Diary October 2000



Recently, I had gotten the idea in my head that Ward was distancing himself from me. Not anymore. He has gotten more eager to help and he has gotten better at understanding me. He loves talking to me about the goings-on at school and his friends. Ward and a friend had organised a football tournament for neighbourhood kids. For one week, our front door was adorned with a registration paper where no less than 22 kids signed up for the tournament, ranging in age from 7 to 14. No adults allowed! At night, Ward pored over the team compositions, having already agreed upon a suitable refereeing schedule with his friend. Saturday was a day of great tension and excitement as Ward worked his way toward the tournament. At four o’clock, zero hour had come. The street was empty. We went to watch the tournament, but we weren’t allowed on the pitch. We could hear them having fun in the distance, though. At six, they came home with big grins on their faces; Floor and Ward’s team had won the tournament. Maybe the team compositions weren’t as balanced as advertised.

Self monitoring

I am my own greatest watchman; am I getting worse or am I stable? It’s a question not easily answered. There’s always an element of wishful thinking. Wishes and dreams aside, I have noticed that my neck is getting worse, my arms are getting heavier and my legs are stiffer than ever. Swallowing, eating and talking are the only things that are staying level. What about my breathing? Does talking make me winded? Does using straws still work? How do I feel when I wake up? Every three months, my lung capacity is checked, which fluctuates tremendously. Last year my checkups came up: 1.8L, 2.0L, 1.45L and 1.6L. The latest check was in September. I wasn’t at peak performance. My heart was pounding when we got to the hospital. The nurse’s encouraging words didn’t help much. By the time I took the test I was hyperventilating and it shows: 1.3L. Bummer. My blood test came up alright, though.


I’ve thought about it and came to the conclusion that my way of stepping back and looking at my situation is really a mechanism to keep myself from drowning in sorrow and keeping myself level. I’m distancing myself from my disease as a mode of self preservation. I’ve always had to make the a compromise between letting my emotions get the better of me and distancing myself from them completely. It’s a difficult combination, not easy to overcome.

Into the woods

The other day, we decided to visit a forest for the first time in a long time. At every bump in the road I slump in my chair. I often need help to sit upright again. To compensate I bowed down in my wheelchair, meaning I was completely stiff and cramped when we got back to the car. I really have to start using my new wheelchair. Granted, it’s huge, with large footrests and a headrest; obviously meant for seriously disabled people. The comfort it provides probably offsets its bulkiness. It’s adjustable, has an especially soft seat; it’s the Mercedes of wheelchairs. It’s becoming harder to convince myself that everything is fine. On October 3rd (a holiday in Leiden that celebrates the end of a siege in 1574) I went into town in my new wheelchair. It was a breath of fresh air. Hein didn’t need to hoist me up once and my head was comfortable. I wouldn’t mind doing it again. The weather was agreeable and the parade was wonderful. Going to the parade has been a yearly tradition for some time, but this year we decided to skip the fair.

Jacket weather

It’s getting colder, so my carers are once again struggling with the age-old question: how do we put a jacket on Jeanet? I have a fleece jacket that goes over my head, but my arms have to go through first. It’s a test of supreme spatial awareness. Women aren’t as good at it as men, but I’ll admit that my sample isn’t too varied; my brother and Hein are the only male jacket assistants. After my jacket is on, all there is left to do is removing the stair lift. It’s easy if you know the buttons, but one wrong button press can mess the whole thing up. I prefer to be present whenever anyone operates the lift, especially when I hear frustrated murmuring and worrying noises from the hall. When that’s done, however, there is nothing keeping me from a nice stroll.

Doctor’s visit

I don’t regularly go to a neurologist. I never have concrete questions to ask, so going to seen one only elevates my stress. I email the rehabilitation centre and if need be they visit me at home. I don’t mind. The fewer doctors, the better. I’ve got a good relationship with my GP, but I also see him on appointments only. I haven’t seen him in a while. The only medical professional I see regularly is the doctor who does my lung tests once every three months. At least they have a clear use: tracking the progress of my disease. I have the option to have a whole medical team at my disposal, but I decided against it. It would only sour my mood. I like most doctors I’ve visited, but from a young age I’ve hated visiting doctors. I do get biweekly visits from my physical therapist. I’ve known him for three years now (on October 28th I got the news that I didn’t have MS) and I trust him completely.


The most difficult thing about high school is how different revising for tests is. Floor reads all of the chapters before her test, but finding the bottom line is hard. I’ve started quizzing her after she received a few insufficient grades and forgot she had a test until the day beforehand. I’m glad she’s not the only freshman who is having a hard time adjusting to high school life. I quiz Floor occasionally, but Hein is the true quizmaster. Her curriculum isn’t too enormous, meaning we can quiz her by heart. I think Ward is becoming a bit envious of the attention Floor’s education is getting. We’ve taken to quizzing him before his topography tests, something I enjoy.

Eagle eyes

Despite my disability, I’m still the reigning queen of finding things. I’m the “finder of lost things”, be it homework, school newsletters, wallets or articles of clothing. Finding things in the living room comes most naturally to me. I have a certain image of the room in my head, all I have to do is spot the differences. The garden is another place where my eagle eyes are useful. There is no weed that can escape my sight. Yesterday, it turns out that I’m an excellent wildlife spotter too. While my company was completely oblivious, I spotted a deer hiding in the brush 20 meters away. It took the others a lot longer to spot it too. There were actually two deer, a rare sight so close to Amsterdam. It’s amazing how much I can still spot. Maybe my handicap has enhanced my other senses. Maybe I’m more alert because I worry less about talking. Either way, if you’ve lost something, you know who to call.

Theatre card

Theatre season has commenced again. Every year, our group of friends orders tickets for theatre shows before the season starts. Personally, I prefer kids’ shows, because they’re more fun than the typically pretentious adults’ shows. The biggest theatre in Leiden has two invalid seats. Not that many, but usually I’m the only one using them. Leiden has a beautiful atmospheric playhouse and the surrounding pubs aren’t bad either. We went to see Bernard, Sigrid Koetse’s final play. Opinions were divided on the quality of the play, but the afterparty at a local cafe was more warmly received.

High school visit

Floor has been in high school for two months now. In those two months I’ve visited her school more times than I’ve ever visited her old school. There was an information evening, a meeting with her mentor and a theatre night last Friday. Every freshman had worked on a sketch, dance or song. I loved theatre night; students working together, different colourful cultures, a great atmosphere and the acting wasn’t bad either. In a solo role, Floor played a posh mother in front of a room of 300 parents. We’ve been very content with her choice of high school so far.

World Expo

During autumn break we went to see the World Expo in Hannover. It had good reviews. My wheelchair wasn’t an obstacle as much as a blessing because we got to cut in line. It took some getting used to the huge convention halls and people whizzing by on scooters. The weather was not in our favour; windy and cold, though it could have been worse. At least it didn’t rain. I enjoyed the preferential treatment I got, but our company was technically too big. Usually it’s just the family who get to cut, so my two sisters-in-law were out of luck. Adding to the misery of having to wait for them at every turn, I had my period at the Expo, with all of the shakiness and headaches that come with it. Despite all of it, I found Hannover a terrific experience. I wasn’t too impressed by the cultural pavilions and expositions, but added up it was a very interesting unique experience. The kids were thrilled. They got passports which were stamped at every different national pavilion. By the end of our trip, they had been to a plethora of countries. We stayed in a cozy village called Bad Oeynhausen, an old-fashioned spa with a gorgeous spa house and a park adorned by breathtaking luminous fountains. My entourage only heightened my festive spirit. My room was perfectly wheelchair-accessible, I slept like a baby, I had my first ever pureed restaurant food and the two aunts who tagged along were great company. The kids even got to go for a swim. Could I ask for more?