Diary March 2002



It sounds strange, but the fewer faculties I have, the less I’m bothered by what I can and cannot do. These days, I’m losing less than I was during the first few years, I’ve been like this for a long time. At one point, I wrote down when I’d last done certain things, like biking, autonomously using the bathroom, etc. I was consumed by it. Once I made that list, that was that. One grows a thicker skin. The sadness I felt when losing motor functions lessened. I’ve banished some of those thoughts, perhaps subconsciously. Sometimes I do feel envious when the kids cling to and cuddle with Hein. I’m not much of a cuddler anymore. It’s a mutual effort. But this pain, too, is only proportional. Maybe I’ve just become desensitized. “Don’t think about it too much, Jet” was my mantra back in the day.


It’s obvious that I’ve become more fatigued. I have to find motivation to get myself to answer emails or write other things, and I’ve been napping more and more. Dozing away is a daytime activity in itself. In the morning I feel especially feeble.
It had been 4 months, but this week we went to Utrecht again. My lung capacity and spirometry were the same as last time. Despite that, I feel more sluggish than before. Maybe it’s boredom, my days aren’t exactly varied. And I do love doing new and challenging things.

In good company

We had a gettogether on Sunday, three couples. All of the women (ranging in age from 38 to 48) have ALS. It was a cacophony; three barely intelligible women and three men acting as interpreters. It was nice though. We’re very mumbly, so when we’re speaking we require absolute silence. Ineke only has bulbar ALS, so she resorted to writing her thoughts on a board with a marker and holding it up like it’s a scoreboard. Hanna can still speak, with her husband occasionally providing some clarification. And through Hein, I can speak just fine. A remarkable meeting, though it sounded very strange.


It’s finally happened. For the first time in all these years, I have no clue what to do. Before, I had every day planned out. Nowadays, my thought process is more like:

“I could answer my mail.”
“I could write in my diary.”
“I could work on the kids’ newsletters.”
“I could play some bridge.”
“I could…”

But my passion is nowhere to be found. All of them are repetitions. Is it just that time of year? Is this just a phase?

Sunday was awful, nothing to do all day. I was like a zombie, staring at my computer screen. And, of course, we had a row. My social circle has shrunk considerably since I fell ill. It’s especially noticeable during the weekends. We could really use some distraction, even going out for some coffee would suffice. Before, we didn’t feel the need for contact with other people during weekends; the four of us would just go on day trips together. But now even that’s over. OK, I guess I’m a little sombre today.


A fellow ALS patient and friend of mine wrote an article on habits. She has already started to give her carers and loved ones instructions, because she would like to preserve her old habits while she’s being cared for. Of course, articles like this one are made to be responded to. I only partly agree with her. Habits are not static, they change as your condition changes. Before, the four of us would go on excursions, but nowadays the kids don’t come with as often. In short, as changes occur one has to reevaluate their habits. The same goes for ALS. Time and time again, you’ll have to check whether a ritual is still sustainable and, if it’s not, disposable. How much effort does the carer have to put in, and how much are you willing to sacrifice to preserve your rituals, how much are they worth to you? You’ll have to rank your habits: which ones are disposable and which ones do you want to preserve at any cost? Even there, you’ll have to compromise sometimes, and that’s a good thing. Habits and routines are not sacred, they’re made to be practical. For not always having to think about what you’re doing. The people who do well with artificial respiration are often passive types; people who are able to let things slide. I’m far from passive and I prefer to be in charge. I do empathise with the sentiment of the aforementioned article, but (painstakingly) I learned to make certain concessions.


Because of my webpage, I get piles of questions about ALS. University students are the worst offenders. “Could you send me some information about ALS so I can finish my thesis?” No specifics, no further information, like I’m some sort of institute. People probably don’t realise how much effort it would be for me to answer every single one of their questions. Such emails usually end up in the trash. And of course, the following day I get even more questions like “I’ve heard you have a very outspoken position on euthanasia, could you please look at this case file from my university course?” Beat it, you. I only reply to personal questions and stories. I got a good example of a personal email this month.

Only five months ago, my mother made up her mind: don’t mess with my body. She has signed her living will and her GP is in the loop. It has come to a point where swallowing is difficult for her, she can barely eat normally. In short, time to decide whether to get a PEG or not. The experts at the AZU and the rehabilitation clinic presented her with the pros and cons of getting a stomach tube, telling her that the time after the operation will be arduous and painful but also telling her the benefits of having a feeding tube. This week, her GP paid a visit. He told her he’s heavily against the application of a PEG. First off, because she didn’t want one in the first place, secondly because – put bluntly – people who want euthanasia shouldn’t use medical procedures to prolong their lives. Lastly, on top of that he told her that her life would be even more miserable with a feeding tube because it would affect her breathing. And my mother is scared to death of respiratory problems and having to fight for air.

Expert? Me? No, I’m reacting purely from an emotional standpoint. And right now, I’m furious at GPs like this one. My reply:

Go with the feeding tube. Starving is an awful sensation. Her GP’s position on this is horrifying. The desire to be euthanized is rooted in dread and fear of future pain. Essentially, it is a plea to forego any more unnecessary suffering, not a desire to die. That’s exactly what a PEG does, it prevents unnecessary future pain. I think it’s a GP’s job to discourage euthanasia, instead focusing on improving patients’ quality of life and easing their pain. Keep in mind that family physicians know very little about ALS.

It hadn’t been a week since this email when I got another one from the wife of an ALS patient. She wrote that her husband chose euthanasia; he couldn’t deal with the constant deterioration. As it turns out, there are plenty of reasons for euthanasia. I am not an expert, I’m busy enough tending to myself. No more advice from now on.


For my birthday, I asked a friend of mine to make me some eggnog. I’d only had it three times and everytime I did, she was there: in America, on New Year’s Eve and on a skiing holiday. I remember it being runny and tasting like rum. I asked Marjolein to get some thicker straws from McDonald’s, because I expected to have trouble drinking it with a normal straw, and she did, which she found a bit embarrassing. I was prepared for the nog, but it still hit me like a truck. Maybe it’s because I’m not used to alcohol. The smell of rum and whisky was overwhelming. I threw in the towel after half a glass. Has it always been this alcoholic? I don’t recall. Another good case against trying to relive things for the sake of nostalgia. However, I consider this more of a new adventure than anything else. The result was a liter of unfinished eggnog and a whole bunch of McDonald’s straws Marjolein had bought for me (not knowing about my upcoming eggnog experiment). I saved the nog until my real birthday. But then Hein flushed the leftovers down the toilet. A bit of a shame, seeing all that work go to waste.


I celebrated my birthday on Easter Sunday. Easter breakfast, unwrapping presents, an easter egg hunt in the back garden, putting the clock ahead one hour and having the family over at five. The day flew by. We’d had a bridge competition with friend the night prior. The weather was amazing too! I sat outside every day, devising new plans for the garden and beaming at my new plants. Bliss.