Diary May 2005


The portraits

Today we had an appointment with the artist who would be painting the kids’ portraits. She talked to Floor and Ward and took a bunch of reference pictures. More of her artwork can be found on her website. Now all we can do is wait. They’ll be done in late June.


May wasn’t a great month for me. As the weather improved, people went on trips and played outside while I was homestuck. My world has been reduced to the living room and sometimes the garden. I used to see my home as a castle, but these days it’s become more of a prison. Aside from a few sporadic bridge competitions and visits to the playhouse, my whole life is spent among these four walls and the small area surrounding it. I don’t get cabin fever during the winter, but now that the sun is back, I just feel forlorn. My existence is horribly predictable. My days are structured, from my carer schedule to my evening activities and even my dinner. Of course, I’m to blame because I don’t like change. Because of my inability to talk and my total dependence on others, I’ve organised my life to such a degree that surprises have become a thing of the past. Change stresses me out, be it a new chair or a new PC. My urge to try new things has never been this small. I didn’t use to be like this. I’ve never been one to be adventurous and even back then, I used to like structure, but at least I still had the drive to initiate and deal with change. We always had something planned in the weekends. There’s not much left of my old life. And sometimes I allow myself a little self-pity, knowing it’s of no help to anyone. I feel it nonetheless.


I like being touched, which makes my inability to move my arms that much more unpleasant. Twice a week, my physical therapist relieves tension in my legs, arms and neck. Sometimes even a neck massage. I love it. But even cleaning my ears or combing my hair feel nice. Whenever my head itches, Floor or Ward scratch it with a brush, which feels amazing. Floor bought a scalp massager in Barcelona, which felt unexpectedly great. I used to play with my hair a lot. I’d almost forgotten about that until it was brought up at my 50th birthday party. I can’t even remember how that feels anymore. These days, I’m mostly touched out of necessity. I don’t mind that at all. In fact, I like it, because nonfunctional touching always makes me feel a bit uncomfortable. I should just come up with some more functional reasons for touching.

Ardi Bouter

Ardi Bouter died. Should I write about it? It’s a thought I’ve had more than once this month. His passing wasn’t unexpected, he’d been on life support for 24 hours a day. He’s undoubtedly done a lot to get ALS in the public eye. He was an earnest person, no doubt about that. He said he wouldn’t advise anyone to get treated in China, but he did go himself. Because of that, people paid to get on a shortlist for treatment that already stretches until 2007. I’m sad that he didn’t do more to distance himself from the whole China thing. Of course, he was free to feel glad about getting treated. After all, he was the first person to do so. But of course, doesn’t his death mean that treatment in China doesn’t work. Wouldn’t it have been common courtesy to warn others about that?

Eight years of ALS, seven years of knowing and five years with a PEG

May was the month in which I got the ALS diagnosis and the month I got my PEG. My ALS itself manifested in March of 1997. That’s eight years ago. Back then, I wrote that I just wanted to see my kids grow up, nothing more, nothing less. That wish is coming along nicely, on both fronts. Being there for my kids while they’re growing up is my biggest source of motivation.


And boom, suddenly it’s sweltering. I first noticed it when I started having trouble sleeping. I decided to start sleeping downstairs again. We’ll have to get an AC unit so I can sleep properly again. I couldn’t get myself to do anything on Friday, the hottest day thus far. However, the next day the heat dissipated and I would go as far as calling Saturday night chilly, with a nice breeze. I hope that’s the last we’ll see of the heat this year.

The boat trip

I was still owed a birthday present; a 25-person boat trip on the river Vecht. I wasn’t looking forward to it that much. I don’t like large groups because I have difficulty being part of larger conversations, a situation I put so much effort into avoiding during my birthday party. And I’d already been spoiled enough, what with the video, the mixtape and my own song. They’d put so much effort into it. To tell you the truth, I felt like I’d had my fair share of birthday surprises. I talked to Hein about it, but he told me that this cruise was more about being there than about talking. After all, the organizer assured me that there was a spot reserved for me on deck.
Yesterday was cruise day. It went wrong from the moment I boarded. I couldn’t actually be on the front deck and the railing on the back deck was too tall for me to see anything. Thus, I was asked to go below deck. The windows couldn’t be opened. And thus, spent a day on the water while being unable to see it, hear it, smell it, behind a window. No wind in my hair and face, no nice view. I don’t think anyone knew just how much it bothered me.
I know my friends were trying, most of all the organizer. I was never alone. But this is just not my thing. I’m sorry. Am I allowed to write that?


The month of May had a bad beginning, middle and ending. In short, a month to forget about as quickly as possible. Tomorrow, the proposal for a European constitution will be decimated in the polls. We’ve been discussing it a lot back home. I’m in favour. I think voting against it is very close minded, nationalistic and isolationist. How can the twenty-five of us work together if everyone retains the right to veto?