‘No wind but somehow still sailing’ feels like a pretty apt description of my life right now.
Things are tough these days, while I watch the world deal with Covid, I’ve been fighting my own battles against a devastating chronic illness that’s been slowly tearing me apart for the last 20 years. Having a metabolic disease is probably the worst kind of illness for someone with my occupation and disposition. On a typical day I have to decide between either four hours of talking to a camera, three hours of very slow woodworking, an hour of more physical woodwork, or 20 minutes of paddling. Just one of those is the whole energy budget for the day and if I go past it I’m looking at days, and sometimes weeks of severe weakness, chest pain, and difficulty breathing. I carved a single oar three days ago and I still haven’t recovered. Hopefully I can do another one tomorrow.
It’s such a crazy experience to go from being a paddler and an athlete to someone who can barely stand most of the time, and even weirder that there’s just no visibility of it. I don’t really talk about it much because I don’t see how that really helps me or anyone else, but I do sometimes wish that we had a better cultural understanding of chronic illness the same way that we recognize the disability of people with other injuries or conditions.
2020 feels like a turning point for me although I don’t know what direction that turn is going in. On one hand, I’ve never been sicker and if things keep up the way they are I’ll probably have to stop working by the end of the year but on the other hand I’m attacking the problem with the full force of my creativity and bank account. We just put a mild hyperbaric oxygen chamber in the house and next week I’m going in for stem cell therapy to complement the zillions of other things I’m already doing. It’s a pretty savage experience but I still feel like there’s just got to be some way to fix this.
Sometimes I get a good day when things don’t hurt so much and I’m just astonished by the beauty and the privilege of being alive. I wish everyone could see that. I think the world would be a very different place.
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