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.
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.
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.
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.
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.
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.
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.
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?
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.
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.
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.
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.
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.