Diary October en November 1999


How was America?

It was great. We did a lot of fun things and everything went as smoothly as it could’ve. The cottages we rented were amazing. They all had swimming pools, very American. We visited Universal Studios and went on plenty of attractions: E.T., Jaws, Earthquake, King Kong, Twister, etc. Then there was Cape Kennedy. The whole place reeks of spaceflight history. It’s still in use; the next launch is scheduled for December 2nd. Lastly: Epcot, a new Disney theme park. Future World was a bit disappointing, truthfully. The World Showcase was pretty, especially Mexico, the child acrobats and the breathtaking parade.

The most American thing we did was visit a drive-in cinema. For three dollars per person we watched two films. Audio is supplied through the radio or through little speakers next to the parking spots. We were stocked with plenty of popcorn and cola, of course. The kids were impressed with Ward’s friend Jochem’s accent and the fact that the kids were allowed to grab cans of soda from the fridge without asking for permission (something they had to unlearn when we got back home). Visiting supermarkets was an adventure on its own; grandma and Floor on an electric scooter and me and Ward were racing around the place.

We saw the Everglades. A spectacular trip on an airboat with earplugs in, seeing crocodiles, even letting Ward and Floor take the wheel at one point. We travelled to and fro between the Keys before heading for Key West. At the square where we had dinner our sunset was blocked by a cruiser that was moored nearby. We sat between the cruiser and the concrete piles until day turned to night. We saw two raccoons, one of which had a palsied leg. On Miami beach we were awestruck at the Art Deco houses and the surprising number of attractive men. Floor, however, thought that their tight swimming trunks looked rather uncomfortable.

We enjoyed our time in Florida. The kids were sweet to each other and didn’t make any trouble. I was well cared for, sometimes both grandmothers were at the ready to supply me with chips or crisps. The only question was who could feed me first, they were really vying for my affection. Without Lia, this holiday would not have been possible. Hein wasn’t looking forward to being the only mobile adult on the trip, so he was happy and surprised that things turned out so well.

America is an amazing country for people in wheelchairs. In my wheelchair I rode a bike with E.T., ran from King Kong and rode a boat to Mexico. At Kennedy Space Centre there were special platforms to get me into the bus. Not to mention the abundance of disabled toilets. All restaurants have wheelchair ramps and disabled parking. It’s in the law, something the Americans really have figured out. They’re very lawful people. Only the cottages were not too accessible for wheelchairs.

Lots of family came to welcome us, as well as see us off. I always get emotional, especially when we arrived. It was such a drastically different welcome than what we were used to that it felt more emotionally loaded. I’ll be honest: I’m not that good at saying hello and goodbye. Whenever I’m saying goodbye, I’m thinking: let’s leave quickly. When I arrive at my destination: let’s go home. I prefer to avoid stuff like this altogether. My brother and I are a lot alike in that regard.

Getting back home wasn’t too bad. I spent a whole week editing a holiday video. I also wrote a newsletter about Florida, which turned out pretty well. Ward had gotten infected with Jochem’s American accent, but after a while he lost it again, partly because of Floor’s ridiculing. Floor loves her American clothes and Mambo No. 5 resounds throughout the house. The kids deeply appreciated America.

My carers

Nowadays the question “Who’s taking care of Jeanet?” is more pertinent than “Who’s watching the kids?”. The answer is: a whole lot of friends and family. My main carer is Hein, of course. He works 24 hours a week, so he has time to be with me on most afternoons. Hein is the person I trust the most. He knows the ins and outs and has been there for me since the beginning. On some days he obviously needs a break, but we manage nonetheless. On Monday afternoon it’s my mother’s turn, until Tuesday afternoon. We’ve already developed some rituals. On Tuesday mornings we go into town and eat pastries (my mother likes mocha while I prefer chocolate eclairs), make scrapbooks and watch films on TV. On Wednesday morning there’s another shift change. Every three weeks my brother Anton comes to take care of me. I love him for that. Sometimes his wife Netty tags along too. Other Wednesdays are brightened by: Lucy (who has to commute from Amsterdam and often brings Indian delicacies), Carola with her baby Thomas, and sometimes Gisele, but she works a morning shift on Wednesdays these days. On Thursdays it’s Marjolein or my mother-in-law, Lia. Marjolein has spent most of her maternity leave on me and is in charge of grocery shopping. She’s very punctual, always being here at 8:45 sharp. We always read the newspapers, after which we play bridge. She has become my main bridge partner. Lia is usually early too. She always brings two newspapers, so we have plenty of reading material for the following two hours. Afterwards Lia busies herself with ironing and folding clothes, most of them are Hein’s cotton shirts. It’s a task I used to hate doing. On Fridays at lunchtime Tineke comes to visit me. I’ve known her for so long that we can reminisce about almost anything that ever happened to us. Sometimes Jet, still dressed in her work clothes, eats lunch with me (whenever she manages to escape from the ministry). On Monday and Friday mornings I’m cared for by Inge, our professional carer who does some understated and much appreciated work for us. She always puts on CDs for me, with the volume turned all the way up.
Every week my father-in-law Kees does gardening work: planting bulbs, potting chrysanthemums, weeding, etc. He walks me through his process step by step and never does anything without my express permission. Often when we have friends over, the garden receives high praise. During the winter he puts up bird feeders, meaning we are visited by jays, tomtits, robins, magpies, pigeons and jackdaws at breakfast. The bigger birds in particular often put on daring shows for us.

It’s a sizeable group, my informal care unit. I try to do as much as possible by myself, through mail. Hein is a bit of a worrywort when it comes to appointments made through email, preferring to make them face to face. I, on the other hand, am very happy with the amount of influence that I have on affairs. My knack for remembering details is a huge help in that regard.

Everyone gives it their all and adapts to the difficulties and methods of caring for me. Raising my seat, putting the brakes on, using the rollator, working the stair lift, handling a wheelchair, putting on my jacket and, until recently, getting me on my scooter. All of them tasks that require very specific know-how, which I can luckily still explain to laymen through speech. Other than that, there’s my personal needs: medicinal, dietary, the consistency of my food, the size of my bites and the side of my mouth I prefer to drink from (the right side). And, of course, the dreaded bendy straw, which I prefer to be straightened when I drink from it. There are huge discrepancies between people’s ways of doing some tasks. Some people hand me two meters of scrunched up toilet paper, others give me three sheets, neatly folded. One person will pull my trousers and pants down in one swift motion, while others are more delicate. One thing is consistent though: they all do it with great care. I try not to make caring the main subject of the day, I want them to be sociable and entertaining too. Thus we talk, visit the tea parlour, go for walks, look at photos and other convivial activities. Sometimes I’ll even put them to work; wrapping presents, editing videos, putting pictures in scrapbooks, getting groceries… I fear the day that all of these tasks are done. What will they have to do then?

Thanks, everyone!

Saturday evening

Hein went to play bridge for the first time in a long time, how’d we handle this again? Usually I watch a film with the kids until Hein returns around eleven to tuck us (read: me) in. This evening was no different. Floor couldn’t sleep over at a friend’s house. I prefer having her around when Hein is away. Floor is very responsible and, if she doesn’t panic, she’s very good at making autonomous decisions and judgement calls. Keja was there too. We watched Prince of Egypt. Keja had seen it before and knew the biblical context of the film. Ward laid down in our big bed and snuggled with me. Whenever I tell him I love him, he tells me “I know that by now”. We sleep, but I’m restless. Floor keeps using the bathroom and often informs if Hein is home yet. I hear the kids talking. Only when Hein got home did everyone truly go to sleep. The pack was complete again.


I can get very angry. Not about my disease itself, but its consequences. It’s mainly about my speech problems. In America I’d see the right streets, the exit we were looking for, an empty table at a restaurant, a cozy place to picnic. I’d start to call out. Nobody understands me. I yell louder. Unable to understand, people try to guess, all of the guesses are wrong. In the moment I’d curse their stupidity. It’s only later, when I see myself on camera, when I realise that the noises emanating from my mouth are, indeed, incomprehensible. Especially when I’m mad. I can’t help it. I see and want too much, it’s in my genes.

When one is this dependent on others, little details become so much more important. Small adjustments and quirks are paramount for making my life as comfortable and untroubled as possible. The less I have to discuss these details of my cares with others, the better. Whenever people don’t understand, however, I have to show them the ropes again. Lots of wasted energy, leaving me upset and angry.

There are only two people in the world I can get truly angry with: my mother and Hein. Whenever they don’t understand my needs, I’ll get pissed. “Idiots”, I’ll think, “you should know how this works by now”. I’ll get visibly angry. That’s the price they have to pay for being close to me and having me put my trust in them. I have to vent my anger somewhere. Still, it’s an ugly trait to have and it’s not much of a show of gratitude for Hein and my mother.

Rose coloured glasses

Sometimes I wonder if I’m looking at life through rose coloured goggles. I often read the diary of an American ALS patient named Doug. He writes about his physical deterioration and all of the different machines he needs to live. I noticed I barely write about those at all. Whenever I’m in company, I try to act as normal as present circumstances allow. I hope and believe that the kids’ lives are not too affected by my disease. I try to entertain myself as much as possible, for Hein’s sake. We still do a lot together as a family. Sometimes, however, I’ll wonder if I’m fooling myself. It’s not like I know any better. Dreariness is of no use to me. No, I think that, even though I have ALS, I’m still as pragmatic as ever.