Do you ever catch yourself in a moment wondering, “how the hell did I get here?” I don’t mean here as in the Starbucks in Webster, writing instagram posts. I mean “here” as in, working as a niche, disabled artist, with a Masters degree I’m not using, and a list of discarded hobbies and passions longer than my list of WIPS.
I was a competitive dancer, a multi-instrument musician, a jewelry maker, an embroiderer, a crocheter, and an Occupational Therapist. Emphasis on was. It used to feel like that list was a list of failures. An ever-growing list of things I loved, and tried, and could not succeed in as a result of my ever-changing health. I lost dance as an outlet twice: both times because of my body “failing.” I was good at music, but so many others were better. And Occupational Therapy? Well, I love that with all my heart and I’m damn good at it. But, I was told in college to “try a less demanding program.” I was told in my first full time job that I didn’t have the stamina for the job (true). I took time off to focus on my health, but even returning part time found myself in the same position again: having to resign because my health made me “inconsistent.”
I was good at dance, I was good at music, I was a GREAT OT, but circumstances out of my control convinced me that I was failing. While I’d tell any patient, client, or friend of mine that those experiences didn’t make them a failure, it is harder to tell myself the same thing. Sure, I go through phases where I feel confident that I did all I could, and that being a full time disabled artist with an un-used degree isn’t a bad thing. Then doubt creeps in and I tell myself I need to look for a “real” job. I think, my professors were right. I just couldn’t make it in this field, even part time, and now I’ve wasted so much time. How did I get here?
It feels like my adult life has been a cycle of pushing my body to its breaking point, and then taking time to rebuild my stamina until it’s time to break again. I repeatedly work myself into illness, first full time, then part-time, and even now — when I have reached some sort of stability and meaningful routine in my disabled life I feel as though I need to be looking for a “real” job.
Throughout this cycle, it felt like I had all the ambition and drive in the world, but my illness was stopping me from doing anything with it. Then when Covid came, suddenly the world knew what it felt like to feel helpless to change your situation. People understood what it was like to want to work, but be unable to due to circumstances out of their control. When work eventually returned, there were things that didn’t… work anymore. People changed jobs, entered self-employment, and set boundaries in their work day to create a better balance for themselves. They didn’t fail - they adapted.
That’s what I’ve done. I’ve not failed at being an OT. I’ve not failed at being a part-time OT. I’ve not failed at dance, or music, or jewelry, or rock-climbing, or any of the things I’ve tried and moved past. I’ve simply realized that right now, those things are not the right fit for me. They were right for a time, and now they (much like I) need to take a break).
The funny thing? I am still using my degree every damn day. But instead of using it as a certification to work myself back into the hospital (as a patient) I am using it to keep myself out of the hospital. I still dance. I still sing corny parody songs for anyone who will listen. And I am still an artist. Even last year, when I couldn’t pick up a woodburner for months, I was still an artist.
Because truthfully, learning to balance a dynamic disability is an art form in itself.
