Diary December 1999


Sunday night blues

What’s the deal with Sunday nights? Yesterday (Sunday) we had a lovely day. Floor and Ward were in pyjamas until 1:30. They had both built K’nex structures. Hein went into town to buy presents for Sinterklaas (a Dutch tradition similar to Christmas). In the meantime, we were making presents for each other. Celine Dion on the radio, candles lit, soda and biscuits. I asked Ward to put the kettle on, but he doesn’t know how. Floor helps him, but is a bit too assertive. The harmony is gone. Hein comes back home and accidentally spoils that Ward will be getting a steering wheel from Sinterklaas, something that can’t really be un-spoiled. In short: a bit of a fuss. Once irritation rears its ugly head, it lingers. I think Hein hides in the kitchen too much when he’s cooking dinner, listening to his own music. He does it because he thinks his music is incompatible with ours. We’re a Mambo No. 5 family after all, not a Bach household. Other than that, he thinks he’s overworking himself. Finally, Hein breaks a glass of red wine. After some cursing and ranting, the downward spiral seems to have fixed itself. Things are back to normal. Why, though, does this happen every weekend? Hein finds weekends difficult. He’s on his own, kids at home, lots of organising to do, little time for relaxation. On Sunday night he’s ready to burst. It’s not exactly fun.


I’ve started preparations for Sinterklaas: writing poems, thinking of presents. Commenced preparations way in advance and finished them the day beforehand, I’m such an organisational talent. I’ve told everyone who cared for me to start doing poetry too, but everyone is busy, far too busy. Busy like I would have been, probably. I’m never very busy anymore, in fact I’ve banished it from my life. The only thing that remains is my impatience. But I digress: Sinterklaas. Ward stopped believing in Saint Nick last year. Luckily, it turned out that he had a real knack for wrapping other people’s presents. Less work for me. Floor wasn’t too happy with her Secret Santa match-up. The best thing about Sinterklaas is seeing other people open up the presents you bought and hearing them read out the poem you put so much work into, especially when the kids are present. Often I’ll get feedback on my poems after the kids take shifty peeks at my computer screen. The most rewarding thing about giving gifts is the look the recipient has on their face when they open the present you bought them. Everytime a poem I penned is read aloud, the kids glance at me knowingly, because they’d read the whole thing before. The best part of Sinterklaas was that I was part of the experience. The kids are under the impression that every single one of their presents was hand-picked by me and Hein, so we get all the credit. This year it took a fairly long time; 7 till 12, with a short intermission in the form of dinner. I know our family is pretty huge, but still. That’s a long time. Every year we pledge to not bring as many gifts as the previous years, but last-minute panic that we haven’t bought enough always drives the number of gifts up. We got home at 1, but Hein and Ward stayed up till 3, playing Ward’s new racing game. It’s already become a tradition. Last year, Ward and Hein did the same thing with Ward’s new Nintendo. Boys will be boys. This year’s Sinterklaas was a big success. The end of Sinterklaas weekend was perfect: Ward never even changed out of his pyjamas. He and Floor played together harmoniously. No Sunday night blues, probably because my mother was there. What more do you need?


On Tuesday, December 7th my lungs were examined again. The last check-up was four months ago, the one with the disastrous results. That time we agreed that I would get a PEG (feeding tube) if my lung capacity dipped below 1.4 litres or if eating became too difficult. Back then my lungs had gone from 2.5 to 1.8 litres in 6 months. If that rate was constant, I would have hit 1.3/1.4 litres by now. I was doing the math in my head. When would I have to get a PEG? No specific moment stood out to me as very convenient. There was Christmas, then another holiday, then I’d have to help Floor look for a good high school and help her with her finals. In short: yuck. Lots of second thoughts, no motivation, even though I know that getting a PEG is inevitable and won’t be the end of the world.

Still, how is one expected to act during one of these potentially life-changing check-ups? My guess was rational and quasi nonchalant; my lung capacity had probably dipped below 1.4 litres, but if it hadn’t: great! That was how I rationalised it. My emotions, on the other hand, were raging with anti-PEG sentiment. An even more nauseating thought cropped up: if the rate of my lung capacity decline was constant, I would surely die soon. With that whirlwind of emotions raging in the back of my head, I started breathing. There was a screen that showed a small wave every time I inhaled. I immediately asked the lady who worked the machine what her verdict was. Turns out: two litres!!! That’s 60% of normal capacity. It had actually gotten better since my last check-up. I immediately burst into tears. What do you mean, nonchalant? I was nervous as hell. Every time I tell someone about it, I get emotional all over again. My PEG deadline has been postponed too. Finally, some respite.


While we talked about school musicals, Floor’s teacher asked me if I wanted to help the school write their own musical. I was definitely interested. At night I was restless, coming up with ideas for the show (while completely forgetting about Floor’s prelims). The musical had already started coming together in my head. I’d already cooked up a setting and knew exactly what kind of music would go well with it. To put it succinctly: just give me a simple task and I’ll go nuts with it. All of my pent up energy has to go somewhere. Within me, a creative storm is brewing, while on the outside, I feel completely normal and at ease for once. I had been dreading January and February: such empty months. Now though, I have a goal set for myself.


Right after we got back from America, I had another nasty fall. The back of my head hit a small cabinet. My head hurt for days afterwards. Even when people kissed me I’d feel a twang in my neck. With time, as well as physical therapy, the pain disappeared. I wish I could say the same for my fear of falling. I don’t walk on my own anymore. There is always someone with me to hold my rollator. Not that long ago I went grocery shopping with Hein and Ward. I prefer to sit in the front seat for safety reasons, but on shorter rides I’m comfortable in my wheelchair in the back of the car. Hein and Ward strap me in before we leave. This time though, they had botched it. I felt the wheelchair rolling back and forth. I yelled out. Hein quickly started looking for a place to park, but hit the brakes too suddenly. I was launched from my chair and fell into the gap between the front and back seats. It took fifteen minutes to get me back into my chair. By that time Hein’s face was drenched in sweat. Ward held my head because it tends to roll back, which hurts. It turned out that one of the pins that held me in place hadn’t been fastened. That’s what shared responsibility gets you. This fall wasn’t as bad as the last one, though. It didn’t hurt as much and it’s no use crying over spilled milk. Still, I think I’d prefer to just sit in the front seat next time.

The Christmas Tree

Decorating the Christmas tree is a family ritual. Together we pick out the prettiest tree from our usual seller’s stock. We all have high standards for the size and required fullness. A tree is only allowed inside our house if all of our standards have been met, so decision have to be unanimous. It’s the polder model in a nutshell. It’s never too early to teach kids these things. This year we went tree shopping on a Friday afternoon. Floor couldn’t come, she was returning a defective lava lamp with Jonna. We’ve never decided on a tree as fast as this one. As soon as we got home Hein set it up in the living room, ready for decoration. After Floor got back, we did. Ward put on a Christmas CD, Hein touched up the baubles and Floor distributed the silver and red baubles as evenly as possible on the tree’s branches, with which I assisted her. Ward picked a cozy spot for the nativity scene. It’s on a silver tray, decorated with straw and cuttings from our guinea pig’s cage. The whole thing is lit by a little light on the stable’s ceiling. The three Wise Men have already arrived at the scene, too. All in all, it was a cosy, homely evening. All that’s left to do now are the Christmas arrangements, the smaller trees for our bedrooms and putting a wreath on the front door. Other than that, we are ready for Christmas. Seeing as we’ll be celebrating New Year’s Eve at home this year, we may even toss the tree in the millennium fire ourselves, that is if our neighbour boys decide to build another fire like last year. We’re already looking forward to it.


Eating is becoming more difficult. As far as I know, my tongue is the main culprit. The tongue transports and distributes food in the mouth; left to right, front to back. My tongue barely moves at all. I chew everything with my front teeth. I’m afraid that when I chew with my molars, my food could get jammed in my throat. The hardest food to eat is food with parts that vary in hardness, because I have to manually separate the hard and soft parts with my tongue, because the hard parts have to be molared. It’s a whole ordeal. An apple pastry is more difficult to eat than just the apple parts without puff pastry. Last week I started eating wheaties for breakfast after years of eating muesli. The dried banana bits and the raisins in the muesli became too difficult to chew. For lunch I have two crustless sandwiches with some sort of creamy filling. My dinner is either crushed or pureed. Don’t distract me too much during supper, I have to concentrate. Just one mis-timed joke can lead to some less than savoury accidents. Eating is hard work for me. Frustrating, when everyone else can stuff their mouths to their hearts’ content, while even making conversation on the side. Don’t feel too bad for me, though. There’s still a whole arsenal of tasty foods I can eat, both as main courses and snacks.

Monday, December 20th, 1999

It’s been a slow week. Dreary weather, darkness and not much distraction. The weekend wasn’t much better. I didn’t really have anything to do other than bridge. On Saturday evening it was just Ward and me at home. He’s very caring when we’re alone. The TV was acting up. Everytime it did, Ward eagerly fixed it, despite the fact that he’s very busy with SimCity 3000 (I pulled a list of cheats and tips from the internet for him). “Are you alright, mum?” is a very common question for him (especially when I have to cough) and “Is everything fine?” is abundant too (whenever he’s done something for me). Floor came back from her sleepover early on Sunday. She immediately started livening up the place; lighting candles, putting the kettle on, hanging some more Christmas decorations. To complete the picture she even put on her pajamas. Ward hadn’t taken his off either, after all. We had shawarma that night, on Floor’s request. She couldn’t wait to prepare dinner, so in the meantime she helped prepare pea soup. She’s so thoughtful and sweet. On Saturday I went to the supermarket with her. Hein didn’t like the idea of it at first, but I trust her completely. Things went smoothly. We boughts lots of delicious things. We ran into a few (sometimes vague) acquaintances. They greeted me from a distance, preferring not to get close. I guess we’re equally scared of each other. While that may be a bit sad, it does somehow feel comforting. In the afternoon Ward made some Christmas floral arrangements with the help of my mother. He also made his own Christmas cards using the PC. When it comes to holiday decorations, we’re sufficiently stocked.

Christmas, 1999

The party was off to a stressful start on December 24th. The table had to be set (tablecloth, streamers, decorations and lots of candles) before we went to mass. It was the first time we went to mass in Oegstgeest. In the years prior we had always gone to the Pieterskerk (Peter’s Church) in Leiden. Marjolein, Erik and their kids were there too. I was surprised, considering Erik is a hardened atheist. Hein wanted to leave the house at 18:00 (mass started at 19:00, so we were way too early for my liking). Hallelujah. We got there at 18:10. While Hein scoped out the church for a good place to put a wheelchair, I held aside by a kind lady from the church. We were assigned seats on the first row, in front of the altar. We accepted our prime seats with a bit of apprehension. We were not the most faithful churchgoers after all, only going to mass once every year, so we didn’t want to look pontifical. To our surprise we saw lots of familiar faces sitting in the pews, mostly neighbours. Floor waited for Marjolein to catch up. The church was still filling up, but the first row stayed mostly vacant, so Marjolein and Erik took seats beside us. It was awkward. The pastor walked by us three times in total, robe billowing and his hand outstretched. He shook everyone’s hands, once as a formality, once during communion and once before we left the church. That’s a lot of handshaking for someone who can’t move their arms. Almost as awkward as being a devout atheist sitting in the first row during mass. Still, after the solidarity of mass and the deliciousness of Christmas dinner (not to mention the mulled wine), Christmas was off to a good start.

Christmas letter

Dear friends,

I’ve been hesitant about writing a Christmas letter this year. Because of my homepage, writing a Christmas letter has become kind of redundant. I write about my life every single month, what I’ve been up to, how I’ve been. What more can I add? Additionally, I’ll be honest, I’m not looking forward to the year 2000. Looking back is a lot easier than looking forward.

1999 was a good year. We did lots of holidaying; Germany, Denmark, Zealand, America. My homepage went up in August and I’ve gotten a lot of positive feedback for it. Not too many responses from strangers; there aren’t that many people from the ALS community who speak Dutch.

I can still make myself heard and walking and standing up are manageable too. I still laugh and smile and being in pleasant company still brings me joy. I still manage to amuse myself and have made describing my day-to-day life my hobby. Always look for possibilities, never dwell on impossibilities.

The primary thing that keeps me going is my family. The daily ritual of school and work, coming home to hot tea and chocolates, helping with homework, listening to stories, candles and music in a cozy and warm December, watching TV together, preparing dinner together and every other little thing we do. I like to imagine that Floor and Ward’s lives are as normal as they can be. We’ve at least become more homely than before. We used to go cycling and hiking more. Floor and Ward are successfully adjusting to the care I require. Taking pills, blowing my nose; “is that OK, mum?”. Yesterday Floor took me to the supermarket in my wheelchair for the first time. It felt like the most normal thing in the world. Hein finds caregiving difficult sometimes, especially during weekends. Despite that, we manage just fine.

Of course the fact that you visit me, go with me on holidays, send me emails, make me mixtapes, play bridge with me, invite us to dinner, scan photos for me, set up and update my homepage, take Hein biking or hiking, take care of the garden, take me out for a walk, go to the movies with me (it wouldn’t hurt if we did that more often) and come over on Sunday afternoons (this too) is a huge help. In my October and November diary I wrote about my weekly schedule and all of my different carers.

Next year is going to be hectic. Floor has to pick her high school, a process that starts in January. In February there’s the dreaded CITO test, the final examination of middle school. Ward can rest easy until his next presentation in April. Hein is in charge of the whole thing. I’ll hopefully be writing a school musical for grade 6. Building a website for the Dr. Lawrence LeShan Foundation is also on my to-do list. Summarily: life goes on, and so will household tasks. If anyone has a task cut out for me, feel free to tell me.

We, Hein, Floor, Ward and me, wish you a merry Christmas and a happy 2000.