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”

Diary February 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 “Diary February 2002”

Diary March 2002


It sounds strange, but the fewer faculties I have, the less I’m bothered by what I can and cannot do. These days, I’m losing less than I was during the first few years, I’ve been like this for a long time. At one point, I wrote down when I’d last done certain things, like biking, autonomously using the bathroom, etc. I was consumed by it. Once I made that list, that was that. One grows a thicker skin. The sadness I felt when losing motor functions lessened. I’ve banished some of those thoughts, perhaps subconsciously. Sometimes I do feel envious when the kids cling to and cuddle with Hein. I’m not much of a cuddler anymore. It’s a mutual effort. But this pain, too, is only proportional. Maybe I’ve just become desensitized. “Don’t think about it too much, Jet” was my mantra back in the day. Continue reading “Diary March 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 May 2002

Summer fun

I started May off the right way with buying some potted plants. I know you’re actually supposed to wait till mid-May, but every time I get back from a holiday I get the urge to do some gardening. We buy the same things each year, a bit boring. Visiting other people’s gardens only confirmed my opinion that gardens should be kept simple. Not too much variety, not too many seasonal plants, not too many bulbs (while daffodils do look pretty, I can’t stand the way they look after they’ve stopped blooming) and use symmetry, which makes it look more tranquil. Because of that, we got two of everything: two potted daisies and different pairs of geraniums. I’m completely satisfied. Continue reading “Diary May 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 July 2002

Wheelchair conversation

Talking to people while I’m sitting in a wheelchair is a delicate procedure. When it’s just me and my accompanist, I prefer my conversation partner in front of me. When we run into someone on the street, my back is usually to the person striking up conversation. When that happens, I always screech “turn!” so I can at least look at who’s talking. That doesn’t mean I’ll feel involved; I’m way lower than anyone else, after all. But like that, I can at least ask questions, through Hein. The worst thing is being in between two people having a conversation. Hein, unreachable behind me, the person he’s speaking to in front of me. It makes me feel superfluous, and I lose interest. Continue reading “Diary July 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. Continue reading “Diary December 2002”