Diary January 2006

Small gesture

Some things other people might consider small gestures mean the world to me, like adjusting my headrest to support my neck, putting my right arm over my left one instead of the other way around when I’m in the shower so it doesn’t slip off. I know how important it is (my right arm is stronger than my left so it has a better chance of keeping my left in place), even if other don’t. My bedtime rituals are especially intricate. I sleep on my side, with my left arm extended with two pillows underneath me, to prevent any pain. My right arm is more curled and is supported by a rolled-up towel. The whole ritual is the result of years of trial and error. Despite all of that effort, it goes to waste if my head is badly positioned. Sometimes, I’ll wake up in the middle of the night to find that my ear is folded up under my head or the blanket slipped off of my shoulder. And once I’m awake, it’s difficult to get back to sleep. I can’t do anything to fix it. There are so many inconceivably small things that nonetheless mean the world to me. Continue reading “Diary January 2006”

Diary February 2006

Ward is gone a lot

Ward’s school has this bizarre tradition of planning outings in the middle of winter, including an actual night of camping. Two days of walking 30 kilometres using nothing but a compass, sleeping in a tent of three and heating up cans of pea soup. I don’t know what’s the point of all of it, but apparently it’s the fashionable thing to do these days. Ward was lukewarm on the whole thing. His whole outfit was borrowed, the only clothing he actually owned were his gloves. Luckily, his shoes had been broken in already, because Ward’s only preparation was going on a two-hour walk around the woods close to our house, although he did take some supplies with him. What was the trip like, you ask? A lot of walking. It was nice to try something new, but it wasn’t something he’d do again anytime soon. Continue reading “Diary February 2006”

Diary March 2006

Hein and Floor’s skiing trip

It was my birthday present to Hein and, when it was still far away, it seemed like a good idea, but as the date drew nearer, I started to get worried. They were supposed to leave on Thursday afternoon for a long weekend of skiing in La Plagne, to return on Monday morning. I was dreading having to defecate on the commode, bathing and having to sleep in my chair downstairs for four nights. Lieke would fill in for Hein, alternating with my other carers. Once they were actually gone, my worries were gone. Especially when, on Friday, my carer Roeline offered to shower me with Lieke’s help. When she, in the nick of time (the chemist’s closes at six) offered to go get me a laxative, the weekend was looking brighter than ever. Not being worried about my bowel habits in particular really relieved some tension. It’ll make Hein’s free weekends in the future a lot easier. I’m sorry about talking about bowel movements this much, but I’m just glad I managed for a weekend without Hein. Continue reading “Diary March 2006”

Diary April 2006

I haven’t kept my diary this month, I couldn’t muster up the energy. Everything I’ve written here, I wrote at the end of the month.


I parted ways with my carer Carlien, who cooked us an Indonesian dish called Soto as a parting gift. She had been with me for a year and eight months, two days a week at first, later reduced to once a week. She knew everything there was to know about movies, watched the same shows I did, taught me how to download things and helped me read. She is a physical therapist who specialises in breathing and relaxation techniques, a field in which she’d found a job. Saying goodbye to an old carer also means we have to train a new one, which is always a challenge. The new carer started on Monday, May 1st. She was home alone with me. I’d hoped Ward would be home, but he was gone for the day. Thus, we had to manage together, I was nervous and she was unsure. When we gave her instructions we had focused on helping me use the bathroom and omitted the communication part, which proved to be a bottleneck. I was getting more and more frustrated until she decided to call Hein. That was probably the moment she decided to quit. She left that very same day at 12 o’clock. Continue reading “Diary April 2006”

Diary May 2006

Shower lady

Things are going well between my shower lady and I. We’ve finally figured each other out. She’s still a bit rough when she’s dressing me, but she takes the time to shower me and blow-dry my hair. She heats up my towel on the heater, which I think is on way too much. I actually like showering now, which became even more clear when she went on holiday in May and I was stuck with a substitute. Continue reading “Diary May 2006”

Diary June 2006


Floor got back from her holiday to Crete on June 11th. Hein was on holiday as well that weekend, so we couldn’t pick Floor up from the airport. I’ve never gone anywhere in our van without Hein, because getting me into the thing requires a lot of muscle. When Roel proposed we go pick her up together, I didn’t hesitate, because Roel is a strong guy. Thus, I had my first van ride without Hein in six years, a milestone. Waiting for people at Schiphol Airport isn’t as fun as it used to be, by the way. No more glances at each other through the windows until the person being picked up collected their luggage. All there’s left now is an anonymous exit and texting back and forth to find each other. We came home to the smell of pie and the anticipation of the first match of the World Cup.

Oh, and Floor? She had a good time. She barely went anywhere on the island and the only differences between the pictures of her on Crete and her in Zeeland were the views. Continue reading “Diary June 2006”

Diary July/August 2006

Margriet de Boer passed away

Margriet and I started corresponding two and a half years ago, when her illness was still in its infancy. I had a lot of fun emailing with her, even during rough patches. I feel like a coward for not responding to her final email to me. It was about struggling through life and her doubtful future. I didn’t know what to write. I didn’t want to think about those things. Two years ago, she took a train all the way over here. I thought she was so brave for doing that. To my surprise, her funeral notice included the very same Steve Shackel quote as the one on my website. Apparently, a lot of people who google Shackel get redirected to me. His name had twelve hits this month. I have a lot of fond memories of Margriet. Continue reading “Diary July/August 2006”

Diary September 2006

Second shower lady

Because I shower more than I used to, we decided to hire a second shower lady. The showering itself is going well, but again, her patronising annoys me. Loud and simple sentences, using words like ‘sweetheart’ and ‘missy’. I despise it. I’m about her age, I just happen to be paralysed. Apparently it’s hard not to adopt that tone when you work with the elderly. Should it be, though? Would I warm up to the idea of being called ‘sweetheart’ in my 80s? Continue reading “Diary September 2006”

Diary October 2006

It’s already November and I haven’t even written anything for October. Whenever I see the analytics of my website I feel guilty. About a hundred people a day try to access my nonexistent October entry.

October went by uneventfully. I can’t use my PC properly anymore. I can’t play more than one game of FreeCell, check my email or watch a TV series. I answer my emails with a carer’s assistance. I’m having trouble writing my diary. I can’t keep up with it anymore. I’ve downgraded to an older PC so I can use my old word prediction program, which I hope will allow me to type more autonomously again. Especially with Sinterklaas around the corner, I think a bit of autonomy would go a long way. I wouldn’t like to dictate entire Sinterklaas poems to someone.
I sometimes spend whole days doing nothing. I’ll have a morning nap, wake up just in time for my afternoon nap and fall asleep in the evening while I’m watching TV. Thrilling. Even though they’re called ‘power naps’ now, I still feel groggy whenever I have one. Continue reading “Diary October 2006”

Diary December 2006


One would think that my dreams would have caught on to the fact that I have ALS. The truth is the complete opposite. In my dreams, I ski, hike up and down mountains, go to work (knowing I’m ill, but apparently I’ve recovered in those dreams) and generally act like a normal person. In some dreams I’m unable to talk, although eating is never a problem. Dream-me likes thick chips with mayonnaise. People are strange like that. I often have lucid dreams, where I know I’m dreaming but I don’t wake up. Sometimes, when I’m sleeping in my chair downstairs, I dream of standing on the edge of a ravine. After that, I’ll jolt awake and feverishly check my surroundings to confirm that I’m, indeed, just in a chair in my living room. I’ve heard so many other people with ALS talk about how their dreams adjusted to their condition. I guess I just haven’t caught up yet. Continue reading “Diary December 2006”