Diary January 2001


La Vie en Rose

My book was warmly received. The best praise I got was from my cousin Jos:
“Whenever we talk about you at birthdays, it’s mostly about the symptoms of your disease (“she can’t do this”, “she needs help with that”, etc.), because of which my view of your life became very skewed. Whenever I thought of you, I thought of someone who’s wasting away in a wheelchair. Maybe that’s why your insights on your life are that much more significant. Sure, it’s sombre at times, what with your deteriorating motor skills, but it’s largely overshadowed by your positivity.”
My mother agreed with my cousin wholeheartedly, but did think that my book makes my situation seem too rosy. She’s right, I didn’t spend ink on my sadness, anger and fear. Before I got sick, I used my diary to describe my sadness and other emotions, but by now my diary has become a log of my happy memories.

Going out

Floor took a train to Drachten this morning, accompanied by two friends. She’s sleeping over at our family friends’ house. I hope the girls will have a good time. Their programme consists of going into town, watching movies, going swimming, visiting the cinema and, of course, being silly. They wouldn’t tell me, but they’d love to use our friends’ sauna, too. I thought all three were equipped with a cellphone, those modern youths. It turned out that only Floor had one, so she was flooded with phone calls from her friends’ parents asking if the train journey had gone according to plan. It did, and when they returned they seemed very pleased with themselves. Everything went according to programme. A well-planned trip is always a great experience. Ward was glad his sister was back home. He even made a “Welcome Home” sign.

Ice skating

Winter was in the air and the urge to go skating got the better of us. On Saturday, Hein took Ward to the ice rink for the first time. It’s harder than he anticipated, so he’ll have to train some more this winter. Thus, Saturday has become family ice skating day. Me? I spend that time at home, listening to music and napping. I’ll gladly stay at home alone if it means that Ward can learn how to skate. Secretly, I’m hoping that the water won’t freeze this year. I miss long-distance skating a lot.
No dice. It’s freezing, and the outside skating rinks have already opened their doors. Hein is buying Ward skates today. He’s hooked. Floor already knows how to skate, so she can wear my racing skates. I still feel giddy whenever there’s natural ice and it always surprises me that the majority of people don’t match my excitement. I guess it’s another instinct that hasn’t adapted to my ALS yet. Luckily, it’ll thaw soon.


I don’t answer my emails myself anymore. I’ve started doing dictation. Inge is my typist, something she finds enjoyable. She’s a much swifter typer than I am. I’m still intelligible to some people, which I use to my advantage. I talk as much as possible. Stubborn, yes, but effective too.


I try not to plan too far into the future, not thinking about the future too much, living in the present. December felt especially fleeting. Planning holidays, however, is a necessary exception to that rule. Poorly planned holidays often fail. Yesterday, we slew some dragons. Spring break will be spent on Ameland (looking forward to it), our May holiday will be in France (I’m glad we all had one specific week off). Our summer holiday was a tough nut to crack because most places we thought of were already booked, but crack it we did. We’re going to Île d’Oléron in western France, in a wheelchair-accessible cottage. Even while avoiding it, the future is something we all must face.


My fringe is completely grey. Usually I paint my hair, but now that my neck has become less resistant, I’m less eager to sit through long visits to the hairdresser. Cutting my hair is fine, but having to sit in an uncomfortable chair for 45 minutes is a less attractive prospect. Thus, I’ve been grey for a week. I bought hair dye to use in the shower. Some people have suggested that I stop dying my hair altogether. The kids couldn’t disagree more. They don’t like my grey hair one bit. Hein is fine with it. Still, aren’t kids often your most honest critics? For now, I’ll keep dying it. I’ve lost too many other cosmetic options since I got sick.
Hein dyed my hair on Monday. Spouses of ALS patients are often assigned some unexpected tasks.

Restless legs

For many nights straight, I’ve been plagued with restless legs. I’ve had it before, but the past few nights have been especially horrible. My legs become horribly stiff or spasm and I have the constant urge to stretch them out. I twist and turn, causing the blanket to shift and ruffle, waking Hein up. Last night I took some valium. I panicked and felt very hot. After the tablet took effect, things went wetter. I’m not having trouble breathing, no nightmares or headaches. I take 4mg of sirdalud thrice a day to prevent muscle stiffness. I heard that quinine prevents cramping, so I’ve started drinking tonic water. My stomach is bubbly and gassy. It’s probably not a fantastic remedy in the long run. I’ve started dreading the nighttime. I feel fine by day. I emailed my neurologist and GP, who replied promptly. I’m using quinine pills now. The first night was fantastic.

Status aparte

Until May of last year, I watched TV on the couch. During especially scary or romantic films, Ward and Floor would cuddle up to me. I loved that. Now, I have my own recliner. It’s on wheels and motorized, so it can be put in almost any position. It’s useful and comfortable, but also lonely. Until November of last year, I could sit in the passenger seat of the car. Sometimes during drives, I fell asleep with one of the kids at my side. By now, I have my own sturdy wheelchair in the back of the car, with both kids in the front seat, because the seats didn’t offer enough support. Thus, my status as a separate person is cemented more and more. My bed is the only place where I’m not alone. Still, I isolate myself, because I’m scared of getting tangled under the covers or something falling on top of me. The thought alone makes me uneasy. I keep everyone at a distance, but in bed it’s a choice (because the alternative is worse) to be separate.

Head-guided computer

I took a bold step and started practising with a head mouse. Using the IR glasses was too cumbersome, so I decided to just put the dot between my eyes again. I often hold a key for too long, so I sometimes type letters twice. My head also skews too much so I often have to recalibrate the cursor so its resting position is in the middle of the screen. At every small small nudge against the table or shake of the floor, the cursor vibrates, so that doesn’t help. I noticed all of this within half an hour of practise. It’s slow, but at least I don’t become too tired. Practise makes perfect and I’m not too discontent with the mouse. I trained again the next day, but the thing is extremely sensitive and the cursor vibrates constantly. I couldn’t keep the thing in check. That sentence alone took me half an hour to type. I’ve discovered what I was doing wrong today. The laptop screen was too askew, so half of the screen was too far away to register the mouse. Patience is a useful characteristic for ALS patients. Right now I’m on day three of using the mouse. It’s gotten worse again, my mouse sometimes flied off the screen and the shaking hasn’t subsided. I’m frustrated, so I think I’m going to call the retailer. These sentences took one hour to write. What a ripoff. I have to try to sit straight, which is a struggle since my head and neck are not really up to the task of assuming an upright position. That took two hours to write. It’s dreadful. I feel like a terrier, I still want to go on trying to see if things get better. I tried putting on a new dot to see if it helps, but it hasn’t helped too much. For now, I’ll stop complaining about my typing vicissitudes.