Diary February 2003


The musical is finished

Last week, I finished the musical. It was all I could think about. It practically wrote itself. Ward had minimum input. He was fine letting me do my thing. 15 pages, some of them copied word-for-word from memory. When I write a lot, my head gradually tilts to the side, making clicking the right words and letters difficult. I was so driven that I managed to finish the project in two weeks. It’s a real 2003 period piece: Idols (and its dreaded jury members), heaps of pop culture, politicians and jokes about our awful public transport system.

New aide

It’s that time again, I have to get used to a new aide. We have no traditions or routines to speak of. Despite only having known each other for two days, we’re supposed to fully trust each other and work together. I can’t personally tell her, and the note we prepared doesn’t capture the intricate details. How do I like my cup held? Don’t leave me alone for too long when I haven’t used the bathroom in a while. Don’t ask me questions while I’m eating, I can’t answer. I’d rather we don’t talk at all during meals. Things that go without saying with my other aides have to be re-explained. But I do like her as a person, which goes a long way. She had a bit of trouble getting me to the bathroom, but we managed it eventually and it was a learning moment for her. I’m sure it won’t happen again. Besides, it’s fun to hear new stories every once in a while. And boy, does she like talking. We’ll be fine, Sandra and I.


These days my shoulder hurts when I’m sleeping. Not because of my mattress, but because of my lack of muscles, meaning my arm is too heavy for my rotator cuff. Now I put my arm on a pillow. I’ve come up with an ingenious way to roll over in bed. While I’m lying on my side, Hein tucks the blanket underneath me, making turning so much easier. On average, I still need Hein’s help once a night. And we leave the heating on at night so my muscles don’t get cold and go rigid. There’s a whole science to sleeping comfortably.


I’m a systematic, deliberate kind of person. It manifests most when I’m confronted by someone who is anything but. Sandra is one of those people. She wanted to clean up after lunch and forgot to put the lid on the butter packet. I couldn’t help but tell her, in my almost indecipherable voice, that she’d forgotten the lid. Ridiculous. Eventually I had to resort to spelling, L-I-D, L-I-D! Like it mattered at all. There are better uses for my energy than this, which I realised way too late. I’m weird like that. I need to learn to let some things go. Another example: we went for a car ride and I wanted the kids to be strapped in. That was when the big guessing game started, something I bloody hate. Something about the windows? Open them? Close them? The brakes? Did I put on the handbrake? I started spelling again: S-E-A-T-B-E-L-T. And then it click for Floor: “Mum, if you hadn’t said anything we would have fastened our seat belts by now.” Sigh.

Skiing holiday

We’ll be going on a skiing holiday on Sunday, February 23rd and return on the following Sunday. We’re hoping to avoid heavy traffic that way. And we’re hoping for fair weather, of course. Moreover, it turns out that we can take the car all the way up the mountain, to a wheelchair accessible restaurant with a view of the ski slope. I wasn’t expecting that, but I’ll be glad to satisfy my voyeuristic needs on a real winter sports terrace.
There was no heavy traffic to speak of, as expected. The restaurant was 2750 metres above sea level, accessible by driving up the serpentine 26 km long mountain road. Driving in the mountains is not a pleasant experience for me. When we go up, my head is pushed into my headrest, except when we brake, then my head is launched forward. Going down, I could do nothing except let my chin rest on my chest. My scarf was too tight and I felt like I was being garotted. Other than that, the sun was blazing but the wind was icy cold. In short, I’d mostly be sitting inside. Not exactly what I was hoping for. The next day, we went down to another village, where we found a sunny terrace. By that afternoon, we had moved to a patio closer to the slope. A lot to take in. It did take Hein and Lieke (Hein couldn’t manage on his own) a lot of effort to get me and my wheelchair up there. For the first two days, when we didn’t have a routine down, I wondered why I was subjecting myself to this. For my family, of course, but after a while I started to enjoy being outside and taking in my surroundings. The four-star hotel was completely wheelchair-accessible. There were ten other wheelchair bound guests (they were a bit more athletic, skiing in special skiing wheelchairs). The food was prepared the way I wanted it. The kids went tobogganing. And of course, we had a Tyrolean theme night, with hits like “Es ist so toll, ich bin der Anton aus Tirol”. We visited Innsbruck on our last day there. It’s a city everyone talks about when going on a skiing holiday, but nobody actually visits. I wasn’t expecting it to be as beautiful as it was, with sophisticated-looking residents, surrounded by white mountains and low-flying aeroplanes. On Saturday we watched the German version of Idols, “Deutschland sucht ein Superstar”, but it was a lot less fun than ours. On our return journey I got the sad news that my favourite Idols contestant had been voted off.
It was amazing to experience one more skiing holiday. My everlasting thanks to Hein, Lieke and grandma Lia.