Diary

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Diary August 2002

Zeeland

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”

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Diary September 2002

Dignity

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”

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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”

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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”

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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”

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Diary January 2003

No idea

The kids moved their rooms to the attic. I haven’t been there in five years. I used to have some idea of what their rooms looked like, but now that they’ve moved, I’m completely in the dark. Pictures and video don’t do the atmosphere justice either. It’s like the Euro. I understand people are having trouble adjusting, but I’ve never used them. I don’t even know what the individual coins and bills look like. Continue reading “Diary January 2003”

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Diary February 2003

The musical is finished

Last week, I finished the musical. It was all I could think about. It practically wrote itself. Ward had minimum input. He was fine letting me do my thing. 15 pages, some of them copied word-for-word from memory. When I write a lot, my head gradually tilts to the side, making clicking the right words and letters difficult. I was so driven that I managed to finish the project in two weeks. It’s a real 2003 period piece: Idols (and its dreaded jury members), heaps of pop culture, politicians and jokes about our awful public transport system. Continue reading “Diary February 2003”

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Diary March 2003

Level-headed

It happened without warning. The patient lift suddenly stopped working, right when I was being lifted up. Surprisingly, I managed to stay relatively calm. I surrendered, trusting others to solve the problem for me. Luckily, Sandra remained calm as well. My mother-in-law was visiting and together they helped me down and sat me on the commode. I tried to fight it, because I would have to change seats again if they put me on the commode. And, you guessed it, we got in trouble when they tried to get me back in my wheelchair. They couldn’t get me upright. In fact, I started slipping down. Still, we remained calm. Sandra bravely took charge. We made calls. Hein was in a meeting. Astrid (my other aide) was indisposed. I suggested trying Inge (my previous carer). And sure enough, she was home and got on her bike at once. Continue reading “Diary March 2003”

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Diary May 2003

How are you doing?

An annoying and difficult question to answer. People think my illness dictates my whole day, but it doesn’t. In fact, I try to think about it as little as possible and I feel normal for the greater part of my day. I try not to imagine what other people see when they look at me, a woman slumped in a wheelchair who can barely talk and needs constant help. (Photos of myself always shock me.) But within my psyche, my illness plays only a small role. My interests, feelings and routines are still the same I think that’s the way to go: to think about one’s illness as little as possible. My life is as regular as I can make it. Continue reading “Diary May 2003”

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Diary June 2003

ALS Day

This year’s ALS Day was held in Artis Zoo. Hein had to work in the morning, so we arrived muc later. We got there at two, just after the formalities had ended. From what I could gather, not that many people had shown up. The Valscherm foundation doesn’t attract too many new members, while the number of older members steadily decreases. Vascherm has been instrumental in the founding of the Dutch ALS Centre and they couldn’t have done it without Vincent Straatman, their inspiration. Continue reading “Diary June 2003”

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Diary July 2003

Looking

Looking to the side, especially to the right, is hard, because of my neck. When we’re out for coffee, I ask my partner to sit half a metre in front of me, taking up most of my field of view, so I don’t have to strain my neck. City sightseeing, going to museums or going to fairs are equally difficult. My companions see so much more than I do, to the sides at least. It means that, during fairs, I’m always looking ahead, gazing the next booth (which is never quite as interesting as the one my companion is perusing). In cities, museums and churches, a lot of beautiful things go unseen. Continue reading “Diary July 2003”

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Diary August 2003

Heat wave

I don’t think the recent heat wave in the Netherlands was too bad. We have a cool home and the sun doesn’t hit our garden until the late afternoon. On the hottest part of the day it was 26.5 degrees Celsius, positively refreshing when compared to the temperatures outside. Hein had to take 5 days off in a span of two weeks to counteract my carers’ holidays. We spent a lot of time visiting the tea parlour in our cool local park. Of course, I stayed in the shade. Besides that, we experienced a few days of sea mist, meaning it was nice and cool here while the rest of the Netherlands was melting. No, this wasn’t too bad. Continue reading “Diary August 2003”

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Diary September 2003

Writer

Ward had to write an autobiography for school, about his family but mostly about what books, poetry and films he likes. He didn’t want to write down that I was unemployed. I told him to just call me a writer. He liked that idea. And I like that thought too, actually. The following week, Ine, an ex-colleague from KPN, called me a writer too. Talk about inflating my ego. I’m flattered. Continue reading “Diary September 2003”