Diary February 2007


Summer holiday

It’s finally booked! Destination: Germany, more accurately the lakes region north of Berlin. We have a traveller’s guide to Germany with more than 200 pages of wheelchair-accessible holiday destinations. Kudos to the Germans for being so forward-thinking. Sadly, a large number of the suitable destinations were tiny holiday homes or cramped hotel suites. Eventually, we found two suitable bungalow parks. As always, the kids are coming with us. The brochure advertised a lot of water (meaning a lot of mosquitos). We’re hoping that the surrounding villages will be interesting and cultural. Berlin is closeby, too.

What I’ve noticed while I was looking for handicap accessible destinations is that France has the most of them. All of them seem to be owned by Dutch people who moved to France. England is the only place where the holiday homes are actually owned by English people. Every village in the UK has at least one handicap bathroom. They’re ahead of the curve, while France is a disaster on that front. But oh well, France is still the most popular holiday destination for the Dutch, so by January everything was already taken.


It is said that there isn’t a concrete cause of ALS, but that it may have something to do with toxic substances. While my brother and I were reminiscing, the subject of our old basement came up. It was a large room with no windows and a lot of colourful lighting, perfect for house parties. It was where I’d set up my darkroom (for developing photographs). I spent night after night down there, poring over the containers of developer. There was no ventilation to speak of down there. My brother insinuated my time spent there may have been the cause of my illness. I’d never thought about it that way. It isn’t. Still, it’s something to think about.

Floor the carer

My carer Brenda has gone on holiday to Canada for four weeks, leaving a gap of four Mondays and four Tuesday mornings in our planning. Luckily, we found suitable replacements for most days, with Floor covering the remaining ones. Last Monday was Floor’s first day as a carer. I was worried and anticipated some discrepancies between her plans and my schedule. The truth was the complete opposite. Because of the fact that she’d celebrated Carnival the day prior, I was expecting her to sleep in, but to my surprise, she was up and ready by 9 the following morning, asking me to walk her through whatever I needed her to do. Her whole day was about me. “What do you want to do next?” and “What should I do next?” were the two questions that dictated the day. I was surprised but very glad to hear she was excited for more days like this one.


My neck always tilts to the right, which is why, every now and then, I need to reposition myself to keep my balance. It takes a lot of effort for me to move my head, and the corresponding groaning and the fact that my eyes roll back in my head makes it a bit confusing for people around me. Oftentimes, people get the wrong message and think I like my head tilted to the right, while that’s the exact thing I’m trying to avoid. Others think there’s something above them. After all, I’m looking up. Everyone starts looking up and guessing what I’m looking at. It’s difficult for me to explain that all I’m doing is readjusting my head. Getting complicated ideas across with looks alone is very difficult. Most people just stare at me, nonplussed.


The night is too hot for me by about eight to ten degrees. What difference just four degrees would make. Because of the fact that we’re experiencing a lot of wind right now, we can’t open up the windows. As the night progresses, our bedroom gets hotter and hotter. I look in envy as Hein shrugs off his blanket, wishing I could do the same. I get restless, which only makes things worse. Maybe it’s because I’m in menopause. It doesn’t manifest as hot flashes, but as a general increase in body temperature. It makes my nights feel like I’m in an oven.


Ward went skiing during his winter break. I missed my TV buddy/chocolate feeder. Floor was home a bit more to compensate, so I’m not complaining. It’s going to be a busy year. Ward will be going to Barcelona and Rome and also has a cycling holiday planned with Hein. Floor will be going to Mexico and has a lot of small outings planned. Not to mention Floor’s plans to move into student housing. That’s going to take some getting used to. The kids do the most minute but meaningful tasks for me: feeding me chocolates, wiping my mouth with a napkin, giving me my meds, brushing my teeth and adjusting my backrest.