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.
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.
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.
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.
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.
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.
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.
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.
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.