Dignity
I often feel undignified. Using a bib, food in and around my mouth, lifting up my t-shirt in order to drink through my PEG and dropping my trousers for a contraceptive injection. The briefer these moments are, the better. Hein can’t wrap his head around that, only seeing the practical side of things. But my goodness, do I feel unhappy while wearing a bib or lifting up my shirt. I know that dignity is mental, but sometimes I have trouble remembering that. Thus, I often ask the people around me for help. Women are better at sensing it than men. Yesterday we left a party. Whenever it’s not too cold, I put on a blanket. Of course, it has to be removed and stowed out of sight before I arrive and it has to be the last thing I put on before I leave. Yesterday, Hein pulled the blanket out in full view of everyone and, of course, I yelled out the age-old: “Not yet!” Gisele, a friend, understood me at once, while her husband agreed with Hein’s pragmatic approach, not knowing what I was worried about. We felt connected.
Denmark
Floor will be going to Denmark in late September on a student exchange with a Danish high school. Yesterday she got the news that she was the only girl who was matched with a boy, a boy who only listens to hardrock. Floor is already dreading it. His portrait is on our corkboard; upside down. It’s really too bad, it would have been a unique opportunity to experience Danish life. In April the Danes will be coming to the Netherlands and the boy will be staying with us. The preparatory parent-teacher conference didn’t exactly alleviate our concerns. A boy had put “getting drunk” as his hobby and had been taken from the program immediately. Apparently, two years ago the exchange programme had had an incident involving a bunch of drunk Danes in the Netherlands. That’s not too uncommon in exchange programmes. Inge told us about French students smoking weed and German students getting tongue piercings in Amsterdam.
Winter sports
We booked an early winter holiday to Austria. Landal is opening a new park there, including new wheelchair accessible housing. I’m looking forward to getting into the winter holiday spirit again and sitting on a terrace.
We celebrated a bit prematurely. It turns out that our booking had been overwritten. Besides, they didn’t have a clue about the accessibility of the cottages. The park won’t be ready until November. It’s a shame. Right now, we’re looking for other options, because the kids were so enthused. The last time we went skiing was 5 years ago. The kids weren’t bad at it. Finding a suitable replacement destination is going to be difficult. \
We may have found an alternative; a Rolli hotel with a brochure full of people in wheelchairs. It’s surrounded by mountains and close to a small skiing range. It advertises wheelchair hiking trails from 3 to 30 kilometres.
Inge
September 1st marks Inge’s 3.5 years of working as my most trusted caretaker. She used to work for 6 hours a week, by now she does 11. During holidays she often works overtime to fill in for Astrid, my other carer. Fortunately, Inge decided to study law as well as French, meaning she was able to stay with me for longer. By now, the end is near. She submitted her thesis this week. All that’s left to do now is spell checking, designing a cover before she gets her degree and starts looking for work. She has already booked a holiday to India. Oh well, that’s only in December and besides, the expects she’ll still have time for me after that. But still. Inge has become part of our lives. She’s one of my best interpreters, she’s always there for me and we have rituals only we share. I’ll miss her, but I do with her all the best at her new job.
Losing weight
Because weighing me is impossible, I often wonder whether I’m losing weight. I’m currently doing anything not to lose weight. I eat my sandwiches with big dollops of butter and, besides my normal meals, I eat heaps of chocolate and butter cakes. This summer I finally got proof that I’m not losing weight. Hein couldn’t button up my shorts.
Hesitant
I’m wondering if I should continue publishing my monthly diary. They’re becoming more repetitive by the month. How many times can I write about my life in and around my house? By now, new insights are rare. I guess that means I’m settled into the situation I’m in. On the other hand, keeping a diary does give me a goal in life and, of course, pleasure and a lot of correspondence. I’m still unsure. But, like my doctor said, “never change a winning routine”.
Power bitch
“You are just radiating power [She used the word “power” in a Dutch sentence. -Ed.] (a real “power bitch”, according to one of Marjolein’s colleagues),” a few people told me at a party. Am I supposed to be glad to be a power bitch? Marjolein told me I should wear it as a badge of honour. Supposedly, it’s a good personality trait. I don’t like it. I hate using English words. “You’re just radiating “kracht” [Dutch for power. -Ed.]” would have sounded way more pleasant. I hate how the word “kids” has been inducted into the Dutch lexicon. “Hoe gaat het met de kids?” [“How are the kids?” -Ed.] Awful.
Summer is over
Summer is obviously over. I used to sit in the garden every day, by now I haven’t left the house in a week.
Spiritual
We just got an invitation from Vincent Straatman (founder of Valscherm, an ALS charity) to his baptism. I know one other ALS patient who had an adult baptism and had his marriage officiated in a church after the fact. Both of them walk(ed) a more spiritual path following their diagnosis, the inner path. I’m a tad jealous. I’m too preoccupied with the real world, so mundane. I guell I’ll take comfort in the thought that everyone has their own purpose on this earth.