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"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. (Meanwhile, my country's government decided to throw 1.8 million euros into the fire with another embarrassing AI project.)
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.
<a href="https://mariechaplet.bandcamp.com/track/too-well-live">Too Well (Live) by Marie Chaplet</a> Too Well (Live), by Marie Chaplettrack by Marie ChapletMarie ChapletBandcamp New & Notable May 17, 2024
