Diary February 2004



On Friday afternoon, we interviewed, or rather, met our new help. After some meditation, I decided to not hire her. Why? Granted, she was nice and very good at her job, but when she arrived she immediately touched my face and again when leaving. I don’t doubt she had good intentions, but I don’t appreciate behaviour like that one bit. It’s something nurses tend to do; mothering me to bits. I already have a mother, thank you very much. I want someone who sees me as their equal. I spend whole days with my carers, they’re not short visits. I need to be on the same wavelength as my carers. Besides, I use my PC a lot, so some knowledge of computers is a prerequisite. I panic when my computer crashes, especially when there isn’t an interpreter present. Am I just being too picky?

My neck

My neck muscles are deteriorating. Drinking tires me out, not because of the straw but because I can’t keep my head upright. Now I prefer to drink through my PEG. When I’m being fed, food often goes up my nose because my head lolls forward too much. My backrest reclines more and more every day to relieve my neck. Sleeping in my chair has become a chore, my head keeps lolling forward. That wouldn’t have been so bad before, but now it leads to such intense neck pain that it wakes me up at night. In the morning I’ll be sore and need a while before I can communicate again. This weekend was one of those times. I couldn’t get my head upright. And with a slumped head, talking is nigh impossible. Awkward. For the first time in a long time, I felt a sense of finality. Before, I felt comforted and self-sufficient from knowing that I could just sleep downstairs in my chair, but now that’s gone. By now, the new sleeping chair has arrived (which we had fast-tracked in August) but it has the same head support issues as the other chair. Maybe I should get an appliance that keeps my head upright. Bummer. Luckily, my bedrest is improving.


I finally got the inspiration to continue writing the musical, together with my co-writer, grade 6’s teacher. And boy, does he write. Whole pages of text flow from his pen. I think it’s a bit too verbal, not visual enough, not enough variety. It took some time for me to make my opinion clear. Not actually having a child in 6th grade does make things different.

Duty-bound, I’ve started editing the musical. Besides that, my sister-in-law offered to modernise my homepage, which means more revision for me, thinking about changes. In short: lots of interpersonal creative processes. The interpersonal part is important to me. It scratches an itch, even if it is just over email. Too bad the construction work is on a bit of a hiatus. The architect is taking his sweet time.


My carer Sandre is getting married on Friday. I think I was one of the first to know. She filled me in on every single thing about her wedding, which was a bit frustrating for an organiser like myself. Everything they planned was last minute. It’s weird, meeting your exact opposite. I got married for free on a dark Monday morning in December. We told our families a few days beforehand. Floor was coming up on four months. A huge contrast.

The four of us went to town hall. The kids had never experienced a wedding before. Sandra looked beautiful and obviously felt great. During the evening reception we had a hard time leaving. Sandra’s grandma, a tiny 85-year-old lady, cleared a path for us through the crowd. We’ve devised an emergency plan for Sandra’s honeymoon, Hein, Astrid and Lieke will fill in for her.

Spring break

It doesn’t bother me much that spring break is over. Ward is not much of a planner, spending hours at a time playing with his PlayStation. Fortunately he did undertake some things. Floor worked extra hours. She has a job as a stock girl at Albert Heijn. Too bad I haven’t seen her in action yet. Other than that, we watched a couple of movies together, an activity that fits the weather. We bought the newest season of Friends and laughed a lot.