Diary June 2001


Ward reads Harry Potter to me

For the past month, Ward has become a Harry Potter fanatic. My GP suggested he read the books to me. We started last night. Instead of flipping the channels after the evening soaps, I was read to. I really enjoyed it.

Slow Pentecost

It doesn’t happen very often, but this Pentecost weekend I was bored. I didn’t know what to write, we didn’t go on any outings and the weather was bad and cold. I napped a lot. And I nagged Floor. About how it would be a good idea to go through her History material well in advance, while Floor didn’t feel like it at all. Fortunately, we did some evening activities which were highly enjoyable. It’s worrying to me whenever I can’t think of anything to do. Amusing oneself is an important skill for an ALS patient. Maybe it’s time for me to get a library card and some audiobooks. I am content with Ward reading to me. On Whitsunday we paid a visit to the renovated National Museum of Ethnology. Pretty, but not very original. All new museums look very much alike. Many showcases, nice lighting and lots of slow modern media. The appeal of the old building has vanished completely under the veneer of modernisation. The kids stayed home. Like I said: museum fatigue.

Big toe aftermath

In March, part of my ingrown toenail and the accompanying fibroma was removed. Regrettably, the wound wouldn’t close. My shoe probably puts too much pressure on my toe, because of which the fibroma and infection have returned. I won’t be able to wear shoes for two weeks. All of that while I’m so dependent on my shoes. Twice a week, the GP comes by to treat my foot with silver nitrate, a substance that kills fibroma. My toe has gone black. When it’s warm, having no footwear can be awfully cold. I still use Epsom salt, often accompanied by Floor and sometimes Ward, who also enjoy foot baths.


Helping me got to and use the toilet has become harder lately. When I sit down I often do so at a wrong angle and when I get up, my legs buckle, making it harder for my caregivers to get me on my feet. Besides, our bathroom is miniscule, not granting my carers much maneuverability. I recognise the pattern. First, my directions become more and more specific, after which I’m faced with the unavoidable realization that I can’t go on like that any longer. Like typing with a mouse, using the bathroom and eating sandwiches are quickly becoming unmanageable. The difference is that there are alternatives for typing and eating sandwiches: the head mouse and my PEG. There aren’t any readily available alternatives for using the bathroom. Granted, Hein still manages fine, but he’s not available every hour of the day. On top of that, he still has a weekend off. I’m bitter. It causes complications in the carer schedule and I’ll have to let go of another routine, this time without knowing what it’ll be replaced by. To be continued.


A friend of mine has metastasised breast cancer. For the first time, I’ve realized that ALS has its advantages. I don’t have to make any medical decisions. No chance of recovery, no side effects, no hope but no hope lost either. None of that. Just the task of living on as best I can. It can be tricky, but it’s tranquil in a sense. It’s uncomparable to the life between dread and hope she’s leading right now. These advantages are also disadvantageous, however. With cancer, people ask about the possibility of treatment. It’s in flux. You’re doing something about it. Your story of survival gives people the strength to talk about your disease. After the ALS diagnosis, there’s just silence.

’Ballad of Lasts’

In my thoughts, I always note when I did something for the last time. Here follows a list. At least it’ll be off my chest.

  • In May of 1998 I biked for the last time, after a schoolyard tumble with a bleeding head wound, many concerned parents and shaken kids.
  • In September of 1998 I drove for the last time, the GP could come visit me instead. No longer safe.
  • In October of 1998 I dressed myself for the last time.
  • In November of 1998 I walked through the house without a rollator for the last time. The last time I went to the attic (using the stairs).
  • In June of 1999 I fed myself for the last time, because it tired me. The last time I worked in my upstairs study, I could still operate the stairlift by myself.
  • In July of 1999 I autonomously used the bathroom for the last time, because I couldn’t lift my trousers anymore.
  • In August of 1999 I typed for the last time, albeit with one finger, taking four hours to type a quarter of a page.
  • In September of 1999 I went outside with my scooter for the last time, turning became too difficult.
  • In October of 1999 I showered while standing up for the last time
  • In December of 1999 I ate my last non-blended dinner, but it was still thoroughly mashed.
  • In March of 2000 I went to the toilet with my rollator for the last time, terrifying.
  • In October of 2000 I drank unassisted for the last time, I couldn’t bow forward anymore.
  • In October of 2000 I sat in the passenger seat of the van for the last time, my head kept slumping forward.
  • In October of 2000 I used my light foldable wheelchair for the last time.
  • In November of 2000 I stood up by only using my rollator for the last time.
  • In December of 2000 I typed using my mouse for the last time, as well as sitting in a normal desk chair.

Some developments happen at once. Still, I speak (or I try to), I play bridge, I laugh, I help with schoolwork, I go on holiday and I have loyal friends and family.

Toilet shenanigans

Hein immediately came up with a solution for my toilet problems: a commode. I dismissed the idea, too much of a privacy breach. Despite that, Hein went to a medical shop one day and returned with, you guessed it, a commode. Initially, it was our intention to put it over the toilet so it looks like the toilet bowl is attached to the back wall (it’s fixed to a sidewall), giving helpers more space to hoist me up. To actually do that though, the toilet seat and arm supports would have to be removed to make space. Thus, nobody (including me) would be able to use the bathroom normally. Not a great solution. Oh well, we’re a couple of days on and I’m over my initial apprehensions. Our priorities are clear again: being able to safely use the bathroom without any inhibitions. We put the commode in the hallway. Indefinitely, because we’re looking into renovating the bathroom. I trained with Inge this morning and it went well. It takes some getting used to, but in the big picture, it’s no big deal. Thus, the commode is proudly on display in our hallway. My mother finds it distasteful and suggested we cover it with a towel.

Momentary overload

Not only am I having difficulties with using the bathroom, but our regular carer is leaving us in July, the RIO is changing the amount of care I’ll get every week and we’re having a foldable shower chair delivered. In short, my whole routine is messed up. I’m not in the mood for that. Mind if I skip this round?

Nighttime analysis

I often wake up at night just to stretch and readjust. I can’t really call it waking up either, because I’m only ever conscious enough to note darkness, light, silence, the sounds of birds and the sounds of the heating unit. All of these different sounds and sensations signify different times of night, so I know what time it is without an alarm clock. As the days get longer though, the periods of “light without a sound” are becoming longer by the week. I always want to get out of bed then, but I’ve been able to resist doing just that lately.


For almost three years, I’ve had a very consistent schedule of faithful caring friends and family. My mother still comes over every Monday afternoon till Tuesday morning, now assisted by a professional caregiver. Every three weeks, my brother Anton stops by on a Wednesday. Regardless of the weather, we go outside for a walk. On Thursdays, it’s either my mother-in-law or my sister-in-law Lieke who takes care of me. My neighbour Lisette assists my mother-in-law when I have to use the bathroom. On Fridays my friends Marjolein and Tineke alternate caring duties. We go on outings whenever we can. For the past two and a half years, Inge has been my main carer on Monday, Wednesday and Friday mornings, helping not just with housekeeping but a lot of other stuff. Of course, there’s Hein, Floor and Ward who take care of me for the remaining time. At school, Floor was asked if she know what informal care is. She had no idea. Well, she does it, as well as all of the aforementioned friends and family. Besides International ALS Day, June 21st is the day of informal are, and I want to put my faithful helping hands in the spotlight for once. Thanks everyone, without you my life would be a lot more dull.

Terrible disease

Prompted by the International ALS Day, an letter was composed to raise awareness about ALS. In the letter there is mention of a terrible disease. You may find it odd, but I’m against that. It’s so negative. There are plenty of worse diseases. Most ALS patients live good lives. Not everyone is so lucky. Maybe thinking of ALS as a “terrible disease” just doesn’t fit into my optimistic worldview. Isn’t it terrible. Well, it’s not pleasant, at least.

Not really true

Previously, I wrote about the silence that surrounds you after an ALS diagnosis, but that’s not true. It’s human nature to not accept the incurability of one’s disease. The alternative circuit is bustling. I did visualisations, reiki and (used to) use many anti-oxidants. I chatted about that with many people. Apparently, talking about treatment is easier than talking about the diseases and its consequences.

New help

Today is my first day with my new caretaker. I need to get used to it. Having to explain everything again: no bent straws, don’t hold my straw, hold the cup upright, etc. When she hoisted me up she gripped me so tightly I almost completely disappeared in her bosoms. I gasped for air. We couldn’t find a way to use the bathroom we both felt comfortable with. I do think she’s nice. I’m a bit grumpy though, I don’t take to change very kindy. I’m frustrated because of my unintelligibility and the mutual confusion it causes. I’ll get used to it. She does understand me and makes relativising jokes.

Hein on tour

Hein went cycling in Limburg this weekend, putting some real miles on his bike. Some time to himself, but not for too long. I slept in my chair overnight. I was glad to be in my bed again last night. My sister-in-law Lieke took care of me. On Saturday evening we saw Bridget Jones’s Diary with mothers and daughters. I highly recommend it. A lovely night of laughter and relaxation. I entertained a lot of company too. I notice I called on Lieke a lot, I do rely on my caretakers an awful lot. The weekend went smoothly.

World ALS Day, June 21st 2001 in the metropolis of Uden

Right before we went to Uden, we got the news that the frontman for Mexico, Olav, had passed away. How did he deteriorate so quickly? He seemed fantastic on March 15th. I was bothered by it. On the ALS Day itself we commemorated Olav, too.
It was a great event with excellent food (for those who still eat it) and good service. The opening ceremony was a parachute jump of five parachutists. Two of them landed well, one got tangled in a street lamp and to of them landed out of sight. There was a humanist introduction and Maurits van Selms’ attorney, followed by an open space, a kind of structured coffee break. We were asked to think of conversation topics, from holidays to dating prospects. We didn’t participate, but we did talk to a fellow ALS patient from Leiden who was not looking forward to this day and confrontation. All in all, we had a good and casual time. There weren’t too many people (I only recognised a few people from prior gatherings), but the foundation still managed to make it a spirited occasion We left at half past five, feeling content.


June was a month of accepting changes, with which I am still coping. I’m working on it. It wasn’t all doom and gloom, though. The weather was nice, but not too hot, I enjoyed the time I spent sitting in the garden. The kids played in another tennis tournament, which I spectated. I met a lot of neighbours there. During a rainstorm, we sat under a tarp and watched the water rise up to ten centimetres. A wheelchair is infinitely useful for that. Ward found a chick on the street. It’s touching and adorable to see him grooming it. I would like to have a chicken. Floor was way too tired for exam week. She invited a bunch of her friends over to watch movies, unashamed of the commode or her ridiculous mother. Hein and I also celebrated our 12 and a half years of marriage, which we celebrated with the kids. Enjoyment of a month is more of an exercise of focus than anything else.