Category: Diary

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”

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”

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”

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”

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”

The incident

There was another bridge night. Lucy and Jan were there too. Lucy suffers from cancer and is going through chemo, so she was too tired to stay long and didn’t play either, so we talked for a bit before we started. Well, they talked. It was taking a while for us to start playing after Lucy and Jan left, so in the meantime I ate my daily portion of chocolate. Suddenly, I accidentally bit someone’s finger and my tooth came loose. I always panic in situations like that, so I called for Hein. There was still a bit of chocolate in my mouth that I couldn’t get down. Meanwhile, Hein had had enough and wanted to leave. Within five minutes I was sat in the van, leaving the rest behind in utter disbelief. Afterwards, they discussed ways they could offer us support (we’re not much of a support group, mind you). After five years of ALS this type of thing has almost become normal, but people do worry about me. There are ALS patients around whom huge rallies are organised by friends and family to raise support for their healthcare requirements and needs. I don’t like the sound of that and prefer to stay in charge, which I acknowledge may be a mistake. Either way, everyone is looking out for me, so an incident every now and then can’t hurt. Continue reading “Diary October 2003”

Smoking help

This morning, I met my new help. Boy, it doesn’t get easier to become accustomed to nobody being home to help me talk and being completely dependent on each other. It made me nervous and wore me out. But we managed and all things considered, it didn’t go too badly. She did take several smoke breaks in her car. When she got back, she smelled terribly. In the same vein, we know a repairman who, while he doesn’t smoke around us, does smell of cigarettes. Smoking should be banned. Continue reading “Diary November 2003”

Sinterklaas

By now, I’ve written 15 poems and had fun writing them. The anticipation is the most fun, honestly. All of them are a bit rude, but that’s tradition. We’ll be celebrating Sinterklaas on December 6th with my in-laws. It’s the most ingrained Dutch celebration. I did an internship at a women’s rehab in the USA once. We had written every single one of the women a poem, which were met with disinterest or confusion. When we knocked on one of our friends’ door and threw some sweets through his open window, he almost went to get his rifle. For context; we were dressed as Zwarte Piet, something Americans find distasteful. No thanks, I prefer the Netherlands. Continue reading “Diary December 2003”

Happy New Year

My mother always adds “as best you can”, even when wishing me happy holidays. I don’t like the addition. Why wouldn’t I have a happy new year or a merry Christmas? I understand her hesitation, but that doesn’t mean I like the clear allusions to my illness. These days I don’t look forward as much, preferring to look back and count every new day as a nice extra. My only goal in life is to live my days to the fullest. Continue reading “Diary January 2004”

Picky?

On Friday afternoon, we interviewed, or rather, met our new help. After some meditation, I decided to not hire her. Why? Granted, she was nice and very good at her job, but when she arrived she immediately touched my face and again when leaving. I don’t doubt she had good intentions, but I don’t appreciate behaviour like that one bit. It’s something nurses tend to do; mothering me to bits. I already have a mother, thank you very much. I want someone who sees me as their equal. I spend whole days with my carers, they’re not short visits. I need to be on the same wavelength as my carers. Besides, I use my PC a lot, so some knowledge of computers is a prerequisite. I panic when my computer crashes, especially when there isn’t an interpreter present. Am I just being too picky? Continue reading “Diary February 2004”

Needed

I was restless last night. It sounds stupid, but I lost sleep over a party Sara and I are organising. People have taken issue with the location we picked (Avifauna), especially a bunch of men who left all of the planning to us. But that still doesn’t explain why I was so upset. I couldn’t sleep and even cried a bit. This morning, I wrote a ruthless letter to the aforementioned gentlemen, which made me feel a lot better. Maybe I was upset because I was unable to verbally defend my choices. Maybe it was because I had vested my happiness on this one dinner party. Maybe it was just me being a sore loser and being upset that I didn’t receive unanimous support. I threw the towel in the ring. They’ll figure it out. I felt so alone. Continue reading “Diary March 2004”

Easter

Easter Saturday was messy. My computer was completely shot and our expert worked on making the upstairs computer head mouse compatible. It always stresses me out, because I’m nothing without my programs and old files. I’m too dependent on them. Afterwards I had to wolf down my food because we were expected at a friend’s house. When I got there I was so tired that I asked if I could sit somewhere else to close my eyes for a second. It was nice. The following day, we had brunch with Hein’s family in Oosterhout. Having Floor and Lieke at my sides to translate what I was saying made it an agreeable afternoon. As a belated birthday present, Monieke gave me some stamps with her late cat on it. Very special, very much like Monieke herself. On Easter Sunday we did an easter egg hunt. The men’s team beat ours by one minute, not bad for a team with a member who’s unable to leave her chair. The kids don’t want to let go of this tradition just yet. We spent that afternoon in our garden with my mother. Continue reading “Diary April 2004”

A difficult person

The other day, someone gave my family their compliments for being able to deal with a “difficult woman” like me. That was a hard pill to swallow. Me? Difficult? Some time later, I got an email from someone who, alongsider her sister, took care of her aunt. She wrote: “We, and the carers at her nursing home, did not have an easy time helping her. She had very high standards”. That’s the crux of the matter: are you in a position to make demands from people you’re totally dependent on? “Of course,” everyone would say. Continue reading “Diary May 2004”

Coughing

My coughing has become a recurring problem. I’ve spent another whole night hacking before getting all of the mucus out of my trachea. It wasn’t pleasant, for me nor for my family. I’ll look for some information on tricks that can help me get rid of mucus easier. Continue reading “Diary June 2004”