Diary January 2005


We had a nice quiet Christmas break. Our hardwood floor was sanded and finished on January 3rd and didn’t take nearly as long as I’d dreaded. We only had to spend two days staying with friends, after that the smell of varnish in our house was bearable. Because I couldn’t take my PC with me, I started reading The Da Vinci Code, a very suspenseful novel. I couldn’t stop reading it and finished it in 5 days. Fortunately, one of my carers is an avid reader and turned the pages for me while she read her own book. By now I’ve also finished The Dinner Club, a novel with twists, turns, and was full of surprises. The books often don’t look good after I’m done with them. For me to read them, they need to be folded open completely. Continue reading “Diary January 2005”

Diary February 2005


I hadn’t taken a tumble in years, but this month I fell to the ground two times when trying to use the bathroom. It’s due to a combination of being tired and badly positioned legs, because of which I sank to my knees. There’s no way to stop it once it’s started. Hein had to pick me up and I could do nothing to make it easier, I was dead weight. The second time I fell, I cracked my head on the floor. I saw spots for a second, but everything seemed fine. Only by the next day did we see what the damage was. While I was drinking, I felt like my jaw had been unhinged, the way my teeth gnashed together. And while I was eating my porridge, my remaining front tooth came loose. I now have three enamel stumps where my front teeth used to be Continue reading “Diary February 2005”

Diary March 2005


On Wednesday, March 2nd, the long-awaited documentary on ALS was finally aired. I don’t like programmes about serious diseases and I never watch them. Every one of them pretends to be in-depth but always leaves me feeling like they haven’t even scratched the surface. But this time, I knew some of the people involved, so I was curious. I enjoyed how every person they interviewed had their own way of dealing with their illness, ranging from getting the most out of life to doctor-assisted suicide, from meticulously planning everything out to living from day to day. I’m more of an improviser myself. The only people who I knew before they were euthanized were male. Maybe that’s because they were used to being in control. Maybe they’re unable to deal with such radical lifestyle changes. It would have been interesting if the documentary focused more on that aspect of ALS, but they barely mentioned it. I’m so impressed with Ria Velthuizen, who managed to shed a positive light on a topic as depressing as ALS. I wouldn’t have been able to. Continue reading “Diary March 2005”

Diary April 2005

The birthday party

It was amazing. The party was tailor made for me. A limited amount of people. A video, made by friends and family called ‘About Jeanet’, a song, a speech by my mother and brother, a small oration by former colleagues, a homage to Hein, a Russian song sang by Jan, lots of presents and a lot of karaoke. The latter was a huge relief. You’re not on the stage singing on your own. Everyone else was singing alone. I didn’t go to sleep until 3:30. It was unforgettable. Thanks, everyone. Continue reading “Diary April 2005”

Diary June 2005

I haven’t written anything for June. I couldn’t get myself to do it. The only writing in June were some birthday wishes for two good long-time friends who turned fifty in the past month. It’s always a blast to reflect on long-standing friendships. I spared no expense and, together with Marjolein, wrote and gave a speech, meaning that Marjolein did the actual speaking and I sat next to her, beaming.

Continue reading “Diary June 2005”

Diary July 2005

Water damage

In the night of Sunday, July 3rd, the kids woke up to a thunderstorm, while we were still fast asleep. They were probably scared, so they thought “Let’s go to mum and dad’s room.” They came in in the nick of time, because water was gushing from our window down the wall of our bedroom Continue reading “Diary July 2005”

Diary August 2005


I’ve been busy looking for a new pair of shoes since last August; they have to be comfortable, but sturdy enough for me to be able to stand up in them. After one failed attempt, where we only consulted a cobbler, we decided to try again, that time under supervision of a rehabilitation doctor, but to no avail. The resulting shoes just made me twist my right ankle, meaning I couldn’t stand up in them. We’ve devised a way to combat that: an EVO (an orthotic that functions like a splint) that keeps me from spraining my ankle. Continue reading “Diary August 2005”

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? Continue reading “Diary September 2005”

Diary October 2005

A good old fashioned October 3rd

October 3rd (the day Leiden was freed from Spanish rule in 1574) was on a Monday this year, which meant we were treated to a long weekend. For the first time in a few years, I actually felt like celebrating this time. It surprised me too, as I’ve become increasingly apathetic, especially when it comes to big events like this one. Maybe it was the weather, maybe it was because of Floor’s participation. October 3rd is full of age-old traditions; eating hotchpotch with our friends, going to the fair with Gisele, going to see the flea market and rounding off the day by watching the parade from the same spot we always do. I wasn’t expecting to have as much fun as I did. Continue reading “Diary October 2005”

Diary December 2005

Shower lady

A lady from home care is going to be helping me shower soon. She’s an energetic woman whom I would have liked if I didn’t have ALS, but in my current state I feel she’s a bit too eager. During our “getting-to-know-you” chat she immediately suggested she could take over the duty of getting me out of bed. Before that, let’s see how well you manage with Hein’s help. Continue reading “Diary December 2005”