Diary April 2005


The birthday party

It was amazing. The party was tailor made for me. A limited amount of people. A video, made by friends and family called ‘About Jeanet’, a song, a speech by my mother and brother, a small oration by former colleagues, a homage to Hein, a Russian song sang by Jan, lots of presents and a lot of karaoke. The latter was a huge relief. You’re not on the stage singing on your own. Everyone else was singing alone. I didn’t go to sleep until 3:30. It was unforgettable. Thanks, everyone.



And that was it. Days of fond memories, after-party conversations and emails, thank-you letters and being really tired. I’m done. No more parties, if just for a short while. All of the flowers have been thrown out already. Over. But what now? I’m having some difficulty adjusting to normal life again. I’m back to sending functional emails. I need to figure out my shoes, computer and shower seat; I’m back in action, but I’m not sure I want to be. Another day of nausea and vomiting. And to top it all off, one of my stumpy teeth got infected. I’ve got the after-party blues.

Dust mite allergy

On Saturday evening, after playing bridge, we were met by a coughing sniffly Ward. Within 30 minutes, his eyes were completely shut because of his swollen eyelids. Obviously a severe allergic reaction. We’ve suspected he’s allergic to dust mites for a while. Our GP conducted the test that confirmed our suspicions, as well as hay fever, specifically to birch pollen. There’s a beautiful birch tree only 10 metres from his bedroom window, which probably caused his nighttime allergy attack. Ward won’t be sleeping in his old room for a while. We’ll be switching his with the playroom and giving both of them a thorough cleaning. I’m looking forward to it, a new project! I’m good at throwing things out and I’ll know what’s going on in the rest of the house for once.


Since I can remember, I’ve assigned every day with a colour. In my mind, of course, because days aren’t coloured in the real world. I’ve always thought I was the only one and I never discussed it with anyone else. Until, on Sunday, Ward spotted a colourful schematic of the week and exclaimed: “I give my days colours too.” Enthused, I yelled “So do I!” Ward’s Sundays are bright, mine are white. But we both agreed that Saturdays are yellow. We couldn’t stop laughing about it. Floor and Hein looked on, clueless. They don’t make associations like that. For fifty years, I’ve thought that I was the only one who had coloured days*. We were so glad to know we aren’t.

Five is a crowd

On Sunday we had some neighbours over. We were in the garden, talking about our corresponding house renovations. I loved it. With the four of us, Hein included, I felt very involved. Hein transcribed what I said and people actually talked to me. I felt the same during our yearly Easter hike and our day on the beach. The same goes for when I have my old neighbour and an ex-colleague over on Thursdays, with Lieke at my side, an old tradition. There, too, I feel included and appreciated. That diminishes as companies grow larger. People start to talk amongst themselves, past me. It makes me feel alone, which is always when I decide to take my leave.


I read “De Garnalenpelster” by a Dutch columnist who’s originally from Turkey, Nilgün Yerli. I cried throughout the whole thing. She lost her mother at 15. She decided to stay in the Netherlands on her own, caring for herself and surviving. The book is a tribute to her late mother, an incredibly wise, lovely and liberal woman. A great book that made me insecure about the amount of wisdoms I’ve been teaching my children.


We’re going on a family holiday to Limburg. Hein is stressing out, packing his bags. I’m keeping to myself. I compiled a list of things to take with me and with that, my job is done. The feeling of annoyance itself was here to stay, though. I couldn’t sleep, which didn’t help. I was annoyed and didn’t stop feeling annoyed for two days. I couldn’t get over it and neither could Hein. I was annoyed at the way I was given a drink through my PEG and they left the cap unscrewed so my drink leaked out again. I was annoyed at the obstructive shower curtain and the toilet, which wasn’t even handicap accessible, but whenever I wanted to air my annoyances, Hein told me I was being controlling. But the thing that annoyed me the most was the fact that Hein went biking on Sunday, which meant I would have to spend the whole day inside, except for a short one to church, which I declined. I was morose. Did I travel all the way to Limburg just to laze around in the back garden? I didn’t think so, going in. On most nights, most of my travel companions went out for an evening walk or a local pub. I stayed home. Most of them can’t decipher what I’m saying and, because large groups are usually noisy, I’m even unintelligible to people who usually understand can. It kept me up at night. I just couldn’t get myself to get over it. In actuality, Sunday was way too hot, a perfect day to spend lazing around in a shady garden. Not like I would have admitted that at the time. I’m my own worst enemy.

I’ve visited Limburg lots of times, but always to go cycling and hiking. It’s beautiful in spring. It’s lost its appeal now. It’s a whole lot less beautiful from behind a car window. The landscape is lost on me without hiking or cycling. We went to see Valkenburg Castle and its gardens, we went to Mondo Verde, a great zoo/theme park and to get out of the rain, we found ourselves in the middle of a spring trade fair in Maastricht. It’s fun, going places with the family. The kids had fun playing together. I was glad to be around my youngest niece Hanna, with whom I share a birthday. And the converted farm where we stayed was gorgeous too. The only thing I missed were my amenities and routines I use back home.


I try to convince myself that my illness hasn’t changed my personality. I don’t complain or even talk about my disease. I do require a certain treatment from people and I think I may have overdone that part a bit. Floor thinks I’m egocentric, too concerned with myself. Hein thinks I’m ungrateful and too commanding. I like being in control of how I’m treated. I try to make my life as devoid of insecurity and discomfort as possible at any cost. But the worst way ALS has changed me is my whining. When people don’t understand or misunderstand what I’m saying, repeatedly forget my routines and make wrong assumptions, I’ll whine. Powerlessness, self-pity, sorrow, annoyance manifest as my pitiful whining.


*It’s called Synesthesia