Diary December 2000



I’ve almost finished the Sinterklaas poems, not just mine but Hein’s and Ward’s too. I’ve taken it upon myself to write them for the others. Floor is the only one who wrote hers herself. We celebrated Sinterklaas with Hein’s family; 9 adults and 4 children. Very homey. I’ve always enjoyed writing poems and still do, even though my heart wasn’t really in it this year. I couldn’t help but laugh raucously whenever one of my poems was read aloud. Unlike most of the family, I tend to centre my poem around the recipients characteristics or funny things that happened to them that year. A bit of friendly banter is an inherent part of Sinterklaas. We didn’t go crazy this year; not too many presents, evenly distributed and the kids weren’t circling the pile of gifts like greedy vultures. The kids liked their presents and the poem ceremony didn’t take as long as I feared.


I’ve caught a cold, which isn’t fun when you can’t blow your nose. Drinking with a stuffy nose is a chore too because I don’t get enough oxygen when I do. My cold started on the day we celebrated Sinterklaas, which didn’t exactly put me in the holiday spirit. Hein had to blow my nose constantly. It made me really self-aware, especially because we were in company. My eyes were watery too. After the party I was completely spent. I sat in my chair doing nothing for three days. Strangely enough, I did sleep well.

Dancer in the Dark

I occasionally go to the movies with Marjolein. We always go to a theatre that specialises in arthouse. Marjolein always wants to know if the movie is drama-heavy beforehand, in case she needs to bring tissues. This time was no different. “Not at all”, her husband Erik told her, “Dancer in the Dark is not that emotional”. At ease, we arrived at the theatre. Admittedly, different rules apply where I’m concerned, but calling Dancer in the Dark “not that emotional” is doing it a disservice. At the end of the movie, Björk is executed by hanging, shown in all of its glory with the emotions expected from someone on death row. I bawled my eyes out. Erik’s advice all but confirmed my theory that all men are from Mars.
Two weeks later we decided to go see a whole lot less complicated movie, a simple comedy movie called Babs. It was supposed to be the Christmas movie of the year. It ran for only one week in the cinema we went to. I went with seven other women. One might call the movie simplistic, but not much more than that. I think I actually prefer crying my eyes out.

The straw

In last year’s Christmas letter I wrote about using a straw. It actually taught the people around me a valuable lesson. My straw hasn’t been bent since. Some people actually started putting them in my drink upside down to prevent bending. Whenever a server at a cafe carefully bent my straw forward, my companion shoots me a knowing look, telling me they know better. It’s been burnt into their brains. Habits are sometimes subject to change, however. Now that my head and body get so tired from bending over towards the table to take sips and I’ve started asking people to lift my drink up to my face, things are completely different. I actually welcome a bent straw in that situation, but good luck trying to explain that to my expertly trained helpers. Dutifully, all of my straws are straightened.


We visited Delft. It started raining immediately, so we evacuated to a cafe. After that we went to Museum Het Prinsenhof. There wasn’t a doubt in our minds that the museum wasn’t wheelchair-accessible, but this was one of them. By maneuvering around the smaller stairs we were at least able to see the ground floor. I left a note about it to the museum’s manager, an old roommate of mine. I haven’t heard from her yet. Making the place wheelchair-accessible wouldn’t be too much of a hassle. It’s saddening that a public space isn’t accessible for some of us. In the USA that’s actually illegal. Het Prinsenhof is the first museum I remember visiting. William of Orange was shot to death here. The bullet holes are still visible in the wall. My kids were awestruck, like I was back in the day. Of course, we reenacted the assassination.

Fellow ALS patients

I’ve been getting lots of responses to my homepage. An unknown reader told me that my September diary wasn’t available. Another recommended a contraceptive injection to prevent menstruation after reading my November entry. A huge chunk of correspondence from the site consists of requests for information. That’s what it’s all about. I’ve noticed that not many ALS patients are actually in contact with their peers. Is this what our virtual community has come to? There needs to be a virtual place for patients to come together and find sympathy and encouragement. Where is the willingness to look for support amongst ourselves? Why is everyone withdrawing back into their shells? Take America, for example. Barely any government initiatives and yet the country is full of self-help groups, which is probably because of the aforementioned lack of governmental regulation. Still, there is a strong sense of community there. The same goes for Belgium, not too much government initiative and a tight-knit ALS community. In the Netherlands, the government is helpful to such a degree that patients barely interact. I recognise it in myself too, but that doesn’t mean I don’t think it’s a shame. I hope the communities that do exist get bigger.

My best Christmas present

It’s here! I received a package in the mail containing 199 copies of my book. Amazing! Beautiful. A surprising cover (better looking than the previous version), coloured in a way that reflects the contents of the book. Its layout looks thought-out and very tidy. I’m ecstatic and my family is very impressed too. Sadly, the names of the designer and editor were not included in the credits. Thank you, Renske Marina van Beek and Irma Jousma. And a special thanks to Vincent for putting me onto writing it.
At first I promised to be patient, but as time went on curiosity got the better of me and I started informing about when exactly my booklet would arrive. I have never been a patient person. I didn’t wait in vain, the book is great.

Light pneumonia

I went from healthy to sick seemingly overnight. I didn’t feel like using my PC or eating, I felt tired and shaky, feeling cold and hot at the same time. Tineke bought an ear thermometer, but I wasn’t that much hotter than usual. Just to be sure, we called our GP in the afternoon. We were supposed to have an early Christmas party that evening, but I wasn’t feeling up to it. The doctor found my breathing a bit ragged. Maybe it’s some residue from my last cold that had gotten stuck. Hein had to leave the party in order to get me some antibiotics. My first ALS pneumonia. Luckily, we caught it early and the antibiotics are doing their magic. I feel better already, even though my temperature is still rising. Sorry about the Christmas party.

Kees & Co.

I like watching comedy shows with the family, two in particular: Het Zonnetje in Huis and Kees & Co. When my sister-in-law told us that she had the opportunity to sit in at a taping of Kees & Co., we were eager to come with her. We went yesterday. We arrived in Amsterdam way too early. We had a good time, but at the one-hour mark we were ready to call it quits. It wasn’t a fantastic episode, but I’m still a huge fan of the main actress. Floor asked all of the actors for an autograph and has vowed to visit more TV show tapings in the future. She already has a designated autograph booklet. The show we saw will be broadcast on January 2nd.


I wrote my own “manual”. It describes how to do certain procedures and my likes and dislikes during them. Yesterday I read an old article about an ALS patient who wrote a red booklet full of instructions for his 28 caretakers. My manual is currently only one page long. It’s becoming harder to give precise directions and I do like the comfort of having carers who know what I like and dislike. Much like the author of the newspaper article, I often wonder if I’m asking too much; everyone is doing their best, aren’t they? Are my comments a detriment to their good intentions? I feel like ungrateful. Still, it pleases me when people follow my instructions. I feel more dignified, like I’m in some way still in control of my life. The fact that my manual is only one page long is due to Hein, who cares for me the most and knows me through and through.

Christmas dinner

I had never noticed how much of a feeding frenzy Christmas really is. Gone are the simple nutritious suppers. Instead, the evenings are filled with finger food, from 5 till 11 o’clock, three days in a row. I can barely eat any of them. Every time the food has to be adapted to be edible, so the food is eating at me as much as I’m eating it. There I am, with a napkin, carer at my side, feeding me little bites of finger food. Not a pretty picture.


December is a peculiar but ultimately rewarding month. Lots of things happened and despite me being ill for a lot of it I do feel better than I did in November. The sun has come out again, so I can bathe in its rays while sitting next to the window. We went for a stroll in the show and to complete my holiday spirit, we had some gluhwein. We put the Christmas tree up early, on the 9th. I’m glad to say that this year’s tree barely lost any fir needles. We lit candles as often as we could. A busy Christmas: playing bridge with friends on Christmas Eve, spending Christmas day with my brother Anton and boxing day with Hein’s family. We were always welcome somewhere. We slept in every day, visited Chicago and watched many films.
We spent New Year’s Eve playing Trivial Pursuit and Party & Co. with the kids in two teams, boys vs. girls. Sadly, there wasn’t a win in the books for the ladies. 12 o’clock was an emotional moment for me. I always hope that everyone takes it easy when the bell chimes, but at the slightest deviation from normalcy I burst into tears. We had fireworks, which the kids eagerly set off. I played Rummikub with my mother on New Year’s Day and January 2nd was spent with the family at an indoor ski slope. Too bad there was a set of stairs that prevented my and my mother from being onlookers. We felt kind of lost after that. Hein went to work again today which spells the end of Christmas break, even though the kids’ school hasn’t started yet.

Christmas letter 2000

Year three of my annual Christmas letter. Life is becoming harder, both for me and for my family. Inconveniences like slowly losing the ability to type with my mouse, my drooping head, my stiff body and legs preventing me from sitting up straight and my ever-deteriorating speaking abilities force me to rely on the care and energy of my family more and more. Hein, who is always there for me and who spends most of his attention on me. The kids, who are my go-to cup holders. Not to mention my carers. Last year I could have called them my “sitters”, but caretaker has become a more apt term by now. I need help with everything.
Despite all of that, we still visited the French Riviera, the World Expo in Hannover and a recording session of one of my favourite shows. We spent the holiday season among friends and family, which I enjoyed immensely. We want to thank all of you for your attentiveness and willingness to help me in the past year, in whatever way you did. We hope we can count on your help next year too.
We wish you a merry Christmas and a happy New Year!
Lots of love from Jeanet, Hein, Floor and Ward