Travel through the portal with me.
To my dear, dear friends, fans, supporters, advocates, and appreciators,
I have both a lot to tell you and not much to say.
It's a strange combination.
TL;DR: I'm in an art show, I'm sharing research over zoom, and I have Long Covid.
First off, there are 2 art things to mention:
1) I am in a wonderful group show (see below) in Minneapolis at Fresh Eye Gallery called "the bed beside me." This show is only up for 2 more days (today and tomorrow!). If you can make it over there, it's a really incredible show that has been thoughtfully and carefully curated by Drew Maude-Griffen. All of the artists in the show have created our works of art from our beds. And it is a special thing to me to be able to exhibit this work with this group of artists. Why am I making art from my bed and not my studio, you might be wondering. Well, I'll get to that soon, I promise.
2) I am doing a research share out in just a couple weeks on Monday, June 26 at 7pm CDT. In this virtual presentation, I will be sharing out about the research I did this past year and a half on these secret government tests that were conducted here in Minneapolis and in my hometown of St. Louis and elsewhere in the 1950s. I would love to see your face beaming back at me while I talk about radiological weapons, Cold War secrecy, ethically fraught human tests, and how this all still reverberates today as we have seen in the myriad responses to the COVID-19 pandemic. More details about how to join the zoom at the bottom of the email.
Ok! Now that we have got the big art things on the table, I want to talk to you about some harder things.
But I'm not sure how to say it.
Do I list all my new diagnoses or symptoms for you (it’s Long Covid, in a nutshell, but also it’s myalgic encephalomyelitis / chronic fatigue, fibromyalgia, orthostatic intolerance, asthma, and sleep apnea)?
Do I try to tell the story in a linear way or do I stick to the present moment?
Do I share with you the hardships, the supports I’ve received, or skip that stuff altogether?
I don’t know.
And that’s partly why this newsletter didn’t get to you in a timely manner, in a way that gave you more time to see the art show I’m in. But it’s also just that everything in my life is moving at a g l a c i a l p a c e right now. And at times, I can accept that, but I also feel incredibly frustrated by it a lot of the time as well.
For people who have diagnoses like mine, the medical industrial complex doesn’t really know what to do with us. Thankfully, I have had to suffer a lot less gaslighting and disbelief than other people who had post-viral illnesses pre-Covid or who have to also suffer the racism of our medical system or who are unlucky enough to be living in a deeply covid-denying area.
Despite this, I am still sick 13 months after first my Covid-19 positive PCR, still sick even though I had 4 vaccines in my arms before getting sick and one since, still sick even though I’ve been to over 100 doctors visits, so many types of therapy, and “alternative” treatments.
I also went from working as a teaching artist with the Science Museum of MN, Eagan Art House, and COMPAS to working from home as a curriculum designer to not working at all. I joked that going to doctors visits was a part time job, but in reality, getting better became my full time job.
And while I am still sick, I am also feeling better.
Is it because my schedule is 10% of what it once was?
Is it because I’m finally “pacing” my life the way my Occupational Therapist instructed me to do a year ago - which truly took months and months to actually figure out how to counteract my incredibly honed ability to push through?
Is it the medications, the bodywork and acupuncture, and the CPAP-machine assisted sleep?
Who fucking knows. But I can appreciate that I can sit in front of my computer again for an hour or two and work on writing this without it making me sicker.
I have other thoughts to share about this journey I’m on - like how it feels to have a diagnosis (ME/chronic fatigue) that was the brunt of jokes throughout the 90s and that I absolutely did not understand until I couldn’t move my body at all, even to get out of bed. And how it feels to be newly disabled and what that means for my art practice. And how much - oh so so much - I have to learn about my own internalized ableism and how incredibly lucky we are to live in a post ADA time that disabled people organized and fought so hard to achieve, and yet, it’s also still incredibly difficult to be a disabled person in our society.
So I’m proposing that I am going to do more of these newsletters. I’m feeling jaded about social media (who isn’t?), and after these last few deeply isolating years, I want to find ways to make authentic connections again. I also feel excited to tell you about what I’m thinking about, researching, making, and offering. I’ve got lots of ideas cooking, but it’s the slow cooker version of my life, so it will take some time.
If you’ve read this far, I’m really impressed. And if you want to reach out to me just to say hello, that would be amazing. I was reading over who opened this newsletter when I sent it out last summer, and it really warmed my heart to see so many names on there, including people from all over the country, artist friends I’ve met on residencies, old pals and profs from college, and the incredible amount of friends I have who are not on social media! I’ve been reading Shoshana Zuboff’s The Age of Surveillance Capitalism for the last few years (it’s a serious tome, y’all!), and I commend all of you who have resisted or let go of the tentacles of Meta and its ilk. Tell me your favorite thing about it, I truly want to know.
In love and solidarity,