Diary March 2001


Floor takes a day off

Floor was pushed to her limit, what with her daily acting repetitions, having writing a book report, two impending quizzes and a sizeable history deficit. In short: time for a sick day. At 9 o’clock Floor came downstairs, pyjama clad. She didn’t change out of it that day. What she did do that day was work. Tests, reports and four history chapters on the three religions were all finished and prepared by the end of the day. I found it homely. I learnt a lot about religion and I’ll never confuse those new Eastern-European countries again.

Ward claims a part of the garden

Ward is a nature lover. At least, he loves the horticulture in our back garden. In previous years he was already allowed to pick some annuals; marigolds and tobacco plants in the colours of Ajax (his favourite football team). I’m afraid that such slim pickings won’t be enough for him this year. Ward has been preoccupied with a potato all winter. He put it in water until it rooted and eventually grew a bud. Now he wants to use a part of the garden. Grandpa Kees is going to remove the plants from a section of the garden. We’re going to build Ward a miniscule vegetable patch, 1 square metre. We want to plant a bit of everything: carrots, radishes, leeks, lettuce, etc., a tiny amount of each. I greatly enjoy doing this with Ward.

National ALS Day

This was my third ALS day. I was looking forward to it, especially meeting all of my ALS correspondents and the people who designed my book. However, I tend to forget my usual “wait-and-see” approach, so when I entered I immediately felt overwhelmed. Immediately after we had parked, we were greeted by a hostess who did not know when to back down. Even in the coatroom, she wanted to be helpful, but all she did was tugging on the back of my jacket. Because of the commotion, Hein forgot my preferred routines too, so the whole thing was a mess. We were stuck in a queue of wheelchairs, all of them headed to the lecture hall. We wanted to go to the break room, which was the other way. I was almost inadvertently taken to the lecture by my mother-in-law, but I was able to prevent it and I was allowed to go to the now vacant break room with Hein. After a bit of acclimatisation and a cup of chocolate milk, I was ready to go. I’ll be honest, the National ALS Day is hugely confrontational. Involuntarily, I started comparing; not just myself and others, but others and how they were one year ago. The emails I got afterwards told me that I wasn’t the only one who did.
The lecture turned out to be a large plea for official trial runs. Discussion about Maurits van Selms was abruptly ended. After the officious part of the conference, it was party time. Many familiar faces, lots of fun. Because I can’t shake hands, the hand of one of my fellow patients is put into my palm. We intimately sat there for minutes. Hein acted as my interpreter. My appreciation for the people who understand me grew immensely. Whenever I would talk to a fellow patient, I’d stare at them, unable to understand a thing. I’d quickly look around in search of a person willing to translate. Lo and behold, every single spouse interpreted their partner’s words to a T. It’s not the only way of doing it. I asked Jan van Atten a question and after spending some time behind his writing tablet, he turned it around having spelled out his answer. Don’t you dare interrupt his writing process. We’re still able to converse, however clumsily. I recognise myself in their strange laughter, the unintentional noises they make sometimes and odd grimaces. To the uninitiated we must look like a bunch of weird pathetic sods. Despite that, I enjoyed myself immensely and I noticed that everyone was very spirited. We didn’t leave until the end of the conference. At the end I didn’t feel tired but rather elated.


Besides having trouble not finding my own state of being toe-curling sometimes, I do actually have toes that curl, much like my fingers. Everytime I put on my shoes in the morning, I have to make sure that my toes are decently straight when I push them into my shoe. My feet are also contractured, meaning I walk on my toes, followed by my heels. I can stand reasonably well with my modified shoes. Once a day, I walk from my bed to the bathroom. Sometimes, I accidentally stand on the top side of my toes. That’s not what toes are made for. In short: my toes have a lot to put up with. Especially my big toes. My right big toe has gotten infected, so I bathe it in a Epsom salt bath every night. I don’t mind a foot bath, but I hope my toe heals soon.


I’m a procrastinator. I try to hold on to my old ways as long as possible and only when I can’t go on any longer do I quit. During my confrontation with other PALS, my procrastination became extra clear. They got a PEG as a precaution, got artificial respiration before having trouble breathing at night and had wheelchairs and machines more advanced than their own diseases. Not me. During the day, I use an ordinary desk chair (it is electrically adjustable, though), I have no communication equipment on my wheelchair, try to have as few aides as possible and have postponed respiratory equipment indefinitely. I’m not the only one, though. There are two kinds of ALS patients: the procrastinators and the anticipators.

Up to date

I’d been building up a backlog these past few months; more than 10 unanswered emails, not much progress on my diary, no inspiration for the kids’ newsletters. Now that I have a head mouse though, I’m up to date again. It’s a new sensation. I’m starting to take more initiative in writing emails, not just limiting myself to answering them. I’ve also started playing FreeCell again, useless as it may be. The thing is: I still have to write two letters, and I’m all out of excuses to postpone them.

NRC interview

We had a tense breakfast on Saturday. The mail had already been delivered, so the next thud on the doormat would have to be the newspaper. It got here at 12:30. We were surprised to see I had gotten a whole page, with a huge picture. Through the weeping, I smiled. At 13:00 I received my first email about the article, from one of the people who worked on my book. At 14:00, the first email from a stranger arrived. They must have booted up their PC as soon as they had read the paper. Right now it’s Monday, three days and 25 emails on. A quarter of them from friends, a quarter from strangers and half of them from ex-colleagues or old housemates from my college days. They were surprising and sweet. I got lots of compliments about the picture. Sometimes, I wonder: “why do I keep putting myself in the limelight?” Although every time I do, it does feel satisfying.