The chickens have gotten bigger and definitely lost some of their charm. They still cheep instead of clucking and still haven’t grown crests. I expect we’ll set them free this weekend. We’ll have to see how they do in the wild. Other than that, we harvested 1.5 kg of tomatoes, 2 apples and enough potatoes for dinner. Not bad, considering we’re beginners.

On Thursday, the four of us went to the forest to look for a good place to release them. Someone told us not to deposit them at a petting zoo, because they’re territorial. There are lots of wild chickens. We put them next to the fence of the petting zoo, so Floor can check on them on her way to school. After throwing them some food and taking a few pictures, we left the chickens behind, like Hansel and Gretel. A rooster and a hen were already present, so let’s call them their adoptive parents. Floor spotted them the following days and they were thriving.

Dealing with carers

Dealing with carers is delicate business. Both parties have to feel at ease. It’s great when we hit it off, so I try to invest in that relationship. Carers are few and far between, so it’s important to let them know what you want. You can’t be frivolous with those relationships. By the way, I have more respect for people in healthcare by the day. People who deal with dinks like me. (Floor read along and told me: “you’re not a dink”.) It has a more positive effect on society than selling phones. Having friends and family as carers is a whole different story. You want to pick up where you left off, but of course that’s not possible. Family has it the hardest. Sometimes they have to face my anger. With Hein, I often debate whether I should ask him something now or wait for later, but often I feel like I’m asking too much of him.

Whining doesn’t help, creates a toxic environment and pushes people away. I’ve never been a nag, but I do get angry and impatient. Complaining in writing is foreign to me and doesn’t make for a great read. One has to think of their readers. That’s why I probably sketch my life as better than it actually is. That’s also a way of coping.

A happy person

My father-in-law was concerned during our holiday; was I doing alright? Now that he’s read my diary and seen the relaxed atmosphere at home, he’s reassured. He told me he’s surprised and amazed that I call myself a happy person. I dwelled on that for a long time. Why wouldn’t I be happy? Happiness is impossible, only when you don’t use your current situation as a given, but constantly question everything and refuse to accept your illness. That’s just the way it is. In my situation, I go through fun and less fun things. In my situation, I can still be a happy person.

Prayer

I received an email from Singapore from a Dutch woman who married a Pakistani man and converted to Islam. She sent a host of research papers proving that prayer does help; people who pray are more resistant, heal faster and people praying for you is also beneficial. She told me to ask people to pray for me. I know there are people who pray for me. I like that thought.

Asking people to pray for me, though, is something I don’t see myself doing. It’s taboo to me. In Islam it’s a part of everyday life. And even in America it’s run of the mill. That’s obvious after an attack like that. However, in the Netherlands it’s never really addressed.

Floor is worried

It started during our holiday. Floor felt strange tremors in her arms and legs every now and then. She completely panicked. I realised quickly that it was because of me. After all, I often have involuntary muscle contractions (fasciculations). Would being the child of an ALS patient lead to a lifetime of being scared to get the same disease? How do the parents have to deal with that fear. We told her that it’s not hereditary when ALS manifests this late in life. It didn’t help much, the panic didn’t subside. We asked the GP. “Probably growth symptoms, happens a lot”, he told her. I hope that helped. I’m afraid that she’ll never completely get over that fear. This morning, Ward told me about muscular twitches in his arm. Is it just growth? I don’t want to do this to my kids.

The doctor tested her reflexed and took a good look at her. She hasn’t mentioned it since.

A new carer

For the whole month of September, care went as per usual. Despite her imminent departure, Marje worked on every Tuesday of September. Inge took care of Mondays, but in October she’ll have class on Mondays. In the meantime, we’ve been looking for someone else. On Monday, our new help Astrid came by. We tried using the toilet. We still have to get used to and start trusting each other, she’s rather petite. I immediately liked her during her preliminary interview. I liked seeing her beforehand. It’s drastically different than the last carer, who simply showed up to work. All there is left to do now is learning to trust her in the bathroom and we’ll be in the clear.

Het bericht Diary September 2001 verscheen eerst op Living with ALS.

Miscommunication

Multiple people have told me that the piece about the PEG operation I put out last month was about me. It was not. It was written by a friend who was rapidly losing weight and dreading an esophageal PEG operation. I thought it would be informative for ALS patients, because the method described is a unique one. I’m sorry if it caused any confusion. I’ve had a PEG for a year and a half now, installed regularly with a tube through my throat.

Relaxed weekend

I didn’t do anything last weekend. The kids didn’t have plans, either. I can tell they enjoy doing nothing every once in a while. We wanted to go see Harry Potter on Sunday, but every row but the second was taken, which wouldn’t be easy on my neck. Surprisingly, the kids did want to go on a walk with me to the park. Lovely, a stroll in the winter cold, having some tea in the tea parlour on a dim winter’s day. The kids got along famously at first, playing catch. Then suddenly, something happened and they were fighting.

KPN

I have just received KPN’s Christmas hamper. I’ll be opening it with the kids soon. Cozy. Last year, we had the option to forego the hamper in favour of a donation to a charity for muscle disease. I didn’t. That’s bad, isn’t it? Well, it’s too late for my muscles. Moreover, opening gifts with the kids is too fun to pass up, even if the contents are usually disappointing. This will probably be my last Christmas box. I’ll be laid off on January 1st, 2002. They didn’t want to fire me, despite me being on disability welfare for three years. I’m still very connected to KPN. The fact that employees were willing to take a pay cut to save jobs makes me proud. The commotion surrounding KPN’s executive severance packages, however, is appalling. Anyway, many former colleagues of mine have already left KPN. By now, the kids are home. The hamper didn’t disappoint. It’s just wine, chocolate, tea, biscuits, tea lights, a tray and a bag of sweets for the kids. Nothing fancy, exactly as it should be.

Quizzing

While being orally quizzed by me is no longer possible, I still try to lend a hand. I make quizzes on the computer for the subjects that lend themselves to that format, which we go through together. History is my favourite. I once considered getting a History degree. Quizzing languages is a slow process for me. It’s a task better suited for Hein and the grandmas. It’s surprising how much the grandmothers still know from back when, and how much joy they find in showing off. My mother is an especially bad case. When we were quizzing Floor on her French verbs, she constantly wanted to give the answers. Other grandma started spouting French accusatives and ablatives.

My involvement does sometimes lead to conflict. Maybe I meddle too much during Floor’s exam weeks. It’s in my nature. The fact that I don’t have much to do makes me more controlling too. On top of that, Floor isn’t very patient or overly diligent. She’s satisfied very quickly.

Upstairs

Because of the PC problems that were caused in part by the kids’ internet usage, we decided to gift them a computer for Sinterklaas. It’s upstairs in the study, along with the second TV and the Nintendo. The study is looking more and more like a second living room. I don’t like it when they’re upstairs all the time. On the other hand, I don’t get interrupted as much when I’m on my computer. But when I compare the pros and cons, it’s obvious that the cons weigh on me more.

Children’s neurologist

Floor has been suffering from involuntary muscle spasms (=fasciculations, a possible symptom of ALS). One weekend the panic really got to her, so we went to see a doctor. It didn’t help. The fellow’s answers to Floor’s questions were interspersed by long silences, leading Floor to conclude that there was actually something wrong with her. She was freaked out, despite the doctor’s claims that everything was fine. Nonverbal communication is a powerful tool. I know that Floor is very sensitive about this subject. The GP once asked if she still had spasms. Floor immediately took it as a sign that there was something wrong with her. To nip further panic in the bud, we went to see a specialist. Yesterday, Floor met with a children’s neurologist. It was a lady, to Floor’s relief. She conducted some tests. Everything was alright and she saw no reason to investigate further. She jokingly said that Floor is just a shaky girl and she’s just more cautious because of my condition. Floor is relieved again. I hope those fears are gone. Forever would be great, but I won’t fool myself with that illusion.

Indian food

For his birthday, Hein got a very special present from his Indian friend Lucy: Indian dinner, made by her. Yesterday was the day. Loaded with little pots and pans, partially prepared dishes and chopped vegetables, Lucy and her boyfriend Jan took over our kitchen. Apart from setting the table, Hein didn’t have to do a thing. And Lucy was well-prepared, so it didn’t take long until we were ready to dine. It was delicious. Even Ward, a picky eater, liked it. Sorry if I misspelled anything; Rendang, Gado-Gado, Ork Ark and Atjar were the names of the dishes. Finally, she made nasi for tomorrow. It was a night to remember.

The tree

It’s been a noticeable trend this year; putting a lot of Christmas decorations up outside the house. I’m a sucker for it. It’s my inner child. Our neighbours who moved to China got a potted Christmas tree in the mail. While we already had one, we nicked theirs anyway, for in the garden. It’s pretty, if a bit bare. That’s why I insisted on buying fake red apples. They’re pretty. And when my mother-in-law Lia told me she had a 9 metre long rope light, I was enthused. A string of brilliant lights would beautifully accentuate the coutures of our romantic shed and rosebush and only heighten our Christmas spirit. When the lights got here though, Hein protested. How could I want something so tacky in our garden. I guess he’s right. Our alternative is buying a lot of small lights to dress up our bare Christmas tree. On the holiday evenings we spend at home I suggested we light a torch. And like that, we’re participants of the exterior decoration trend. Of course, we have a wreath on the front door. It matches the neighbourhood. Meanwhile, the kids argue about who gets to have the rope light in their room. What do you mean, tacky?

Christmas letter

This year, I didn’t feel up to it; writing a Christmas letter. During previous years I had a lot to talk about: the diagnosis, drumming up publicity for my homepage, and last year I had my book. But I already write so much and I’m bound to just repeat myself in the letter. However, breaking a tradition is a big deal. I’m a bit superstitious and the Christmas letter feels like a good luck charm, and I’m still here. But I’ve put my foot down. No Christmas letter this year.

Yes or no

I’m slow. Shaking my head isn’t a big deal, I roll my head left to right. Giving an affirmative answer is much harder. I have to lift my head off of my headrest and move it up and down. It’s doable, but it takes its sweet time. Usually, the person who asked a question will have already asked another one. This world is a hasty one. With Ward and Floor, shutting both of my eyes means yes. But even they are sometimes unsure if I really mean yes. Blowing my nose can also take a while, because I need my time to forcefully breathe out. Usually, the handkerchief is already gone when I need it most. I’m slow.

Musts

By now, I’ve seen a lot more ‘must-see movies’; the Discovery of Heaven, Nynke (amazing) and on Sunday we finally went to see Harry Potter with family and friends (fantastic, so atmospheric). Now I just need to see Miss Minoes and I’m still hesitant to go see Lord of the Rings. I did love the books.

Christmas 2001

On Christmas Eve, we played Trivial Pursuit with friends. We’re always in teams, it’s more social and allows the kids to participate. On Christmas Day we did gourmet cooking with my brother. It’s obviously not my thing. We started too late, meaning I was starving. And no, I can’t eat any of the meat. I ate salmon and a lot of garlic sauce, plus a pile of fruit salad. We did have tiramisu for dessert, with homemade whipped cream. Lovely and very filling. My, am I glad I can still eat that. On Boxing Day, we had almost all of my in-laws over. Everyone had prepared a course, so we didn’t have to prepare too much. We focused on setting Christmas-y table: white tablecloth with red beaus, decorations and lots of candles. A beautiful sight and the kids were glad to assist. Our nephew was most impressed with our nativity scene. This time I just had mashed potatoes with veggies and a cranberry port sauce, very well-suited for me. Only both nights dragged on a bit too long for me. Now for some well-earned rest.

New Year’s Eve

The days leading up to it were quiet. Doing some grocery shopping, going for a stroll one time, sleeping in and sitting inside a lot. On the day before, Ward spent the whole day setting off fireworks. He’s got a taste for it now. I don’t know if that’s good, but I know I was obsessed with fireworks back in the day. We spent the evening with friends. It was a late one. We went to bed at 3:30. We played Trivial Pursuit again, Freek watched and set off fireworks for an hour. I kept my composure this year, I didn’t shed nearly as many tears. As opposed to previous years, Floor asked me if I wanted to cry again at 12 o’clock. It has become a sort of ritual, after all, and has lost its shock value. How things have changed. Of course, I happily obliged her wishes.

Eurodisney

Infected by their atmospheric Christmas commercials, we got the idea to go to Eurodisney for two days (one night) just after New Year’s. The weather during the week before Christmas was abysmal. Imagine getting stuck in the snow on our way; not much joy to be had in a snowed-in car. Apparently, Eurodisney is very gracious to the terminally ill; I get to cut in line. Anyway, we left on January 2nd, a wintery day. We’re always too optimistic about our travel times, we arrived at 4 o’clock. Our hotel, Santa Fé, had a Mexican artstyle: terracotta layering interspersed by cacti. After some difficulties regarding a badly booked invalid room, we went on our merry way. The atmosphere was magical. Walking in the dark, alongside the supposed Rio Grande, all of the beautifully lit hotels, a skating rink in front of Hotel New York, Disney Village (so American), Mainstreet (beautifully illuminated), and fireworks around the castle of Fantasyland. But boy was it cold. It was like we were on a skiing holiday. Everyone plundered their closets to stay warm: many different hats, gloves, skiing jackets, winter shoes. We, on the other hand, were woefully prepared. Floor had small ankle socks, Lieke only had one glove and Tim didn’t have any at all. The next day, we were in the park at 11, despite getting up at 7 and having breakfast at 8. I’m responsible for the time loss. Not many attractions are accessible for someone who can’t get out of their wheelchair. I was there, more so for the nostalgic atmosphere, we had been enchanted 6 years prior. The only advantage of me being ‘different’? Indeed, at the McDonald’s, we we got to cut through the crowd to a reserved table, I got priority seating during the parade and I was kissed and patted by Donald Duck and Goofy (to the great envy of some). But on the second day, I felt more like a burden, not being able to go on rides but still needing to be taken care of. And boy, was it cold. It took hours before the car had a liveable temperature. The journey home was smooth. On both trips I sat in the back of our van without it feeling like a rollercoaster.

2001

The end of the year does call for some sort of conclusion. Personally, the NRC interview was the highlight of the year. Especially people’s reactions to it were heartwarming. I think it was a good experience for the whole family.

Furthermore, I’m thankful to be living such a relatively normal life. The person who makes that possible is Hein. Every day, he gets me in and out of bed and he has for three years, with me only becoming more and more dependent. And always helping me use the bathroom and feeding me. Activities that require both time and diligence. And I’m not always easy to deal with. I’d like to see anyone else try it. I’m so glad he’s there for me. Floor and Ward contribute to my everyday life too, mostly by just being there.
After living with ALS for a few years now, some everyday activities have turned into rituals. I go to movies with Marjolein, once every three weeks I play bridge with friends, my friend group and I play bridge on birthdays, Sundays are for days out with friends, holidays with family and friends, going on walks with my brother Anton, Kees works in the garden and going to the theatre with the kids sometimes. Care has also been routinized. My friends and family help there, too: Marjolein and Tineke have alternated on fridays for three years, my mother, my mother-in-law, Lieke and neighbour Lisette. Inge has been with us for almost three years now. She’s always there for us. This summer break, she has been my tower of strength.

My physical social life has gotten smaller. Apart from friends, we don’t see many people. The concept of acquaintances is almost foreign to me because of my illness. By contrast, I’ve built up a huge virtual network; old acquaintances who mail me, but new people too, friends I’ve made through my homepage. Despite that, I do miss normal physical social interaction, small talk. I count people who are going through the same thing as me towards my friends, too. Sadly, some of them passed away this year.

Enough contemplation and reflection for now.
I wish you all a love-filled 2002.

Het bericht Diary December 2001 verscheen eerst op Living with ALS.

The toll of wearing a vest

A moment ago, I received an email from a fellow ALS patient. She wrote about the conflict between her and her husband when it comes to putting clothes on. She feels like she should be able to dictate the tempo and the order of clothing in which he dresses her. Her husband doesn’t and thinks she shouldn’t complain and should just be thankful, always quickly retracting the latter. That’s my own situation in a nutshell. Although we’ve made a lot of concessions over the years and our arguments aren’t as fiery anymore (their incident I feel is more of a rookie mistake), our conflict is rooted in the same age-old question: who’s in charge?

While my minimal demands are always met (I want my head held upright and my arms to be crossed on my lap whenever I’m changing), there is a certain aspect of getting dressed I want absolute control over: picking which vest I want to put on. All of my clothes are very run-of-the-mill except for my vests, the only clothing articles I have a hand in buying. It’s my autonomy and personality, all boiled down into a piece of fabric.

Usually, Hein heeds my vest preferences, but today he turned up with my brown vest. I hate that thing, it’s too thick, the opposite of colourful (I hate the colour brown, honestly) and the only vest I didn’t buy myself. I asked for a different vest, some of my favourites were just hanging in my closet, but for some reason that really rubbed Hein the wrong way. He’d had enough and put the brown vest on me. I protested furiously and loudly voiced my opinions downstairs until Ward fetched my pink vest and Floor helped me put it on. Not a good note to start a day on. Everyone was miffed.

I was still fuming. Imagine me telling someone else what to wear, the arguments it would cause. Why shouldn’t I be allowed to pick my outfit? However, after three hours I took a good look at the situation. All of this fuss over a stupid vest. Who cares. But the question still gnawed at me: do I have any autonomy left?

I asked my carer to put the brown vest in a deep corner of my closet so nobody would be able to find it.

When Hein read this part of my diary, it turned out that he wasn’t aware how much I hate that vest. “Why don’t we just throw it out?” he commented, down-to-earth as ever. That’s a good one. Why not?

Personnel management

I’m in charge of a kind of company, let’s call it Carer Corp. My company is in charge of my personal care, cleaning my house, doing grocery shopping, preparing my food, doing garden work and running errands for me. I have five employees who I have to provide with enough work and motivation all while solving potential scheduling problems. One of them is good with PCs and likes to read, another has green thumbs and yet another is a great conversationalist. Our garden is almost ready for winter and our front yard has gotten the same treatment last week at the hands of one of my carers. Besides that, I’ve been reading ‘De eeuw van mijn vader’ [‘My father’s century’, a book about Dutch history in the 1900s. -Ed.]. I’m particularly interested in the parts about the author’s family’s experiences in the Dutch East Indies during World War Two. I’m so happy with me rekindled love for reading. I actually owe that to my carer who loves to read. One of my other carers couldn’t care less about books, so I let her do the gardening.

I had a problem with one of my employees this week. One of my domestic helps didn’t clean thoroughly enough and wasn’t very self-sufficient. She was nice, but I would be doing myself a disservice if I stayed quiet. We decided to part ways and, through her employer, we found a replacement. There’s a bigger market for domestic helps than for carers. Luckily, Roeline had been itching to work more so I would have more than four days to find a replacement. Other than that, Carlien will be working less, so I’ll have to find a new employee before November 1st. And like that, we truck on, working hard to keep Carer Corp. running.

Hannie Lederhof

Today we got a call from Mike, notifying us of Hannie’s passing. She’d slipped off the stair lift and broken her hip. The subsequent operation had been successful, but her breathing stopped. Hannie and I corresponded for over four years and they were emails full of humor, cheek and holiday plans.

We went on a few walks together. We were a sight to behold; two women screeching in an unknown language, pushed along by their husbands, not a care in the world. She was at my birthday party. The last time we saw her was at the gardening convention in Noordwijk, completely covered in plants she’d bought.

The football match

We spent a lot of Saturdays watching Ward play football this month. Usually we arrive just after halftime. Ward always wears a black shirt with red streaks. This time, we couldn’t find him anywhere. Or could we? Number 12 looked a lot like Ward. Wait. No, that’s not him. What I did find strange was how often I heard the opposition, who played in blue shirts, call out Ward’s name. Odd, his name isn’t too common. And there were so many vaguely familiar faces in the blue team. It was just starting to dawn on me when the match ended. When we got home, my suspicions were confirmed, as Ward got back home wearing a blue shirt. He’d been on the blue team that whole time, we just hadn’t spotted him.

TV

On the evening of Monday, September 12th, the TV programme Network aired a symposium organised by the Belgian ALS Liga, featuring the person behind the controversial Chinese stem cell treatment, Dr. Huang. We couldn’t understand anything he was saying but at least he looked like a nice fellow. The panel of ALS experts pulled no punches as they condemned the treatment. During the show, Loes (who looked great) said with determination that she would go to China for a second round of treatment in October/November. I admire her steadfast conviction. Once again, I’m in doubt, which is hitting harder than usual. At least ALS is back in the public consciousness once more.

Statistics

My website attracts around 1100 visitors a month, including 600 new faces and 500 people who check in every month. It’s fun to see what kinds of things people use the search bar for. Some key words are logical, like “Amyotrophic Lateral Sclerosis”, “Rilutek” and “fasciculations”, while others are a complete mystery to me, like “intestinal colic”, “tiramisu recipes” and a particularly strange one: “Going wild on poker night”. Going wild? I wouldn’t know how.

Closed forum

Ardi Bouter’s forum has been shut down. People were being too hostile to one another, so Ardi’s family decided to close it. I used to visit it about twice a day. It was becoming more tight-knit and the amount of swearing was decreasing steadily. I feel abandoned and so do many others. There goes another daily ritual.

Friend

Floor has a boyfriend, Roel. They’re having a lot of fun, but I do feel it’s detrimental to our evenings watching TV together. Apart from her not being home as much, it also means that there’s a new third party during the evening she does decide to watch TV with me. I’ve got to say, it’s kind of distracting to have them kissing next to me on the couch while we’re watching TV. Despite Floor’s protests, I know she’s not paying attention to the programme half the time. I still feel blessed though. Of course, they could choose to spend their time upstairs and leave me alone and I’d completely understand. I’m not some bog-standard mother-in-law, after all. Luckily, Ward is spending less and less time on his PlayStation and more time with me.

Fasciculations

I don’t suffer from severe fasciculations, but for the past week my left eye has been twitchy. Besides the annoyance factor, it impedes my vision a lot. I hope it’ll stay open.

Het bericht Diary September 2005 verscheen eerst op Living with ALS.