Diary April 2002


Stop it

One of Hein’s uncles also has ALS. My mother-in-law keeps us informed. Today my mother-in-law, Floor and I were chatting around the dinner table. Our conversation was going down a grim avenue. I don’t want to discuss stuff like this with the children around. But how does one bring a conversation like this to a halt? I gestured at Floor a few times. My mother-in-law didn’t pick up on it. Walking away was not an option. Shifting the subject wasn’t either. Bluntly, I yelled “stop”. Seeing as my mother-in-law can’t understand what I say, Floor had to translate. And Floor thought I was being terribly rude. With some shame and an accusing look, she told her grandma to “stop”. My mother-in-law attempted to resurrect the conversation, but again I yelled “stop it”. Sure enough, the subject was dropped, but because of my insolence, Floor is mad at me. Granted, nuance and courtesy are things of the past for me. But how do I explain that to Floor?

Monday’s caregiver

On Monday, I sent my mother home. That morning she had gone to the doctor who had diagnosed her with bronchitis. She was coughing and gurgling. It’s much too risky. Besides, I’d only worry about her and being fed by her would be very uncomfortable. She left only 15 minutes after arriving. It’s a bit of a rotten thing to do, but bronchitis is the last thing I need right now. I guess I’m being rude again. Luckily, Floor was more understanding this time. On the Monday after, my mother’s cough still hadn’t fully disappeared, so she donned a mask. After having no luck at three separate chemists, she had bought one at the construction market.


My mood has gotten a lot better because of the weather. All of the plants, my birthday gifts, have been put in the garden. It’s gorgeous. I’m in the garden for hours a day, just contently taking it in. It does mean my mood has become dependent on the weather.


We did some things again. Last week we saw Cirque du Soleil. It was a once in a lifetime experience. It was something else. The tent was next to the ArenA. It’s mainly acrobatics with jokes and antics and beautiful costumes and music. The kids were not thrilled at first, because this was a mandatory family excursion (apparently, fun can’t be had without elaborate pre-conciliation), but they warmed up to it. We were all the way at the front. Afterwards, my neck hurt from all of the looking around.

And we went to the theatre: Orestes, a tango night. Ever since the royal wedding with Maxima, tango has become all the rage. It was thrilling.

And on Friday, I’ll be going to Rotterdam with friends to see the play… The Vagina Monologues. A show not easily discussed without feeling embarrassed (one of us even covered the appointment in her planner with her hand whenever she had the page open, and preferred to talk about the show with euphemisms). It was a smash hit in America. Three Dutch (semi-)celebrities orated, reading aloud emotional, hilarious and shocking stories. None of the men wanted to come along. Hein and Ward went to explore Rotterdam after dropping me off. (It was a genuinely funny show with some very relatable stories. Between monologues, there was a lot of audience participation. About 95% of the crowd was female.)

And yesterday my help Inge and I searched the internet for tickets to a Marco Borsato show. To my surprise, there were still disabled seats available for Friday, June 14th in De Kuip. On a whim, I ordered them, without discussing it with anyone. My family had mixed reactions, but I think that, deep down, they’re excited too. Ward is the only one who’s openly enthusiastic. He’s hoping for a guest appearance from Sita. I’m looking forward to it.


The third reason for my heightened mood is the fact that Ward has to write another essay. I’m needed again. Hooray! Nothing is more fun than being needed. The essay is about the Olympic Games. His first accomplishment was writing a letter to Prince Willem Alexander, a member of the IOC, with my help. He immediately received a reply from the royal family. Sadly, they didn’t answer any of his questions, but the letter was a nice gesture.


Drinking is not easy. I often up the ante for my caretakers. Not because swallowing is hard, but because my lips aren’t as grippy as they used to be and my neck becomes tired easily. Thus, I command them: “higher, lower, bend it more, straighten it out”. If the straw is straight as an arrow, I can’t get the drink through. If my straw isn’t supported by the bottom of the cup, it slowly slips out of my mouth. If my straw shifts around in the cup when it’s held askew, I lose my grip. If the cup is held too high, my neck does too much work, which drains me. It’s a sensitive process. Thus, I give commands by the number. Sometimes, Hein threatens to put my drinks through my PEG from now on. Granted, it’s easier. But I’ve noticed that drinking prevents me hawking up too much phlegm. Thus, we’ll continue drinking like we do, according to my strict instructions, some of which are gibberish to my confused caretakers.

May holiday in Westerbork

On Friday we returned from Westerbork. While the weather left much to be desired, we had a lovely week. Our bed was highly comfortable, it’s no patient bed but it was high and wide, affording me a good night’s sleep and tranquility, both physically and mentally. No anxiety, no mess and a good toilet that was well-positioned against the wall. Other than that, our cottage was a bit sombre and not very cosy. But our fellow holidaymakers had a beautiful waterside house, with a terrace on a jetty. It also had a sauna and a tanning bed. The kids slept in the other house and made full use of the sauna. The park had go-karts, canoes and a tennis court, so there was plenty of entertainment. And the trip once again bolstered my belief that weathermen are not to be trusted. Despite the rain, we hiked to monuments, we visited Orvelte, walked a forest trail, visited the model gardens of Ruinen, visited the Westerbork Holocaust Memorial Centre and paid a visit to the tiny prison museum in Veenhuizen. Drenthe is an excellent holiday destination. One downside: the province is filled to the brim with speed bumps, making every road trip a rollercoaster.