The Seated View

Starting today off with a small poem: The smell of burning insulation Smoke rising from my wheelchair (I’m okay) But I should start at the beginning. Day 1: In which my wheelchair develops a whistle Sunday afternoon as I was about to nap, I noticed a high pitched whine coming from somewhere. At first, I thought a child in one of the surrounding apartments have gotten some sort of irritating little flute thing, but then it continued longer than anyone but a pearl diver could have breath for. Weird. It eventually stopped and when I got up, it was gone. Later in the evening, I noticed the whine was coming from my joystick when I turned off the power. This has never happened before, so I promptly emailed Dave the Wonder Repair Tech. (Expositional aside: Dave very recently started his own business in partnership with Paul the Equally Wonder Repair Tech. Both of them wanted to work in a way that focused on excellence in customer service and recognizing that tim...

I have swan necks. Several of them. If you have no experience with RA, you’re probably looking like one big questionmark right now. A swan neck doesn’t just belong on a beautiful bird, but is also the name of a particular deformity common in people who having had acted, untreated RA. It looks like my index finger in this photo:   As I became more involved in the RA community online, I found a lot of people wearing some beautiful rings. It wasn’t just jewelry, it turns out, but something called a ring splint . They are particularly designed to help prevent finger deformities, such as swan necks. This has never been brought up as an option for me. I’m not necessarily blaming my rheumatologists of the last 30 years — I don’t know when these types of splints were invented, so it may be a fairly recent option. In my last appointment with my current rheumatologist, I asked for a referral to an occupational therapist (OT) for an assessment. Partly to check whether ...

The last time I was on a beach was the summer I turned 14. It was also the last time I walked. Photo by Ole Andersen The doctors had given me a reprieve before I was to report at the hospital and get encased in plaster to spend a month in a body cast. My hips were inflamed with juvenile arthritis, making it difficult to walk, causing deformities. The body cast was supposed to give the joints a rest, allowing the JA to simmer down and restarting me on the road to health. The two weeks were bliss. My parents had rented a cottage in Jutland and I remember that time as the perfect summer. In my memories, the sun is shining, warming the sandy earth and pines outside the cottage, my favourite scents blending with the smell of wooden walls. I remember simple summer dinners and going for ice cream with fresh strawberries for dessert. My friend AB joined us. We visited Legoland and drove around Jutland, seeing the manor house one of my ancestors had lost to a stable lad in a ...