Diary June 2000


A comparison

A few days ago I received an email from one of my ALS correspondents. He is famously level-headed and has a pleasant yet aloof writing style. This time, he sent me an email he’d written to his niece in which he compared our disease processes. I’m worse off than he is, which he illustrated with a number of comparative examples.

While reading it I got very defensive, in spite of myself. I don’t write with a laser, I still use my hands. I write by using a mouse, clicking letters on a virtual keyboard with my cursor (I can’t lift my arm, but I can slide it across a desk). Furthermore, I was 38, not 42 when I was diagnosed and I still eat regularly. Peanuts in the grand scheme, those little differences didn’t affect the points he made in his email in the slightest. The crux of my issue was the comparative aspect of it. Even worse; I was being used as a “worst case scenario”! I sometimes catch myself comparing my life to those of others. There’s always someone worse off than me, but I’ll admit that during National ALS Day (which I’d visited mainly to compare myself to others), I felt like the saddest one of the bunch. Being this young and having already lost the three primary functions (speech, arms and legs). Naturally, optimistic ALS patients compare themselves to people who have it worse, while pessimists do the opposite. I fancy myself an optimist. Don’t you dare use me as the worse example. It goes against everything I stand for. I’m the only person who gets to openly compare myself to others, useless as it may be.


I’ve given up on walking, it got too nerve wracking. I’m surprised I walked for as long as I did. Whenever I need to walk short distances, Hein will support me by holding me by the arms while I take marionette-like steps. Supporting me has become more physically straining. Hein wondered what it would have been like if he had gotten sick instead of me. I’ve had that thought too. Because of Hein’s strength, we will probably be less dependent on professional carers. Our friends and family also help keep professional care to a minimum. I wonder how wives of ALS patients manage.

Yesterday, our request for a personal healthcare budget was approved. It looks like my age of professional care has commenced.


I’ve been a bit grumpy lately. Even my own family is finding it difficult to understand me. Usually, problems are resolvable through spelling, but it doesn’t take away from the frustration. It doesn’t help that Ward isn’t that great at spelling yet, so he tends to give up faster. “Nevermind,” he’ll say. I’m afraid of losing my connection with him. Being unintelligible, combined with my inability to walk and the tube sticking out of my stomach, isn’t doing me any favours, to put it lightly. Out of frustration, I bicker with Hein and the kids. You may be thinking: “how do you even manage to bicker?” Well, life finds a way. I’m easily agitated. Sometimes, I’ll wonder if this slump will ever subside, but then I remember all of the similar periods in my life, which all came and went. I have the inkling that this particular episode is going to be harsh. I hope I’m strong enough to get over my discomforts and enjoy the things I have.


There are some who think that we live to learn. Sometimes, life confronts us with situations from which one can learn valuable lessons. I don’t if I subscribe to it. I have wondered what kind of lesson I’m supposed to learn from having ALS. Usually, my conclusion is that it’s a lesson in patience, something I struggle with. Everything would be so much easier if I could just be more patient. Be a bit more apathetic, Jeanet, and everything will be fine.

Monday is Goulash Day

My mother is always here from Monday till Tuesday. Subsequently, we created a new tradition: Monday is Goulash Day. The kids love it and it has been my favourite dish since I was little. My father used to make the goulash, as well as the soup. It’s the only dish I can eat as swiftly as the others, barring Hein, who is the unbeatable champion of rapid eating.


We took full advantage of Whitsun break. On Saturday evening, Floor, Marjolein and I went to see Angela’s Ashes, an Irish drama film. Inviting Floor was a last-minute decision, but I’m glad we did. Hein came to pick us up in the car at 23:30. Even from afar, there was no mistaking the pale little face beside Hein in the car. It looked like Ward hadn’t gone to bed yet, he was still wearing his dressing gown. It was the coziest of car rides. I sat in the regular back seat. We listened to music. The kids slept, snuggled up to me. I miss that physical contact. It’s a rare occurrence these days. On Whit Monday, we visited an art convention. It was too much of a good thing, both the art and the convention itself. When we got home, everyone was spent.


It’s been one year since I stopped using my arms to eat. I have to be fed. Add to that my unresponsive lips and mouth muscles and it’s no surprise that spillage is commonplace. In June I suffered from hay fever, which only made things worse. My trusty assistants spend half their time wiping my mouth and chin and helping me blow my nose. I’ve burnt through countless boxes of Kleenex, whenever I eat a particularly crumbly biscuit my mother cleans me off with a dust buster (which I hate) and I never leave the house without a handkerchief. Preventing loss of decorum is an uphill battle.


The past two days were awful, the entire Netherlands is complaining about the heat. So am I. It feels like nothing can make the sweltering heat go away, especially when sitting in a chair with my sweaty hands resting on my lap. I want to wave my arms around, take off my shoes and walk in the grass, barefoot. No dice, it’s sitting for me. Sitting in an oven-like car for three hours ruined my day, bumping up and down on the way to my homeopath. Overheating, headache, nausea and vomiting. My mother and Floor tried to cool me down using ice cubes. It didn’t help much. The nausea may have had something to do with the 300 milliliters of water Hein put in my PEG, to prevent dehydration. The prospect of holidaying in France just became a lot more jarring.

Open Gardens Day

On Sunday, the moment had arrived: our garden would be opened to the public. Floor had swept the street in front of our house, Kees (in a suit) had removed rogue buds and Hein had turned the fountain on. We were ready. The weather was not. After an hour, our first visitor appeared. Our garden isn’t huge, sweeping it only takes a single glance. Conversation quickly turned to smalltalk about the neighbourhood, away from the garden. For good measure, grandpa Kees pointed out and elaborated on some of our plants. By 4 o’clock we’d only had three guests, so we called it quits and went to visit our neighbours’ gardens. Grand landscaping, lots of different plants. Ours paled in comparison, though I do prefer having a smaller more cosy garden. One of our guests, my GP’s wife, wholeheartedly agreed.

I found the degree of participation a bit disappointing. A new neighbourhood was brought into the fold this year, but only two families opened their gardens to guests. I wrote them an open letter to motivate them to enter next year. I also advised the organizers of the event to let more neighbourhoods participate. The more, the merrier.

Parent-child tournament

Hein and Ward participated in a parent-child tennis tournament. Floor didn’t want to go. Half the neighbourhood came to spectate. The boys did well; Hein and Ward came first in their poule and got fourth place in the competition. Ward got a shirt a few sizes too big, but he wore it with pride. Whenever Ward and Hein had to play, I was left alone on the sidelines. Granted, I was among friends and neighbours, but I was in constant fear of being spoken to by someone, knowing they won’t understand what I’ll reply with. I was addressed often. I admire the people who did, it takes courage to make conversation with me. On some level, it does feel nice to have a friendly chat.

The musical

Yesterday was it: the moment of truth, the thing we’ve all been waiting for, the musical’s premiere night. Months of work funneled into one single evening. So, was it worth it?
Well, I enjoyed it a lot. I had my worries about it being ready in time for rehearsal, but the result was amazing. The kids really made it their own. I adored the little improvised bits that the kids had introduced to the script. The whole auditorium felt like a family and the kids’ goodbye to their old school felt personal and touching. I was put in the limelight and lauded, and went home feeling content, still riding the wave of enjoyment I felt at the show.

Floor came home crying today. Saying goodbye is tough and the next period of her life will be a turbulent one: high school! In the past few weeks, I reaped what I had sowed the months prior: open garden day, a long awaited tennis tourney and, of course, the musical. Every one was better than the last, both planning them and living them.