Has it already been a month? The days go by slow but the months go by fast. It’s been kind of a rough one, and a rough time in general for me lately. I lost almost a week of streaming due to medical travel, and then another storm hit and knocked out the power and electricity for a the weekend to follow. Add in general malaise and migraine episodes, and I feel like I’ve been more off kilter than on for this past month.
The medical travel really took a toll on me both mentally and physically. I was supposed to go to California to receive a blood patch treatment that had a small chance of remedying my problem, but my insurance provider decided that this was not “medically necessary” and that someone local could take care of me instead. So, I then got referred to the local specialist that the company was presumably referring to, and they did in fact cover that treatment.
The new doctor did not agree with the treatment plan of the one at Stanford, and so ordered a new set of tests to explore a different line of treatment. Meanwhile, the doctor at Stanford disagrees with the approach of the local doctor and advises not to continue treatment because he thinks it will lead to expensive and risky treatments. We are still appealing the denial to see the doctor at Stanford, since he has been treating me this whole time and has produced significant results. But a lot of it is in limbo, and it exhausts me.
The local doctor ordered a imaging test that could only be done on Oahu, so the week I lost was getting over there for that. The scan itself only took about a half hour, but I had to leave the night before to get to the hospital in time for the procedure. Navigating airplanes and the airport is not an easy thing for me. Because I can be upright for about 30 minutes, we typically just use the wheelchair service instead of demanding a full on hospital stretcher to get me to the gate. But this does mean I’m upright going through TSA and on the way to the gate. Then I lay on the terminal floor until the plane arrives.
And there’s a constant fight with the insurance to provide me with 3 seats on the airplane so I can stay flat for the duration of the flight. They still ask me to sit up during takeoff and landing, so that time adds up, and then of course leaving the airport and waiting for transportation to our destination. Insurance seems to like to work at the very last minute, so we didn’t have our plane tickets and hotel confirmed until literally the day before departure. The whole week before the procedure was a mad scramble for submitting approvals and making sure all the pieces fit.
The whole thing is pretty exhausting, and I typically have to take my migraine meds by the end of it. Even though it was technically only two days of travel, I took the day after we returned to rest because I really needed it. I almost didn’t play on Friday too, but I managed to make myself do it.
Being back on Oahu was a bit of an emotional ride too. I lived there for about a decade, through college and my budding career, so lots of memories came flooding back in our brief trip. All the things I used to do, places I used to like, people I used to know. I shut out the world for a long time because it was too painful to think about everything I lost, and even now its super frustrating. Seeing the hustle and bustle of the big city really reemphasized how disabled I really am.
When I stay in my lane and within my constraints, I mostly do ok. I still get random migraines, but found a way to stay more or less comfortable and sane with my diet of music, anime, and games. It could always be worse, and it was worse before, so I try to look on the bright side of things. If I didn’t have to work another day in my life, ukulele, anime, and video games would probably be most of what I’d aim do anyway.
But, seeing people working, driving around, having fun on vacation, doing all sorts of things because walking around is a trivial part of life, has kind of really got me down. I really am disabled and living a significantly impoverished life compared the the vast majority of people. It’s easier for me to deal with it if I don’t see it in front of me. Staying alone in my room keeps me away from comparing myself to healthy people. What I had, what I lost, what comes so easily to others that I must fight for a sliver of.
And then the music
Which brings me to this project. I’ve always said there’s more to being a musician than just playing music. It’s about making the right sounds at the right time (i.e. making music) in the right places and for the right people. It’s art. It’s a conversation with the audience. It’s not just about the sounds you make. Being a musician is playing a specific role in society. The music is just the avenue. To really make it as a musician, you need to get yourself in front of the right people at the right time.
From the start there has been a constant string of compromises between my ambitions and ability. A lot of things got shelved because they are “computer work” that is difficult for me to do from bed. Social media is technically accessible from my bedroom, but its designed for people who are upright who can phones and tables and go outside. Or those who can edit and produce on computers.
Beyond that, the content is just a stream of normal people who are upright, which still gets to me. It makes it hard to participate and see what works. It does not spark joy. Not having to see healthy people is part of why I watch so much anime instead of media with live actors.
A lot of the typical musician things also had to be compromised to – like going outside to play in front of people, or singing while being vertical. I kind of knew it from the start, but feeling like I’ll never be as good as normal people who can sing upright still stings. Why even bother? Well, there’s kind of nothing else for me to do. But I’m actually ok with just singing for my four walls for the sake of singing. I don’t know.
Part of the idea behind this was to practice playing in front of people online for the day that I could go outside and play in front of people for real, but it seems that day may not be coming. Even the dream of going out to play on the beach, or on lounge chairs, is physically prohibitive for me. I did it once, and it drained my energy so hard I haven’t done it again.
I’m also still coming out of my streams basically exhausted. I usually have to do nothing but watch some anime for an hour or so after each stream because my brain just stops working. If I could put in another couple hours of work on social media before or after the singing, I think I could get places. But its sort of all I can do to make it through the musical practice, which I actually enjoy.
I think the weight of ambition being crushed by limited ability is a feeling many who make music feel. There’s always more to do, we can always be a little bit better, and the struggle is an integral part of the journey. It can be hard to tell the difference between legitimate excuses and cop outs. There is a promise that if you keep practicing, if you just keep working, things will work out.
But you get what you give. Time spent practicing music is time not spent promoting your music on social media. Do I want to be good at making music, or do I want to be good at making memorable experiences? What do I really want? I don’t know. There’s an idea to “start with the end in mind” and for me that “end” was strongly contingent on the upcoming medical procedures. Now that has been postponed indefinitely, I need to adapt.
I’ve spent a lot of time and energy learning to be okay with being not okay. Accepting my situation and not trying to rock the boat. If I want to eat less candy, don’t buy any. If I don’t want to feel bad about not being able to do things, don’t try to do things. Musical ambition is the antithesis of this. Walking the middle path is definitely the harder road.
I’d say there’s nothing else to do, but there are games to play and anime to watch. The Summer 2026 anime season is wrapping up and there’s a bunch of shows, and a few new video games have caught my attention. Much more fun to have fun than playing the social media game and try to boost the channel. But hey, we hit 250 subs on YouTube! Growth is still happening, slowly but steadily~