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.

Turmoil

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.

Het bericht Diary January 2004 verscheen eerst op Living with ALS.

On Friday afternoon, we interviewed, or rather, met our new help. After some meditation, I decided to not hire her. Why? Granted, she was nice and very good at her job, but when she arrived she immediately touched my face and again when leaving. I don’t doubt she had good intentions, but I don’t appreciate behaviour like that one bit. It’s something nurses tend to do; mothering me to bits. I already have a mother, thank you very much. I want someone who sees me as their equal. I spend whole days with my carers, they’re not short visits. I need to be on the same wavelength as my carers. Besides, I use my PC a lot, so some knowledge of computers is a prerequisite. I panic when my computer crashes, especially when there isn’t an interpreter present. Am I just being too picky?

My neck

My neck muscles are deteriorating. Drinking tires me out, not because of the straw but because I can’t keep my head upright. Now I prefer to drink through my PEG. When I’m being fed, food often goes up my nose because my head lolls forward too much. My backrest reclines more and more every day to relieve my neck. Sleeping in my chair has become a chore, my head keeps lolling forward. That wouldn’t have been so bad before, but now it leads to such intense neck pain that it wakes me up at night. In the morning I’ll be sore and need a while before I can communicate again. This weekend was one of those times. I couldn’t get my head upright. And with a slumped head, talking is nigh impossible. Awkward. For the first time in a long time, I felt a sense of finality. Before, I felt comforted and self-sufficient from knowing that I could just sleep downstairs in my chair, but now that’s gone. By now, the new sleeping chair has arrived (which we had fast-tracked in August) but it has the same head support issues as the other chair. Maybe I should get an appliance that keeps my head upright. Bummer. Luckily, my bedrest is improving.

Busy

I finally got the inspiration to continue writing the musical, together with my co-writer, grade 6’s teacher. And boy, does he write. Whole pages of text flow from his pen. I think it’s a bit too verbal, not visual enough, not enough variety. It took some time for me to make my opinion clear. Not actually having a child in 6th grade does make things different.

Duty-bound, I’ve started editing the musical. Besides that, my sister-in-law offered to modernise my homepage, which means more revision for me, thinking about changes. In short: lots of interpersonal creative processes. The interpersonal part is important to me. It scratches an itch, even if it is just over email. Too bad the construction work is on a bit of a hiatus. The architect is taking his sweet time.

Marriage

My carer Sandre is getting married on Friday. I think I was one of the first to know. She filled me in on every single thing about her wedding, which was a bit frustrating for an organiser like myself. Everything they planned was last minute. It’s weird, meeting your exact opposite. I got married for free on a dark Monday morning in December. We told our families a few days beforehand. Floor was coming up on four months. A huge contrast.

The four of us went to town hall. The kids had never experienced a wedding before. Sandra looked beautiful and obviously felt great. During the evening reception we had a hard time leaving. Sandra’s grandma, a tiny 85-year-old lady, cleared a path for us through the crowd. We’ve devised an emergency plan for Sandra’s honeymoon, Hein, Astrid and Lieke will fill in for her.

Spring break

It doesn’t bother me much that spring break is over. Ward is not much of a planner, spending hours at a time playing with his PlayStation. Fortunately he did undertake some things. Floor worked extra hours. She has a job as a stock girl at Albert Heijn. Too bad I haven’t seen her in action yet. Other than that, we watched a couple of movies together, an activity that fits the weather. We bought the newest season of Friends and laughed a lot.

Het bericht Diary February 2004 verscheen eerst op Living with ALS.

I was restless last night. It sounds stupid, but I lost sleep over a party Sara and I are organising. People have taken issue with the location we picked (Avifauna), especially a bunch of men who left all of the planning to us. But that still doesn’t explain why I was so upset. I couldn’t sleep and even cried a bit. This morning, I wrote a ruthless letter to the aforementioned gentlemen, which made me feel a lot better. Maybe I was upset because I was unable to verbally defend my choices. Maybe it was because I had vested my happiness on this one dinner party. Maybe it was just me being a sore loser and being upset that I didn’t receive unanimous support. I threw the towel in the ring. They’ll figure it out. I felt so alone.

The day prior I had been elated, for the wrong reasons. Floor had an English presentation about America. Despite the fact that she had the entirety of spring break to prepare it, it still wasn’t finished on Sunday evening. That was when I took action. The wrong thing to do when raising a child, but I loved it. Why? Being needed, having an impending deadline, I love it. We wrote a great, easily readable presentation with great pacing. Floor was thankful, although she did edit some parts of the text. Bye bye pacing. Whatever, it’s her presentation after all.
I think these stories are similar. Apparently, I’m so desperate to be “needed” that I immediately take the reigns and forget about everyone but myself while working on anything. That’s what happens when one has to be the source of their own motivation. Every day starts with the question of “what to do?” I’m usually useless, so the feeling of being “needed” is amazing, even if the other party doesn’t always enjoy my input. It’s in my nature. I’m just a bit of a taskmaster.

Into town

I rarely visit our town centre. Last Saturday I did, with my sister-in-law Netty. I hyped it up in my mind, but our main shopping street, the Haarlemmerstraat, is nothing special. Just bunch of hasty people carrying heavy bags and stuffing their faces with food while they go. To think I used to be one of those people. Luckily we walked on and found a few alleyways with nicer shops, walking by churches and fragrant market stands. It’s those moments that make Leiden alright in my book.

Head cold

For the first time in years, I’ve caught a proper cold; runny nose, sneezing and lots of mucus. I split my lip by sneezing a few times. I can’t stay in bed, but by the time I’m downstairs, snot is oozing down my face with nobody to wipe it off. How I miss my arms and legs. My nights got better after putting a cut onion on my nightstand (useful tip from my physical therapist). I’m tired of having blocked sinuses, but I think the worst has passed.

Homepage

My website has been steadily growing in the background. The accessibility of my diary has seen the greatest improvement. Now it actually allows perusal. I’ve been editing things too, the chapter on alternative medicine, for instance, is a lot more realistic now. I’m excited to see what’s going to happen to my site’s new guestbook. Please, by all means, leave a comment. The person responsible for my new website is Adrie den Hertog, my sister-in-law. She has a company that has been building and maintaining websites for over a year now: Zin In Webdesign www.zininwebdesign.nl. Adrie, I couldn’t have asked for a better birthday present.

Sara

Even during Sara’s party, my head cold turned heads. We all worked together because, of course, I couldn’t keep myself from helping with the organisation; I love organising too much. Everything went well, except for the weather. Well, it was a success and the day after I received loads of heartwarming emails, which made me forget all about my prior feelings.

Storm

On Saturday, I went on a walk with Netty through a storm. The wind made beautiful ripples in the trees. While it was storming, there wasn’t any rain. I loved feeling the wind on my face after being inside for a week and a half. It felt invigorating. I would have never gone outside of my own volition, but thanks to mine and Netty’s arrangement, I’ve seen some things I wouldn’t have without her.

Sunroom

Last week, the architect gave us a shocking budget. For a simple sunroom, we would be set back 16,000 euros, which wouldn’t even cover the building itself. We went to town hall, and the people there were very sympathetic to our plight. Our municipality will find us an architect and will subsidise a part of the building costs. I hope it’ll be quick, but it probably won’t be. As expected, after a strong start, I haven’t heard anything from them in a while. All we can do now is wait. It’ll probably be a while.

Photo sessions

My new website needs new photos. Hans took some on Saturday. My reactions to the camera’s flashes were odd. Exaggerated reflexes are part of having ALS. A lot of the pictures takes went straight into the bin. The following three are the ones that made it in. Another one became the website’s header. Did I pick the right ones?

Boring

Our daughter has a flourishing social life. Before, she only had plans on either Friday or Saturday evening, but these days she’s often busy on both. That’s the way it goes. And our son is busy playing games with his clan, on the same nights. I have to say, I don’t like it. Last year, we watched Idols together, but by now we couldn’t care less about it. Passé. And I can’t say I care much for it anymore either. It’s unbelievable how quickly fads come and go. Hein doesn’t watch much TV either. In short, weekend nights have become a lot more boring.

A birthday spent outside

March 31st. Today I turned 49. The weather was good enough for us to spend it sitting outside. I was pampered and spoiled the whole day. And yet, I’m kind of glad it’s over. Onward, to 50?

A bad birthday present

On my birthday, I got the news that Sandra is quitting, effective on May 1st. Bummer.

Het bericht Diary March 2004 verscheen eerst op Living with ALS.

Easter Saturday was messy. My computer was completely shot and our expert worked on making the upstairs computer head mouse compatible. It always stresses me out, because I’m nothing without my programs and old files. I’m too dependent on them. Afterwards I had to wolf down my food because we were expected at a friend’s house. When I got there I was so tired that I asked if I could sit somewhere else to close my eyes for a second. It was nice. The following day, we had brunch with Hein’s family in Oosterhout. Having Floor and Lieke at my sides to translate what I was saying made it an agreeable afternoon. As a belated birthday present, Monieke gave me some stamps with her late cat on it. Very special, very much like Monieke herself. On Easter Sunday we did an easter egg hunt. The men’s team beat ours by one minute, not bad for a team with a member who’s unable to leave her chair. The kids don’t want to let go of this tradition just yet. We spent that afternoon in our garden with my mother.

Coughing

Very early on in my life with ALS, I learned that I’m least likely to choke when I keep my head down while eating. Since then I have, and it’s always worked. I only aspirate occasionally. But keeping my head down is hard for me these days. Besides, with a tilted head it’s almost impossible for my carers to feed me. So now I try to keep my head upright, resulting in food going down the wrong pipe more often. That’s not too bad. A bit of coughing and it’s fixed. Granted, sometimes it does take 30 minutes to hawk up all of the mucus, but at least I don’t panic while I”m doing it. Until Easter Sunday. I got a piece of tiramisu stuck in my windpipe. 7:30 till 11:30 PM were spent coughing it back up. I did panic then, hearing myself gurgle and feeling progressively more warm as I did. I wanted someone to crack a window, then changed my mind; too chilly. That happened three times in a row. I always get hot when I’m panicky. Whatever, I’ll take off my vest. I had to be helped up after slumping in my chair. The sound and thought of me coughing consumes me. I kept gurgling. While it did initially cause a commotion, after a while my family just accepted my coughing as background noise. When I finally got the bulk of the slime out of my throat, I was knackered. The next day, people inquired if I’m alright now. My abdominal muscles hurt the following few days, like I’d done intensive fitness exercises that Sunday. I think I’ll just keep my head down for now.

Website

My new website has garnered some positive reactions, even public ones in my new guestbook. I hadn’t given it much thought and all of those heartfelt public messages actually shocked me a bit. Before, I could process all of their messages privately, through email. Now, I’d have to do it publically. Thanks for your messages, everyone. Besides that, Adrie linked my website to a site that tracks how many visitors websites get on a daily basis. I average about 20 to 30 visitors, with 57 as my personal record. Ten percent of them are from Belgium. I get some intermittent visitors from Canada, Switzerland and Denmark, but they’re probably just misclicks. Every day, I look at how my numbers are doing. How fun.

Assessment

It looks like our sunroom is finally happening. Someone came by to assess our need for an extra sunroom. It turned out that our municipality wasn’t as enthused about it as we’d hoped, which had everything to do with my life expectancy. Luckily, the assessor was convinced that an extra room was necessary. Three days later, we got a call from our engineer. Finally, we can start building.

Useful

Never write about feeling useless, because you’ll be swarmed by people asking for contributions. For example, I was approached to write something about Napoleon for an art show called “Small cards, great stories”. It’s about playing cards from 1650 – 1950 that were repurposed as writing paper, which was apparently very expensive at the time. Like that, Louis Napoleon accidentally left his kerchief at a slumber party. The hostess graciously held onto it, which she denoted on the back of a playing card. The aforementioned card, a nine of hearts, and the corresponding kerchief, are on display at the exhibition. When talking about Louis Napoleon, one has to talk about Napoleon Bonaparte. I did just that. I learned a lot about Napoleon and I’m eagerly awaiting my next assignment. It’s funny how I would have never had this experience if it wasn’t for my online diary.

Going to bed

Things often go wrong when I’m trying to sleep. My arm grazes my PEG, or my pillow isn’t directly under my head, or my foot isn’t under my blanket, or my ear is folded in half under my head. But, while lying on my side, I can barely get a word out, let alone explain what’s bothering me. Hein gets frustrated. After all, he did everything exactly right, so how could something be wrong? That’s when the guessing game starts, with growing frustration from both parties. Now we use a checklist I’ve created. By asking a few questions, he can usually figure out what’s wrong. I hope it’ll prove to be a good solution.

To Oxford

We’ll be going to England with some friends and their kids, from the 1st till the 8th of May. We’ve rented an old barn close to Oxford. We always go on holiday during May break, despite the fact that the weather is always bad. We’ll be visiting London as well as Oxford. I’m looking forward to some things, not so much to others. What will the barn be like? The bed? The bathroom? Once I figure out a usable routine, I’ll be fine.

Het bericht Diary April 2004 verscheen eerst op Living with ALS.

The other day, someone gave my family their compliments for being able to deal with a “difficult woman” like me. That was a hard pill to swallow. Me? Difficult? Some time later, I got an email from someone who, alongsider her sister, took care of her aunt. She wrote: “We, and the carers at her nursing home, did not have an easy time helping her. She had very high standards”. That’s the crux of the matter: are you in a position to make demands from people you’re totally dependent on? “Of course,” everyone would say. But to what extent? Could I demand showering daily? I wouldn’t want to, by the way. But could I demand to eat without a bib (I hate that thing)? Could I demand a drink or should I wait until someone makes time for me? Am I allowed to ask for my arms to be readjusted when they’ve slipped down for the umpteenth time? For my back support to be readjusted after I’ve had lunch? Can I expect my head to be put back on my headrest after we hit a nasty bump in the road? I’ve automatically gone from demanding to requesting. Asking is friendlier. But every question from me has me questioning myself first: am I irritated or uncomfortable to such an extent that I want something done about it? It’s not a question a lot of people with intact faculties ask themselves. Every question from me is a burden to others. Another bathroom visit? Of course I’m difficult. It manifests particularly clearly on holidays. I bombard my companions with questions. But the worst part is, sometimes I get mad when I don’t get my way right away. I’ll shoot them dirty looks. In those situations, not only am I being difficult, but annoying to boot.

England

England is a fantastic country. Never before have we had this many conversations with the locals as on this holiday. When we were on a walk, an obviously upper-class lady with typical dark English humor (“I’m a housewife, of course I’m an alcoholic.”) warned us about a wheelchair-inaccessible path and showed us a way to avoid traffic-heavy areas, and in passing she showed us her impressive home. In a pub we were treated to a round on the house and we got a tour of the local church. According to Floor, English people are “wicked nice”. Rural ones are, at least.

The house was pretty great, as was its location. During family outings like this one, I always notice how much my condition has deteriorated. Eating was more tiresome, my neck was weaker and Gisele couldn’t understand my words anymore.

England is fairly well-suited for disabled people. We took a train to London, which went swimmingly. There was a lot of helpful personnel on the platforms and my coming was relayed long beforehand: “invalid person inbound”. Handicapped toilets everywhere, even though some of them had huge obstructive sinks. Old buildings proved to be the biggest obstacles. For instance, I didn’t get to see the dining hall from Harry Potter.

We did all kinds of typical English activities, like visiting a garden, a castle, a typical English hamlet, Oxford, London and walks through the countryside, on muddy forgotten paths. And of course, we visited a pub and had scones and full English breakfast (though I didn’t partake). Oxford was impressive; beautiful, old colleges with beautiful courtyards, lawns and plenty of vantage points. London, however, was too crowded. Every sidewalk was slightly sloped, so my head was never quite on my headrest. Harrods left an impression; I’ve never seen a shop more beautiful.
In short, I’ve had a great holiday. The weather, you ask? Typically English. But overall, the rain never really bothered us.

Coughing

In England, I had two coughing fits. In Oxford, we were on our way to an Evening Song (a sung tribute) when I felt the lump of slime forming in my throat. I had a seat nonetheless, but after a while I decided to move. My coughing was disturbing the choir. Not a great place to hack your lungs out. On our way back, I had another fit on the ship. Just when we were about to disembark I felt a lump again. Again, not great timing for a coughing fit. I panicked, and so did the people around me. They pulled me up and slapped me on the back. I managed to clear my throat just in time. I think it’s because I eat too fast and don’t take the time to cough after I’ve had food.

A Chinese help

We’ve been trying to find a new help, not an easy task. Not a fun one either. I’d prefer someone younger who likes to talk. A Chinese lady phone in and she’s already become my favourite. Her Dutch isn’t great, though. I expect some Babylonian misunderstandings and a lot of frustration. She’ll be coming this afternoon. We’ll see. We’ve also put up flyers in the hospital and a community college, but they haven’t gotten too many responses. A university student would be nice, especially ones with a flexible time table.

She was everything I’d expected. She’d written a note with her name on it. She had been living in the Netherlands for a year now and her Dutch was passable, although the stories she told were a bit confusing at times. She’d asked her mother in China for advice before she met me. Her wise mother had told her to took me straight in the eyes while talking to me; some good advice. Before she started her trial period, I was optimistic, despite the fact that she had no prior experience. But her stumbling blocks were the small things. Despite her constant repetition of “yes, yes”, she didn’t understand the minute details, like “angled, up, less full”. The patient lift was another obstacle she couldn’t scale. With a pained heart, I said goodbye to her. But a lack of experience and language expertise are not to be underestimated. That marked the end of my exotic Chinese adventure.

Paris

It’s still sinking in for me, but this Pentecost we visited Paris. I wanted the kids to experience it. Our journey to Paris wasn’t too hot. Saturday evening was very agreeable. We spent it sitting at a cafe and having a nighttime stroll through the Parisian streets. There were a lot of people about and the city lit up like a fairytale. It made a lasting impression on the kids. Our hotel was in the vicinity of Les Halles, in central Paris, close to most tourist attractions. The following day we visited the Eiffel Tower and I had my first ever boat ride on the river Seine.

Paris is not suited for handicapped people. Even the Dom des Invalides wasn’t wheelchair-accessible. Hein was furious and spoke loudly to the guard, who asked him to be quiet. He told us that the building couldn’t get a ramp installed because it was national heritage. The rest of Paris was much of the same. For bathroom visits, we had to go all the way back to our hotel. Despite that, it was a fun trip.

Het bericht Diary May 2004 verscheen eerst op Living with ALS.

My coughing has become a recurring problem. I’ve spent another whole night hacking before getting all of the mucus out of my trachea. It wasn’t pleasant, for me nor for my family. I’ll look for some information on tricks that can help me get rid of mucus easier.

Garden

Our garden has never been as beautiful as it is right now. Normally, when I’m sitting in the garden I’m constantly coming up with new ways to improve it, but now I feel content just taking it in. It won’t last long, though, because they’re about to start construction on our sunroom. Lieke takes care of the gardening now. I love my garden.

Maths

Ward is not great at maths, it turns out. Algebra is especially hard for him, stereometry (who comes up with these names) is easier. I love mathematics. It’s difficult for me to tutor him, I can only explain small things, helping him with his exercises and writing more math problems for him is bearing fruit. I spent an entire weekend like that, helping Ward study for his maths final. Neither of us are particularly patient, but barring a few minor losses of motivation, it went well. We’re very different when it comes to dedication; Ward will take a break after a few hours of studying, while I don’t stop working until I understand the material. The result of our hard work? A 55%.

Sunroom

The blueprints are in. Suddenly, we were faced with loads of decisions. Where do we put the electrical sockets, the lights, the heating, but mostly: which kitchen are we getting? The kitchen turned out to be the big bottleneck of the operation, with delivery being scheduled 8 to 10 weeks from now. The builders’ holiday season isn’t helpful either. Thus, we’re spending entire afternoons visiting kitchen manufacturers, with Hein poring over their booklets. Besides the fact that I’m unable to turn pages, I’m not the type for extensive research. I’m an intuitive consumer, distilled from listening to various sales pitches. It saves time. Once, I did a test where I had to make a decision based on several written sources. I was terrible at it. I prefer listening over reading.

Carers

My other faithful help, who has been with me for over three years, is leaving us too. We thought we could hold onto her for a little while longer, which made her departure even more or a blow. I was upset all day. The next day, I worked on finding a replacement. Within just half a day, I had sealed the deal. Long live the internet and email. I got a real kick out of it, although it didn’t take away from how sad I was. It means that, after the holidays, I’ll have to get used to a whole new team. I’ll be unintelligible again. I’ll have to explain everything again. Goodbye, familiarity.

World ALS Day

June 22nd was World ALS Day. Not a lot of people know about its existence. We visited the Valscherm Foundation conference and the ALS Centre, mostly to catch up with acquaintances. That evening, there was an item on TV about Loes Claerhoudt. I’ve been corresponding with Loes for a while now. Her ALS is a lot slower than mine, she’s still able to talk after 5 years and still has some functionality of her hands and legs. She’s had a personal column in a newspaper, in which she writes humorous articles, all of them with undertones of sadness. Other than that, ALS Day didn’t get too much attention. Well, actually… My website did perform really well today, 48 visitors. So maybe some people do know about it?

Orange

Like most people, we’ve caught a serious case of orange fever [Being very supportive of Dutch national sports teams, most of which are clad in orange. -Ed.]. This is the first time that the kids have actively participated, putting up orange flags and streamers on the balcony. Our house is the only one in our neighbourhood with orange decorations. Hein found it a bit tacky, but he condoned it. We dressed in the most orange outfits we could find, who doesn’t these days. We ate orange pastries and watched as much football as possible. We cursed our team’s coach, but not too much. In the end, we’re no different than any other Dutchmen. We’re very typical, really.

Musical

I didn’t initially plan to go see the musical I’d written, because I didn’t have any kids that would perform in it. Besides, it had been months since I’d written it. But my curiosity got the better of me. I’m glad I went, because I had way more fun than I’d anticipated. This one was even better than last year’s one. I especially loved the performance one girl gave, playing a lovesick braceface. I was still chuckling about it the day after. It’s always fun to see something you’ve put on paper come to live.

Goodbye

Sandra is definitely leaving, two months later than intended, because we couldn’t find a suitable replacement. The day before her official departure, she asked if she could cook something special for us and if her husband Jeroen could come to dinner too. I told her I’d like that. Sandra likes to share, so we knew a lot about Jeroen. Dinner was very nice and cosy. And thus, in a special way, we said goodbye to a very special person.

All the way from Leeuwarden

On Tuesday, a correspondent and friend who was diagnosed with ALS six months ago paid us a visit, all the way from Leeuwarden. I was most impressed. Six hours of travel time, just to see me and confront herself with the realities of advanced ALS. I don’t know if I would have been as brave. Talking over email is a lot easier. In the same vein, one of my old colleagues visits me yearly, all the way from Epen (Limburg), just to be with me for an hour. Bless them.

Holiday

School ended almost two weeks ago. My carers are a bit miffed about that, because in order to do the laundry they have to pass through the kids’ bedrooms. The kids have been spending a lot of time in and around their beds. After they’re back from camp, we’ll go on holiday in Zeewolde (Flevoland) for two weeks, in a small cottage. I’m glad we’ll be able to stay in the Netherlands, despite the fickle weather. I don’t even want to think about long car rides in a sweltering van. Besides, I wouldn’t say no to a moderate summer.

Het bericht Diary June 2004 verscheen eerst op Living with ALS.

These days I care more about nighttime temperatures than those in daytime. As the mercury rises, my sleep diminishes. It leads to hours of rolling in bed and waking up in the middle of the night. 12 degrees Celsius is my ideal sleeping temperature. Even when it’s cold, Hein cracks a window so the warm air has a way of getting out. Luckily, this summer hasn’t been too sweltering. That being said, we don’t know what kind of temperatures August will bring.

Hindrance

Holidays serve to highlight how much of a hindrance I am to others, a like a ball chain.

• We can’t go camping, even though it used to be my favourite way to spend a holiday
• We can’t go hiking in the mountains. I saw pictures of Floor’s camp in Switzerland and I’ve never wanted to go hiking more.
• We can’t pick exotic destinations because I can’t handle long car rides
• We can’t go on a cycling holiday. Everything has to be accessible by car.
• We can’t go to fancy restaurants, because all I can realistically eat is mashed potatoes

Sometimes, I think about how much fun I’ve prevented my family from having. Not to mention the constant care I need in daily life. I’ll just cling to my conviction that “being” is more important than “doing”.

Zeewolde

Zeewolde is anything but a grand city. Our camping ground was close to a harbour, but we hadn’t thought to plan anything watersports-related last year, so the sea went unused in the end. The patio was too far removed from the water, so I didn’t even have a view of the sea. There was a beautiful and very accessible dyke path leading to Zeewolde. Then again, why would anyone want to visit Zeewolde?

Maybe it’s just part of being sixteen, but the kids didn’t want to do anything, except to go shopping, preferably in a larger better city. Maybe it’s that damn TV. Every single holiday cottage has one these days. In short: a lot of loafing around. They didn’t even go to the disco and movie night the camping had organised. They did play tennis and ping pong and, most surprisingly, scoubidou, as suggested by grandma.

The cottage was a bit shabby, as the kids put it. The height-adjustable bed had a mattress that felt like it was made out of concrete, but we got that sorted out in the end. The bathroom didn’t have a window. No, we were much better off at that campsite in Zeeland.
We visited everything there was to see in the area: Elburg (a beautiful town), Schokland (a former island in the Noordoostpolder), Bataviastad (where we sated our shopping needs, even though their collections were horribly outdated), Nijkerk (we visited a furniture boulevard where we finally bought a crystal chocolate box and a small sofa for Floor) and Garderen (where they advertised an big country fair, which turned out to be comprised of just ten market stalls).
All in all, I’d say this holiday was decent. On the only rainy day, we went to see Shrek 2 in Almere. We had a good time. A big thank you to Lieke, Lia and Hein.

Het bericht Diary July 2004 verscheen eerst op Living with ALS.

I’m surrounded by people who are approaching 50. That’s cause for celebration. Sadly, a lot of them are overshadowed by the passing of loved ones. In order to celebrate without creating too much of a ruckus, we decided to make a website and put it on a CD-ROM.

My sister-in-law and I pulled no punches, meaning we put a lot of pressure on people to contribute to the site. The result is amazing. A plethora of alternating videos, music, presentations and pictures. Doing a project like this is great fun and doesn’t take too much time.

Quiet guardian

Astrid, my quietest professional carer, had her last day of work today. She took care of me for three years, including other household tasks. Whenever we had forgotten to buy something while grocery shopping, Astrid would know. Even when her shift was almost over, she wouldn’t hesitate to dash to the shop do some last-minute grocery shopping. I’m going to miss her dearly.

The new carers

My new carers have been doing pretty well, all things considered. They’re all very nice girls and they’ve all grasped the basics. Besides using the bathroom, our most anxiety-inducing activity right now is drinking. In order to drink, I have to bow down, my back included. I always feel so vulnerable in that pose. I can’t talk and am terrified of choking. Thus, I’ve taught them to immediately put me upright once I’m done drinking. Our biggest obstacle, however, is talking. It takes time, and a lot of effort. Sometimes I almost feel like giving up on talking entirely, but that wouldn’t benefit anyone either. So I talk. I say talk, but really it’s mostly spelling and, if that doesn’t work, summing up the alphabet. It’s often a guessing game. It make me feel so helpless. I know I’m hard to comprehend, but some people are just bad guessers. I’ll say “I” and they’ll ask me “M? S?” Or someone thought I was saying “Ow” instead of “L”, leading to her asking me: “Where does it hurt?” Admittedly, my L does sound a bit like I’m saying “ow”. Helpless and frustrated, that’s me. Or I’ll try to say “Kane”, (a band’s name) and my carer writes down “Kan e…”, waiting for me to continue: what letter’s next? Like I wanted a space there. Good luck explaining that. No, that’s where Ward and Floor come into play. I’m glad they’re still home so they can translate for me, because nothing is worse than not being understood. I’ve promised myself that I’ll keep talking, but I’m not having much fun doing it. Tomorrow is their first day of school. Ow.

Singalong

Floor turned sixteen. From the family, she got a singing game; like karaoke, but it gives you points for how well you sing. I’m a huge fan of karaoke. Once, I sang the first song at a Christmas dinner party at work. I think more than half of the people there felt embarrassed for me. I didn’t, I was having fun and I’m happy Floor is too. She celebrated her birthday with a karaoke night. The boys didn’t really participate, except for Ward. Turns out, Ward likes to sing. And we the whole family sang along. Actually, as I’m writing this, I hear them singing upstairs.

Living vicariously

I can’t do much anymore. I live vicariously through others, like stories told by friends and family, or my children having fun (it always makes me smile when they sing karaoke, despite the fact I can’t participate, or the fact that Ward took over my old race bike to go on tours with his dad). Sometimes it’s even surprising to me that that’s enough to get me through the day. How could I, a person who used to be as active as they come, be content in such a passive position, as a spectator? And yet, I am. I’m like a parasite.

Zeeland

Floor went on holiday with four of her friends for a week. Wisely, she told me “if you love me, let me go.” That’s true. I was completely fine with it. In fact, I applaud it. I trust her not to make bad decisions. Let them do their thing, don’t let them settle down just yet. Every day was evaluated. Rows were worked through. Annoyances were discussed. I don’t think I was as introspective at that age. But times have changed. The petty arguments in Big Brother’s House can attest to that.

Construction

After a long preparation time, we got the news that construction on our new sunroom would start on the 13th of September (but by now it’s already been delayed to the 20th). We’re not really looking forward to it, but it has to happen. Hein is excited. A large amount of the cost will be subsidised. During autumn we’d like to go on holiday so the builders have an easier time working. We also want to be out of the house to avoid all of the dust and dirt.

Het bericht Diary August 2004 verscheen eerst op Living with ALS.

Yesterday, Ward watched The Blair Witch Project. It’s a movie that’s shot like a home video about three teenagers looking for a ghost in the woods. At the time, it was hailed as one of the best and most terrifying horror films ever. We went in feeling slightly apprehensive. Ward repeatedly wondered aloud when the scary part would start. Just in case, he had a comic book to hide behind if the movie got too scary. As it turns out, there was no need for worry. It wasn’t scary at all.

TV

I watch a lot of TV, only during the evening though. I don’t have many alternatives and I’ll usually be bored of my PC by nightfall. I like watching TV as a family. Floor is my most loyal TV companion. That does mean that we spend the night flitting between shows I like and shows Floor likes. Usually we’re able to compromise, although I do watch The Bachelor and America’s Next Top Model with some resentment. I’m still not used to the endless channel flicking. The moment a commercial break starts, we’ll go on a journey, from TMF on to MTV, a quick detour to The Box and back again. It drives me mad. I used to be the only crybaby whenever something sad came up, but now I’m not the only one to snivel occasionally. Apparently, it takes a certain emotional maturity to fully empathise with people on TV. I feel such kinship with Floor when she reaches over to get more tissues (she has to wipe my eyes as well as her own). On Sunday we watched Survivor and The Block. I prefer Survivor. Ward enjoys it too and always watches along. We support the Belgians, purely because the Dutch contestants deliberate too much. I always fall asleep during documentaries, no matter the subject, but I always wake up just in time for the parliamentary debates, my favourite.

Autumn break

We still have to plan our autumn break outing. Hein wanted to go to a Center Parcs. We scouted one such bungalow park in Zandvoort on Saturday, which advertised wheelchair accessible cottages. It technically did, but the houses were way too cramped. I’m glad we went, though. Yesterday, my new help Brenda and I went to look for a proper handicap-friendly retreat (and I’m glad I got Brenda to come along, a true test of our cooperation and my comprehensibility). We were too late, every single woodland cottage was already booked. We did stumble across a nice house in Amsterdam. Apparently, it’s where Renate Rubinstein lived out the last years of her life. Spending the week in Amsterdam sounds great, but the forest would be fun too. The kids like the sound of the house in Amsterdam. Maybe to compensate for Zeewolde.
By now, we’ve taken a look at the house. It’s spacious and empty. It’s usually someone’s home, but the owner is going on a holiday of her own. We’ll have to take care of four cats while we’re there.

Done

I just got back from the dentist, because my false tooth has dislodged itself again. In January, I had a gum infection which turned out to be situated below the tooth. It was able to drain, however, and it didn’t hurt again until the week before my tooth fell out. Somewhat afraid, I made the dentist appointment. Turns out, my gum is totally infected to the point where putting the tooth back in is impossible. I was referred to the “special cases” department in Amsterdam and in the meantime I’ll be toothless. Technically it’s not a terribly difficult procedure, but I can’t sit in a dentist’s chair and keeping my mouth wide open for that long is another impossibility. It requires patience, something that’s in short supply for me.

Tomorrow I’ll get a new pair of shoes fitted, another “fun” activity. I’m not looking forward to getting fitted shoes, they never look comfy or lightweight. I need to be able to stand up in them for a few minutes. They can’t pinch my feet, either. My left foot is covered in purple pressure marks that hurt and itch. I never tie my shoes too tightly. As twhe day progresses, my feet swell a bit because of my body’s fluid retention. Besides that, my left foot goes inward and my right foot goes outward, so it’s one hell of a task to even stand upright. Another job for the “special cases” department which will probably take months. Maybe I’m done wearing shoes or having teeth.

Long live construction work

The demolition has commenced, or should I say, construction has started. The garden is a mess. Hein repotted all of the plants we could save. On Monday morning at 7:15, seven construction workers arrived on our doorstep, all smelling of cheap cigarettes. It was still dark outside. I tried to be dressed and ready before they arrived, so I had to get up really early. The builders brought autumn with them, but despite the rain and wind, they worked steadily. The contractor made a day-to-day schedule, but the builders worked too quickly to stick to it. Our garden is not connected to a path, so all materials had to come through our living room. Tens of wheelbarrows of sand and concrete, windows and frames, our living room was like a highway, mud and all. I locked myself in my room for most of it, only coming out when everything was cleaned up. But there is a lot to look at and I’m never alone. The carers took pictures of everything.

The carers are doing well

My new carers are doing well. I’m making scrapbooks, which requires a lot of deliberation: sorting, page layouts, what glue to use. Carlien helped me declutter my PC, Brenda helped plan our holiday. We talk a lot during coffee breaks. I didn’t entertain any guests for the first few weeks to bond with my caretakers. When I first met them, I told them to take initiative in conversation. They have been doing that, and I’ve had fun talking back. In short: I’m starting to trust them. They do ready my online diary, so I can’t be too candid.

My piece about comprehensibility was very relatable to ALS patients. Two quotes:

”Apparently, using an alphabet communication board is difficult for some people. For instance, ladies in their sixties have a tendency to forget the first letter as soon as they’ve heard the second, after which they’ll look at me strangely, wondering what word starts with “gnt”. There is none, I was trying to say “gentle”.”

”I’m also having a hard time getting people to understand me and I limit myself to banal topics, like needing the bathroom, wanting to drink or needing my arms repositioned, etc. I don’t bother with conversations anymore, except for when I’m using my computer. Like you, I’m resorting to spelling more and more and I, too, am amazed at how people always think I’m saying “h” when really I said “r”, constantly repeating the wrong letter even though I’ve made very clear that they messed up. I’m always glad when they just recite the alphabet, but even that can go wrong, like when I was trying to say “there” and they thought I was trying to say “the re…” Very frustrating, on both sides.”

China

While I don’t concern myself with it too much, I feel it is my duty as an ALS patient to mention the Dutch woman with ALS who is getting stem cell treatment in China right now. I believe that stem cell treatment could have some short term effect. I’m skeptical. The patients who received treatment report positive results within just a few days. It’s even been on the news here. The reason for my skepticism? Treatment like this has been hyped up before. Olav Tindal returned from his treatment in Mexico feeling way better, but within a year he was dead. I myself had a positive reaction to my first prednisone regimen. I walked better for three months, but it didn’t change anything about my ALS. It wouldn’t surprise me if it was simply a placebo.

Het bericht Diary September 2004 verscheen eerst op Living with ALS.

I’ve taken up reading again. I’m reading a book by Renate Rubinstein, in preparation for our holiday in her former home. My carer does her own reading and turns the pages of my book as well. It’s very cosy, one of the things I like about autumn. It’s the first book I’ve read in 5 years. I’m still a very impatient reader. If a paragraph is too uninteresting, I’ll just skip it. I’m not a connoisseur of elegant language. It made me remember why I don’t enjoy audiobooks. I like to dictate my own speed. The novel is about a star-crossed love affair between Renate and Simon Carmiggelt. Neither of the two sounded familiar to my carers, who just stared at me, glassy-eyed. I’m getting old.

Excluded

The work on our sunroom is going well. Sometimes, we’ll ask for details on the building process. It makes the foreman, who knows that I’m the one who is actually behind the questions, feel like I’m trying to control him. He doesn’t realise that this is the only way to communicate and to stay on top of things. I like to know where things stand. And then, one morning, Hein and him had a private discussion about the sunroom in the garden, after which they even changed some of the plans. I felt so excluded then. How hard would it have been to have that conversation with me present? Luckily, we met with our architect and foreman that afternoon. The architect wasn’t happy about the changes that stemmed from their private discussion either. We talked about everything and all of it was jotted down in a verbatim report. It was my first recorded meeting in six years. We’ll reconvene next month. I’m already looking forward to it.

An army of men

The first three weeks of construction were relatively quiet. Three builders and the occasional concrete mill. But the fourth week was an in-and-out of all kinds of people. The electrician, the plumber, the men responsible for the underfloor heating, the cement provider, the tiler and the plasterer all swung by. The living room is relatively empty in preparation for the construction of a ramp and the accompanying dust. For the last week of construction, when we’re back from Amsterdam, our hallway will be completely blocked off. That’s going to be a challenge.

Amsterdam

There’s a big difference between going on holiday and leaving your house because of construction work. In the latter case, you’re always thinking about home. Not like Amsterdam wasn’t fun, but there was always that gnawing feeling of worry about the wellbeing of our home. Our holiday home in Amsterdam was gargantuan, with a kitchen spanning 15 metres, 17 cabinets for kitchen appliances. Our first few days felt like a scavenger hunt whenever we needed any kind of cup, saucer, plate or cutlery. The living room was the size of a ballroom. Every one of our many guests was awestruck.

We were told in advance that the owner’s cats liked to be outside and we wouldn’t see much of them, but that couldn’t have been less true. As soon as we arrived, they demanded all of our affection. The Siamese liked to spend most of its day sleeping in my lap. Lieke slept with two cats in her bed until we decided to put them outside for the night. The kids love them, Ward tucks one of the in every night. And of course, all of us want to get a kitten now.

Floor went on a shopping spree, Ward and I did a Matrix marathon (all 3 DVDs in rapid succession), we walked through Amsterdam, visited two small museums and entertained plenty of guests.

Ward got 14 mosquito bites on his face, and to our great shame we spent a long time in IKEA (following a strict path laid out for us and long queues at the tills because of the immense summer crowds). Meanwhile, our home had turned into an unlivable construction site. When we were still home, the builders would wipe their boots before entering, but as soon as we left they abandoned that custom, resulting in a thick layer of grit. Hein, who went to check on the house everyday, returned to Amsterdam telling horrifying stories about our home; what were we going to do when we got back? Lieke put together a cleaning squad, so we could come home to a reasonably clean home. It’s good to be back in my own bed, using my own PC and my own shower. But, most of all: I can go back to monitoring the construction crew.

The final week?

According to the schedule, this week is the last week of construction. Monday, the day we got back home, was a bad day. The heating was turned off and there were six construction workers in our home from 8:30 onward. There was a draught. Everytime I had to use the restroom, we had to send all of the workers outside. Luckily, by that afternoon they turned the heating back on and four of the workers left. They’ve gotten used to us being back home, so they wipe their feet and close all door behind them. I was supposed to spend this week in a room with a curtain, so I could go about my business in private. That same day, I recanted that plan. I like to be present and see what the workers are up to, something I’d gladly sacrifice my privacy for. When we got back home, our kitchen was installed, but not yet stocked. My carers spent ages putting everything back in the new kitchen cabinets, surrounded by builders and building materials. On Thursday, they were done installing the windows, a milestone we celebrated with apple pie. We didn’t quite keep up with our schedule. While the bulk of the work is done, the finishing touches still need to be put on our new room. That will probably take another week or two. I don’t mind, I’ll have lots to see. Seeing something come together like this is immensely satisfying too. Being a builder for small contracts like this one must be great. I’ll miss them.

Observer

I’m an observer and have a great eye for detail, which is a great trait to have when putting the finishing touches on a project like this one. Loose tiles, missing plinths, badly applied sealant, nothing gets past me. But I prefer observing in a social setting. Put me in a campsite and, in no time, I’ll know who’s related to whom, who are friends and who are foes. The same goes for workers. Usually, there were two of them; one is the overseer and the other does all the heavy lifting. Like a family, they interact; the stooge puts on a big mouth and before you know it, they’re bickering like an old married couple. The past week has been most indulgent for me.

Het bericht Diary October 2004 verscheen eerst op Living with ALS.