Diary August 2001


A phone call at quarter past eight in the morning

For one and a half years, I’ve emailed with Roel van der Kley, a fellow ALS patient. I always enjoy our correspondence. He has a good sense of humor and a knack for relativisation. It’s odd, but I have no mental image of Roel because we’ve never met. Roel shys away from ALS Days, but that may be because he spends lots of time in Tuscany. Just when we had agreed to meet up, and Hein even spoke to him on the phone, we got a phone call early in the morning. Roel died peacefully in his sleep on the evening of August 5th. I reread all of his letters on Monday. They’re gems. Many tears were shed.

Cassette tapes

Before the holidays, I realised that “reading” books on cassettes would be a good holiday activity for me. On Friday afternoon, way too late of course, we called the library for the blind in Nijmegen. But libraries for the blind are closed on Friday afternoon. Same goes for the one in The Hague. My mother will stop by there on Monday and bring me two of them. I’ve picked A Year in the Provence by Peter Mayle and a book by Marjan Berk. It takes some getting used to listening to tapes in company, headphones slip off my head. A Year in the Provence is a particularly good book and very well-read. It leaves me wanting more. I solved the problem of not being able to skip boring pages by simply falling asleep. By now, we’ve received the catalog of the Nijmegen library. There’s a huge selection and excellent service.

New shoes

My left foot is currently very swollen. It’s because of my lack of exercise and constantly dangling legs. It gets worse when it’s warm. It got so bad that Hein could barely get my shoes on. On the day before we departed we bought a new pair of shoes. They’re the same as my old ones, but two sizes larger. Bigger shoes are more expensive, but at least I won’t have trouble putting them on again.

We depart

It feels weird to go on holiday while everyone else is arriving back home. On the other hand, we’ve been looking forward to it, while also prolonging our holiday spirit and the weather was very kind. The kids were able to keep busy after camp and they had plenty of friends who were still in the country to swim, play in the street or go to the beach with. That’s not always a sure thing.

I’ve made lists and it looks like all arrangements have been made. On Wednesday at 8:30 my mother- and sister-in-law will pick us up (but Lieke overslept, making it closer to 10 AM). For the past few years we’ve gone on holiday with them and my nephew Tim, a fellow ex-freshman. I was in Lieke’s car, which fortunately had air conditioning, because it’s going to be hot. We put the orphan chickens in the coop by the front door. The neighbourhood kids will take care of them. Hopefully, the cats will leave them alone.

The Atlantic coast


When we booked this trip in January, I was full of doubts. Would I still be around? Would I need a nighttime breathing apparatus? In what condition would I be? Still, I persevered and now I’m here, with none of the aforementioned complications. It doesn’t mean that I’m taking departing lightly. I’m dreading the journey itself. Will it go alright? Can I still sit in a normal car? What will the hygienic faculties be like? Like that, I’m full of little fears. On the outward journey Floor was in the car with me. I can still sit in passenger seats, though I can’t move my right leg by myself. Once in a while, Floor does it for me, to adjust my posture. It wasn’t a big deal on the way there.


We spent the first four nights in a chambre d’hotel, a farmhouse hotel, run by a Dutch couple in Brittany close to Mont St. Michel. We were hospitably greeted with a delicious meal in the kitchen, drinks and merriment. We immediately decided to have dinner with them for the rest of our stay. He is an artist and a great storyteller, she is very helpful. There are chickens (we exchanged chicken stories), a goat, horse, dog and two cats, of whom the three month old cat Zelia is our favourite. She likes to sleep on handicapped people’s laps, those don’t move as much. Thus, to Floor’s envy, she spent lots of time snoring on my lap. There was a pingpong table which was very popular with the kids. The invalid-accessible faculties are a bit primitive; the toilet is too tall and the house has a few thresholds. Still, I love that owners of privately-owned hotels are willing to make those adjustments. We weren’t idle. We visited St. Malo, Mont St. Michel, the beach, coastal towns, Dol de Bretagne and Mont Dol. The weather was good; not too hot, sun and clouds.


Our next destination is a wheelchair-accessible bungalow park. The brain behind the operation, Monique Schlieman, made her dream reality. 400 volunteers spent years building the park. Beds welded by hand, bed linens sewn by hand. The garden furniture was donated by Hartman, the tiles by Sphinx, the glass by Leerdam, etc. etc. and it looks very professional. The bungalows were constructed using a Southern French building style, including automatically irrigated gardens. The cottages are spacious and comfortable. There’s a public pool and a terrace. There are statues everywhere, made by a satisfied customer. The staff consists of volunteers who are always ready to help. There are original plays put on by (handicapped) kids in an open-air theatre. The whole thing is oozing with love and care. www.l-accolade.nl

There are only two downsides. The bungalows are meant to be private. My view is just the garden, a big contrast with the camping last year, where I could spend days looking at the view. I think invalids like having something to look at. Furthermore, the kids will have an easier time with less privacy. Secondly, the park is located on Ile d’Oleron, an island full of beaches best explored on a bicycle and inaccessible to invalids. Other than that, the island is fairly boring.

Ile d’Oleron

Like most postcards we received said, it was way too hot. The same goes on our end. For the first few days, it’s nice. We celebrated Floor’s birthday, went to the market in the morning and sat poolside. After that, Hein and the kids rented bikes and went on tours, while my mother- and sister-in-law Lieke and I stayed behind. After one o’clock we went inside. We opened two opposing doors and I spent the rest of the afternoon in the draft, listening to my book. I barely fit in my shorts, so I haven’t lost weight. At one point we gave into the temptation to go on a trip our own; a train tour. I sweated buckets. Not successful. At night we played Scrabble, a game I’m very good at (oh, the things I have to do to keep my ego sated), or went to open-air theatre shows. On Saturday my thighs started aching from all of the sitting I’d been doing. I also missed my newspapers. I was just sitting around, while the others were reading, swimming, writing postcards etc. We bought a newspaper and went out more; to the beach, and after four we visited some villages. I felt better. The others went sailing on an old ship and visited a fort surrounded by the sea, while Hein and I stayed behind. Still, I had a newspaper to dig through. We experienced a terrible thunderstorm, the lights went out and the reception flooded. All in all, I’m content.

The return journey

Before, I was optimistic. “It’ll be a cakewalk”, I thought. 1100 kilometres on one day is manageable. When push came to shove, I had my doubts. But we left early for us: 8:30 sharp. Ward is in charge of moving my right leg on the return journey. At three we were in Paris. We stopped for a bit. By then, I was already nauseous and my headache. At seven, we left Paris behind us. Four hours, and only 60 kilometres. With my constant fear of losing sight of each other. All of my equipment and Hein were in the other car, so I sat in the car, alert and tense, fully focused on following our white van. At 2AM we got back home. I was the only one the journey broke.


So that’s done. I’m thankful to my travelling companions for making this possible for me. When I see myself on video, I make myself a little upset. I look so unimpressive. Nonetheless, I feel completely accepted. While it wasn’t as spectacular as last year, it was a nice holiday and I was surrounded by love. I also greatly admire the people who made my accomodation possible.

Back home

How the chickens have grown. How beautiful the garden looks. How nice, receiving postage and emails. How fun, seeing our friends at an “end of holiday” get-together. How lovely, seeing my mother again. How unfortunate that it’s dark so early. How regrettable that my holiday spirit has truly faded now.