Diary July 2003



Looking to the side, especially to the right, is hard, because of my neck. When we’re out for coffee, I ask my partner to sit half a metre in front of me, taking up most of my field of view, so I don’t have to strain my neck. City sightseeing, going to museums or going to fairs are equally difficult. My companions see so much more than I do, to the sides at least. It means that, during fairs, I’m always looking ahead, gazing the next booth (which is never quite as interesting as the one my companion is perusing). In cities, museums and churches, a lot of beautiful things go unseen.


The old me remembers sun-kissed holidays, starting the day off with croissants and buttered baguettes, eating salads on the patio, reading books, barbecuing, hiking, swimming, in short, the things good holidays are made of. But the new me can’t read books, can’t go buy baguettes, hates the heat and hates going for drives on bad roads because of the way my head bobs around. In short, the new me has no business going on holiday. But the new me isn’t that assertive yet. The old me makes the tempting offer “Let’s go to France.” And the new me happily accepted.

Memories are funny. Bad experiences gradually fade. The new me is guilty as charged in that regard. Two years ago, after a sweltering holiday in France, I thought: “Never again.” But, just a year later, the temptation got the better of me again. During the first few boiling days in France, the hottest, I thought to myself: “Why am I doing this to myself?” But next year, when the old me tempts the new me to go on another holiday in the heat, please stop me.

The journey

We couldn’t have picked a worse day to depart. Not because of traffic, but because of the heat. According to our neighbour who had gone camping that Sunday, it was 36°C in the shade. When we drove past a thermometer at 23:00 it was still 29°C. And we don’t have air conditioning in the car. My feet and arms were swollen and aching. I didn’t have the strength to keep my head on my headrest. I was boiling. Every 5 minutes I had to be sprayed down with water. Every hour I needed some time out of the car. It didn’t do wonders for our moods and pace either. What moron decided to go to France? We arrived, only to find that our cottage was like an oven. Luckily, Hein’s mother brought a fan and a breeze picked up. The kids slept outside. I slept in my chair. This holiday was off to a good start.

The stay

We were in northern Dordogne, staying in a cottage built by the MiVa Foundation on a chateau campground. It was small but had all necessary amenities, including a patient lift. The kids slept in a tent. There was abundant shade. It stayed too hot for two more days, but then a rainstorm cooled the place down. Luckily there was a lot to do. We were in a nature-rich region with myriad idyllic villages and towns. Hein and the kids went mountain biking and canoeing. The fun thing about France is that there’s no TV so we spend that time playing games instead. Every day is spent outside. Our cottage had a pond with a pier. They fished a lot. There was a lot to see. And every morning we got our good old fashioned Dutch newspaper. Lieke, Hein’s sister, relieved Hein of some of his duties, so he could get some relaxation too. We did the return journey by night, which was a lot less warm and a lot less straining. Floor and Ward took turns keeping Hein awake behind the wheel. Well, I had fun after all. By now, I’ve looked at the Vendée as a potential holiday destination for next year.


I came home to 85 unread emails. 85 of them were spam, all of which got my email from my homepage. 6 of them even contained viruses. Despicable.


On Friday, July 25th, 2003, Vincent Straatman, the founder of the Valscher Foundation passed away. It shouldn’t have been surprising, but it was shocking and upsetting to me. Vincent was 34 and got ALS when he was 30. He was beloved and achieved a lot.

Turbulent nights

My nights have become too hot. I wake up often, twisting and turning in bed. Because of that, my legs seize up, leading to more twisting and turning. Besides that, I’m plagued by nighttime intrusive thoughts. When I’ve played too much scrabble, I’ll dream that my legs are letters, only able to spell out “on” and “you” (they’re almost unmovable). Every time I ask Hein to help turn me on my side, I’m hoping he’ll give me some new letters. To no avail, of course. Eventually these thoughts make me so sick that I have to just get out of bed. Like that, my head is filled with intrusive made-up scenarios. A good night’s rest is no longer guaranteed. Disappointing, because sleeping became easier over the past six months. Every night, I ask God to not make me wake Hein up as much.