Talking to people while I\u2019m sitting in a wheelchair is a delicate procedure. When it\u2019s 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 \u201cturn!\u201d so I can at least look at who\u2019s talking. That doesn\u2019t mean I\u2019ll feel involved; I\u2019m 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\u2019s speaking to in front of me. It makes me feel superfluous, and I lose interest. <\/p>\n
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\u2019s awful when you can\u2019t rely on the life-saving appliances. So now, lacking a better option, I\u2019m in my wheelchair. It\u2019s a lot harder to type, because I\u2019m seated further from the PC. Last week, the spring in my shower chair gave in. Right now it\u2019s 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\u2019s fixed. And so I\u2019m always worried if I\u2019ll 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. <\/p>\n
I went to Utrecht for a respiration checkup again. My lung capacity has been stable for three tests now (meaning around 11 months). It\u2019s around 1 litre (30%). I\u2019m pleased with that. The test itself is proving more difficult than ever. The mouthpiece doesn\u2019t fit my mouth anymore. Add to that a pin on my nose, and I\u2019m totally lost. I do fine when I\u2019m allowed to decide on my own breathing pattern. The subsequent talk with the pneumologist is always a treat. <\/p>\n
Hein\u2019s uncle who was also suffering from ALS, Piet Verkleij, has passed away. And Ward\u2019s 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\u2019s teacher, which left me upset for the rest of the day. <\/p>\n
The end of the school year is also a time of reflection. I\u2019ve been blessed with another year with my children. I\u2019m thankful for that, also for the way that Hein and others have made staying home a joy. Quietly, I\u2019ve been thinking about the next year of school; Ward\u2019s exams, choosing his secondary school, a school musical and Floor choosing her school specialty. But I\u2019m afraid to look too far ahead. First, there\u2019s the holiday to Zeeland. While watching the Tour de France I felt the pangs of nostalgia for exotic holiday destinations, but the heatwave we\u2019ve been having the past few days has reinforced my belief that Zeeland was a good choice. <\/p>\n","protected":false},"excerpt":{"rendered":"
Wheelchair conversation Talking to people while I\u2019m sitting in a wheelchair is a delicate procedure. When it\u2019s 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 … <\/p>\n