On the Eve of the Eve of New Year's Eve...

I know I usually start my substacks with something about cancer and then draw parallels to more general areas of life, but this one is different. As 2025 nears, I am trying to rethink much about my routines in life and my own attitudes. Things like what brings me joy and fulfillment. What makes me feel like I’m contributing to my family life and the world at large.

For instance, I have been focusing on reducing my overall time looking at social media over the past few months. I’ve been largely successful with a gradual approach. My overall use is down greatly. And while I’d like to reduce my use so much that I delete a couple apps, I don’t want to act like social media in of itself is problematic as much as how I have used it.

As someone on disability, I have a lot of time on my hands. So I scroll. In short blasts, it helps calm me and gives me a connection to the outside world that is otherwise rather intimidating to me on several levels.

But I tend to use it as a substitution from more productive things I could be doing. Like when I was a teenager and in my 20s, I would compulsively grab a guitar or bizarro electronic instrument I would find at garage sales in much the same way. Except then I gradually learned a skill instead of learning about a cute animal video that was probably staged. Or responding to someone triggering online when there’s no real hope of changing anyone’s mind.

I want to learn how to use social media more as a benefit to my life (and the world to a certain extent) instead of a detriment.

I still feel like there’s value in expressing opinions to the world about whatever issues one cares about, but not so much in spending 45 minutes responding to someone that disagrees. In short: discussion is good. Debate ( at least in the context of social media) is largely bad. How can we put the power of social media in the hands of the people instead of the corporations? I don’t have a problem with them profiting from something useful they’ve created, but I do think we need to use it differently. With more love for the greater good. More empathy.

I originally planned to write about my resolutions, but I deleted most of it cuz who really cares, ya know? I mean we all have essentially the same sorts of things on our minds and they’re all great, wonderful things, but come on now. Blah blah blah? Amirite?

Instead, I want to focus on how I plan on altering this substack. I may still write posts in a similar vein to what I’ve been doing for the last 18 months but I also don’t want to keep doing the same thing over and over until I eventually die. It’s not about feeling like I’m stagnating or something. I just have a deep-seeded compulsion to always change things. To experiment in presentation and stumble across beautiful mistakes that may inspire others or, in the least, make me feel fulfilled.

Long before I started writing here, I made YouTube videos that were interviews with cancer and cancer-adjacent følken. But even with those, they started as the stock “tell me your story” type videos into something different. Hell, that’s how the rock opera was born (and yes, it’s coming sooner than many think). I became more interested in issues and concepts over the stuff we’ve all come to expect from patient advocacy.

That approach is all fine and dandy, but it’s not me. I have continued to interview people nearly the whole time since I posted my last video, but I stopped editing new “content” awhile back and I eventually drifted here. That, too, went from being straight-forward to not-so-straight-forward.

But as you’ve probably noticed, I haven’t posted nearly as regularly over the pst 3 or 4 months. It drives me crazy with anxiety but I’m also not going to beat myself over it. Instead, I’m going to adapt and try to figure out how to use all these unedited videos with all the cool audio-visual features Substack has added over the past 6 months. A hybrid blog/vlog/podcast. It sounds like a bad art school project, but fuck it, many of my favorite musicians were art school rejects.

Before she passed from breast cancer in 2022, I had many discussions with a woman named Ilene Kaminsky (a former tech executive) about the idea of “creative advocacy” that are inline with my lifelong belief that it’s ok to be anything you want, but never be boring.

Yeah, taking on something ill-advised and cringey interests me a lot more than arguing about whether or not pineapple belongs on pizza (hint: it does).

First up, is a video I started working on that I’m tentatively calling “Are all cancer patients inherently broken or is it just me?”. Yeah, I’m still working on the title but you have to admit that it’s not boring.

PS- If you’d like to be in one of these videos, just DM me!