I’ve been getting reactions from strangers on my homepage. I get a kick out of it, but it’s a lot of work to get through, because I want to answer every question and comment. They’re from America, Canada (a Dutch expat) and from Belgium. The Internet is a marvellous invention.

Between treatment and answering questions I’ve found the time to update my homepage. All on my own, of which I’m fairly proud. I’m becoming more and more proficient with my computer. There’s finally a picture of Hein on my page. I think people were becoming a bit curious about his absence. I think it’s a great picture, maybe because it features myself when my face was a bit more expressive than it is now. I also wrote three columns. I don’t know if they’re any good (I doubt it), but they had been stuck in my head for some time and I felt like finally putting them to paper.

TV

I watched a programme about cancer yesterday. There were three female guests, all of them suffering from metastases. One of the women said she had grown world-weary and decided to halt treatment. One of the women was a fighter, she was still young. The third one was still in treatment so she could spend as much time with her family as possible. I saw a bit of myself in every one of them.

PEG

Let’s just get all of the bad news out of the way. My lung capacity has decreased to 55%, a drastic and noticeable decline. I’m having trouble taking deep breaths and drinking the last drops of food through my straw. The doctor actually panicked a bit and immediately prescribed me a PEG, a feeding tube. For the first time, I felt like this would be my last summer. I’ve tried to avoid this mindset of finality, but this time it overpowered me. It’s a reality that one has to live with, however difficult that may be. Then again, I’ve always had trouble giving up.
I’m not looking forward to getting a PEG at all. The thought of having a tube protruding from my stomach is horrifying. Not just having it installed, but eating from it. My neurologist says it should be installed before we go on holiday to Florida. He is an expert on the subject of PEGs, after all. I’m hesitant, but Hein probably agrees with the doctor. He’s always been more concerned and comfortable with authority than me.
I don’t really want to think about the PEG. I still have enough lung capacity and I’m not losing weight. All in due time. That’s always been a motto I’ve lived by. It’s present in all facets of my life, whether it’s finding a babysitter for the kids or life-changing surgery. A solution will present itself.

Einzelgänger

We chatted with our GP again last week. They’re good talks. It’s a good way for me and Hein to talk about subjects that we tend to avoid in normal life. I’ve noticed I’m a bit of an einzelganger when it comes to processing emotions. I like to figure things out by myself. I don’t feel lonely in that, even if I’m alone. We spend most of our time on our own and I’m comfortable enough with myself that it doesn’t bother me. Didn’t Hein think I was autonomous enough to begin with? I’ve been introverted for as long as I can remember. I need my space. I like that sentiment: I feel at home when I’m with myself. Isolation is a rare commodity. Alone? Yes. Lonely? No.

Eating

I never expected to be fed by anyone other than Hein, maybe my mother. I found it highly embarrassing. In Zealand, these principles started to fade. Carola asked me if I wanted some yogurt and custard and fed it to me. She was such a natural at it that I barely minded. It started happening more often over the course of our holiday. Another preconception that disappeared during that time was the thought that I’d never eat out anymore. Two months on, I’m letting anyone and everyone put food in my mouth and wipe my chin. Even in public I’m eating with reckless abandon. On Fridays I like to eat a salmon salad sandwich at the tea parlour. Creamy foods go down easier, but tends to be more disgusting. In short, life turns on a dime. Unexpected but very welcome.
The other day I accidentally bit my mum’s finger. I’ve noticed that she’s still a bit apprehensive, fearing I’ll bite her if she feeds me again. She looks at me with an expression that tells me “don’t you dare pull that again” and quicky retracts her finger.
Every time we eat lunch, my mother and I have an unspoken competition of who eats their sandwich the fastest. She tends to win, even without knowing we’re vying for anything. I only do this with my mum because she’s a slow eater. Way back I used to do the same thing at traffic lights, seeing who could accelerate the fastest. Another one of those unspoken tournaments. I’ve always been a bit of a cretin like that. Always looking for competition, but only when I stood a chance of winning.
Last night we lay in bed and talked about school. We even arm wrestled to see who was the strongest and, although Floor won in the end, I was impressed with my own strength.

Talking

There’s no doubt about it: talking is getting more difficult. It’s especially noticeable to people who haven’t seen me in a long time. Understanding me requires concentration and context. Being nervous or afraid that you’re not going to understand me doesn’t help either. Nervous laughter just makes me upset. Please, just repeat what you do understand and I’ll fill in the missing pieces. Usually it’s a matter of getting one word right. Spelling helps, but many people don’t understand that either. You have to repeat the letters I say. The K and the B are especially hard to decipher. To make it more clear I’ll usually say “ABC” or “KLM”, but that makes it even more confusing for some people. Hein and the kids are my best translators. Sometimes I feel like I’m speaking a foreign language, armed only with my kids to translate for me.

Being

Sometimes I get scared that my children will only remember in ill health. I don’t like that thought. I’ll think about all of the things we did together after I got sick; the holidays, biking and hiking across the country, visiting museums, etc. and think that it was all for nothing. Whenever Ward asks anything about the past, he wants to know if I could still walk back then. He asks me if I like sitting in front of my computer in a chair all day. He’s still so young. When I had just found out about my illness my neurologist told me that “being” was of paramount importance. “Being there”, specifically for the kids. One is not defined by their possessions, their actions or other superficialities. There’s something more to a person. I try to compare myself to my old self as little as possible. I’d say I’m decently successful on that front. My homepage shouldn’t be a reflection of my old “being” either. No CV, no list of accomplishments. On the other hand, I don’t want to be purely associated with ALS. Simply “being” is difficult. My ego is always hungry for more.

Why America?

When I heard I had ALS, my neurologist told me to do the things I’d always wanted to do, because soon it may be too late. He mentioned things like visiting Hawaii. At the time I was sceptical. I didn’t feel the need to suddenly do a load of things all at once like I’d wasted my life before I was diagnosed. I had lived life the way I wanted to live it. Anyway, time goes on and I’ve noticed that I really enjoy holidaying abroad. There’s an itch somewhere that only America can scratch. I’ve been there twice already and I absolutely loved it. Furthermore, it would be a great experience for the kids. I want to bestow experiences like these on them. Besides, lots of families from our surrounding go to America with their kids, as if it’s a part of their education. We also have some friends in the US, a very good friend of Ward’s and his parents. In short: plenty of reasons to go. We’re taking the kids’ grandmothers with us. Camping is not in the books for us and the Wild West is not for us either. We’re going to Florida, to Universal Studios and Disney World, a kid’s dream. I’m looking forward to it.

Adapting

I haven’t been feeling well for the past few days. Very emotionally sensitive. Of all days, I always choose blue days like these to look at the websites of fellow ALS patients, which doesn’t raise my spirits one bit. Two pages ended abruptly halfway 1999 because their owners had passed away. I read what kind of changes fellow patients have to adapt to, up until the end. Always staying one step ahead of the disease, not once but constantly, always in flux, even if one is not prepared for it. Your situation never changes for the better, every step you take is a step back. I’m reminded of the words a friend wanted read out at her funeral, about life’s changes and the necessity to adapt to them. Well, ALS is the queen mother of diseases that forces adaptation, but the strangest thing about it is, one adapts with everything they’ve got. One clings to life.

Het bericht Diary September 1999 verscheen eerst op Living with ALS.

It was great. We did a lot of fun things and everything went as smoothly as it could’ve. The cottages we rented were amazing. They all had swimming pools, very American. We visited Universal Studios and went on plenty of attractions: E.T., Jaws, Earthquake, King Kong, Twister, etc. Then there was Cape Kennedy. The whole place reeks of spaceflight history. It’s still in use; the next launch is scheduled for December 2nd. Lastly: Epcot, a new Disney theme park. Future World was a bit disappointing, truthfully. The World Showcase was pretty, especially Mexico, the child acrobats and the breathtaking parade.

The most American thing we did was visit a drive-in cinema. For three dollars per person we watched two films. Audio is supplied through the radio or through little speakers next to the parking spots. We were stocked with plenty of popcorn and cola, of course. The kids were impressed with Ward’s friend Jochem’s accent and the fact that the kids were allowed to grab cans of soda from the fridge without asking for permission (something they had to unlearn when we got back home). Visiting supermarkets was an adventure on its own; grandma and Floor on an electric scooter and me and Ward were racing around the place.

We saw the Everglades. A spectacular trip on an airboat with earplugs in, seeing crocodiles, even letting Ward and Floor take the wheel at one point. We travelled to and fro between the Keys before heading for Key West. At the square where we had dinner our sunset was blocked by a cruiser that was moored nearby. We sat between the cruiser and the concrete piles until day turned to night. We saw two raccoons, one of which had a palsied leg. On Miami beach we were awestruck at the Art Deco houses and the surprising number of attractive men. Floor, however, thought that their tight swimming trunks looked rather uncomfortable.

We enjoyed our time in Florida. The kids were sweet to each other and didn’t make any trouble. I was well cared for, sometimes both grandmothers were at the ready to supply me with chips or crisps. The only question was who could feed me first, they were really vying for my affection. Without Lia, this holiday would not have been possible. Hein wasn’t looking forward to being the only mobile adult on the trip, so he was happy and surprised that things turned out so well.

America is an amazing country for people in wheelchairs. In my wheelchair I rode a bike with E.T., ran from King Kong and rode a boat to Mexico. At Kennedy Space Centre there were special platforms to get me into the bus. Not to mention the abundance of disabled toilets. All restaurants have wheelchair ramps and disabled parking. It’s in the law, something the Americans really have figured out. They’re very lawful people. Only the cottages were not too accessible for wheelchairs.

Lots of family came to welcome us, as well as see us off. I always get emotional, especially when we arrived. It was such a drastically different welcome than what we were used to that it felt more emotionally loaded. I’ll be honest: I’m not that good at saying hello and goodbye. Whenever I’m saying goodbye, I’m thinking: let’s leave quickly. When I arrive at my destination: let’s go home. I prefer to avoid stuff like this altogether. My brother and I are a lot alike in that regard.

Getting back home wasn’t too bad. I spent a whole week editing a holiday video. I also wrote a newsletter about Florida, which turned out pretty well. Ward had gotten infected with Jochem’s American accent, but after a while he lost it again, partly because of Floor’s ridiculing. Floor loves her American clothes and Mambo No. 5 resounds throughout the house. The kids deeply appreciated America.

My carers

Nowadays the question “Who’s taking care of Jeanet?” is more pertinent than “Who’s watching the kids?”. The answer is: a whole lot of friends and family. My main carer is Hein, of course. He works 24 hours a week, so he has time to be with me on most afternoons. Hein is the person I trust the most. He knows the ins and outs and has been there for me since the beginning. On some days he obviously needs a break, but we manage nonetheless. On Monday afternoon it’s my mother’s turn, until Tuesday afternoon. We’ve already developed some rituals. On Tuesday mornings we go into town and eat pastries (my mother likes mocha while I prefer chocolate eclairs), make scrapbooks and watch films on TV. On Wednesday morning there’s another shift change. Every three weeks my brother Anton comes to take care of me. I love him for that. Sometimes his wife Netty tags along too. Other Wednesdays are brightened by: Lucy (who has to commute from Amsterdam and often brings Indian delicacies), Carola with her baby Thomas, and sometimes Gisele, but she works a morning shift on Wednesdays these days. On Thursdays it’s Marjolein or my mother-in-law, Lia. Marjolein has spent most of her maternity leave on me and is in charge of grocery shopping. She’s very punctual, always being here at 8:45 sharp. We always read the newspapers, after which we play bridge. She has become my main bridge partner. Lia is usually early too. She always brings two newspapers, so we have plenty of reading material for the following two hours. Afterwards Lia busies herself with ironing and folding clothes, most of them are Hein’s cotton shirts. It’s a task I used to hate doing. On Fridays at lunchtime Tineke comes to visit me. I’ve known her for so long that we can reminisce about almost anything that ever happened to us. Sometimes Jet, still dressed in her work clothes, eats lunch with me (whenever she manages to escape from the ministry). On Monday and Friday mornings I’m cared for by Inge, our professional carer who does some understated and much appreciated work for us. She always puts on CDs for me, with the volume turned all the way up.
Every week my father-in-law Kees does gardening work: planting bulbs, potting chrysanthemums, weeding, etc. He walks me through his process step by step and never does anything without my express permission. Often when we have friends over, the garden receives high praise. During the winter he puts up bird feeders, meaning we are visited by jays, tomtits, robins, magpies, pigeons and jackdaws at breakfast. The bigger birds in particular often put on daring shows for us.

It’s a sizeable group, my informal care unit. I try to do as much as possible by myself, through mail. Hein is a bit of a worrywort when it comes to appointments made through email, preferring to make them face to face. I, on the other hand, am very happy with the amount of influence that I have on affairs. My knack for remembering details is a huge help in that regard.

Everyone gives it their all and adapts to the difficulties and methods of caring for me. Raising my seat, putting the brakes on, using the rollator, working the stair lift, handling a wheelchair, putting on my jacket and, until recently, getting me on my scooter. All of them tasks that require very specific know-how, which I can luckily still explain to laymen through speech. Other than that, there’s my personal needs: medicinal, dietary, the consistency of my food, the size of my bites and the side of my mouth I prefer to drink from (the right side). And, of course, the dreaded bendy straw, which I prefer to be straightened when I drink from it. There are huge discrepancies between people’s ways of doing some tasks. Some people hand me two meters of scrunched up toilet paper, others give me three sheets, neatly folded. One person will pull my trousers and pants down in one swift motion, while others are more delicate. One thing is consistent though: they all do it with great care. I try not to make caring the main subject of the day, I want them to be sociable and entertaining too. Thus we talk, visit the tea parlour, go for walks, look at photos and other convivial activities. Sometimes I’ll even put them to work; wrapping presents, editing videos, putting pictures in scrapbooks, getting groceries… I fear the day that all of these tasks are done. What will they have to do then?

Thanks, everyone!

Saturday evening

Hein went to play bridge for the first time in a long time, how’d we handle this again? Usually I watch a film with the kids until Hein returns around eleven to tuck us (read: me) in. This evening was no different. Floor couldn’t sleep over at a friend’s house. I prefer having her around when Hein is away. Floor is very responsible and, if she doesn’t panic, she’s very good at making autonomous decisions and judgement calls. Keja was there too. We watched Prince of Egypt. Keja had seen it before and knew the biblical context of the film. Ward laid down in our big bed and snuggled with me. Whenever I tell him I love him, he tells me “I know that by now”. We sleep, but I’m restless. Floor keeps using the bathroom and often informs if Hein is home yet. I hear the kids talking. Only when Hein got home did everyone truly go to sleep. The pack was complete again.

Angry

I can get very angry. Not about my disease itself, but its consequences. It’s mainly about my speech problems. In America I’d see the right streets, the exit we were looking for, an empty table at a restaurant, a cozy place to picnic. I’d start to call out. Nobody understands me. I yell louder. Unable to understand, people try to guess, all of the guesses are wrong. In the moment I’d curse their stupidity. It’s only later, when I see myself on camera, when I realise that the noises emanating from my mouth are, indeed, incomprehensible. Especially when I’m mad. I can’t help it. I see and want too much, it’s in my genes.

When one is this dependent on others, little details become so much more important. Small adjustments and quirks are paramount for making my life as comfortable and untroubled as possible. The less I have to discuss these details of my cares with others, the better. Whenever people don’t understand, however, I have to show them the ropes again. Lots of wasted energy, leaving me upset and angry.

There are only two people in the world I can get truly angry with: my mother and Hein. Whenever they don’t understand my needs, I’ll get pissed. “Idiots”, I’ll think, “you should know how this works by now”. I’ll get visibly angry. That’s the price they have to pay for being close to me and having me put my trust in them. I have to vent my anger somewhere. Still, it’s an ugly trait to have and it’s not much of a show of gratitude for Hein and my mother.

Rose coloured glasses

Sometimes I wonder if I’m looking at life through rose coloured goggles. I often read the diary of an American ALS patient named Doug. He writes about his physical deterioration and all of the different machines he needs to live. I noticed I barely write about those at all. Whenever I’m in company, I try to act as normal as present circumstances allow. I hope and believe that the kids’ lives are not too affected by my disease. I try to entertain myself as much as possible, for Hein’s sake. We still do a lot together as a family. Sometimes, however, I’ll wonder if I’m fooling myself. It’s not like I know any better. Dreariness is of no use to me. No, I think that, even though I have ALS, I’m still as pragmatic as ever.

Het bericht Diary October en November 1999 verscheen eerst op Living with ALS.

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.

Sinterklaas

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?

Air

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.

Useful

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.

Falling

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

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.

Jeanet

Het bericht Diary December 1999 verscheen eerst op Living with ALS.