Diary January 2002

The new year

After Monday, everything has gone back to normal. I wasn’t looking forward to it. I liked the holiday lifestyle: going to bed late and sleeping in. Being around Hein and the kids. And January is always such a boring month. I noticed that I was more anxious for Hein to come home during the first week. By the second week of January, I had adjusted by his comings and goings. Still, I will never not feel relieved when he gets home. Continue reading “Diary January 2002”

Dagboek februari 2002


It’s been a busy week. On Wednesday I had a homeopathy appointment and on Thursday I attended ALS Day in Uden. Ineke, a fellow ALS patient from Leiden and her boyfriend carpooled with us, which was nice, despite the fact that I fell asleep in the car. Uden is not closeby; two and a half hours there and two hours back. All of that for an event lasting only four hours. We were late and had already missed a lecture. The good news: they’re building a national ALS centre, a central point for information about ALS. After that, it was a pleasant, laid-back day with only a light programme. We sat at a table, surrounded by familiar faces. I had my ever first reflex zone massage too. While I didn’t have my feet massaged, my hands did get treated. According to my masseuse I shed a lot of toxins. I’ll feel much better tomorrow. It was a love-filled day. People who knew me from my homepage came up to me and some of them hugged me. They politely asked if they could beforehand, mind you. I’ve learned to appreciate days like these. Continue reading “Dagboek februari 2002”

Diary April 2002

Stop it

One of Hein’s uncles also has ALS. My mother-in-law keeps us informed. Today my mother-in-law, Floor and I were chatting around the dinner table. Our conversation was going down a grim avenue. I don’t want to discuss stuff like this with the children around. But how does one bring a conversation like this to a halt? I gestured at Floor a few times. My mother-in-law didn’t pick up on it. Walking away was not an option. Shifting the subject wasn’t either. Bluntly, I yelled “stop”. Seeing as my mother-in-law can’t understand what I say, Floor had to translate. And Floor thought I was being terribly rude. With some shame and an accusing look, she told her grandma to “stop”. My mother-in-law attempted to resurrect the conversation, but again I yelled “stop it”. Sure enough, the subject was dropped, but because of my insolence, Floor is mad at me. Granted, nuance and courtesy are things of the past for me. But how do I explain that to Floor? Continue reading “Diary April 2002”

Diary June 2002


Through my friend Tineke, who works at a charity in Leiden, I’ve gotten my hands on a report I get to edit. The report entails plans for an internet cafe in a poorer neighbourhood. It’s agreeable work; correcting, removing and clarifying the text. Besides, it’s a fun and well-thought-out project. I’ll also be involved in the organisation’s annual report. It’s a welcome addition to my daily routine. Continue reading “Diary June 2002”

Diary August 2002


We got back from Zeeland in mid-August, in the nip of time, just before temperatures soared. Hein, the kids and Lieke (my sister-in-law) took 5 days of sailing lessons. The first time they went on the Veere lake, they got caught in a thunderstorm. Luckily, they were quickly dragged to the shore. The following days were more fair and I was able to watch everything from the veranda, including their graduation from sailing school. Lakeside holidays are special; there’s a lot to do and to see, and by nightfall the still lake and the town of Veere behind it make for an extremely tranquil view. And the kids went water skiing, rode the banana (a six-man inflatable vessel in the shape of a banana, pulled by a motorboat at incredible speeds. I’d never heard of it but apparently every self-respecting lake has one) and played table tennis. Continue reading “Diary August 2002”

Diary September 2002


I often feel undignified. Using a bib, food in and around my mouth, lifting up my t-shirt in order to drink through my PEG and dropping my trousers for a contraceptive injection. The briefer these moments are, the better. Hein can’t wrap his head around that, only seeing the practical side of things. But my goodness, do I feel unhappy while wearing a bib or lifting up my shirt. I know that dignity is mental, but sometimes I have trouble remembering that. Continue reading “Diary September 2002”

Diary October 2002

PEG, continued

On Tuesday night my PEG gave out completely. Right now I have a 4cm tube sticking out of my stomach and the cap no longer fits. The contents of my stomach were spewing out. After closing the tube off with a clamp, my PEG spent the whole night dripping fluids. It’s not a good time, let me tell you. The next day, Floor discovered that the clip we use to reseal bags of peanuts was the perfect way to seal the tube; no leakage. Too bad it’s so huge. Every time Hein put me on a chair, there was a chance of it coming loose. My greatest fear was, and is, the tube retracting inward, meaning I would need a new endoscopy. Continue reading “Diary October 2002”

Diary November 2002

Hein 50

Well, it’s done. Everyone contributed to the newspaper. It turned out lovely and pretty. Apart from that we made a song and had a quiz before we gave him his present. This weekend, Hein will go to Berlin with a friend. The birthday party was a huge success. We’ll be looking back on this one for a long time.

I find evenings like this one difficult. I can’t talk, all I can do is nod and take everything in. It couldn’t be more different than how I felt during the planning stages. I was in my element. I felt relevant again, I was in control. It’s the feeling I used to have at work. Continue reading “Diary November 2002”

Diary December 2002

Restless nights

At night, my legs hurt and seize up. When they do, I have to stretch and turn, which I do on my own accord. Usually I’m able to turn back by myself, albeit paired with a lot of grunting and groaning, but still. I only need help when I’m flat on my back, which is when I ask Hein. Whenever I do, he turns me on my side. That happens two to three times a night. But the past few nights it happened five or six times, which doesn’t make for a good night’s rest. Maybe it’s because it was freezing. My legs spasm more easily in the cold. Sometimes it gets so bad that I need to get out of bed in panic. I spend the rest of the night in my chair. I stay upright using my legs, making them very sore the day after. The chair is not a great solution. Hein is becoming desperate. So am I.

From the frying pan into the fire

We’ve had ADSL for two months now. The upstairs computer isn’t connected yet, meaning the kids have to chat downstairs, meaning it was time to connect the upstairs computer too. On Saturday, December 7th, a specialist paid us a visit. In the morning we had two working PCs, but by the evening both of them were dismantled and the specialist took one of them with him for some tuning. Nothing about my PC was working. After failing to install software that would “fix everything”, he formatted my PC and reinstalled everything. Despite our expert’s mantra “I’m the boss here”, problems just kept stacking up. None of the parts were “communicating”. One week and 17 hours of work later, the problems seemed to be resolved. Except our upstairs computer still doesn’t have ADSL yet, and won’t until next year.

What’s a week like without my PC? Awful. Despite me often complaining about getting tired of using my PC, it made me appreciate how important it is to me again. I was just sitting around, getting increasingly more agitated every time I got the wrong impression about it being fixed again. I had to spell out my final few Sinterklaas poems to Ward, word by word. I can’t live without a computer. My whole schedule was messed up. I was awfully grumpy. I hope the final few problems will be resolved soon.

Pepper the guinea pig

On December 16th our guinea pig died. She was five years and two months old, as old as my erroneous MS diagnosis. She wasn’t eating her new food, no longer reacted to an opening fridge and the things she did eat, she rarely finished. When I saw her sleeping in an odd spot, I feared the worst. Floor couldn’t stand to look. Eventually, Ward made the diagnosis. Despite the fact that we should have paid more attention to her than we did, her death came as a shock. Next weekend, when Hein is in Berlin and I’m sleeping in my chair, I she won’t wake me up with her nocturnal bouts of running. Her place in front of the hearth is empty.

Throwing things out

I’m not much of a hoarder, I throw out things I no longer need with relative ease. And yet, my closets are bursting at the seams with unused skirts, trousers, jackets, pullovers, blouses and shoes. I didn’t have the heart to throw them away. This month, Hein helped me out. He put all of my clothes in front of me. It was up to me to decide which ones to keep. I hadn’t worn most of them for 4 to 5 years. My earlier life flashed before my eyes. Trousers and pullovers were easy enough to toss. Strangely, I found throwing away skirts and jackets to be much harder, the symbols of my working life. Eventually, I kept 1 or 2 of each, as mementos. We threw out four garbage bags worth of clothing. Did it hurt? Not that much. That may be because this day of cleaning wasn’t planned, making it less emotionally charged.

I’m neither deaf, nor stupid

The other day, a man came to fix my chair. Supposedly someone who knows what my disease entails. Despite that, he still managed to speak to me in loud, clear and very simple language. He spoke normally when chatting with Inge. I wasn’t having it and, through Inge, I made it clear that I’m neither deaf, nor stupid. It was highly uncomfortable. I thought the whole thing was terribly unprofessional. Our computer expert did the same, asking Floor if she was keeping up. It felt even worse with Floor involved and again, I told him I’m not mentally challenged. He should have known that anyhow, considering my computer usage. What is it with people thinking I’m stupid? I always try to nip it in the bud. I may not be deaf or stupid, but I am blunt.


Because of my PC troubles, my holiday spirit was fairly belated. While the kids were decorating the Christmas tree, the computer expert was ironing out the final few kinks. But I’m very pleased with how Christmassy everything looks. Lieke completed the picture by putting our outside Christmas tree up, including the little red apples and lights. On Christmas Eve, we had dinner with friends and played Blackjack, with the kids deciding upon the prize pool, which I wasn’t totally on board with. Oh well, I don’t have a voice, so I guess I’ll conform.

On Christmas Day, my brother, his two kids and my mother came to visit. After getting up late (except for me, I’m always up early), we spent the entire afternoon preparing for gourmetting [a Dutch tradition, every dinner guest gets to prepare their own meat/vegetables in a small pan, heated on a small stove set on the dinner table. -Ed], shifting and setting the table, decorating it with a tablecloth and red ribbons, making sauce and preparing the meat. Floor was my arms and my legs. I felt involved. While the family is gourmetting, I’m eating spinach. It’s easier like that. One Boxing Day, Hein’s family had a dinner party. We didn’t go, I find being in large groups difficult. I’m always a spectator. Not to mention the food, all of those courses. No thanks, I’ll pass. The kids painted their rooms, assisted by Hein. Meanwhile, I’m writing this. We spent the evening watching three sickly sweet Christmas films.


More and more often, I’m at the centre of household controversy, especially during holidays spent at home. Despite the fact that Astrid is around three days a week to feed me breakfast and lunch, there are plenty of afternoons, days and weekends where my family has to feed and water me. The kids keep a close eye on how much work they’re putting in, careful to not be doing too much. Of course, it’s a fickle balance. “Whose turn is it to give mom tea?”, and sometimes it leads to squabbles. One solution would be to hire more helps, but that would be a detriment to our privacy. I’ll wait until their school holiday is over before deciding on it.

Evening entertainment

We don’t have much planned in the way of daytime activities this holiday. We do, however, have a lavish evening programme: dinner parties, Holiday on Ice, an orchestra concert, New Year’s Eve and a three-night snowboarding course for the kids. By day, I’m on my computer a lot, but I’m not answering emails. My correspondents will have to wait. I have written the outline for Ward’s grade 6 musical. I’m looking forward to working on it. All I can do now is hope that Ward’s teacher likes what I’ve come up with.

In conclusion

We’re already four days into the new year. For the first time since my diagnosis, I’ve gone into the new year without crying. I don’t feel like getting too retrospective. The new year is going to be laden with changes. Inge will be leaving us on February 1st. The same goes for our neighbour. We’ll have to leave our comfort zone and look for a new help, maybe even more than before. This illness requires me to change constantly. I’ll never get completely used to that.

I wish you a happy and healthy 2003.