Diary January 2000



Christmas break is like winter hibernation; we go to bed late, sleep a lot and wake up in the PM. Floor especially is a huge sleepyhead. The weather is fitting, too; the Netherlands is covered by a grey rainy blanket. It truly is December. We barely had any friends over, spending most of our time together as a family. We weren’t idle, either. We saw Oliver Twist in The Hague, Floor did A Christmas Carol which was beautifully executed, we celebrated Christmas with friends and family and spent our days playing games and lazing around.
My mother visited us on New Year’s Eve which was cozy, we played Burro and she kept losing. The game is absolutely mystifying to her. We counted down into the new year together: 10, 9, 8, 7… I got emotional, but just for a second, after which I managed to keep my composure. We threw on jackets and went outside to light some fireworks. Our neighbours came over to wish us a happy new year. Everything went swimmingly. Our street was filled with the sounds and the flashes of fireworks. It’s been years since we celebrated New Year’s at home and I think I like it this way. After one o’clock a few friends came over while we were still outside, admiring the fireworks show. We sat at the table, playing cards, eating spring rolls and croquettes. At 3:30 we finally called it a night. My mother had thrown in the towel already and had gone home. A good old fashioned New Year’s Eve.
Breakfast was served at three the following afternoon. We spent the rest of the day watching old Dutch tv programmes and musicals together (some of them were even in black and white). Then we played Risk, but with our own rules. We played a lot of Risk over Christmas break.
After that we took a midweek trip to the Veluwe with Sander and Carola. Swimming everyday, going to the zoo (which had just revealed their new ocean exposition), visiting Zutphen and celebrating Cato’s birthday. Our cabins were very close to one another, close enough to see each other through the window, meaning we knew exactly when it was time to wake up (late, more often than not) and when it was time to eat breakfast. On the last day we went to visit the “Hidden Village”, a settlement created by people who went in hiding during the Second World War. The end of our holiday was upon us. We didn’t waste it. Not like hibernation at all, actually.

My car park

In June of 1998, when I’d recently been diagnosed with ALS, I got my first set of wheels: a foldable wheelchair. We immediately put it in the attic, where it gathered dust. Stupid. It’s only later when I realised how much I impeded my own freedom by not using all the tools I was given. I desperately clung to my own independence. The scooter was a good compromise for me. I could decide where to go myself, even though my own timidity and pride were still hindering me. It took me six months to work up the courage to go to a supermarked on it. Now though, my arms are getting to weak and heavy to steer the thing. I’ve employed Ward, who sits on my lap and takes care of the steering. I think he takes corners too wide and ought to slow down when there are bumps in the road. I’m no stranger to screaming whenever Ward drives me around. Soon I’ll be giving up my scooter. Another chapter of my life comes to a close.
In June of 1999 I got a senior chair: a height-adjustable desk chair on wheels. The idea is to let me shuffle my way around the room using my legs. I prefer to be carted around, but I’ll shuffle if I have to. The chair helps with standing up, the adjustable height is nothing to sneeze at.
I’ve had an electric wheelchair since December. I didn’t need it quite yet, but we saw for how long some people have to wait for theirs, so we decided to act early. As it turns out, we overestimated the time it took for the chair go get here. It looked tiny in the showroom, but when mine arrived it turned out to be a mammoth. It’s been put in a corner near the front door, because I still prefer my senior chair when I’m in the house. There it’s been turned into a storage space for old newspapers and dirty laundry, which keep piling up. I can’t get used to it (yet). It’s a bit too much right now. Floor and Ward have taken to riding it around the living room, while at first they avoided the thing too. Maybe it’ll find more acceptance later on. Apparently, love/hate relationships aren’t exclusive to living beings.

The first normal week of January

Sometimes it’s just one of those weeks. Slow, uncomfortable, flu-ridden amd requiring some real determination to get things done. It’s not like I wasn’t expecting it. I always have to get used to not being surrounded by festivities and family after the holidays. Weirdly, the moment the festivities were over, lighting candles became a lot more rare. Luckily, Floor still found the time to spruce things up a bit after she returned from swimming practise.
It wasn’t all bad; I received replies to my Christmas letter, we had game nights instead of playing bridge and the kids and I went to see a children’s show in the theatre. We hit the pub after that, despite the fact that people have trouble understanding me. At 10:30 a barman kindly asked us to call it a night. Guests were complaining about our teenage daughters, who were sitting at the bar without adult supervision.
I don’t shy away from everyday activities as much as I used to. Things I couldn’t imagine myself doing in a million years half a year ago now feel almost routine; going to the pub, grocery shopping at supermarkets and visiting open houses at high schools with Floor. It looks like six months is the expiration date for shame. The sensation of shame is a ridiculous one, but everyone feels it all the same. For me, it was the shame of meeting people and not having the words to greet them. Being unable to do anything other than crack a vague smile. Recently though, I’ve just stopped caring.

Down to earth

I’ve always been down to earth and still am today. I know of many people who became much more spiritual during deep personal crises. I’ve looked for that same spirituality, but it just doesn’t seem to stick. I’ve started reading “A Course in Wonders”, a book about basic spirituality on which many other spiritual guides are based. It’s not much of pageturner. Sometimes I’ll read a line two or three times before I realize that it’s the same one. I have started doing the exercises the book outlines, which are doable. A small part of me is still hoping for a miracle. The following quote from a fellow ALS patient describes my feelings perfectly:

“My friends are very supportive, but they often ask “What about miracles?” “Why haven’t you gotten one yet?” My reply is: “Often the miracle is not a cure or healing, but the ability to deal with life and the experiences you are having in day-to-day life.”

I enjoy discussing and reading about spirituality, even if I don’t subscribe to it. I pursue more earthly delights. I feel almost childishly excited for fireworks, Christmas cheer, going to the pub, etc. Physical possessions are the only things I think I could do without. I barely buy anything anymore. Doug, my American role model, keeps diaries full of acceptance, retro- and introspection, forgiveness, apologies and thankfulness. He feels like he only found his purpose in life after he was diagnosed. But me? I’m still so… me. I’m content with that, but I have come to the realisation that I could be a bit of a cretin (and still am, sometimes). Oh well, it’s a part of who I am. To told me that, in Eastern philosophy, a person is seen as nothing more than a “mass of bubbles”, which puts everything in perspective. I’ve got a knack for that. Sometimes, one has to take a few steps back, look at themselves and say “really?” My mother is the perfect teacher in relativisation. After three attempts at deciphering what I’m saying, she’ll suddenly get it and say “why didn’t you say so earlier?” I’ll grumble when the pieces of bread she feeds me are too small. Whenever I get too self-absorbed, I’ll just take a step back, look at the situation and think: “there are worse things in the world”. My mother and Floor are the only people who talk to me that way. In fact, Floor once pushed my wheelchair to the front door and told me “if you want to go for a walk, then walk,” because she didn’t feel like walking herself.

Choosing a high school

It’s showtime. We’ve visited two schools already, where we attended information days. Both schools are doing their utmost to draw in children. For me it’s an emotional ordeal, a bit like when Floor went to daycare for the first time, or her first day in kindergarten. It feels like you’re abandoning your child in an unknown place, with the hopes that they’ll take good care of him/her. Oh well, it had to happen someday. Strange thing is, dropping off your second child is much easier somehow.
I need to be carried around whenever we visit an information day, wheelchair included. My two assigned “carriers” are becoming more skillful by the day. We usually meet outside the school. One of them told me: “one more information day and I’ll be able to carry you by myself.” I was even lifted up to the second floor, with the help of a PE teacher. Some parents are unaware of my illness and try to chat with me. I just keep smiling, nod at Hein and make a gesture as if to say “ask him”. It’s not much of a problem. Yesterday we had a two hour long roundtable with other kids’ parents. I loved every second of it. Talking with other parents about our kids may just be the thing I’ve missed most.


January has almost passed. It’s been a breeze. The Veluwe took a good chunk of the month away. Last week our house was filled with guests and my schedule was full of high school visits. Floor got sick this week, so in short: I can’t complain about monotony. I’ve also been writing a family periodical for Lia’s 75th birthday. It makes me content. Everyday people pitch in with ideas and stories sent in by email. It does mean that I have a deadline to make, so luckily I don’t have to write all of it. Some of the contributions are really something. The most beautiful one is a poem inspired by the works of Martinus Nijhoff. I once recited Nijhoff’s poem “De appelboom” (the apple tree) at a wedding. Here it is:

Moeder weet je nog hoe vroeger;
Toen ik klein was, wij tesaam
Iedre nacht een liedje, moeder,
Zongen voor het raam?


Mother, remember back
when I was little, we
used to sing a little song, mother,
in front of the window?

Medical intermission

We talked to the doctor about resuscitation and all of the scenarios that could play out in case something goes wrong. I was wholly set of nocturnal artificial respiration, thinking it would be a fairly simple medical procedure. It turns out I’d have to stay in a clinic in Arnhem for a week. I hate being away from home and I certainly don’t like my body being tinkered with too much. I’ll have to think about it some more. Luckily, blood testing revealed that there’s no need for me to stay at the clinic just yet. Of course, the feeding tube was brought up. The doctor seemed a bit miffed that we hadn’t followed his instructions and made an appointment to have it installed right away. Still, it was a good talk. Hein and I evaluated the talk after we got home which always helps. The best part of our doctor’s appointment was when the GP said that he’d “like to see Jeanet stay with us for a while longer”. He also noticed that Hein talked about “our” medicine intake, with which he meant “my” medicine intake. Hein is getting quite apt at so-called “nurse jargon”. The next day he told Ward to hurry on the toilet because “we” needed to use it too. We laugh about it, which is the most important thing.


Floor was ill and I would have loved to take care of her: make her some freshly squeezed orange juice, peeling an apple for her, etc. In reality it’s the other way around. Despite her being sick, she takes care of me: adjusting my seat, pouring me tea and helping me in the bathroom. Even with that last one I trust her completely, despite her slender build. Floor is not made just for caring for me, she takes care of her own needs too. When it really matters, though, she’s always there to ask if I need help. She really puts feeling into caring for me. I have a splendid daughter.