Diary October 2003


The incident

There was another bridge night. Lucy and Jan were there too. Lucy suffers from cancer and is going through chemo, so she was too tired to stay long and didn’t play either, so we talked for a bit before we started. Well, they talked. It was taking a while for us to start playing after Lucy and Jan left, so in the meantime I ate my daily portion of chocolate. Suddenly, I accidentally bit someone’s finger and my tooth came loose. I always panic in situations like that, so I called for Hein. There was still a bit of chocolate in my mouth that I couldn’t get down. Meanwhile, Hein had had enough and wanted to leave. Within five minutes I was sat in the van, leaving the rest behind in utter disbelief. Afterwards, they discussed ways they could offer us support (we’re not much of a support group, mind you). After five years of ALS this type of thing has almost become normal, but people do worry about me. There are ALS patients around whom huge rallies are organised by friends and family to raise support for their healthcare requirements and needs. I don’t like the sound of that and prefer to stay in charge, which I acknowledge may be a mistake. Either way, everyone is looking out for me, so an incident every now and then can’t hurt.


I made a dentist’s appointment as early as possible, which was on Monday. Apparently, the damage was extensive, because the titanium screw had broken (something the dentist had deemed impossible), so it seemed that a bridge was my only option left. He wasn’t too happy about that, and neither was I. It would be an operation spanning several days. After a bit of convincing, I got the dentist to take the screw out. He did warn me that it would smell like something was burning, because he wouldn’t be using any water during my operation. It looked like fireworks, as bright sparks shot out of my mouth. But it did work. The new screw is thicker than the last one and I hope this one is actually unbreakable. Still, I’m scared to eat chocolate now.

I miss you

After bridge night, I received a veiled language-filled email from my friend Marjolein. I wrote a rather brusque letter back. It was her turn to take care of me the following Friday afternoon. We looked at each other, grinning a bit. It was all too obvious that we needed to have a serious talk. It didn’t take long to resolve our issues, but we continued talking about the ramifications of my illness. Suddenly, she said: “I miss you. I miss shooting the shit with you in the pub, chitchatting after fitness, the weekends spent hiking.” Those words broke me. The only way to live with this illness is to focus on faculties one has left. Missing those lost won’t solve anything, they’re a taboo. The sensation of “missing” is wrapped in a thick coat of denial. Her words were a gift. Days later, I would still burst into tears whenever I thought about them. Yeah, I miss doing those things too. I miss myself. Thank you, Marjolein.


Now that we’ve opened up the floodgates of forbidden feelings, I’ll talk about another thing I miss: physical contact. There is a photo (I’ll try to digitize it) of Hein, Floor and Ward, walking though a French village, holding each other tightly. Heartwarming, but it does make me envious. I would love to be someone to hang onto and hug with for the kids, but I’m not.


There are those people who believe that everything in life has meaning. That every setback is a lesson. I’m anything but inquisitive. If I were, I would ask questions, explore topics and look for a consensus. No, I only made statements and voiced my opinion. It got so bad that, during a course where I was specifically told to ask questions and mediate, I gave up because something happened in my group about which I had a strong opinion. I felt the incredulous eyes of course director boring into my back “what the hell are you doing?”, but I couldn’t care less. I’m so much different now. I ask question upon question. How is … doing? Why? Would you? May I? I do nothing but ask questions. Views and opinions are too much effort. I’ve learned my lesson. God, can things go back to normal now?


I think if anyone should get to whine, it should be me. But I don’t. So, I would love to tell everyone who is physically and mentally sound and doing well: “Count your blessings.” Oh jeez, here I go putting opinions out there again.


We visited Berlin for five days over autumn break. We slept in a hotel that wasn’t adjusted for handicapped people, but it did have a handicapped bathroom in the hall. Still, we knew that the rooms would be spacious and the food would be overcooked, perfect for pureeing. Still, going on holiday is an adventure every time. Will the beds be alright? Will the food be pureeable? Looking back, we were completely self-supporting. I slept in my wheelchair with no issues and the shower seat we had brought served just fine. While the hotel didn’t serve any big bowls of vegetables, they did serve me perfectly pureed food. It’s nice to know that there are myriad cities that have these kinds of hotels.

With Hein as our navigator, we saw a lot. Berlin is a beautiful city. The east-west division is barely noticeable anymore. I can’t believe that was only 14 years ago. Equally unbelievable is the fact that most of the historic buildings were only restored during the 60s. A new old city. The highlight of my trip was visiting the glass dome in the Reichstag. There was a special queue for disabled people, because of which we avoided about 1.5 hours of waiting. The dome offers some beautiful views of the city. The weather was fair and the trees were beautiful and multicoloured.
The kids had a good time too, which is always a fickle thing in cities because we like to visit museums, rarely a teenager’s favourite activity. The kids like the shopping the most, incidentally. The Kaufhaus des Westen had plenty of that.

My mother

When we got back, we got the news that my mother had taken a nasty tumble on the street. She broke her wrist and two ribs and was moved to a nursing home she didn’t like one bit.
I went to visit on Saturday and I can see why she didn’t like it. Is this what the future has in store for me? I hope not.

The chair

During daytime, I’m always seated in my adjustable desk chair. We’ve even started taking it with us on holidays, it’s just that good. Because of its intensive use, it’s been through a lot and often breaks. We usually get a repairman sent to our home. I’ve tried leasing another one as a replacement one time, but the headrest was different to such an extent that I couldn’t use it. My chair has been totally adjusted to my body.

The chair’s back wheel has been acting up for the past month. It turned out that repairing it at home would be impossible and it would have to go back to the manufacturer. I would be without chair for a week and I would have to manage in my wheelchair. And my typing is so slow when I’m in my wheelchair. Our holiday to Berlin would be the perfect time to have it repaired. After a week, it was back. On the Monday after our Berlin trip we got it back, gift-wrapped and all. We opened it up, tried it out and, of course, it was still faulty. The manufacturer was highly embarrassed. I’d have to live without it for another day, as the repairman personally saw to it that the wheel was fixed properly. This has been going on for a month. Lots of hard work to get me from place to place and our hardwood floor has scratches all over it, but at least it’s fixed now. We even got a bouquet of flowers to make up for our inconvenience.