Dealing with my heart condition (obstructive hypotrophic cardiomyopathy) has been a big part of my year. I was invited to take part in a randomised controlled trial of a new medicine. This has involved frequent trips to Royal Brompton hospital in Chelsea where I’ve been looked after by a wonderful and talented team of nurses, doctors and researchers. The trial itself was double blinded so we’ll never know which branch of was in.
That said, I felt very good while on the trial and when I abruptly stopped the treatment at the end of the trial I started to feel as bad as I ever have again. Frequent breathlessness and chest pain, and difficulty in handling some everyday tasks (getting the kids to school on time in particular).
I found this emotionally challenging at times, the sense of mortality, of not being able to do some things my kids want me to do and knowing that I’ll never be the same as I was. However I’ve been accepted on to a long term study of the same medicine now and it seems to be working pretty well. I already have a lot more energy and a lot less discomfort.
I also had a genetic test this year and found that I have a “pathogenic variant in MYBPC3”. The upshot of this is that my immediate family may also be affected. For now, there’s nothing I can do about that - but the kids will be screened occasionally at GOSH as they get older and at some point they may have a genetic test too. I have to think through the implications of that.
I’m incredibly lucky to receive the care I do, I’ve been really enjoying being part of the scientific process to develop a new treatment and I’m thankful for the health I do have.
It’s been a pretty successful year work-wise. I’ve been consistently busy with projects - first joining a team of Unthinkable folks prototyping new things for a university and then with dwx working on various bits of the GOV.UK codebase.
It continues to be a pleasure working with my Go Free Range friends, we’re good at supporting each other through various ups- and downs- and while I think we find it hard to be deliberate about the future, we’re very good at making the most of the present. Having regular days together really helps as I still find working on my own pretty isolating. Having a small office at Space4 works well for me (I still don’t like working from home) and I need to make more of the opportunity to hang out with other people who are based there.
My family have been mostly healthy and happy this year. N- moved from Year 1 to Year 2 in September and has gone from carefully sounding out words to independently reading. I love fielding all the questions he has about the things he’s learning. F- has gone from toddler to little boy, he’s speaking a lot, telling “jokes” and is very physically active.
We spent the school summer holidays in Colombia visiting family. I really enjoyed the trip. Compared to the last visit I struggled a lot less being at altitude - likely because the medication I’m taking was working very well. I particularly enjoyed hiring a bike and cycling with N- through the closed streets of Bogotá on Sundays.
I decided not to work on client projects during that time and instead spent some time handling GFR admin tasks and starting work on jam.coop. The latter is an idea we’ve been kicking around since Bandcamp was taken over by Epic games and the management tried to prevent the formation of a workers’ union. We think our co-operatively-owned online record shop is a viable alternative.
At the start of the year I resolved to record and release some of my own music. I spent most of my free time in January and February finishing up an EP of ambient music and later in the year had a track included on a compilation. The process took a lot out of me creatively and I haven’t had the same dedication since - but I do regularly sit down in the evening to just make sounds and relax.
I’ve enjoyed getting out with friends to gigs this year. End of the Road festival with my brother and N- was really good fun. I saw Sylvan Esso with Adri in Brixton, Kronos Quartet with Tom at the Barbican, Hainbach, Look Mum No Computer and Tim Hecker with friends from the internet, Hainbach again at Iklektic with Paul and Pedro, and a few other things I can’t remember right now (this is why we need weeknotes, Chris).
I read some actual paperback books in the first half of the year - Ursula K. Le Guin’s Hainish Cycle. A lot of people have recommended these to me over the years. I particularly (and somewhat predictably) enjoyed the anarchist utopia “The Dispossessed” but the whole series was great and reading them back-to-back has meant that the world they created has stuck with me. I enjoyed buying old paperbacks from Camden Market at Joel’s Ethical Book Search.
Very little cinema this year but Adri and I did take a day off to watch Past Lives and eat food in Brixton. It’s a wonderful film.