The other day, someone gave my family their compliments for being able to deal with a \u201cdifficult woman\u201d 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: \u201cWe, and the carers at her nursing home, did not have an easy time helping her. She had very high standards\u201d. That\u2019s the crux of the matter: are you in a position to make demands from people you\u2019re totally dependent on? \u201cOf course,\u201d everyone would say. But to what extent? Could I demand showering daily? I wouldn\u2019t 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\u2019ve slipped down for the umpteenth time? For my back support to be readjusted after I\u2019ve had lunch? Can I expect my head to be put back on my headrest after we hit a nasty bump in the road? I\u2019ve 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\u2019s 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\u2019m 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\u2019t get my way right away. I\u2019ll shoot them dirty looks. In those situations, not only am I being difficult, but annoying to boot. <\/p>\n
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 (\u201cI\u2019m a housewife, of course I\u2019m an alcoholic.\u201d) 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 \u201cwicked nice\u201d. Rural ones are, at least.<\/p>\n
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\u2019t understand my words anymore.<\/p>\n
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: \u201cinvalid person inbound\u201d. Handicapped toilets everywhere, even though some of them had huge obstructive sinks. Old buildings proved to be the biggest obstacles. For instance, I didn\u2019t get to see the dining hall from Harry Potter. <\/p>\n
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\u2019t 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\u2019ve never seen a shop more beautiful.
\nIn short, I\u2019ve had a great holiday. The weather, you ask? Typically English. But overall, the rain never really bothered us. <\/p>\n
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\u2019s because I eat too fast and don\u2019t take the time to cough after I\u2019ve had food.<\/p>\n
We\u2019ve been trying to find a new help, not an easy task. Not a fun one either. I\u2019d prefer someone younger who likes to talk. A Chinese lady phone in and she\u2019s already become my favourite. Her Dutch isn\u2019t great, though. I expect some Babylonian misunderstandings and a lot of frustration. She\u2019ll be coming this afternoon. We\u2019ll see. We\u2019ve also put up flyers in the hospital and a community college, but they haven\u2019t gotten too many responses. A university student would be nice, especially ones with a flexible time table. <\/p>\n
She was everything I\u2019d expected. She\u2019d 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\u2019d 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 \u201cyes, yes\u201d, she didn\u2019t understand the minute details, like \u201cangled, up, less full\u201d. The patient lift was another obstacle she couldn\u2019t 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. <\/p>\n
It\u2019s still sinking in for me, but this Pentecost we visited Paris. I wanted the kids to experience it. Our journey to Paris wasn\u2019t 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.<\/p>\n
Paris is not suited for handicapped people. Even the Dom des Invalides wasn\u2019t wheelchair-accessible. Hein was furious and spoke loudly to the guard, who asked him to be quiet. He told us that the building couldn\u2019t 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.<\/p>\n","protected":false},"excerpt":{"rendered":"
A difficult person The other day, someone gave my family their compliments for being able to deal with a \u201cdifficult woman\u201d 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: \u201cWe, and the … <\/p>\n