Hello.

Thank you for having stuck with me through this period of withdrawal and hibernation.

I have been sick. For two years, and counting.

Maybe you have seen me in person during this span. Sometimes I managed to come to a party, or to shuffleboard, or even to a concert. You may have seen me during a good day, a good hour, or a good moment.

Or when you saw me I was pretending. Believe it or not there was a period where I didn’t realize that I was Sick. I thought I had eaten something that didn’t agree with me, or I slept poorly, or some other thing that I could fix by plain old problem solving. I tried to carry on as normal until my body said No. Then I tried to keep going anyway until my body said NO!!!!!

For a while I was using the social photo sharing app BeReal which prompts you to take a photo around the same time every day. The idea is to capture a “real” moment in your life without pretense or premeditation. It’s a fun idea and I like to see what my friends’ daily lives look like. Recently, on a good day, I was hanging out with some friends and one asked why I had stopped using it. I said that I was getting too sad seeing my own pictures were always only me lying down or walking Sailor. He said, “That’s real! That’s the point!” I said, “I don’t need an app to remind me how small my life is!”

BeingReal. The app BeReal takes a photo with the front-facing and selfie camera about 1 second apart.

(Image Descriptions: There are three pairs of photos. The first pair shows a selfie of me, a white person with long dark hair, reclining with my black chihuahua in the foreground. The paired photo from the front-facing camera shows my legs stretched out on the couch. The selfie in the second pair is me in bed with a light-blocking eye mask on, the second photo is the ceiling. The third set of photos is tinted magenta from hue lights. I am lying in bed looking directly into the camera. In the second photo is my kindle screen.) 

I’ve been really sick. I didn’t start trying to quantify it until earlier this year when, while on a six month wait for my neurologist appointment, I started tracking migraine disorder symptoms (it’s a lot more than just headache and it is Weird). According to the MIDAS scale, I’ve been severely disabled for these two years. Thank you MigraineBuddy app for validation, clarity, and permission to stop troubleshooting my disability and begin learning acceptance.

I’m still sick. I’m on a new medication that seems to be helping, so I’m having longer stretches of feeling ok—so far my record on this med is 12 days with no migraine symptoms. I’m still clocking moderate disability on the MIDAS scale.

I’ve missed engaging here, and I’ve missed writing. I’m hoping to pick those things back up—slowly. One thing I have been able to do through all the pain is read. A lot. Not necessarily synthesize or process into ideas or anything like that, but wow have I read a small library’s worth of books.

I’m trying to slowly get back into a place of engaging with a creative practice, which includes sharing with a community. I’ve tried a couple times in the past two years without realizing (a) how sick I was and (b) the absolute need to approach my creative practice with care as it has also been sick and needs to be nursed back to health.

While this Patreon started as a play space, I want you to know that your financial support has become meaningful to me during this time. It’s helped me with bus fare when I had to give up my car because I couldn’t work at the pace I had been. It’s helped me with prescription co-pays and supplements, both of which have increased exponentially as I literally tried EVERYTHING to put the daily pain to bed. Sometimes it’s just been a symbol—as money is—to let me know that there are still people out there who want to know what I’m up to, when I get back to being up to anything at all.

So thank you. I am so grateful to you.

xoxoxo

PS the tarot project is not dead, it is caught up in the web of my illness and disability. This has been the source of some complex and difficult feelings but just know that it is not forgotten and I hope to feel well enough to get it completed sooner than later.