"The world is crazy, man"
Covid is still a fresh memory, and I am sitting in a café next to my flat. The barista is a friend from the Netherlands, and I have heard her say this quite a few times. I have agreed with her every time. The world is crazy and absurd, and I don't think it's getting any better.
It's been four or so years. That friend now has a wonderful baby and released an album. The world is still crazy, and it's not looking up.
Today I feel worse than usual, and I'm taking refuge in memories from that time. I had been diagnosed a while back, but I could still walk. I had a corporate job that I thought would keep me somewhat safe. My favourite quote was "I am and always will be the optimist. The hoper of far-flung hopes. And the dreamer of improbable dreams. — Doctor Who."
I am scared of what is coming around the corner.
The self bone-marrow transplant didn't stick, and I turned myself into a clinical trial. With ups and downs and trying to find clues for a dosage and regimen. These past few days, my symptoms have gotten worse, and as I type, I don't feel my fingers are quite right.
Is this the disease spreading? Is the drug working? Will I be fit enough to get to my classes next week? Where do I cancel my subscription to the Anxiety++ plan?
I worked across the summer on GregoryAi, and on more personal research of new drugs. What else could I do? The weather made it impossible for me to leave this white cell.
It's weird. I am fighting a disease with a computer that can talk back, trying to gather the research that can one day help people like me. And I am reaching across most of the ParaSocial Media sphere for people who may help.
I don't have much support apart from a few people I was lucky enough to find. My best friends are lobsters, baristas, copywriters, teachers, students and misfits from marketing agencies.
Four years ago, I didn't even accept the possibility that I would need a wheelchair. I had ideas, solutions to improve my search for a cure, hope that the answer would be in some digital pile of papers waiting for someone to connect the dots. I had blind hope.
It is crazy how much has changed since then. Now I am stuck against a corner. Wondering why I can't get through to doctors and other researchers, for whom what I have been doing alone could be beneficial. I will hold that door open. I feel worn and tired, but I haven't given up.
"The world is crazy, man", and we are all just trying to do the best that we can to make it a little better.
Bandcamp New & Notable May 17, 2024