Diary February 2000



Ward received a thank-you card from my ex-colleague Jan for acting as a translator whenever he couldn’t understand what I was saying. Ward had to constantly pause and resume his video game, for which Jan apologised. I sometimes forget that, despite all of the external help I get, I rely the most on my family. Last Saturday Ward and I had the house to ourselves while Hein was out shopping. Ward wanted to play outside and asked me if he could. “Of course,” I told him. “But who’s going to turn the pages of your newspaper?” he asked me. “You know what? I’ll pop in every once in awhile to see if you need anything.” Detecting and solving a problem in a matter of seconds. 8 years old and already a problem solver. I have a splendid son!


Lately I’ve been going to bed late, way too late. I’ll notice the following day. Over the course of the afternoon I’ll crash. When I do, I usually take a nap by resting my head on a pillow on the dinner table. It doesn’t matter how noisy the room gets, I’ll sleep through anything. After about an hour, I’ll wake up, all rested up. As a result, I can’t sleep at night and thus, stay up late. Sleep is a fickle pleasure in itself. Every night since I got sick has been marred sudden awakenings. Stretching my stiff legs usually helps. Turning myself on my side in bed has become difficult since I can’t exert my arms anymore. For instance, I can’t adjust the covers when they slide off me. It wasn’t a big deal during the summer, but when it gets colder turning in bed turns into a real chore. I usually wake Hein up. The turning itself has become harder too. Sometimes, my head is too limp to turn the same way as my body, not to mention that my arms have gone from tools to obstacles. They’re always in the way. It doesn’t help that I often wake up because of my cramping legs. Put those together and you’ll have a recipe for an awful night’s rest. I have discovered that a small tablet of Valium helps with my muscle problems. It makes it so I have to shift less, meaning Hein can get some sleep too. It is, however, just a drug. Luckily, when we do wake up at night, we’re quick to fall asleep again. Never any nightly spats, for as long as I’ve had ALS.

The page-turner

I haven’t been able to read a book since the summer of 1999. I’d heard about a machine that could turn the pages for you, though, and I was very interested. I’d already had a demonstration in november. The sales representative proudly told me that this machine was the best one on the market at that time. Soon though, it turned out that the machine was only suited for hardcover books and only really worked with well-read library books. The demonstration was a fiasco. Pages were turned by the dozens or not at all. Magazines were a complete disaster. None of the ones we took were of the format that the machine was made for. Without an ounce of shame for his product, the sales rep told us the price: 8000 guilders. “Don’t worry though, your healthcare covers it.” What a fraud. No thanks.
My occupational therapist found a different supplier and by the end of January another demonstration was scheduled (most appliances for disabled people are sold door to door and since most of the salesmen live in the easternmost part of the country, those salesmen have to drive quite a long way to get to me. So much for healthcare coverage). The salesman installed the machine and got to work. It was a large, solid-looking machine, mostly made of English mahogany, with a large suction cup attached. Every page was individually sucked up and turned with a small electrical arm (not too quietly either). Despite the noise, the machine worked perfectly. Price tag: 3000 guilders.
Floor and Ward watched the demonstration attentively. As soon as the sales rep had departed, they bombarded me with questions. “Mum, are you really going to buy that behemoth?” “Where will we put it?”, all while Floor imitated the machine’s noises. Admittedly, the thing was quite noisy. I still have my doubts. It’d take up lots of space, which experience tells me I’m not going to use. Last night we came to a conclusion. The kids, who were against the purchase, promised to stay on as my trusty “page-turners”.


Every human has their own quirks. I, for instance, hate the sensation of sopping wet washcloths on my face, like to sleep with one arm above my covers and prefer to blow my nose in unfolded handkerchiefs, one nostril at a time. Nothing wrong with that. These things didn’t use to be a big deal. When you’re wholly dependent on someone else, though, communication is paramount. Of course, the inevitable question gets asked: “why?” That’s a good question. My answer is usually: “I don’t know, that’s why.”


We visited Amsterdam on Sunday. I hadn’t been for about 2 and a half years. Back when I was a small-town girl I used to visit the big city about three times a year, on day trips. All of the memories of those well-spent days came flooding back on Sunday. What a wondrous worldly city, Amsterdam is. For the kids we had planned a visit to Madame Tussauds. I just wish we’d gone to Hotel Americain for a drink. Too bad I had a runny nose for the entire visit, it didn’t make me look particularly appetizing. I’d like to return to Amsterdam sometime during Spring, without the kids.


This February my web page was visited more than everbefore. Today is the 17th of February and I’ve already had 700 hits and even more traffic. Complete strangers comment on my page and I love it. Maybe it has something to do with my explicit request to leave a reply in my last diary entry. A surprising number of replies is from Belgium. Most correspondence I get is from people who are close to ALS patients or work with patients. I haven’t had direct contact with a PALS (Person with ALS, good wordplay) yet. Apparently getting online is still a big step for most of us.

Lucky Letters

I had a group of ex-colleagues over this weekend; the CM (consumer market) ladies at KPN (my old telecom company). We used to be so heavily involved in Primafoon and the like, but nowadays only one of us is still employed at KPN. I really liked our little reunions because we were all so vastly different. The directions our lives took after KPN reflected how varied our group was. There hadn’t been a meeting after my diagnosis. I was pretty nervous, but then again, so were they. Being confronted with my degeneration can’t have been fun for them. They arrived at 8 o’clock sharp. I was sat at the dinner table, laptop at the ready so the guests could read along. It was like a party game. Everyone tried to predict what I was going to write next. They didn’t do half-bad. Sometimes I’d overzealously try to speak verbally, but the response I’d get were three confused looks and fervent guesswork about what I was saying. At the end of the meeting I got the biggest compliment of the night. One of my colleagues told me that, despite everything, she thought I was remarkably ordinary. Strangely, everyone expects you to turn into a sad wreck when you have a disease like ALS. Let me tell you once and for all: that’s all a load of projection. I had a delightful night. Hein, meanwhile, was desperately curious about my colleagues and their lives.

The musical

It’s finally in: the concept for Floor’s 6th grade school musical, written by her teachers. I immediately started working on it. I love being creative and contributing to projects. Right now I’m eagerly awaiting my script’s reception. I hope it’s positive. It’s supposed to be a Westside Story-type play. It kind of reflects reality, because 6th grade is divided in two very competitive factions. The only real problem I ran into was that the teachers wanted the humor to be absurdist, something I’m not at all good at. It’s not my kind of comedy, not to mention that is has to be executed very well to actually be absurdist. I hope it doesn’t show in my writing, because I’m really looking forward to seeing it on stage. I’m already visualising it. Luckily, the next day I got the go-ahead to write the rest of the script.

The Sixth Sense

I’ve been getting a lot more messages from people who want to come visit me. People I haven’t talked to or seen for a long time. Why? Is my webpage working its magic? Did people just need time to adjust to my illness like me? Is it because I’ve become more outgoing? Is it my recent surge in email activity? Or, a small unwelcome voice tells me, is it because people think to themselves “I’d better visit Jeanet soon, before it’s too late”? I reply to them nonetheless, but how jovial my response is depends on my mood.

School visit

I haven’t been to a school during school hours since my diagnosis. Last night, Ward’s school had an exposition of its students’ creations. This year’s theme was fairytales, sagas, legends and myths. I was most excited to see what Ward had made. Luckily, his classroom was relatively quiet. Floor was cast as Sleeping Beauty in a play, for which I was equally excited. We made our way to the school’s main building. It was absolutely crowded. At the entrance we ran into Tiddo, Floor’s teacher. He told us that Floor had aced her finals. It was a bit overwhelming. I burst into tears. Nonetheless, we took the stair lift and watched the play, but I felt suffocated in the crowd. I don’t know what to think of last night. It was a big personal victory, but the only thing I truly enjoyed was Ward’s exposition.