Floor was pushed to her limit, what with her daily acting repetitions, having writing a book report, two impending quizzes and a sizeable history deficit. In short: time for a sick day. At 9 o’clock Floor came downstairs, pyjama clad. She didn’t change out of it that day. What she did do that day was work. Tests, reports and four history chapters on the three religions were all finished and prepared by the end of the day. I found it homely. I learnt a lot about religion and I’ll never confuse those new Eastern-European countries again.

Ward claims a part of the garden

Ward is a nature lover. At least, he loves the horticulture in our back garden. In previous years he was already allowed to pick some annuals; marigolds and tobacco plants in the colours of Ajax (his favourite football team). I’m afraid that such slim pickings won’t be enough for him this year. Ward has been preoccupied with a potato all winter. He put it in water until it rooted and eventually grew a bud. Now he wants to use a part of the garden. Grandpa Kees is going to remove the plants from a section of the garden. We’re going to build Ward a miniscule vegetable patch, 1 square metre. We want to plant a bit of everything: carrots, radishes, leeks, lettuce, etc., a tiny amount of each. I greatly enjoy doing this with Ward.

National ALS Day

This was my third ALS day. I was looking forward to it, especially meeting all of my ALS correspondents and the people who designed my book. However, I tend to forget my usual “wait-and-see” approach, so when I entered I immediately felt overwhelmed. Immediately after we had parked, we were greeted by a hostess who did not know when to back down. Even in the coatroom, she wanted to be helpful, but all she did was tugging on the back of my jacket. Because of the commotion, Hein forgot my preferred routines too, so the whole thing was a mess. We were stuck in a queue of wheelchairs, all of them headed to the lecture hall. We wanted to go to the break room, which was the other way. I was almost inadvertently taken to the lecture by my mother-in-law, but I was able to prevent it and I was allowed to go to the now vacant break room with Hein. After a bit of acclimatisation and a cup of chocolate milk, I was ready to go. I’ll be honest, the National ALS Day is hugely confrontational. Involuntarily, I started comparing; not just myself and others, but others and how they were one year ago. The emails I got afterwards told me that I wasn’t the only one who did.
The lecture turned out to be a large plea for official trial runs. Discussion about Maurits van Selms was abruptly ended. After the officious part of the conference, it was party time. Many familiar faces, lots of fun. Because I can’t shake hands, the hand of one of my fellow patients is put into my palm. We intimately sat there for minutes. Hein acted as my interpreter. My appreciation for the people who understand me grew immensely. Whenever I would talk to a fellow patient, I’d stare at them, unable to understand a thing. I’d quickly look around in search of a person willing to translate. Lo and behold, every single spouse interpreted their partner’s words to a T. It’s not the only way of doing it. I asked Jan van Atten a question and after spending some time behind his writing tablet, he turned it around having spelled out his answer. Don’t you dare interrupt his writing process. We’re still able to converse, however clumsily. I recognise myself in their strange laughter, the unintentional noises they make sometimes and odd grimaces. To the uninitiated we must look like a bunch of weird pathetic sods. Despite that, I enjoyed myself immensely and I noticed that everyone was very spirited. We didn’t leave until the end of the conference. At the end I didn’t feel tired but rather elated.

Toe-curling

Besides having trouble not finding my own state of being toe-curling sometimes, I do actually have toes that curl, much like my fingers. Everytime I put on my shoes in the morning, I have to make sure that my toes are decently straight when I push them into my shoe. My feet are also contractured, meaning I walk on my toes, followed by my heels. I can stand reasonably well with my modified shoes. Once a day, I walk from my bed to the bathroom. Sometimes, I accidentally stand on the top side of my toes. That’s not what toes are made for. In short: my toes have a lot to put up with. Especially my big toes. My right big toe has gotten infected, so I bathe it in a Epsom salt bath every night. I don’t mind a foot bath, but I hope my toe heals soon.

Procrastinator

I’m a procrastinator. I try to hold on to my old ways as long as possible and only when I can’t go on any longer do I quit. During my confrontation with other PALS, my procrastination became extra clear. They got a PEG as a precaution, got artificial respiration before having trouble breathing at night and had wheelchairs and machines more advanced than their own diseases. Not me. During the day, I use an ordinary desk chair (it is electrically adjustable, though), I have no communication equipment on my wheelchair, try to have as few aides as possible and have postponed respiratory equipment indefinitely. I’m not the only one, though. There are two kinds of ALS patients: the procrastinators and the anticipators.

Up to date

I’d been building up a backlog these past few months; more than 10 unanswered emails, not much progress on my diary, no inspiration for the kids’ newsletters. Now that I have a head mouse though, I’m up to date again. It’s a new sensation. I’m starting to take more initiative in writing emails, not just limiting myself to answering them. I’ve also started playing FreeCell again, useless as it may be. The thing is: I still have to write two letters, and I’m all out of excuses to postpone them.

NRC interview

We had a tense breakfast on Saturday. The mail had already been delivered, so the next thud on the doormat would have to be the newspaper. It got here at 12:30. We were surprised to see I had gotten a whole page, with a huge picture. Through the weeping, I smiled. At 13:00 I received my first email about the article, from one of the people who worked on my book. At 14:00, the first email from a stranger arrived. They must have booted up their PC as soon as they had read the paper. Right now it’s Monday, three days and 25 emails on. A quarter of them from friends, a quarter from strangers and half of them from ex-colleagues or old housemates from my college days. They were surprising and sweet. I got lots of compliments about the picture. Sometimes, I wonder: “why do I keep putting myself in the limelight?” Although every time I do, it does feel satisfying.

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

It’s been a busy week. On Wednesday I had a homeopathy appointment and on Thursday I attended ALS Day in Uden. Ineke, a fellow ALS patient from Leiden and her boyfriend carpooled with us, which was nice, despite the fact that I fell asleep in the car. Uden is not closeby; two and a half hours there and two hours back. All of that for an event lasting only four hours. We were late and had already missed a lecture. The good news: they’re building a national ALS centre, a central point for information about ALS. After that, it was a pleasant, laid-back day with only a light programme. We sat at a table, surrounded by familiar faces. I had my ever first reflex zone massage too. While I didn’t have my feet massaged, my hands did get treated. According to my masseuse I shed a lot of toxins. I’ll feel much better tomorrow. It was a love-filled day. People who knew me from my homepage came up to me and some of them hugged me. They politely asked if they could beforehand, mind you. I’ve learned to appreciate days like these.

The day after

The day after ALS Day was not pleasant. My head and stomach ached, I felt hot one moment and cold the other and I felt like I needed to vomit. I spent the entire day napping under a blanket. I didn’t eat anything and vomited once. Exasperated, I took some preemptive antibiotics. Maybe ALS Day had been more strenuous than I previously thought. Maybe I was just shedding toxins. Either way, I felt pretty damn awful. The following day I felt a lot better and I answered all of my email prompted by ALS Day, because we always write each other after one of these gatherings to exchange stories and experiences.

TV show

I’ve had a VHS tape of a TV programme about life with ALS for over 6 months, but I never had the courage to actually watch it. Two weeks before ALS day I received an email from Loes Claermont, one of the people featured in the TV show. I had corresponded with her before, but I didn’t put two and two together then. This year would be her first ALS day ever. She was warmly greeted, despite the fact that she was very upset about the things she saw and heard. Loes has a very slow-acting form of ALS. Meeting her made me curious and I watched the videotape. I cried a lot, but I also saw a lot of myself in her. I was touched by the other featured patient’s reflections on being curious about death and wondering if he could still be with them after passing away. I often wonder the very same thing.

Football

Saturday has become football day. Ward played with his team for the very first time today. He had been training with them since September. His team is comprised of a lot of his classmates. Floor played her second match today. And thus, slowly but surely, Saturday turned into a day of football. When the weather is fair and the match isn’t too early, we’ll come watch the match too. I wonder what they’re like on the field. I have never seen Floor play. Seeing as I used to play as well, I’m curious. We went to see Ward play on Saturday. He’s quite the acquisition, according to his teammates.

Traditional food

My childhood dinners were often just potatoes, greens and some meat. Student housing was a culinary revolution for me. No more hotchpotch. But with young kids, simple Dutch dinner has its advantages. Intricate dishes just lead to more pickiness and digging out unwanted ingredients. Just as the kids are learning to like more exotic cuisines, their mother has become wholly dependent on easily mashable food. In that regard, there is nothing better than vegetables and potatoes (meat is a bit trickier). Thus, we have a very traditional menu; beetroots on Monday, green beans on Tuesday, leek or spinach on Wednesday, spaghetti on Thursday, hotchpotch on Friday, the kids get to pick on Saturday and we eat takeaway on Sunday. It’s horribly predictable. Sometimes, we even willingly eat Brussels sprouts, until Floor got horrible stomach cramps for which she had to see a doctor, an intestinal colic. We’re hesitant about eating sprouts again. The kids don’t like this traditional cuisine. They’ll start to appreciate it once they grow older.

Teenage daughter

I had a row with Floor this morning. She wanted an allowance and I asked her why. She saw that as a provocation (turns out, she wanted money to buy a rose to give out on Valentine’s day and hoped I would finance it). It’s hard, only being able to speak if the other party is patient enough to listen. Good luck finding patience in an angry teenage daughter. She left for school, still upset. I hate that, but at least the fight is over. Actually, I’m left feeling angry. She’s quick to start yelling, something I don’t really have an answer to. Usually, we make up. We calmly talk about it. Sometimes, I write her an email. Still, it’s rough.

Holiday

On Friday we’ll be leaving for Tubbergen in Twente. Like every year, we’ll be accompanied by Hein’s family and hope for fair weather. We used to go skiing. Surprisingly, the kids don’t complain about that at all. In May, we’ll be visiting Westerbork with family friends. We made some half-hearted attempts to plan a holiday to England, but the country is not really suited for the disabled. In that regard, The Netherlands is still a frontrunner. This summer we’ll be going to Zeeland. We’ll stay a bit closer to home this year. The kids hate it. It’s the fact that they have to tell their friends “We’re going to Zeeland”. The camping ground has surfing and sailing, plenty of entertainment. It’s an image problem. Snobs.

Dexterity

One of my feet bends inward while the other goes outward. That’s why I have special shoes. They allow me to stand for over 5 minutes. Without my shoes, I’m helpless. They’re elongated on either side to prevent me rolling my ankle. I think my shoes are some of my most helpful tools. Thanks to them, I was able to keep walking and using the bathroom on my own. I noticed that nobody at the ALS Day wore them, while most of them probably have painful feet.
Another great invention is the contraceptive injection. No more fuss. After a small buildup, I only need the injection every 3 months. My GP treats me at home. I remember asking my neurologist about stopping menstruation, but he just scratched his head. Most neurologists are men. Luckily, one of my fellow female ALS patients put me onto it.
And then, of course, there’s the head mouse, a marvel of technology to the uninitiated. How could it be possible to guide the mouse with only your reflection? Currently, the two builders we hired to repair our roof are gazing at me in fascination, watching me work. Everytime someone comes to visit, I give them a demonstration. Mouths fall open in amazement. And indeed, it is a marvel. The world has become a lot more pleasant for ALS patients because of inventions like these.
Okay, I’ll also admit, last but not least, my standing patient lift is useful. I’ve gotten used to it and I’m very content with the ease and the speed with which it allows me to use the toilet.

Corrie online

My mother is improving. She doesn’t write long paragraphs anymore, now knowing that the return key skips a line, and the random capitalization has become less abundant after she found out what the CAPS key does. My previous entry gained me a number of responses. Liesbeth Koenen (a journalist and one of my readers) sent my mother a copy of her booklet Email Etiquette, a book for beginners, as a helping hand. Another reader wrote:

I liked reading about how your mother, too, has started using the computer instead of calling. My parents have also bought a used PC and are doing their utmost to learn, but they also run into some strange problems. The other day, my mother complained about the screen not turning on while the computer was running. When I came to look at it, it turned out they had forgotten to turn on the monitor. But I do like the fact that they’re trying to stay up-to-date.

And like that, many other parents are working hard to catch up to their kids.

What do you say after you said hello?

That was the title of a popular book for shy people: how do you keep a conversation going? A pertinent question, now that I’m only intelligible to a select few people. The answer is: you can’t really. Without an interpreter at my side, I’m helpless. Conversation is a one-way street. It’s something not many people are good at. People like a response. If Hein isn’t with me, I’m in for a world of awkwardness. People want to talk with me, but they can’t. After their first question to me, the convo ends. Eye contact becomes uncomfortable. That’s how it goes for the rest of the night. That’s why I like to avoid large crowds. Intimate contact is impossible, partly because of the noise. I concentrate on the card game. In smaller groups, I’m always terrified of my translator going to the kitchen to put the kettle on. There we are, awkwardness mounting. Luckily, my interpreter makes a swift return. I do admire people who are courageous enough to attempt talking to me.

And how are your toes?

They’re great, thanks! Because of the fluid retention in my leg I’ve started wearing a tube grip, a kind of stretchy bandage that keeps the fluids at bay. Because of that, my toes are less swollen, less prone to friction and have an easier time healing. In addition, my shoes aren’t as tight as before. In short, a welcome change.

Spring break

I feel more uncomfortable when I’m away from home. My routine is broken. I don’t sleep well, which is not an issue at home. I sleep my days away. The toilet is too far removed from the wall, making me slump like a sack of potatoes. We’re with a large group and I feel like a spectator, except for the time we spend playing games (we played a lot of Settlers of Catan). The family is helpful. I was stupid not to take my laptop with me, I would feel a lot more self-sufficient if I had. The weather was not cooperative; cold winds, rain, with a small amount of sunlight in between (when we got back home, the sky was blue again). Still, we saw a lot of the surrounding countryside. I especially enjoyed our visits to Ootmarsum and its galleries and Elsloo House. In Oldenzaal we visited what’s supposed to be the most modern shopping mall in The Netherlands (not) where I bought some new clothes. The windmills there looked straight out of a painting. If only the weather had been as kind to us.

Het bericht Diary February 2002 verscheen eerst op Living with ALS.