Diary July 2002


Wheelchair conversation

Talking to people while I’m sitting in a wheelchair is a delicate procedure. When it’s just me and my accompanist, I prefer my conversation partner in front of me. When we run into someone on the street, my back is usually to the person striking up conversation. When that happens, I always screech “turn!” so I can at least look at who’s talking. That doesn’t mean I’ll feel involved; I’m way lower than anyone else, after all. But like that, I can at least ask questions, through Hein. The worst thing is being in between two people having a conversation. Hein, unreachable behind me, the person he’s speaking to in front of me. It makes me feel superfluous, and I lose interest.

Broken appliances

Last night, my chair started acting up, tilting forward, making me slide off. Luckily, Hein was next to me and saved me from a swift slide to the floor. It’s awful when you can’t rely on the life-saving appliances. So now, lacking a better option, I’m in my wheelchair. It’s a lot harder to type, because I’m seated further from the PC. Last week, the spring in my shower chair gave in. Right now it’s always slightly retracted, making it a nightmare for Hein to put it down properly. My desk chair is now permanently in 4th gear, completely useless, pushed to the side. And it always takes days/weeks before the problem’s fixed. And so I’m always worried if I’ll be alright without those appliances for a while. It stresses me out. By now, my chair is fixed, but my faith in the seat has been tainted permanently.

Good news

I went to Utrecht for a respiration checkup again. My lung capacity has been stable for three tests now (meaning around 11 months). It’s around 1 litre (30%). I’m pleased with that. The test itself is proving more difficult than ever. The mouthpiece doesn’t fit my mouth anymore. Add to that a pin on my nose, and I’m totally lost. I do fine when I’m allowed to decide on my own breathing pattern. The subsequent talk with the pneumologist is always a treat.

Bad news

Hein’s uncle who was also suffering from ALS, Piet Verkleij, has passed away. And Ward’s school teacher has fallen deathly ill too. We try to shield the kids, but the outside world goes on regardless. I wrote a letter to Ward’s teacher, which left me upset for the rest of the day.

School’s out

The end of the school year is also a time of reflection. I’ve been blessed with another year with my children. I’m thankful for that, also for the way that Hein and others have made staying home a joy. Quietly, I’ve been thinking about the next year of school; Ward’s exams, choosing his secondary school, a school musical and Floor choosing her school specialty. But I’m afraid to look too far ahead. First, there’s the holiday to Zeeland. While watching the Tour de France I felt the pangs of nostalgia for exotic holiday destinations, but the heatwave we’ve been having the past few days has reinforced my belief that Zeeland was a good choice.