Diary September 2005

Ward, this neighbourhood’s Sumo King

The toll of wearing a vest

A moment ago, I received an email from a fellow ALS patient. She wrote about the conflict between her and her husband when it comes to putting clothes on. She feels like she should be able to dictate the tempo and the order of clothing in which he dresses her. Her husband doesn’t and thinks she shouldn’t complain and should just be thankful, always quickly retracting the latter. That’s my own situation in a nutshell. Although we’ve made a lot of concessions over the years and our arguments aren’t as fiery anymore (their incident I feel is more of a rookie mistake), our conflict is rooted in the same age-old question: who’s in charge?

While my minimal demands are always met (I want my head held upright and my arms to be crossed on my lap whenever I’m changing), there is a certain aspect of getting dressed I want absolute control over: picking which vest I want to put on. All of my clothes are very run-of-the-mill except for my vests, the only clothing articles I have a hand in buying. It’s my autonomy and personality, all boiled down into a piece of fabric.

Usually, Hein heeds my vest preferences, but today he turned up with my brown vest. I hate that thing, it’s too thick, the opposite of colourful (I hate the colour brown, honestly) and the only vest I didn’t buy myself. I asked for a different vest, some of my favourites were just hanging in my closet, but for some reason that really rubbed Hein the wrong way. He’d had enough and put the brown vest on me. I protested furiously and loudly voiced my opinions downstairs until Ward fetched my pink vest and Floor helped me put it on. Not a good note to start a day on. Everyone was miffed.

I was still fuming. Imagine me telling someone else what to wear, the arguments it would cause. Why shouldn’t I be allowed to pick my outfit? However, after three hours I took a good look at the situation. All of this fuss over a stupid vest. Who cares. But the question still gnawed at me: do I have any autonomy left?

I asked my carer to put the brown vest in a deep corner of my closet so nobody would be able to find it.

When Hein read this part of my diary, it turned out that he wasn’t aware how much I hate that vest. “Why don’t we just throw it out?” he commented, down-to-earth as ever. That’s a good one. Why not?

Personnel management

I’m in charge of a kind of company, let’s call it Carer Corp. My company is in charge of my personal care, cleaning my house, doing grocery shopping, preparing my food, doing garden work and running errands for me. I have five employees who I have to provide with enough work and motivation all while solving potential scheduling problems. One of them is good with PCs and likes to read, another has green thumbs and yet another is a great conversationalist. Our garden is almost ready for winter and our front yard has gotten the same treatment last week at the hands of one of my carers. Besides that, I’ve been reading ‘De eeuw van mijn vader’ [‘My father’s century’, a book about Dutch history in the 1900s. -Ed.]. I’m particularly interested in the parts about the author’s family’s experiences in the Dutch East Indies during World War Two. I’m so happy with me rekindled love for reading. I actually owe that to my carer who loves to read. One of my other carers couldn’t care less about books, so I let her do the gardening.

I had a problem with one of my employees this week. One of my domestic helps didn’t clean thoroughly enough and wasn’t very self-sufficient. She was nice, but I would be doing myself a disservice if I stayed quiet. We decided to part ways and, through her employer, we found a replacement. There’s a bigger market for domestic helps than for carers. Luckily, Roeline had been itching to work more so I would have more than four days to find a replacement. Other than that, Carlien will be working less, so I’ll have to find a new employee before November 1st. And like that, we truck on, working hard to keep Carer Corp. running.

Hannie Lederhof

Today we got a call from Mike, notifying us of Hannie’s passing. She’d slipped off the stair lift and broken her hip. The subsequent operation had been successful, but her breathing stopped. Hannie and I corresponded for over four years and they were emails full of humor, cheek and holiday plans.

We went on a few walks together. We were a sight to behold; two women screeching in an unknown language, pushed along by their husbands, not a care in the world. She was at my birthday party. The last time we saw her was at the gardening convention in Noordwijk, completely covered in plants she’d bought.

The football match

We spent a lot of Saturdays watching Ward play football this month. Usually we arrive just after halftime. Ward always wears a black shirt with red streaks. This time, we couldn’t find him anywhere. Or could we? Number 12 looked a lot like Ward. Wait. No, that’s not him. What I did find strange was how often I heard the opposition, who played in blue shirts, call out Ward’s name. Odd, his name isn’t too common. And there were so many vaguely familiar faces in the blue team. It was just starting to dawn on me when the match ended. When we got home, my suspicions were confirmed, as Ward got back home wearing a blue shirt. He’d been on the blue team that whole time, we just hadn’t spotted him.


On the evening of Monday, September 12th, the TV programme Network aired a symposium organised by the Belgian ALS Liga, featuring the person behind the controversial Chinese stem cell treatment, Dr. Huang. We couldn’t understand anything he was saying but at least he looked like a nice fellow. The panel of ALS experts pulled no punches as they condemned the treatment. During the show, Loes (who looked great) said with determination that she would go to China for a second round of treatment in October/November. I admire her steadfast conviction. Once again, I’m in doubt, which is hitting harder than usual. At least ALS is back in the public consciousness once more.


My website attracts around 1100 visitors a month, including 600 new faces and 500 people who check in every month. It’s fun to see what kinds of things people use the search bar for. Some key words are logical, like “Amyotrophic Lateral Sclerosis”, “Rilutek” and “fasciculations”, while others are a complete mystery to me, like “intestinal colic”, “tiramisu recipes” and a particularly strange one: “Going wild on poker night”. Going wild? I wouldn’t know how.

Closed forum

Ardi Bouter’s forum has been shut down. People were being too hostile to one another, so Ardi’s family decided to close it. I used to visit it about twice a day. It was becoming more tight-knit and the amount of swearing was decreasing steadily. I feel abandoned and so do many others. There goes another daily ritual.


Floor has a boyfriend, Roel. They’re having a lot of fun, but I do feel it’s detrimental to our evenings watching TV together. Apart from her not being home as much, it also means that there’s a new third party during the evening she does decide to watch TV with me. I’ve got to say, it’s kind of distracting to have them kissing next to me on the couch while we’re watching TV. Despite Floor’s protests, I know she’s not paying attention to the programme half the time. I still feel blessed though. Of course, they could choose to spend their time upstairs and leave me alone and I’d completely understand. I’m not some bog-standard mother-in-law, after all. Luckily, Ward is spending less and less time on his PlayStation and more time with me.


I don’t suffer from severe fasciculations, but for the past week my left eye has been twitchy. Besides the annoyance factor, it impedes my vision a lot. I hope it’ll stay open.