Diary May 2000


When I wake each morning I decide…
This can be a good day or a bad day – my choice.
I can be happy or sad – my choice.
I can complain or I can cope – my choice.
Life can be a chore or a challenge – my choice.
I can take from life or give to life – my choice.
If all things are possible,
How I deal with those possibilities is – my choice.
Steve Shackel April 2000


I spent my May holiday in Renesse, alongside some friends with kids of the same age as mine, so things went smoothly. Our number one activity was hiking, through both cities and nature. I even went for a ride on a Sand Rider, one of those beach wheelchairs. It looked ridiculous, but it’s the price you pay for functionality. We’d seen them used before, in Zeeland last year. It was a tall wheelchair on thick yellow tyres, a white plastic frame and had a bright blue seat. I remember thinking then: “I wouldn’t want to be caught dead on one of those.” Apparently, things change. I felt like a celebrity, being wheeled around on it while being photographed from all sides. Despite that, I still felt a bit debilitated sitting in it. I don’t know why, but I felt like a bit of a simpleton.
The weather wasn’t on our side, it was cold all week. As if to spite us, the cold spell finally broke on the day we left. We took our last breakfast in the beach tent where we had drank coffee every afternoon that week. I had a good time.

How are we going to tell the kids?

The kids know about my illness and the fact that I’m deteriorating hasn’t eluded them either. We use the term ALS, too. The ultimate result of the disease, death, is never discussed. I think they know more than they let on. Especially since I cry whenever anything sad is on TV. Despite all that, we never explicitly discuss dying. After all, life is not just about making goodbyes. I’m essentially burying my head in the sand, all while having the gnawing notion that the kids are already distancing themselves from me. I’m not looking forward to talking about it in the slightest. Too much emotion to handle.

What we did talk about at length was my PEG operation. During dinner yesterday, one week before I’m supposed to go into the OR, we told them. Hein did the talking. He had barely started before I started bawling like the crybaby I am. Floor immediately tried to shut down the discussion, but we didn’t let her. Eventually, we got to talking about technical stuff, a lighter part of the topic. The kids were in disbelief. “Do we have to puree your apple slices before we feed them to you?” “Is the tube detachable?” It was high time for the kids to go outside and play, to let the news sink in. In bed, Ward wanted to know more about the PEG. It troubles him. He slept in the guest room, on the same floor as Hein and I. To be continued.


Every single human lung contains mucus. One swallow and it’s gone. When your lung capacity is diminished, however, coughing it up is the only way to evacuate your airways, meaning I have to cough a lot. At first, most people would fall silent whenever I did, thinking I was going to speak. By now, most people are used to it. Nobody pays it any mind, unless it turns into a coughing fit. Even then, people aren’t as alarmed by it as they would have been last year. I went to the hairdresser today. Having to hock up phlegm in public is still embarrassing in public, mostly because of the sounds that accompany it. An American PAL once wrote: “I keep making those embarrassing funny noises.” I couldn’t have put it better.

Squeaking (read: screaming)

Whenever I panic, I shut down. Doing things that are routine prevents panic. Routines are fairly unattainable, sadly, because I have too many different caretakers for that. Using the bathroom is an especially stressful affair. Turning while using the rollator is a delicate process, as are standing up in the bathroom and using the toilet. If there’s even a remote chance that things might go awry, I start gesticulating. When people don’t understand the directions I’m giving them, I start squeaking. That’s usually when the routine breaks down completely. The caretaker doesn’t know what to do, meaning that the thing I was trying so hard to avoid is the only way forward, with me screaming all the way. Often, they’ll hold me tighter, thinking my distress is because I’m afraid I’ll fall, while all I really want is to find my own balance. When I don’t have foothold, I might as well be a sack of oats. Nobody does it with bad intentions and whenever I snap at people I feel like an ungrateful brat. I can’t help screaming when things go wrong. Sorry, carers.
Whenever Hein and I are put in a new situation, the same happens. For the first few days of holidays it’s screaming galore. It’s the price we pay when creating new routines. Help, help!


The ability to amuse oneself is one of the most important to ALS patients, even better if it doesn’t have too many moving parts. A quirk about ALS is that one doesn’t feel sick at all (at least, I don’t). Granted, my muscles don’t cooperate too well and comfort is few and far between, but I don’t feel nauseous, there’s no pain and my mind and senses are sharp as ever. It’s those senses and that mind that need stimulation. This is what one of my days might look like:

Around 8 o’clock, Hein gets me out of bed and puts me in the shower. After drying off, my shoes come on and I use my toiletries while standing in front of a mirror. Afterwards, I’m put in my chair while Hein brings Ward to school. After he returns I fully dress and we go downstairs. Around this time, our primary carer Inge arrives. Hein leaves for work. After breakfast with a newspaper, I turn on my PC.

Writing is my most important pastime: my diary, my homepage, answering email, compiling newsletters for the kids and some other things here and there. I often spend three hours of my morning on writing. Twice a week, writing is superseded by a morning stroll and a visit to the tea parlour. After that it’s time for lunch (which can take ages, because eating sandwiches is a Herculean task), followed by a brief period of tranquility before the kids get home. I spend most afternoons sitting in the garden, doing grocery shopping or doing other communal activities. Two afternoons a week are spent doing physical therapy. Overall, I spend the bulk of my time sitting in a chair. I don’t mind terribly; I make plans, I daydream or I fantasise stories in my head. I’ve been doing that since I was little. I like to think that I’ve become quite good at fantasising. It’s very relaxing. By the time dinner is ready, I’ll usually be on my PC, playing dumb games. At night I watch TV, write some more or play games of bridge on the computer (it’s good training). I’ve got to say, I’m rarely bored. I think I owe that to my family. I don’t want to be too much of a nuisance. The PC and the internet are the perfect tools for my plight.

My biggest fear

Before I was admitted to the hospital, I had one huge fear: if my heart gave out or I stopped breathing during the operation, I hadn’t said goodbye to my kids. The thought alone was crushing. The day before my surgery, I told Hein that I wanted to be resuscitated if anything went wrong. It was a huge conflict of my rationality and my emotions. My rationality told me: “wouldn’t it be fitting to go while I still have some of my faculties?” while my emotional side fiercely protested this sentiment. It’s irreconcilable. Still, saying goodbye is inevitable.

Day one after the operation

I’m home again, feeling weak. My stomach hurts and hocking up mucus is more painful than ever. I wasn’t put under during the operation because of my weak lungs, so I had the pleasure of being awake during the operation. It wasn’t fun. Having a tube inserted in my throat was accompanied by constant dry-heaving. My whole body was screaming in protest. I was given a mouthguard so I wouldn’t do any lasting damage to myself while trying to vent the full-body protests, but when I got home my bottom lip looked like it’d been hit by a boxer. The operation only took 10 minutes. I couldn’t eat or drink anything on the first day. The pain wasn’t as bad then. The following day, however, we decided to have cauliflower for dinner. Awful, my stomach completely cramped up. I immediately took a suppository. I’m far from a superhero when it comes to hospital business. The constant inspections and useless reflex checks, awful. I’m glad to be home. What a mess. Two days of hospital and my world has turned upside-down. I’ll probably keep eating normally for the time being, only using the PEG for emergency reasons, like when we’re on holiday. I’m still eating normally, if a bit messily. What’s next? Only time will tell.


Hein stayed with me the entire time I was in hospital. I felt completely safe, because I didn’t have to explain a thing to anyone. Hospital staff are glad he’s here too, because he is essentially doing their job for them. I admire his patience, something in which I’m lacking. He was a huge beacon of support. I’m glad he was there for me.

I’m alright

I’ve been home for three days now. I haven’t needed paracetamol since last night. I’m home alone, in front of my PC with my favourite CD on. Showering is a no-go for the coming week, my stomach is still bandaged. Thus, every morning Hein has to get a bucket and hand-wash me. The feeding tube has to be flushed once a day. I’m bad at this stuff, a wave of self-pity is rolling over me.

What do the kids think?

Floor is a bit standoffish, while Ward only voices his concerns to Hein. When I got back home, Ward gave me a framed drawing he’d made. When I was in hospital we called each other on the phone. They were happily surprised when I was already back home when they got back from school on Friday. Despite the fact that I feel lousy, I’ve settled back into my old ways quite nicely. Grandma Lia, who watched the kids while Hein and I were away, sewed a leather skirt for Floor’s musical. The kids are apprehensive to ask about the operation. Neither of them is very keen to see what’s under my bandage, let alone my feeding tube. I don’t have the urge to show it to anyone either. During dinner Floor was visibly relieved that I was still eating normally. She was under the impression that everything would go through a tube from now on. To her surprise, I’m still chewing. After dinner I watched TV with Ward. Home, sweet home. They still look at me out of concern whenever I cough or hock. On Sunday, the kids made 220 euros selling cookies for the tragedy in Enschede (a fireworks disaster that killed 23 and injured over a thousand).

Showering again

Today, I used the shower for the first time in two weeks. Lovely. Hein and I did have to come up with a new routine; cleaning the tube and tucking it away in a specially made bra. As of now, it’s working perfectly. I still feel the tube when I’m lying in bed, but maybe I’ll stop noticing it eventually. A doctor removed my bandage yesterday, which Floor found idiotic. She offered to pry it off herself, but we decided against it. Life has become kind of normal again. With the new addition of a tube, of course.

My book

Somewhere in the Netherlands, someone is working on my book. I like that thought. Right before my hospitalization, two benefactors from Legacy Holland paid me a visit. I was afraid that there was already a book like mine. This week, I read a book from a fellow ALS patient. It shocked me how much she went through. The chapter about CPR was particularly harrowing. Even half of what she’s gone through is enough for a lifetime. Luckily, my booklet is vastly different. I’ve been looking for outlooks that ALS patients have on their illness and how to deal with the disease in everyday life. They’ll be featured in my book. I’m also emailing friends, asking them to write one for themselves. I’m excited to see what they come up with.