Diary January 2004


Happy New Year

My mother always adds “as best you can”, even when wishing me happy holidays. I don’t like the addition. Why wouldn’t I have a happy new year or a merry Christmas? I understand her hesitation, but that doesn’t mean I like the clear allusions to my illness. These days I don’t look forward as much, preferring to look back and count every new day as a nice extra. My only goal in life is to live my days to the fullest.


All of a sudden, turmoil has gripped the Kroft-van der Vlist household. Hein saw an ad in January for a new, completely handicapped-friendly home with a downstairs bedroom. He casually showed it to me and I kept the article. I put my head in the sand and waited for this to blow over. But it didn’t. Last Friday we went to a viewing of the house. Three other people were interested. Suddenly, it became all too real. It was a beautiful house: underfloor heating, solar panels, a built-in shed and a massive garden. It looked great, but I didn’t want to move. The kids like the house as well, but aren’t eager to move out either. We’ll hear more about it next week. Meanwhile, we continued the discussion: to remodel or to move. In reality, none of us feel like moving. Ward probably didn’t think our plans were as serious as they actually were. After some crying, he started drawing blueprints of our home with a remodelled downstair bedroom. Hein gave up his opera night to discuss a home remodelling. It’s looking like we won’t be moving, to everyone’s relief.

Crap weekend

I’ve had a really crappy weekend. One of those weekends where anything and everything I ask of Hein is too much effort, garnering nothing but dismissive replies. All of his frustration about how my illness affects his life spilled out. I can always tell when Hein is in a foul mood, so for the rest of the day I exercised caution around him. But eventually, the bomb went off. All I could do was give vacuous advice, like “being angry or grumpy doesn’t solve anything”. Not exactly helpful. ALS affects not just its patients, but their families too.

Oral hygiene

My oral hygiene is less than ideal, a common problem among ALS patients. Hein brushes my teeth once a day. It’s less than optimal. It’s especially difficult to brush the teeth of someone who cannot properly keep her mouth open, is scared of her front teeth falling out and unable to tilt her head back. I haven’t been to a dentist for a check-up for over six years. Before my tooth broke, the dentist said I had a ton of cavities, but decided not to operate because it wasn’t bothering me. This month I woke up with a swollen lip, which turned into a swollen cheek. It turned out that my broken tooth lead to a jaw infection. Besides the infection, my cavities were especially noticeable on X-ray. If it happens again, my tooth will have to be pulled and be replaced by a bridge. That way, most of my cavities will be gone anyhow. It would be a multiple-day operation. Ugh. I hope the infection is gone for good.

May holiday

We’ve been looking for a suitable holiday destination in England for a long time. And we’ve finally found one. It’s an 8-person house close to Oxford. I’m already looking forward to it. Thanks to Lieke for spotting it in a brochure and to Hein for finding it on the Internet.

One week offline

A small act can have big consequences. On friday morning, my carer turned our circuit breaker off and then immediately turned it back on, while I was on my PC. Afterwards, I couldn’t get my computer to connect to the server. On Friday evening, our computer expert made the diagnosis: our modem had burnt through. Easy peasy, just buy a new one, right? Not so when computers are involved. It’s like they’re living creatures. Everything refused to work and our expert didn’t have time to fix it because of an operation on Tuesday. He tried to get it to work until 22:30 on Monday night, but to no avail. So, no internet. It’s a disaster to mee, but it’s not fun for Floor either, who has a busy social life on MSN. Ward isn’t pleased either, because he had just joined a clan on his Playstation. He has been doing his homework more, however. Modern-day families can’t do without the internet. I feel isolated from my social life. My whole timetable was thrown off. I played what felt like 15,000 games of bridge. Sigh. And just when I thought things couldn’t get any worse, it turned out that I couldn’t even send any emails. When the whole things was resolved, I could no longer receive any emails. I think our “expert” needs a break.

The architect

We’re nothing if not goal-oriented. We’ve already had two meetings with an architect. It looks like the blueprint is finished, involving as little demolition as possible. That’s going to be the most difficult part and will require some detailed direction. Luckily, the building market isn’t doing that well, so the builders aren’t likely to be hasty and sloppy. I like working on the house. It’s something new. We’ve been looking at other people’s sunrooms, which is great for meeting new people.