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.

Shower lady (2)

I’ve been getting lots of feedback on the thing I wrote about my shower lady. Apparently, it was very relatable.

”When I was reading your December 2005 diary entry, I was reminded of my father, who also had ALS. Sometimes it was almost indescribable how clueless some assisted living workers are about ALS. I remember one of them trying to use the patient lift to put my father on a chair. She had no idea what she was doing, my mother and I are usually there to help but we weren’t that time. One moment without supervision and, before you know it, my father fell from the lift into the chair with a loud BANG. Nobody was more shocked than my dad. But that’s what happens when speed is valued above quality of care. He’s as annoyed as you are when his carers completely ignore him and strike up a conversation with me or my mother.”

There is a flipside. One morning, my shower lady told me she’d have to bathe another 7 people that morning. Good luck taking your time with each one. She told me she didn’t mind, though, because she’s a quick worker. Yeah, tell me about it. A system that expects carers to bathe 8 patients in one morning can’t be a good one.

I’ve started watching a show about four elderly people and their two nurses in a retirement home. One of the nurses is a weathered veteran while the other only started recently. Immediately, I sympathised with the young trainee, who took the time to talk to every one of her patients even though it made her a slow worker. The veteran, on the other hand, had devised all kinds of (sometimes crude) ways to get the job done as quickly as possible. Granted, she was a speedy worker, but she broke all kinds of personal barriers that didn’t need breaking.

Another thing the show illustrated beautifully is how the approval of the employer is more important than customer satisfaction in these cases. The shower lady is perfect example of this very point. She told me that the only way she’d use the shower lift was if my sister-in-law trusted her to do it right. Why does that matter? Hello? I’m still here and very much able to decide who does and doesn’t get to put me in the patient lift. I think this mentality is prevalent in larger institutions like nursing homes.

She is rather good at showering me, though. She even blow-dries my hair.


I spent a lot of the first week of January watching the TV series 24 with Ward. It’s about the life of a counter-terrorism operative whose family gets kidnapped. I got the boxset for Christmas and it’s very good. I scoured the internet for DVD copies of the other seasons, which I’ve bought by now. I love watching TV with my children.


If there’s one thing I miss about vernacular these days, it’s the lack of proverbs and expressions we had back in the day. Sometimes, my mother uses one and asks the kids if they know what she meant. They usually don’t. It’s a shame and I think, if I were able to talk, I’d teach them a thing or two about proverbs. For now, I’ll just write about it in my diary. Idioms make language so much more colourful and rich, but I suppose it’s just too slow for the SMS/MSN generation.

Lion King

We went to the Lion King musical. The costumes were gorgeous and we could see every little detail from the front row. It’s too bad my neck went numb during the show. I had a headache the following day. We went to see Narnia the following weekend, which was an old-fashioned fantasy film. I think I’m done with talking animals for now.


We’ve had a lot of break-ins in the neighbourhood recently. The police issued a warning and one of the burglary victims did the same. It just so happens that I sleep in the living room downstairs a lot, so I was extra vigilant. Fortunately, our back garden isn’t connected to an alleyway, but one of the neighbour’s kids spotted two suspicious men in our front yard. This morning, our locksmith quoted a whopping 400 euros for new locks. The kids check the locks every night.


How much misery can a person be put through? I checked my mail. An email from someone with ALS who, after being breast cancer free for five years, found out the cancer has metastasised in her bone marrow and lungs. ALS and cancer, what are the chances? The following email was one from a woman whose mother died of ALS. Her father committed suicide after his wife was diagnosed, he couldn’t deal with her pain. Short messages containing indescribable misery. I get a lot of those.


It’d been going well for seven years; I never have to pee at night. I didn’t have to wake Hein up to go to the bathroom. I even changed my drinking patterns to combat it, I don’t drink anything after half past seven. All of those years without as much as a hitch, but then, suddenly, I started waking up at 5:30 with a full bladder. No more sleep. Hein gets me out of bed, bathes me, dresses me and helps me into my chair downstairs, where I continue sleeping. I haven’t changed anything in my diet/drinking habits. By day, I still pee as much as I used to. I just don’t get it.