The kids moved their rooms to the attic. I haven’t been there in five years. I used to have some idea of what their rooms looked like, but now that they’ve moved, I’m completely in the dark. Pictures and video don’t do the atmosphere justice either. It’s like the Euro. I understand people are having trouble adjusting, but I’ve never used them. I don’t even know what the individual coins and bills look like.

Documentary

Last week I watched a documentary about Diane Pretty, an Englishwoman with ALS who had to fight for the right to end her life. It did not raise my spirits. Her limp head and yammering voice are all too familiar. The only thing that wasn’t, was the pain. And it all looked distinctly destitute. Typically English. I don’t have a living will. Dying at a previously decided time sounds abhorrent to me. I’m counting on my doctor to give me morphine when my breathing fails. That’s something I need to talk to him about, actually. I’m hoping for a painless natural death.

Chipped tooth

Last week I chipped my front tooth while brushing my teeth. In its stead there’s a huge hole. It looks horrible, and it’s equally clunky when I’m trying to eat and drink. I use my front teeth for everything. I don’t know if it’s reparable. I can’t hold my mouth open for long and tilting my head back makes me nervous. In short, I can’t sit in a dentist’s chair. Hopefully there’s a quick and clean solution, because nothing spites a face more than missing a tooth. Some friends got me an appointment with a dentist who knows what ALS is and has experience operating on disabled people. It should be over and done with in 40 minutes. We’ll see.

Armed with a letter I’d written to the dentist, laying out my fears and considerations, we went on our way. He was such a nice man. He took photos and laid out his procedure. I was allowed to stay seated in my wheelchair. I had the operation the week afterward. I can show my face again. He had to improvise a bit, because the false tooth wouldn’t stick. He thinks it had something to do with saliva build up underneath the tooth, which isn’t great, structurally. He hopes it will stay put. I only bit his finger once. It resulted in him yelping and me laughing quietly. I think it has crossed everyone’s mind, biting the dentist while they’re rooting around in your mouth. I’d warned him about me involuntary biting reflexes. I do have to get used to my new tooth. At least my sandwiches don’t slip between my teeth anymore, and I look great.

Snow

I’ve had a few wonderful snowy winter walks. Everything looks so different. Besides that, I’ve been sitting in the sun, in front of the window.

Theatre season ticket

Theatre season was off to a bit of a slow start this year, but this month we went to see three shows. They were all good, although I did fall asleep during one of them.

Spa day

We had a spa day. It was Floor’s brainchild. We treated ourselves to a footbath, moisturizer and face masks while we enjoyed a few episodes of Friends. I enjoyed it immensely. That’s my girl!

Secondary school search

Ward got his expected grades and has been looking at different secondary schools. Four Saturdays of trial lessons, instead of football. We’re not playing a huge part in it. We had seen most of them already from Floor’s secondary school search. We’ll be going to an info day on Thursday at Ward’s favourite school thus far. He’ll be taking his exams next week. Let’s wait for the result first.

A good start

And I have been busy writing Ward’s end-of-year musical. This weekend I felt especially creative and wrote 5 scenes.

Het bericht Diary January 2003 verscheen eerst op Living with ALS.

Last week, I finished the musical. It was all I could think about. It practically wrote itself. Ward had minimum input. He was fine letting me do my thing. 15 pages, some of them copied word-for-word from memory. When I write a lot, my head gradually tilts to the side, making clicking the right words and letters difficult. I was so driven that I managed to finish the project in two weeks. It’s a real 2003 period piece: Idols (and its dreaded jury members), heaps of pop culture, politicians and jokes about our awful public transport system.

New aide

It’s that time again, I have to get used to a new aide. We have no traditions or routines to speak of. Despite only having known each other for two days, we’re supposed to fully trust each other and work together. I can’t personally tell her, and the note we prepared doesn’t capture the intricate details. How do I like my cup held? Don’t leave me alone for too long when I haven’t used the bathroom in a while. Don’t ask me questions while I’m eating, I can’t answer. I’d rather we don’t talk at all during meals. Things that go without saying with my other aides have to be re-explained. But I do like her as a person, which goes a long way. She had a bit of trouble getting me to the bathroom, but we managed it eventually and it was a learning moment for her. I’m sure it won’t happen again. Besides, it’s fun to hear new stories every once in a while. And boy, does she like talking. We’ll be fine, Sandra and I.

Sleeping

These days my shoulder hurts when I’m sleeping. Not because of my mattress, but because of my lack of muscles, meaning my arm is too heavy for my rotator cuff. Now I put my arm on a pillow. I’ve come up with an ingenious way to roll over in bed. While I’m lying on my side, Hein tucks the blanket underneath me, making turning so much easier. On average, I still need Hein’s help once a night. And we leave the heating on at night so my muscles don’t get cold and go rigid. There’s a whole science to sleeping comfortably.

Systemaniac

I’m a systematic, deliberate kind of person. It manifests most when I’m confronted by someone who is anything but. Sandra is one of those people. She wanted to clean up after lunch and forgot to put the lid on the butter packet. I couldn’t help but tell her, in my almost indecipherable voice, that she’d forgotten the lid. Ridiculous. Eventually I had to resort to spelling, L-I-D, L-I-D! Like it mattered at all. There are better uses for my energy than this, which I realised way too late. I’m weird like that. I need to learn to let some things go. Another example: we went for a car ride and I wanted the kids to be strapped in. That was when the big guessing game started, something I bloody hate. Something about the windows? Open them? Close them? The brakes? Did I put on the handbrake? I started spelling again: S-E-A-T-B-E-L-T. And then it click for Floor: “Mum, if you hadn’t said anything we would have fastened our seat belts by now.” Sigh.

Skiing holiday

We’ll be going on a skiing holiday on Sunday, February 23rd and return on the following Sunday. We’re hoping to avoid heavy traffic that way. And we’re hoping for fair weather, of course. Moreover, it turns out that we can take the car all the way up the mountain, to a wheelchair accessible restaurant with a view of the ski slope. I wasn’t expecting that, but I’ll be glad to satisfy my voyeuristic needs on a real winter sports terrace.
There was no heavy traffic to speak of, as expected. The restaurant was 2750 metres above sea level, accessible by driving up the serpentine 26 km long mountain road. Driving in the mountains is not a pleasant experience for me. When we go up, my head is pushed into my headrest, except when we brake, then my head is launched forward. Going down, I could do nothing except let my chin rest on my chest. My scarf was too tight and I felt like I was being garotted. Other than that, the sun was blazing but the wind was icy cold. In short, I’d mostly be sitting inside. Not exactly what I was hoping for. The next day, we went down to another village, where we found a sunny terrace. By that afternoon, we had moved to a patio closer to the slope. A lot to take in. It did take Hein and Lieke (Hein couldn’t manage on his own) a lot of effort to get me and my wheelchair up there. For the first two days, when we didn’t have a routine down, I wondered why I was subjecting myself to this. For my family, of course, but after a while I started to enjoy being outside and taking in my surroundings. The four-star hotel was completely wheelchair-accessible. There were ten other wheelchair bound guests (they were a bit more athletic, skiing in special skiing wheelchairs). The food was prepared the way I wanted it. The kids went tobogganing. And of course, we had a Tyrolean theme night, with hits like “Es ist so toll, ich bin der Anton aus Tirol”. We visited Innsbruck on our last day there. It’s a city everyone talks about when going on a skiing holiday, but nobody actually visits. I wasn’t expecting it to be as beautiful as it was, with sophisticated-looking residents, surrounded by white mountains and low-flying aeroplanes. On Saturday we watched the German version of Idols, “Deutschland sucht ein Superstar”, but it was a lot less fun than ours. On our return journey I got the sad news that my favourite Idols contestant had been voted off.
It was amazing to experience one more skiing holiday. My everlasting thanks to Hein, Lieke and grandma Lia.

Het bericht Diary February 2003 verscheen eerst op Living with ALS.

It happened without warning. The patient lift suddenly stopped working, right when I was being lifted up. Surprisingly, I managed to stay relatively calm. I surrendered, trusting others to solve the problem for me. Luckily, Sandra remained calm as well. My mother-in-law was visiting and together they helped me down and sat me on the commode. I tried to fight it, because I would have to change seats again if they put me on the commode. And, you guessed it, we got in trouble when they tried to get me back in my wheelchair. They couldn’t get me upright. In fact, I started slipping down. Still, we remained calm. Sandra bravely took charge. We made calls. Hein was in a meeting. Astrid (my other aide) was indisposed. I suggested trying Inge (my previous carer). And sure enough, she was home and got on her bike at once. After ten minutes she lifted me up on her own and saved me from my predicament. My guardian angel. Sandra immediately called the manufacturer, who told her that there’s an emergency button on the lift that immediately puts you down. Too late, but of course I informed my other carers about the button. The manufacturer sent someone that same afternoon to fix it. But my faith in my machinery suffered a heavy blow. Every morning, I ask: “could you make sure the lift is working?”

Medical devices

Humans aren’t made for being dependent on tools. However fantastic they may seem, they’re inherently unreliable. The following is an enumeration of small technological gripes I’ve had over the past few months that I haven’t discussed yet.

As opposed to the four months I was promised, my PEG fell out after only two months. Of course, it happened at midnight. Useless. Luckily we had a backup and Hein, hands sweating, managed to fix it. It was a relatively simple procedure. The problem? The little balloon that keeps my PEG in place in my stomach was slowly deflating. It happens more to some people than to others, depending on stomach acids. Good to know. One and a half months later we measured the air content of the balloon again, only to find that it was almost deflated again. We inflated it ourselves.

One day, the stair lift broke down. We had to wait till the next day for a repairman. Hein and I were forced to sleep downstairs, with Hein on a mattress and me in my chair.

The foldable shower seat has rusted shut for the umpteenth time. We got that model specifically so I wouldn’t slide off while showering. The repairman, with a straight face, told us to not use the seat as much.

And yesterday, my new tooth fell out. It didn’t break, like the dentist predicted, but it fell out, screw included. Of course, the screw gets put through the wringer, especially while I brush my teeth. One week later, the dentist put the tooth and the screw back. “This’ll do for now,” he said.

TV show

An editor for a TV show has read my diary and wanted to interview me. I replied, writing that I’d like to talk about my disease, but I didn’t want to get on TV. Immediately they lost interest. Of course, they were looking for someone with advanced ALS, preferably one who has kids so they can show the effects the disease has on loved ones. Hein didn’t refused because he values our and especially our children’s privacy. I refused because I think I look unpresentable. Besides, the programme is specifically about ALS, and a person is more than just their disease. Programmes like that just try to make everything look horribly sad. I use writing to negate that.

Garden season

Garden season has commenced. The Christmas tree, which was still in the garden, lights and all, was replaced by a pot of violets. I can be found in the garden again, planning. The shed has gone all moldy, so we decided to push it to the back to make the garden itself more spacious. It’s never been clearer. Gardening season has begun.

The return visit

In April we’ll have a Dane over, with whom Floor had stayed during her trip to Denmark. Floor wants us to take all kinds of measures, like a hook on the bathroom door, shower curtains and taking those silly bike bags off of her bicycle. They’ll be going on a bike trip and she doesn’t want to look stupid. What makes it even more complicated is the fact that Floor is the only one of her friends who will be hosting a boy. She’ll have to do boy things. In short, his visit is preceded by a bunch of dilemmas. Luckily, they don’t see me as one of them.

Birthday

Today, on Monday, March 31st 2003, I turned 48. Yesterday, we had a small celebratory gettogether. I don’t feel like it’s my birthday. Nonetheless, I’ve been pampered to bits. Hein’s mother baked an apple pie and prepared three different soups. My brother gave me a bouquet of 48 roses which made me very emotional. What a wonderful gesture. I’m already 48. Wow.

Het bericht Diary March 2003 verscheen eerst op Living with ALS.

My brother has visited me on the third Wednesday morning of every month for the past four and a half years. We always go out for a walk. The bad weather had only deterred us one time. Last Wednesday was the second time. Shame.

More than four years of worry

Hein is obviously at the end of his rope. I’ve required his help for 4.5 years now. It changes a person. He gets impatient sometimes and has a short fuse. On top of that, he threw his back out on Monday. We’re going to look for more help, including weekend assistance. Thus far we’ve tried to not use professional help when the kids are around, so it usually comes down to Hein to do the work. We’ve noticed that, whenever carers are around, the kids tend to stay in their rooms, which is no fun. In short, we’re in a bit of a dip.

The return visit (2)

By now, the Dane has left and we have our privacy back. Everybody has to adjust to having guests. Floor had a great time and got very emotional when it was time to say goodbye. A great experience. Floor got increasingly more nervous as the Dane’s day of arrival drew nearer. She cleaned her room as soon as she got back from school, she made her bed and had a shower. I had a makeover too: a clean shirt and vest. All of that for the one minute I actually got to see him, because he immediately went to bed. The whole week was like that. As soon as they got back home, he went to bed and every morning they left at the crack of dawn. Even Sunday, a family day (which we stressed out about beforehand. What are we going to do? A theme park? Hiking? A football match? Opinions were divided.), was spent snowboarding. Floor had formed a sort of group with three other girls who had boys as exchange partners. No trip into the city on Saturday, but skating and bowling with the boys. Floor was a good host. The biggest point of contention was the morning shower routine, giving everyone enough privacy and time to shower while going to school on time.

Hot/cold

Seeing as the muscle in my arms have almost completely disappeared, I’m cold a lot. There I’ll be, at night, huddled in my fleece blanket. Apparently I just can’t retain heat anymore. On the other hand, I get way too hot when it’s warm out. On Easter Day, we went to watch Floor play football, but it was way too hot for me. I’d forgotten how awful it feels. Besides, always sitting in a wheelchair doesn’t provide great ventilation. Oh, how I longed to be in a cool room with my shoes off. We’ll be holidaying in Dordogne this summer, we took the leap and decided to go abroad. I hope it won’t be too hot.

The turn

Every morning I have to make a 90 degree turn while seated on my stair lift. My feel will go from hanging above solid ground to dangling above the stairwell, a harrowing experience. It’s a question of whether I can keep my legs still, so I don’t slump down and go into a spasm. It barely ever happens. Nonetheless, it’s the most nerve-wracking moment of my morning and I’m always glad to have gotten downstairs. That’s the downside of having a house with multiple floors. Hein suggested we move or have an extra bedroom built downstairs. I’ve got the feeling that the stair lift will last as long as I do.

Utrecht

It had been six months since the last time I’d had my lungs tested, so we went to Utrecht again. I decided to only have the oxygen level of my blood tested, which was fine, a bit higher than usual actually. When we made the appointment we asked for my favourite doctor, but sadly we got the doctor I’d liked to avoid again (see November 2002). We tried to discourage him by saying nothing had really changed since our last appointment. Despite that, he started dutifully rattling off his questions. He asked us what drugs I use, we answered, again, that nothing had changed after last time. He got the hint and left it alone. We could have done the blood test locally and done this conversation on the phone. How does one tell such an uptight doctor that you’d love to have a conversation, but one about your holiday, the purpose of nighttime respiratory aid or high saliva production in the morning? Every hope I had of having a normal conversation with him was smothered during his “interrogation”.

Denmark

We went on holiday to Denmark during the May holiday. It was amazing. We had a wheelchair-accessible house near Aarhus. A house that fitted 8 people, one bedroom too few, but otherwise completely equipped; dishwasher, washing machine, clothes dryer, a cd cabinet and a wood stove. The park itself had a tennis court and a sauna where people were expect to cool off by diving into the sea. Our daughters were courageous enough to take the plunge. Denmark is an empty-looking country, nothing spectacular but very friendly, with a lot of coastlines and water. We visited the place Floor had stayed during her exchange trip (to collect a jacket she’d forgotten there), a horribly boring town where the greatest attraction was a local pizzeria. But Floor would go back in a heartbeat. We went on a nice walk, during which everyone gave their utmost to push me up all of those hills. We went to see an open air museum, which I didn’t see a lot of because of the cobblestone roads. Aarhus turned out to be a surprisingly lively city which even had a Tivoli park, like in the Netherlands. The weather was fine. I had trouble making myself heard in a company in which it seemed like there was always at least one person talking. Doesn’t matter. I had fun.

Het bericht Diary April 2003 verscheen eerst op Living with ALS.

An annoying and difficult question to answer. People think my illness dictates my whole day, but it doesn’t. In fact, I try to think about it as little as possible and I feel normal for the greater part of my day. I try not to imagine what other people see when they look at me, a woman slumped in a wheelchair who can barely talk and needs constant help. (Photos of myself always shock me.) But within my psyche, my illness plays only a small role. My interests, feelings and routines are still the same I think that’s the way to go: to think about one’s illness as little as possible. My life is as regular as I can make it.

Boring

Sometimes I do think about what others see when they look at me. Especially on holiday, when I’m around people constantly, I’m confronted by it. I can’t withdraw and daydream and I can’t stick to my day-to-day schedule. Being confronted with that reality doesn’t make me happy. I don’t contribute to conversations, have to be spoon-fed and be dragged along on every walk. What do they get in return? Where’s the reciprocity that I value so much in relationships? Admiration of my strength and perseverance is not reciprocal. And all Hein does is haul me around. Nope, not much fun to be had with me. I’m boring. I’d rather retreat into my thoughts, my “being”, where I’m normal.

Five years post-diagnosis

Five years ago, the definitive ALS diagnosis was made, while the illness first manifested six years ago. Five years is an achievement in ALS circles. I even have a website that documented those five years. Does that make me happy? Overall, yes. After all, I wasn’t expecting to see my children grow this old. There are plenty of other things in my life that make me happy. Nonetheless, my dependence and constant need for care from Hein is very difficult for me. And not being able to speak properly. But that’s part of the deal, free of charge, part of the diagnosis. Five years. I’m glad.

Mad

Sometimes I get mad at Hein. I don’t have many ways to express that anger at my disposal. I can’t walk away, I can’t slam doors, I can’t scream or say nasty things. No, instead I stay quiet and shoot dirty looks. I can keep it up for a while. Of course, I stop when I need him again. I’d need the bathroom or, like Saturday last, I’d want to go to a so-called geranium market (which didn’t have any geraniums, mind you). What else can I do? Nothing. There’s nothing else to it but to bottle up my anger. I act normally. I’ve never been one to stay angry for a long time, but these days I barely have any time to be mad. It’s frustrating, but my own needs are more important than my emotions.

Eurovision

I watched the Eurovision Song Contest with Floor and three of her friends. We turned the TV volume way up and yapped throughout the night. Every odd movement, weird clothing article and facial expression got a laugh, or at least warranted a comment. We graded every performance. Of course, we let the Netherlands win, although the ladies weren’t too thrilled by our contestants’ getups. I agreed. It’s an odd experience, watching TV with a bunch of teenage girls.

Walk

On Sunday we went for a walk with a fellow ALS patient, Hannie and her husband, through the dunes in Noordwijkerhout. It must have looked very strange, two paralysed ladies being pushed by their husbands. The most hilarious moments were when we both tried talking at the same time. Hein stepped in, saying that one of us is hard enough to understand, let alone two talking at the same time. We both did our ALS laugh, meaning difficult-to-control guffawing. It’s nice to have someone to relate to once in a while.

The musical

While I finished the musical in record time, actually preparing for it is going to take some time. The roles have been distributed and they went over the text, but that was only a table read. The sets haven’t been made yet, the costumes have yet to be prepared. School isn’t out yet, after all. They’ll be going to camp next week, after which they’ll have four weeks to get the show sorted out. That’s too bad, because a big production like this one is a fun note to end their school year on. Of course, I do have a personal stake in this play succeeding. I’m hoping for the best.

Het bericht Diary May 2003 verscheen eerst op Living with ALS.

This year’s ALS Day was held in Artis Zoo. Hein had to work in the morning, so we arrived muc later. We got there at two, just after the formalities had ended. From what I could gather, not that many people had shown up. The Valscherm foundation doesn’t attract too many new members, while the number of older members steadily decreases. Vascherm has been instrumental in the founding of the Dutch ALS Centre and they couldn’t have done it without Vincent Straatman, their inspiration.

I loved seeing Vincent and his wife and Jan van Atten. Vincent was unable to speak anymore. Sherida, his wife, had put the alphabet into 5 schemes. She called out the names of the schemes and letters and, by blinking, Vincent made clear which schemes and letters he meant. Sherida was a lightning-quick interpreter. Still interested in us and our daily lives. Jan van Atten could still write and did fervently. Oh yeah, and Artis is a very archaic zoo with animals in cages that are way too small.

Tenis

This month’s theme is tennis. Of course, we were heavily invested in Martin Verkerk’s tennis matches in Paris. Moreover, we went to the ceremony in his honour in Alphen. Moreover, Ward managed to win a set against his dad for the first time. For the first time in years, we organised a tennis tournament with our friends and their kids, including a trophy that hadn’t changed hands since 1988. And finally, we ended the month with a youth tennis tournament thrown my our tennis club, where both Ward and Floor managed to win prizes.

Homepage

I took a look at my homepage’s statistics again. This month I got 3600 hits. Not too shabby.

Musical

Yesterday, July first, was the day the 6th grade’s farewell musical premiered. I didn’t have too much faith in the whole thing. They started rehearsing way too late and Ward wasn’t too pleased to be rehearsing his part, more like angry and resentful. Only in the last week before the big show did I regain some of the t faith. And it turned out to be a fun show. A bit more messy than Floor’s performance. But it did have more individual roles, so it was a bit more complicated. I was put in the spotlight as the playwright and after the show I was lauded by grateful parents, to whose compliments I responded by winking merrily. And Ward sang a beautiful duet. In all honesty, I’d already written this song for the previous musical, which had been as much of a hit then as it was this time. This musical also marks the end of our children’s primary school days.

Het bericht Diary June 2003 verscheen eerst op Living with ALS.

Looking to the side, especially to the right, is hard, because of my neck. When we’re out for coffee, I ask my partner to sit half a metre in front of me, taking up most of my field of view, so I don’t have to strain my neck. City sightseeing, going to museums or going to fairs are equally difficult. My companions see so much more than I do, to the sides at least. It means that, during fairs, I’m always looking ahead, gazing the next booth (which is never quite as interesting as the one my companion is perusing). In cities, museums and churches, a lot of beautiful things go unseen.

Tempting

The old me remembers sun-kissed holidays, starting the day off with croissants and buttered baguettes, eating salads on the patio, reading books, barbecuing, hiking, swimming, in short, the things good holidays are made of. But the new me can’t read books, can’t go buy baguettes, hates the heat and hates going for drives on bad roads because of the way my head bobs around. In short, the new me has no business going on holiday. But the new me isn’t that assertive yet. The old me makes the tempting offer “Let’s go to France.” And the new me happily accepted.

Memories are funny. Bad experiences gradually fade. The new me is guilty as charged in that regard. Two years ago, after a sweltering holiday in France, I thought: “Never again.” But, just a year later, the temptation got the better of me again. During the first few boiling days in France, the hottest, I thought to myself: “Why am I doing this to myself?” But next year, when the old me tempts the new me to go on another holiday in the heat, please stop me.

The journey

We couldn’t have picked a worse day to depart. Not because of traffic, but because of the heat. According to our neighbour who had gone camping that Sunday, it was 36°C in the shade. When we drove past a thermometer at 23:00 it was still 29°C. And we don’t have air conditioning in the car. My feet and arms were swollen and aching. I didn’t have the strength to keep my head on my headrest. I was boiling. Every 5 minutes I had to be sprayed down with water. Every hour I needed some time out of the car. It didn’t do wonders for our moods and pace either. What moron decided to go to France? We arrived, only to find that our cottage was like an oven. Luckily, Hein’s mother brought a fan and a breeze picked up. The kids slept outside. I slept in my chair. This holiday was off to a good start.

The stay

We were in northern Dordogne, staying in a cottage built by the MiVa Foundation on a chateau campground. It was small but had all necessary amenities, including a patient lift. The kids slept in a tent. There was abundant shade. It stayed too hot for two more days, but then a rainstorm cooled the place down. Luckily there was a lot to do. We were in a nature-rich region with myriad idyllic villages and towns. Hein and the kids went mountain biking and canoeing. The fun thing about France is that there’s no TV so we spend that time playing games instead. Every day is spent outside. Our cottage had a pond with a pier. They fished a lot. There was a lot to see. And every morning we got our good old fashioned Dutch newspaper. Lieke, Hein’s sister, relieved Hein of some of his duties, so he could get some relaxation too. We did the return journey by night, which was a lot less warm and a lot less straining. Floor and Ward took turns keeping Hein awake behind the wheel. Well, I had fun after all. By now, I’ve looked at the Vendée as a potential holiday destination for next year.

Spam

I came home to 85 unread emails. 85 of them were spam, all of which got my email from my homepage. 6 of them even contained viruses. Despicable.

Vincent

On Friday, July 25th, 2003, Vincent Straatman, the founder of the Valscher Foundation passed away. It shouldn’t have been surprising, but it was shocking and upsetting to me. Vincent was 34 and got ALS when he was 30. He was beloved and achieved a lot.

Turbulent nights

My nights have become too hot. I wake up often, twisting and turning in bed. Because of that, my legs seize up, leading to more twisting and turning. Besides that, I’m plagued by nighttime intrusive thoughts. When I’ve played too much scrabble, I’ll dream that my legs are letters, only able to spell out “on” and “you” (they’re almost unmovable). Every time I ask Hein to help turn me on my side, I’m hoping he’ll give me some new letters. To no avail, of course. Eventually these thoughts make me so sick that I have to just get out of bed. Like that, my head is filled with intrusive made-up scenarios. A good night’s rest is no longer guaranteed. Disappointing, because sleeping became easier over the past six months. Every night, I ask God to not make me wake Hein up as much.

Het bericht Diary July 2003 verscheen eerst op Living with ALS.

I don’t think the recent heat wave in the Netherlands was too bad. We have a cool home and the sun doesn’t hit our garden until the late afternoon. On the hottest part of the day it was 26.5 degrees Celsius, positively refreshing when compared to the temperatures outside. Hein had to take 5 days off in a span of two weeks to counteract my carers’ holidays. We spent a lot of time visiting the tea parlour in our cool local park. Of course, I stayed in the shade. Besides that, we experienced a few days of sea mist, meaning it was nice and cool here while the rest of the Netherlands was melting. No, this wasn’t too bad.

In the chair

I haven’t slept well since I got back from France. That and the sweltering nights made me decide to sleep downstairs, in my chair. I didn’t mind. Hein got his well-deserved night’s rest and it was cathartic for me as well. I kept it up for 12 days, until the side effects reared their heads. Because of the heat and the fact that I’m always in a seated position, I barely secrete any fluids. My feet were swollen and my lower legs were painful, making standing up even harder. I started to get worried about the swelling, but one night of sleep in a bed took care of my problems. The second problem I have is my sleeping posture. I sleep with my head down, which was doable during the first few nights, but after a while I started to feel all kinds of bent and sore. It took hours for me to get my posture back. I felt the need to sleep in my bed again, alternating nights in bed with nights in my chair if need be, to unburden Hein.

Thus far, sleeping in my bed has become a bit easier. I even survived a particularly sweaty night with a party going on next door. Nevertheless, we decided to order a better sleeping chair. Just in case.

Nighttime visits

My sleeping downstairs didn’t go unnoticed. During the first nights I was visited by a mosquito. I don’t mind bug bites much. I’m unable to scratch them, so all I feel is a sting, a bit of an itch and that’s it. No zit. No itching. I strongly recommend not scratching your mosquito bites. But what I do mind is the incessant buzzing. I’ll tell the mosquito: “Get your portion of blood and piss off”. And, to the mosquito’s credit, it did. Other than that there was a highly annoying housefly. Very irritating when you can’t swat them. But the most thrilling experience I had was when I heard a faint tapping on the table. It sounded like a mouse. I threw my weight at the table and heard the thing walking away, but I didn’t hear the thump of it hitting the ground. I opened my eyes to see if the coast was clear. I didn’t see anything at first, but then I spotted a massive spider, no more than 30 centimetres from my face. That was when I decided to call for Hein. The spider was flushed down the toilet. And thus, I was having a lot of adventures for a powerless chair bound ALS patient.

Normal again

Things are mostly back to normal, as far as one can call having a son that has to bike across town to get to school (unlike his sister) normal. Ward is in class 1q of secondary school, meaning there are 12 classes in total, and that’s only a fraction of the total amount of classes in his year. It’s ridiculous. He collected his books this morning and by now he’s started putting bindings on them. His sister showed him how, and has been instrumental in his school supply shopping. Of course, everyone has to know the unspoken rules of secondary school. Floor will start mentoring a class of freshmen this year, along with one of her friends. Last year a huge number of people didn’t pass the year Floor is in. There’s a lot of exciting things happening.

Details

Hein thinks I pay too much attention to little details where my carers are concerned. To me, the small details are the most important ones, while they’re often the most difficult to grasp to the people around me. That’s because I don’t want to explain my reasoning for every minute detail. Example. I’ve found a new way of using my head mouse. I no longer have to lift my head from the headrest, which is easier on my neck. The only thing that’s different is that I need a “lazy” IR dot, one that doesn’t fly off the screen when I try to use the keyboard. So, sometimes I ask for a different dot, while it’s obvious that the one I’m using works too. But Hein and the kids don’t get it. “Why, doesn’t this one work just fine?” So I’m forced to explain. And sometimes I don’t feel like doing that at all. Trust me. I always have a good reason.

Virus attack

Yesterday, my antivirus software intercepted at least fifty emails carrying the Sobig.F virus. It was an email barrage. Every five minutes I received the same infected email message. It took a while to clean the whole mess up.

Understanding

I’ve often notice that people who have trouble understanding me do better when I’m not talking directly to them. Apparently, the pressure of trying to understand me is stressful enough to make some people freeze completely.

Tennis tournament

Hein partook in his first tennis club tournament. On Saturday evening he played his doubles match. I was there too, as a spectator. It turned out to be quite an event, with live music and a performance by three Caribbean dancers. I wasn’t expecting that. What I did expect was for the wife of Hein’s doubles partner to show up, because I’d feel a bit desolate sitting there all alone. Imagine someone trying to talk to me. And, speak of the devil, an old acquaintance spotted me. Good luck explaining yourself. Luckily, someone called Ward over to act as my interpreter, but the loud music made that nigh impossible. Another man, who was sitting next to me, kept trying to initiate conversation and offering to get me a drink. The he started asking everyone how many blinks meant “yes” and how many meant “no”. I felt very alone then.

Talk show

Every August we watch a talk show called Zomergasten [Summer Guests. Every week, the show’s guest gets to pick a film, which is played after the show ends. -Ed.]. And of course, after this season’s final episode they played the documentary Death on Demand, a documentary about an ALS patient who wants to be euthanized. The documentary offers insight into that most intimate of moments, which garnered outrage abroad. I’d watched the documentary when it came out, which is why I knew what ALS was when I got the diagnosis. The introduction, by Zwagerman, had a few glaring mistakes. ALS isn’t painful and people who have it don’t die an agonizing death by asphyxiation. Granted, your breathing will become more difficult, but usually it’s a slow process where coma sets in before asphyxiation. I couldn’t watch. During the post-documentary discussion they kept bringing up the side of the story, even for personal decisions like this one. In psychology, we call it a cost-benefit analysis. I guess in my case, the benefits still outweigh the cost.

Het bericht Diary August 2003 verscheen eerst op Living with ALS.

Ward had to write an autobiography for school, about his family but mostly about what books, poetry and films he likes. He didn’t want to write down that I was unemployed. I told him to just call me a writer. He liked that idea. And I like that thought too, actually. The following week, Ine, an ex-colleague from KPN, called me a writer too. Talk about inflating my ego. I’m flattered.

Parent-teacher conferences

I promised to go to every single school parent-teacher conference. I’ve been to every one except for the one on September 11th 2001, because we were glued to the television that night. Last week was Ward’s first one. I didn’t go. An overfull programme and the thought of having to face 500 to 600 parents were too much for me. Floor’s school has always felt familiar, whereas Ward’s one just makes me uncomfortable. I’ll have to get over that, because I do feel that being there is important.

Sleep

I’ve been sleeping a lot better since the nighttime temperatures started dropping. I only have to wake Hein up once or twice a night. Until, suddenly, it got hotter again mid-September. Even at night it was too hot. Now I’m tossing and turning again, plagued by compulsive thoughts. I panic and get even hotter. No matter how nice and warm the days are, I’d gladly trade them in for a cool night. Is a bit of cold too much to ask?

Holiday

Hein is supposed to go on holiday for four days in September. He has earned it. The Informal Care Foundation, an organisation that works to give informal carers some time off. Twice, they offered to send a highly inexperienced worker, who, on top of that, lives a long way away. That won’t work on such short notice. As soon as she’d be competent, the four days would be up. Hein decided to go cycling in Limburg for two ddas, while Lieke takes care of me. Homely, and very comfortable.

The shed

This month was marked by the building of a new shed. No, not a chalet or a prefab cabin, but an original roofed shed we share with our neighbours. It’ll have to look exactly like our previous one, a 75-year-old one that had started to rot. But, like is the case with any kind of construction work, we ran into some delays. It’s fun to keep track of the progress, when everything is working as intended at least. I was deeply invested. “Maybe the window would look better in the middle.” “Could you paint the shed white and green?” After all, the garden is my domain. What should have take two weeks ended up taking a month, but the result was worth it. Beautiful.

The wallet

Floor witnessed a man tossing a wallet into the bushes. She pursued him on bike to remember exactly what he looked like. She followed him for a short while. On her way back home, she looked inside the wallet, but left it in the bushes. Only when we told her that there might still have been some important cards in the wallet, did she go back for it. And indeed, it contained a travel card. Lieke headed to the police station, armed with a description of the perpetrator and the stolen wallet. It turned out that the wallet had already been reported stolen. The following day, the wallet’s owner thanked Floor on the phone. But that wasn’t the end of it. On Tuesday evening, two policemen showed up on our doorstep in full uniform (firearms, batons and walkie talkies) to get a more detailed account from Floor. The six of us were seated at the table: the two officers, Floor and a friend, Hein and me, none of us wanting to miss the show. Floor was questioned for 45 minutes. One of the officers wrote everything down in a little pocketbook so he could put it in the computer in his office later. It turned out that the wallet had been taken from a school building. On Thursday they returned to get Floor’s signature, but she wasn’t home, so they returned about an hour later. We’re hoping that this is it and Floor won’t have to do any more identification. The moral of the story:

Always turn found wallets in to the police.
The police will follow up on it (not like they used to).
Don’t expect things to be extremely efficient.
In my small corner of the world, I would consider this a major event.

Sandra

For the past six months, Sandra has been my help three mornings a week. She’s settled in, and so have I for that matter. She’s a bit clumsy. The not long after I’d put on a fresh vest, she spilled tea on it. When she feeds me oatmeal or fruit, I can see it dripping from the table onto my clothes. When she’s vacuuming the floor, I hear the clanging of the vacuum bashing into the furniture. When I’m on the toilet and obviously indisposed, she asks questions. No matter. It’s all compensated for by a heart of gold and complete transparency. The constant glimpses into every facet of her life and her honesty are heartwarming. We always yap away. Me? Yapping? I’m completely attached to her, like I’m attached to Astrid. Astrid has been with me for two years now.

More help

Hein is having an easier time. In particular, we’ve restructured the afternoons. My mother cares for me on Monday- and Tuesday afternoons, when her health allows for it. My mother has been a bit under the weather after having major surgery. Wednesday afternoon is Sandra’s. Lieke is here on Thursdays and Lia, Hein’s mother, is here on Friday afternoons. They cook and feed me as well. On Saturdays, I always try to get someone go go on a walk with me, to give Hein some time to relax. My sister-in-law Netty has been that someone for the past three weeks. Other than that, Saturdays are fairly inconsistent. On Sundays, we usually do things with friends or family. I hope these arrangements do give Hein some respite.

Het bericht Diary September 2003 verscheen eerst op Living with ALS.

There was another bridge night. Lucy and Jan were there too. Lucy suffers from cancer and is going through chemo, so she was too tired to stay long and didn’t play either, so we talked for a bit before we started. Well, they talked. It was taking a while for us to start playing after Lucy and Jan left, so in the meantime I ate my daily portion of chocolate. Suddenly, I accidentally bit someone’s finger and my tooth came loose. I always panic in situations like that, so I called for Hein. There was still a bit of chocolate in my mouth that I couldn’t get down. Meanwhile, Hein had had enough and wanted to leave. Within five minutes I was sat in the van, leaving the rest behind in utter disbelief. Afterwards, they discussed ways they could offer us support (we’re not much of a support group, mind you). After five years of ALS this type of thing has almost become normal, but people do worry about me. There are ALS patients around whom huge rallies are organised by friends and family to raise support for their healthcare requirements and needs. I don’t like the sound of that and prefer to stay in charge, which I acknowledge may be a mistake. Either way, everyone is looking out for me, so an incident every now and then can’t hurt.

Toothless

I made a dentist’s appointment as early as possible, which was on Monday. Apparently, the damage was extensive, because the titanium screw had broken (something the dentist had deemed impossible), so it seemed that a bridge was my only option left. He wasn’t too happy about that, and neither was I. It would be an operation spanning several days. After a bit of convincing, I got the dentist to take the screw out. He did warn me that it would smell like something was burning, because he wouldn’t be using any water during my operation. It looked like fireworks, as bright sparks shot out of my mouth. But it did work. The new screw is thicker than the last one and I hope this one is actually unbreakable. Still, I’m scared to eat chocolate now.

I miss you

After bridge night, I received a veiled language-filled email from my friend Marjolein. I wrote a rather brusque letter back. It was her turn to take care of me the following Friday afternoon. We looked at each other, grinning a bit. It was all too obvious that we needed to have a serious talk. It didn’t take long to resolve our issues, but we continued talking about the ramifications of my illness. Suddenly, she said: “I miss you. I miss shooting the shit with you in the pub, chitchatting after fitness, the weekends spent hiking.” Those words broke me. The only way to live with this illness is to focus on faculties one has left. Missing those lost won’t solve anything, they’re a taboo. The sensation of “missing” is wrapped in a thick coat of denial. Her words were a gift. Days later, I would still burst into tears whenever I thought about them. Yeah, I miss doing those things too. I miss myself. Thank you, Marjolein.

Contact

Now that we’ve opened up the floodgates of forbidden feelings, I’ll talk about another thing I miss: physical contact. There is a photo (I’ll try to digitize it) of Hein, Floor and Ward, walking though a French village, holding each other tightly. Heartwarming, but it does make me envious. I would love to be someone to hang onto and hug with for the kids, but I’m not.

Lessons

There are those people who believe that everything in life has meaning. That every setback is a lesson. I’m anything but inquisitive. If I were, I would ask questions, explore topics and look for a consensus. No, I only made statements and voiced my opinion. It got so bad that, during a course where I was specifically told to ask questions and mediate, I gave up because something happened in my group about which I had a strong opinion. I felt the incredulous eyes of course director boring into my back “what the hell are you doing?”, but I couldn’t care less. I’m so much different now. I ask question upon question. How is … doing? Why? Would you? May I? I do nothing but ask questions. Views and opinions are too much effort. I’ve learned my lesson. God, can things go back to normal now?

Whining

I think if anyone should get to whine, it should be me. But I don’t. So, I would love to tell everyone who is physically and mentally sound and doing well: “Count your blessings.” Oh jeez, here I go putting opinions out there again.

Berlin

We visited Berlin for five days over autumn break. We slept in a hotel that wasn’t adjusted for handicapped people, but it did have a handicapped bathroom in the hall. Still, we knew that the rooms would be spacious and the food would be overcooked, perfect for pureeing. Still, going on holiday is an adventure every time. Will the beds be alright? Will the food be pureeable? Looking back, we were completely self-supporting. I slept in my wheelchair with no issues and the shower seat we had brought served just fine. While the hotel didn’t serve any big bowls of vegetables, they did serve me perfectly pureed food. It’s nice to know that there are myriad cities that have these kinds of hotels.

With Hein as our navigator, we saw a lot. Berlin is a beautiful city. The east-west division is barely noticeable anymore. I can’t believe that was only 14 years ago. Equally unbelievable is the fact that most of the historic buildings were only restored during the 60s. A new old city. The highlight of my trip was visiting the glass dome in the Reichstag. There was a special queue for disabled people, because of which we avoided about 1.5 hours of waiting. The dome offers some beautiful views of the city. The weather was fair and the trees were beautiful and multicoloured.
The kids had a good time too, which is always a fickle thing in cities because we like to visit museums, rarely a teenager’s favourite activity. The kids like the shopping the most, incidentally. The Kaufhaus des Westen had plenty of that.

My mother

When we got back, we got the news that my mother had taken a nasty tumble on the street. She broke her wrist and two ribs and was moved to a nursing home she didn’t like one bit.
I went to visit on Saturday and I can see why she didn’t like it. Is this what the future has in store for me? I hope not.

The chair

During daytime, I’m always seated in my adjustable desk chair. We’ve even started taking it with us on holidays, it’s just that good. Because of its intensive use, it’s been through a lot and often breaks. We usually get a repairman sent to our home. I’ve tried leasing another one as a replacement one time, but the headrest was different to such an extent that I couldn’t use it. My chair has been totally adjusted to my body.

The chair’s back wheel has been acting up for the past month. It turned out that repairing it at home would be impossible and it would have to go back to the manufacturer. I would be without chair for a week and I would have to manage in my wheelchair. And my typing is so slow when I’m in my wheelchair. Our holiday to Berlin would be the perfect time to have it repaired. After a week, it was back. On the Monday after our Berlin trip we got it back, gift-wrapped and all. We opened it up, tried it out and, of course, it was still faulty. The manufacturer was highly embarrassed. I’d have to live without it for another day, as the repairman personally saw to it that the wheel was fixed properly. This has been going on for a month. Lots of hard work to get me from place to place and our hardwood floor has scratches all over it, but at least it’s fixed now. We even got a bouquet of flowers to make up for our inconvenience.

Het bericht Diary October 2003 verscheen eerst op Living with ALS.