Don't Give Up On You
By and large, the pandemic stole my caché of whimsey. As a disabled artist, navigating daily life in a world that continues to dismiss the simple need to wear a mask to keep vulnerable communities safe is beyond soul-crushing. Living with the constant paranoia of interacting with careless, infected people has driven my partner, who is also high risk, and I to continue many of our lockdown habits, including staying home. Happy Hours in bars and restaurants have been replaced with zoom calls and hour-long phone calls. I've saved a lot of money and cut back my drinking by 90%, it's a win/win; though I do miss the appetizers.
I've also learned which friendships are made to endure, because I can't do much with able-bodied people have the luxury of saying "I'm done with zoom calls. I have zoom fatigue, I'm over them." Leveraging phone and video calls enable chronically-ill and disabled people to connect with friends, family and health care providers safely and efficiently, especially in the month of December when the desire to keep close with loved ones is at an all-time high, on par with hospital capacity due to RSV, flu and COVID patients.
What I miss is meeting new people at gallery shows, concerts, queer events and house parties. Most of all I miss performing, traveling, seeing theater and symphonies. Art & music making, hiking and telescoping keep me busy enough, and my friends are bomb af so there's nothing I'm thirsting for interpersonally. However what I've been lacking since I had to cancel my retrospective tour to Italy in spring of 2020 is the bliss of having dreams to work towards and manifest.
Early this fall, we decided we were ready for a change. If we were going to be indoors all the time, it should be in a house with an epic backyard instead of an apartment with a shared backyard. I've wrestled with the capacity of my return to live performance for almost three years now, and the unending frustration over risk assessment in order to do it equitably and safely made me give up trying. Equity is really important to me, it's non-negotiable and I have no hesitation in walking away if a steep downturn should occur. No opportunity is worth it to me if the people who promise to protect me and keep me safe squelch on the deal. At this point in my career, fifteen years in, I know my thresholds, and they've been weakened so drastically by the blatant disregard for chronically ill and disabled lives that I ran out of fucks to give years ago.
Before my diabetes diagnosis in 2019, I was out there licking telephone poles with the rest of them. Freebasing germs on the red line was a Saturday night delight. Now my partner and I chose our health and safety over all other options, at the expense of my creative career, and if we do take the risk - it's been well assessed and we boost our protocol to be better prepared. I figured since I wasn't going to be performing in anyone else's shows, I shouldn't host my work on other people's platforms either - that's how I arrived at the decision to retire my Substack and only publish my work on my own site. It felt like there was no way for me to dream big when the requirements for traditional success are very inaccessible for neurodivergent, chronically ill and disabled people: in-person promo events, traveling to gigs, conventions, galas, dinners, award shows, class presentations, festivals y mas.
Therefore, I had grown content with becoming a reclusive seaside witch that keeps a private art practice and falls deep into healing, meditative trances. The business takes a lot out of you, because when you're not hauling ass on a project, you are beating yourself up for not doing a project or not doing more with your "free time" (as if merely existing isn't productive enough), and doing more is a never ending, expansive task. If you think about the purpose of our basic humanity, it has nothing to fucking do with branding, schedules or tumeric lattes and has everything to do with regulating your nervous system, deep belly breath, walking in nature and connecting wit your community. Moving to a beachside town has given me a dream, for the first time in years, that I can fantasize about and work towards. Moving to a new state is thrilling and romantic and terrifying and deliciously exciting. I've only ever known Chicago as the center of my universe my entire life, which is why I've done so much traveling; to say my heart is breaking is an understatement. I already miss here and I'm still here, I believe this is when the old adage "no pain, no gain" becomes relevant.
Losing the ability to be a dreamer took a much larger toll on me than I had realized. Pre-pandemic, all my big life goals were made as an able-bodied person who was somewhat tolerant of absolute fuckshit from producers and collaborators for the sake of booking the gig, to stack my CV, to prepare me for the next asshole who was going to be leading the bigger project with a bigger budget. Going to art school gives you a preview of this, it prepares you to bite the curb until someone rescues you, uplifts you and pulls a chair up at the table for you. And don't me started on learning the ugly truths about all the elite art and culture orgs I had one day hoped to collaborate with or be featured at. It seemed all the momentum I had worked so hard for over twelve years to generate was falling by the wayside.
A funny thing happens when you're an artist who has been at it for as long as I have, you make repeated attempts at leaving the scene - only to be yanked back in. It seems the more adamant you are about leaving, the more dramatically you get dragged back into they fray. This happened me recently when the very kind Sarah Shaw recommended Food Over Function via her new Substack: Found Objects a week and a half after I wrote what I was planning to be my last post. It's a blessing to have people who believe in you when you want to throw in the towel. Keep an eye out for a new Substack post soon!
Then I decided to apply to The One Minutes - Rest Hard: an act of doing nothing in a safe company By Party Office. This gave me the creative challenge I was craving, which lead me to make An Abundance of Lavender, a short film that I shot, directed and scored + edited by my partner. I wrapped on it tonight and feel absolutely electric when I watch it. Can't wait to debut it next week! It's my first film in three years and the very first time I've ever composed my own score, the process of which will get its own blog because it was a wild and fun experience. I forgot how happy filmmaking makes me and can't wait to do more. I think my next one is going to be about tasting menus!
Thanks for sticking with me through the ups and the downs this year. For the first time in a long while, it doesn't feel like all the doors are closing because I continue to prioritize my wellbeing over my career. The equitable opportunities I once could only dream about are finally finding their way to me and it feels really good to have my head in the clouds again. She's bringing whimsey back.
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Here is where I share announcements of all shapes and sizes, and deep dive into my art and music making practices. I aim to demystify the creative process for BIPOC women & NBs.
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