Diary May 2004


A difficult person

The other day, someone gave my family their compliments for being able to deal with a “difficult woman” like me. That was a hard pill to swallow. Me? Difficult? Some time later, I got an email from someone who, alongsider her sister, took care of her aunt. She wrote: “We, and the carers at her nursing home, did not have an easy time helping her. She had very high standards”. That’s the crux of the matter: are you in a position to make demands from people you’re totally dependent on? “Of course,” everyone would say. But to what extent? Could I demand showering daily? I wouldn’t want to, by the way. But could I demand to eat without a bib (I hate that thing)? Could I demand a drink or should I wait until someone makes time for me? Am I allowed to ask for my arms to be readjusted when they’ve slipped down for the umpteenth time? For my back support to be readjusted after I’ve had lunch? Can I expect my head to be put back on my headrest after we hit a nasty bump in the road? I’ve automatically gone from demanding to requesting. Asking is friendlier. But every question from me has me questioning myself first: am I irritated or uncomfortable to such an extent that I want something done about it? It’s not a question a lot of people with intact faculties ask themselves. Every question from me is a burden to others. Another bathroom visit? Of course I’m difficult. It manifests particularly clearly on holidays. I bombard my companions with questions. But the worst part is, sometimes I get mad when I don’t get my way right away. I’ll shoot them dirty looks. In those situations, not only am I being difficult, but annoying to boot.


England is a fantastic country. Never before have we had this many conversations with the locals as on this holiday. When we were on a walk, an obviously upper-class lady with typical dark English humor (“I’m a housewife, of course I’m an alcoholic.”) warned us about a wheelchair-inaccessible path and showed us a way to avoid traffic-heavy areas, and in passing she showed us her impressive home. In a pub we were treated to a round on the house and we got a tour of the local church. According to Floor, English people are “wicked nice”. Rural ones are, at least.

The house was pretty great, as was its location. During family outings like this one, I always notice how much my condition has deteriorated. Eating was more tiresome, my neck was weaker and Gisele couldn’t understand my words anymore.

England is fairly well-suited for disabled people. We took a train to London, which went swimmingly. There was a lot of helpful personnel on the platforms and my coming was relayed long beforehand: “invalid person inbound”. Handicapped toilets everywhere, even though some of them had huge obstructive sinks. Old buildings proved to be the biggest obstacles. For instance, I didn’t get to see the dining hall from Harry Potter.

We did all kinds of typical English activities, like visiting a garden, a castle, a typical English hamlet, Oxford, London and walks through the countryside, on muddy forgotten paths. And of course, we visited a pub and had scones and full English breakfast (though I didn’t partake). Oxford was impressive; beautiful, old colleges with beautiful courtyards, lawns and plenty of vantage points. London, however, was too crowded. Every sidewalk was slightly sloped, so my head was never quite on my headrest. Harrods left an impression; I’ve never seen a shop more beautiful.
In short, I’ve had a great holiday. The weather, you ask? Typically English. But overall, the rain never really bothered us.


In England, I had two coughing fits. In Oxford, we were on our way to an Evening Song (a sung tribute) when I felt the lump of slime forming in my throat. I had a seat nonetheless, but after a while I decided to move. My coughing was disturbing the choir. Not a great place to hack your lungs out. On our way back, I had another fit on the ship. Just when we were about to disembark I felt a lump again. Again, not great timing for a coughing fit. I panicked, and so did the people around me. They pulled me up and slapped me on the back. I managed to clear my throat just in time. I think it’s because I eat too fast and don’t take the time to cough after I’ve had food.

A Chinese help

We’ve been trying to find a new help, not an easy task. Not a fun one either. I’d prefer someone younger who likes to talk. A Chinese lady phone in and she’s already become my favourite. Her Dutch isn’t great, though. I expect some Babylonian misunderstandings and a lot of frustration. She’ll be coming this afternoon. We’ll see. We’ve also put up flyers in the hospital and a community college, but they haven’t gotten too many responses. A university student would be nice, especially ones with a flexible time table.

She was everything I’d expected. She’d written a note with her name on it. She had been living in the Netherlands for a year now and her Dutch was passable, although the stories she told were a bit confusing at times. She’d asked her mother in China for advice before she met me. Her wise mother had told her to took me straight in the eyes while talking to me; some good advice. Before she started her trial period, I was optimistic, despite the fact that she had no prior experience. But her stumbling blocks were the small things. Despite her constant repetition of “yes, yes”, she didn’t understand the minute details, like “angled, up, less full”. The patient lift was another obstacle she couldn’t scale. With a pained heart, I said goodbye to her. But a lack of experience and language expertise are not to be underestimated. That marked the end of my exotic Chinese adventure.


It’s still sinking in for me, but this Pentecost we visited Paris. I wanted the kids to experience it. Our journey to Paris wasn’t too hot. Saturday evening was very agreeable. We spent it sitting at a cafe and having a nighttime stroll through the Parisian streets. There were a lot of people about and the city lit up like a fairytale. It made a lasting impression on the kids. Our hotel was in the vicinity of Les Halles, in central Paris, close to most tourist attractions. The following day we visited the Eiffel Tower and I had my first ever boat ride on the river Seine.

Paris is not suited for handicapped people. Even the Dom des Invalides wasn’t wheelchair-accessible. Hein was furious and spoke loudly to the guard, who asked him to be quiet. He told us that the building couldn’t get a ramp installed because it was national heritage. The rest of Paris was much of the same. For bathroom visits, we had to go all the way back to our hotel. Despite that, it was a fun trip.