this board and engage with people. That’s big gift. Thanks. Everyone on here so far has been very kind, and I need a place like that. Full of interesting and interested people, who are nice and want to share ideas, instead of trying to be the most vicious person on the net that say.Thank you Ed. Yeah, it sure sounds like you and I think about certain things in similar ways. I don’t think we have any idea what process we are actually a part of, or processes. I personally suspect, and this is from ketamine treatments (which I could only get one round of @ 5k, thank you kind benefactor) for constant suicidal thoughts. Man that stuff works. 5k for 100mg. I hear it’s a hundred bucks a gram on the street, but I don’t go to raves or anything. Sorry, got lost. I personally suspect we are living in a closed system. Not the only one. Nature doesn’t do things in singles much… maybe? But I saw it, and it was a little bit cheese in the representation. A taoist symbol. What appeared to be a fluid, swirling in this fluid dynamic system. Little, fine tendrils from the white side, slipping into the swirling canals left by the black tendrils shooting into the white side, only to be processed, brought to the center dot in white or black, where it was held, to slowly be fed, intentionally back into the side where it belongs most of the time. I saw this and understood that the loss of ego was becoming “god” or, rejoining the gestalt. The big "all’ that psychedelic explorers speak of. I suspected at that moment that consciousness as an emergent property of matter conglomerations that meet certain parameters was always come back together. Of course they can be put together in infinite ways. So this Wolfgang person will be back after death. Eventually. Trillions of years later? And I also understood at that moment, that what we call fiction or art or music, is all real, and probably conscious too, like many inanimate objects. Maybe Godley & Creme were right to Pity Inanimate Objects :slight_smile: We are talking about in the moment. I don’t “believe” this as a fact. I don’t subscribe to strict belief very much. But in that moment, I was fully confident that I had seen the truth. Psychedelic duh moment, I suppose.
At the very least it’s an interesting ideas. If you read a book that is so rich that you feel you could live there, is that because it’s an archetype or something like that, and it happens all the time, and some of us have been a tree on Arrakis or Charlie, in the chocolate factory? We tell each other these stories, play each other these songs, to remind ourselves, or just because it’s a deep memory. Sorry for going on. Insecurity is a big part of this injury. 53 and I feel as insecure as a ninth grader.

Thank you so, so much for reminding me about how I feel about trying to monetize music. This is the first time I’ve ever done it… other than making beer money at gigs… and opening a recording studio… and a record store… and being a regional A&R rep for Columbia records, I’ve never done anything commercial with music. Not my own.
Not to mention my wife has all of her gold and platinum records hanging in the house. I guess I have it better than her. She can’t stand to even listen to music much anymore, from being in that part of it.

So yeah. I’m only doing it out of desperation. I need medical help and any little bit of money… probably wouldn’t be enough… so.

My life has been approximately 8 x more than decimated. Or it feels that way. And go fund me stuff makes me feel gross to even consider. But YOU, are correct. I need to stop that crap. Thankfully I’ve only been at it for a month or so. It’s injuring me. I can feel it. Feeling actively ignored hurts my brain even though I know it’s an illusion. I know these platforms (band camp, instagram etc) have millions of people on them, and they won’t see it. Also, I talk a lot. Most people have been trained to despise anything that is more than a soundbite. And in the U.,S., being so busy you are near death, is a badge of honor, so everyone is playing busy, because they believe they are, or need to be seen as that to be a valid citizen.

I cannot tell you how much I appreciate your comment. It made me want to be on this board and engage with people. That’s big gift. Thanks.
Everyone on here so far has been very kind, and I need a place like that. Full of interesting and interested people, who are nice and want to share ideas, instead of trying to be the most vicious person on the net that day, which seems to be the vibe on most platforms these days. Thanks again.

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Just played a few of your tracks, I experienced them as enchanting, delicate, multifaceted and delightful.

If I have any feedback it’s not about the music but perhaps the state of mind you’re approaching it from.

Internal Locus of Evaluation.

Right now it seems like you’re evaluating your creations or your legitimacy on the basis of some external factors. The question being: What do other people think? Do other people think this is good/bad?

Therefore the place (locus) of evaluation is external to yourself.

It’s out of your control and subject to the unknown and unknowable motives of other people. The spectre of shame drifts across the stage: will I be kicked out of the tribe for being wrong?

I suggest that you’ll be well served by creating for yourself an internal locus of evaluation.

Think and act with an internal belief in your own worthiness.

I am no better or worse than anyone else, I deserve to exist and create, I am nothing more or less than the universe experiencing itself, it is impossible to judge myself or others because human beings are too complex.

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it’s healthier to bounce your being of other people in real life, as opposed to online even though there is a place for both.

neither should influence your sense of value, which should be and is internal indeed.

regarding chronic illness and music, I find the opposite with modular, it’s an uncomfortable position to be in, not as ergonomic as my pc setup. so I work with analog samples in the daw. I program rhythmic variations and other parameter changes as oppose to doing them live, because it saves precious energy and has good results as well.

made it easier to move from acid to a more classical composed type of deal, the daw work is more suited for that as well as the infinite amount of tracks with sampled instrument vst’s.

I do miss the noodling part of modular, but prefer working towards finished considered tracks.

so all in all it works out, does it not always?

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hi!
i don’t usually participate much in forums or social networks, especially when talking with private things…to me it’s a delicate subject to have to deal with a chronic illness, but I think my experience could help someone here in the same situation I was in in the past, a situation that was not pleasant and that I have been overcoming for more than twenty years with the help of doctors, medication, my family and being able to abstract myself with gear and cheat the illness with sound. in fact, i was able to build a whole record over a year with the minimum equipment while my health condition was quite delicate, quitting strong prescription drugs with a precarious state of mind. I could say that the illness has changed my character & daily habits over the years, but also my way of working with sound, reducing my workflow and gear to the minimum, doing less effort, without wasting time: my only goal was to press rec on the recorder, building blocks, nothing else. that was the best therapy I had during my illness peak after being at the hospital. it may sound cliché, but some physical and mental limitations can offer us opportunities to improve as people, to be more humble and to perceive things that a “healthy” person cannot appreciate…especially when you´re on a creative process.

i´d like to apologise for my bad english and I encourage you to keep creating as much as you can, because sound heals, and we are VERY fortunate to have chosen sound as a hobby. had a bad day? no prob, make some noise and record everything :slight_smile:

pd: you can listen to the result of my recovering days/weeks here: Radiolas | Sustainer | Room40 (big, big thanks to mr.english who trusted me to release that work)

best,
alex

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Hey @Mister_Niles, I subscribed to this thread via email, so I’ve got both of your replies in my inbox! And they’re very pretty, very thoughtful replies.

Here’s some of my partner’s tunes. I pushed your question his way, here’s his response:

I would just say that the way I create music became far less structured and my experience of listening to music changed
--
well, hm, it's like
i guess some of my feelings changed towards music but i mean
i still see the same colors
perhaps it just became even more visual
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“had a bad day? no prob, make some noise and record everything” is such a great way to look at it.

I have someone in my life that I care about who has been dealing with chronic pain and I have been slowly encouraging back into music and art (she is leaps and bounds above me in skill and talent).

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Thanks for the replies everyone. Here you see one of the side effects of my injury. @eblomquist was right on the mark when he urged me not to monetize. I’ve never tried to sell music before last week. It was in desperation. We are dealing with fallout from the pandemic like so many others. Anyway, he knew it would be bad for me. He was right. Feeling actively ignored by an unhelpful… hindering internet messed my brain up bad. Like I said, and @ZacharyTalis and his partner pointed out : sometimes having a brain injury, especially when you are just accepting it and learning to deal with it, is like having a bunch of different versions of yourself that can show up suddenly in your skull. The accident was only a few years ago. Those alternate “me’s” are very immature. I have told people, one thing I’m dealing with is middle school level insecurity in my 50s. It sucks.
So I backed off of that. I’m being an amateur. That’s what I am. I love making music and art, and that’s why I am going to do it. If people live it… Great! I will be so happy… and I have a couple around the world who I’ve found. And on here. Good enough for me. So I’ve begun putting out free stuff. I am going to try to put some of my comic art on t-shirts though. It’s just so cute… and literally every friend I show it to says: I want that on a t-shirt. I’m going to see if they are serious.

@puggo thanks for replying and thanks for the link to your work. I’m glad you were able to accomplish your goal despite what you were dealing with. I find the most difficult part of projects to be completion.
I think I’ve finally come to a good place with that problem. I have accepted that nothing is ever truly complete, and picking a good stopping point is key. For me. I’m okay with it. No one has said: This doesn’t feel finished. Because it all does! repetition validates.
I have had to basically, write my own version of music, in a way I can handle. By the way, please do not worry about your English. It’s fine. I’m from America. Barely anyone can write it here :slight_smile: (seriously though, they can’t ). I have had to limit my color palette, my harmonic and melodic palette. Limited notes and chord shapes. Picking patterns, dynamics and tonal pallettes are fair game. I do not need to limit myself in those areas, so that’s mostly what my music is. Some of it is actually just one chord, held up to the light, turned this way and that, looked at through different lenses etc. I’ve come to love my simplified version of music. The one my brain can handle making and listening to.

Thank you everyone. Thanks @ZacharyTalis for getting words and music from your partner for me. And if I missed anyone I’m sory. Still getting used to this forum type.

And thanks to your support, instead of bailing on going into the recording studio at the end of the month for my friend’s solo album, I am doing it here, from the comfort of my couch. You all helped me have the confidence to do it, instead of just bailing. The album and songs I’m on are for our dear and departed friend, the Baltimore/Morgantown WV guitarist Thom Moore (Jetset Vapor Trails). I can’t miss my chance to honor one of the only guitarists in my old scene who was as well versed in BeBop Deluxe as he was in Fripp’s Exposure and Darryl Hall’s Sacred Songs… and shoe gaze and the rest of it. A rarity back then.
I feel ready to participate in forums again, although I’m going to come back into that world slowly and leave any place that consistently stresses me out. I need good people.
I’m slowly learning my way through this. Thanks for your assistance. And friendliness.

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