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.

Ward did winter sports during his spring break. I missed him terribly. He got back on Saturday and had the time of his life. On March 10th, Floor and Hein will go skiing for a weekend.


This morning I had a nasty accident with the stair lift, probably because my legs were badly positioned. I was still shaking minutes later. I’m always scared of it happening again. Afraid of being afraid. Some of my days are dictated by anxiety. Most normal people can’t fathom what that feels like. “Why wouldn’t you sleep in your arm chair?” Because it impedes my movement and I don’t like lying flat on my back. Nobody seems to think of the little issues. “Just try it for one night.” No thanks. I can’t adjust anything and that powerlessness is accompanied by fear, especially since I can’t talk. All I can hope for is for someone to help me. I prefer writing my fears down beforehand so there’s an emergency plan in case something goes wrong, but even then, I hate being completely dependent on someone else. It’s a matter of trust, something I don’t think normal people fully comprehend.

A good friend and ALS patient described it like this:

”Fear: probably one of the worst parts of having a disease like ALS. I suffer from it too. Fortunately, I don’t have to bother with the patient lift anymore, but when I did, my biggest fear was them leaving me hanging. I used it because my legs couldn’t support my weight anymore. The lift put pressure on my chest, because of which I had trouble breathing.
By now, my greatest fear is my life support. Sometimes, the fluids in the machine have to be replenished, so for a short while, I’m resigned to gasping, fighting for air. It has to be done quickly and efficiently. Last week, one of my nurses managed to put the water through the wrong filter and all I could do was yell incoherently, because I can’t talk without my artificial respiration, my lungs just don’t get enough air.”

My mother

My mother isn’t doing well. She’s in a lot of pain, even with her morphine patches. Last week, she stopped by our place while she was on her way to the hospital. It was the first time I’d seen in a wheelchair. I was shocked. I tried to distract her by talking about the kids, but she just wasn’t all there, slumped in her wheelchair from the pain. She also made a strange mix-up, like she was disoriented. Today, she’ll find out if she can have a back operation to reduce the pain somewhat.

Three weeks on and one hospital stay later. My mother trusts doctors more than anyone, while I try to see as few of them as possible. I select my doctors based on their behaviour and bedside manner (I’ve already got a different GP and, per my request, I always see a doctor I like during my lung inspections in Utrecht). My mother visits several. Of course, that’s easy for me to say. After all, I’m not constantly in pain.

She turned 80 on March 3rd. She’d been admitted to her nursing home the Wednesday prior. A short stay. She left the following day. She hated it there. She celebrated her 80th birthday feeling more chipper than usual in her own home.


I’ve completely neglected my teeth since getting ALS. I always thought: “they’ll last longer than I will.” Not so, so now I’m screwed. Last week I had a terrible toothache, I couldn’t eat a sandwich because the crumbs hurt my gums. On Friday they pulled another tooth so I spent the day with bleeding gums. Whatever, the tooth itself had all but broken off completely, so I wasn’t complaining. Almost immediately, something else started hurting again. I’m meeting with my dentist soon to make a full plan. ALS patients, be warned: take good care of your teeth!


I’ve been hinting for months that we need to start planning our summer holiday. By now, it’s too late, all of the wheelchair-accessible housing are already taken. Scandinavia didn’t look promising, except for one cottage 400 km deep inside the Arctic Circle. I found something in Ireland but nobody was too excited about it. The trouble is, we’ve seen a lot of handicapped-accessible housing over the years and it’s getting old to go on holiday in Europe.

Time for a family meeting. We had the choice between a cottage in Oxford or one in Zeeland, two places we’d already been once. The kids picked Zeeland because of the sea, the amusement and the possibility of having friends over. We decided to have a few trips to Belgian cities. Oh well, holidays close to home have their charms.

Kneeling on a bed of violets

I read the book with baited breath, despite not understanding the protagonist’s religious convictions at all. It’s a beautifully written book, penned by the oldest son of a family. He was in a unique position as the oldest. He was his parents’ mediator, did not take sides and had a lot of responsibilities, maybe more than a child should have. He reminded of Floor, but maybe that’s the position a lot of older siblings are in. Floor is a great mediator too and always acts as a buffer whenever Hein and I are at odds because of my illness. She’s got a great sense of responsibility too.