Diary November 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.


Currently, I don’t sleep as well as I’d like to, but I always get decent sleep in my chair. My head does tend to flop forward, meaning I’ll wake up with a sore neck. All I do is toss and turn with my stiff legs. I don’t feel like my breathing is the problem, though we did get my blood tested in Utrecht, just in case (it was fine). Tomorrow, I’ll be fitted for a sleeping chair. By now, there’s a trial chair that looks like an old-timey arm chair in our living room. It has leg supports so I don’t slide down at night. It’ll take some getting used to, but I think it’s a good solution. If all goes well, it’ll be moved to our upstairs bedroom.


I fell like and basically am a burden to Hein. And it’s creating a rift between us. Before you know it, we’ll only be talking (if you can call what I do “talking”) about healthcare. I feel more and more like an object, less like a human. Private conversation is a thing of the past, especially when the kids are around. Hein thinks I should write to him more, but that doesn’t feel like a reciprocal conversation to me. A good solution for our problem is proving to be elusive.


I’ve been getting lots of feedback on my “I miss you” piece I did last month.

I can totally imagine how sad you and Marjolein must have been when she told you she misses you. I don’t think it’s possible to have a more all-encompassing way of putting what you must be feeling, what you and others saw you as before versus now, when you’re wheelchair bound etc. than “I miss you.” And all this while you try your utmost to make things as easy as possible for the people around you. I don’t think many people will ever experience the pain and effort that requires.

Reading it, I started crying again. I never write about the things I’ve lost. I can’t. I work with what I’ve got. And everyone is in agreement with it. It’s like a code of ethics I’ve imposed on myself, which makes it that much more amazing that Marjolein broke it.


I read a newspaper article stating that one million people in the Netherlands write and that the Internet is the perfect place for publication. I’m far from the only one, then. ALS patients are especially likely to write. I bought a book about the personal experiences of a patient who has artificial respiration. One of my correspondents is a young ALS patient. She sends me stories about her life and excerpts of her diary. He’s writing it for his daughter. And I know a female poet with ALS, who has been writing a lot too and is considering opening a website of her own (oh jeez, some competition). In short, a lot of fellow writers. Of course, writing is a great way for ALS patients to communicate.


I’ve been asked to write another grade 6 farewell musical. After a bit of hesitation, I decided to accept the challenge. Writing has been going well, but I took a short break to focus on Sinterklaas poems.


I’ve always been a bit jealous of mothers who get to go shopping with their daughters. I’m probably romanticizing shopping too much. I remember the good times I had going shopping with my mother, but I always got home with a lot of clothes I would never wear. They would be the clothes my mother convinced me to buy. The same thing would probably happen to Floor. On Thursday evening we went shopping for boots. Floor quickly swept every shop, swiftly concluding that nothing there was worth her while. I gestured toward a pair of boots that I liked, but to no avail and my chagrin. No, I think going shopping with Floor would be asking for trouble.


My intelligibility is steadily deteriorating. I resort to spelling all the time now. It’s a lot of effort and creates a lot of frustration. The only thing I can do is get angry when I have to repeat the same letter or word for the umpteenth time. I need you to look me in the eyes and give me your undivided attention, otherwise our conversation is going nowhere. I’m very demanding that way. In particular, it riles Hein up sometimes. Of all inconveniences, not being able to talk is the one I hate the most.

New help

After only being here for three days, our new help called in sick; overworked. I called it. And, indeed, after coming back she told me she was going to quit her job. I quit as well. Getting to know a new carer requires a lot of energy, and in this case it would be wasted. Luckily, Astrid was able to step in in the meantime. So, we’re back to looking for a new help.