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\u2019t 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\u2019s 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: \u201cNot yet!\u201d Gisele, a friend, understood me at once, while her husband agreed with Hein\u2019s pragmatic approach, not knowing what I was worried about. We felt connected. <\/p>\n
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\u2019s 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\u2019t exactly alleviate our concerns. A boy had put \u201cgetting drunk\u201d 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\u2019s not too uncommon in exchange programmes. Inge told us about French students smoking weed and German students getting tongue piercings in Amsterdam. <\/p>\n
We booked an early winter holiday to Austria. Landal is opening a new park there, including new wheelchair accessible housing. I\u2019m looking forward to getting into the winter holiday spirit again and sitting on a terrace. <\/p>\n
We celebrated a bit prematurely. It turns out that our booking had been overwritten. Besides, they didn\u2019t have a clue about the accessibility of the cottages. The park won\u2019t be ready until November. It\u2019s a shame. Right now, we\u2019re looking for other options, because the kids were so enthused. The last time we went skiing was 5 years ago. The kids weren\u2019t bad at it. Finding a suitable replacement destination is going to be difficult. \\<\/p>\n
We may have found an alternative; a Rolli hotel with a brochure full of people in wheelchairs. It\u2019s surrounded by mountains and close to a small skiing range. It advertises wheelchair hiking trails from 3 to 30 kilometres. <\/p>\n
September 1st marks Inge\u2019s 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\u2019s 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\u2019s only in December and besides, the expects she\u2019ll still have time for me after that. But still. Inge has become part of our lives. She\u2019s one of my best interpreters, she\u2019s always there for me and we have rituals only we share. I\u2019ll miss her, but I do with her all the best at her new job. <\/p>\n
Because weighing me is impossible, I often wonder whether I\u2019m losing weight. I\u2019m 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\u2019m not losing weight. Hein couldn\u2019t button up my shorts. <\/p>\n
I\u2019m wondering if I should continue publishing my monthly diary. They\u2019re 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\u2019m settled into the situation I\u2019m 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\u2019m still unsure. But, like my doctor said, \u201cnever change a winning routine\u201d. <\/p>\n
\u201cYou are just radiating power [She used the word \u201cpower\u201d in a Dutch sentence. -Ed.] (a real \u201cpower bitch\u201d, according to one of Marjolein\u2019s colleagues),\u201d 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\u2019s a good personality trait. I don\u2019t like it. I hate using English words. \u201cYou\u2019re just radiating \u201ckracht\u201d [Dutch for power. -Ed.]\u201d would have sounded way more pleasant. I hate how the word \u201ckids\u201d has been inducted into the Dutch lexicon. \u201cHoe gaat het met de kids?\u201d [\u201cHow are the kids?\u201d -Ed.] Awful.<\/p>\n
Summer is obviously over. I used to sit in the garden every day, by now I haven\u2019t left the house in a week. <\/p>\n
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\u2019m a tad jealous. I\u2019m too preoccupied with the real world, so mundane. I guell I\u2019ll take comfort in the thought that everyone has their own purpose on this earth. <\/p>\n","protected":false},"excerpt":{"rendered":"
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\u2019t wrap his head around that, only seeing the practical side of things. But … <\/p>\n