Diary September 1999



I’ve been getting reactions from strangers on my homepage. I get a kick out of it, but it’s a lot of work to get through, because I want to answer every question and comment. They’re from America, Canada (a Dutch expat) and from Belgium. The Internet is a marvellous invention.

Between treatment and answering questions I’ve found the time to update my homepage. All on my own, of which I’m fairly proud. I’m becoming more and more proficient with my computer. There’s finally a picture of Hein on my page. I think people were becoming a bit curious about his absence. I think it’s a great picture, maybe because it features myself when my face was a bit more expressive than it is now. I also wrote three columns. I don’t know if they’re any good (I doubt it), but they had been stuck in my head for some time and I felt like finally putting them to paper.


I watched a programme about cancer yesterday. There were three female guests, all of them suffering from metastases. One of the women said she had grown world-weary and decided to halt treatment. One of the women was a fighter, she was still young. The third one was still in treatment so she could spend as much time with her family as possible. I saw a bit of myself in every one of them.


Let’s just get all of the bad news out of the way. My lung capacity has decreased to 55%, a drastic and noticeable decline. I’m having trouble taking deep breaths and drinking the last drops of food through my straw. The doctor actually panicked a bit and immediately prescribed me a PEG, a feeding tube. For the first time, I felt like this would be my last summer. I’ve tried to avoid this mindset of finality, but this time it overpowered me. It’s a reality that one has to live with, however difficult that may be. Then again, I’ve always had trouble giving up.
I’m not looking forward to getting a PEG at all. The thought of having a tube protruding from my stomach is horrifying. Not just having it installed, but eating from it. My neurologist says it should be installed before we go on holiday to Florida. He is an expert on the subject of PEGs, after all. I’m hesitant, but Hein probably agrees with the doctor. He’s always been more concerned and comfortable with authority than me.
I don’t really want to think about the PEG. I still have enough lung capacity and I’m not losing weight. All in due time. That’s always been a motto I’ve lived by. It’s present in all facets of my life, whether it’s finding a babysitter for the kids or life-changing surgery. A solution will present itself.


We chatted with our GP again last week. They’re good talks. It’s a good way for me and Hein to talk about subjects that we tend to avoid in normal life. I’ve noticed I’m a bit of an einzelganger when it comes to processing emotions. I like to figure things out by myself. I don’t feel lonely in that, even if I’m alone. We spend most of our time on our own and I’m comfortable enough with myself that it doesn’t bother me. Didn’t Hein think I was autonomous enough to begin with? I’ve been introverted for as long as I can remember. I need my space. I like that sentiment: I feel at home when I’m with myself. Isolation is a rare commodity. Alone? Yes. Lonely? No.


I never expected to be fed by anyone other than Hein, maybe my mother. I found it highly embarrassing. In Zealand, these principles started to fade. Carola asked me if I wanted some yogurt and custard and fed it to me. She was such a natural at it that I barely minded. It started happening more often over the course of our holiday. Another preconception that disappeared during that time was the thought that I’d never eat out anymore. Two months on, I’m letting anyone and everyone put food in my mouth and wipe my chin. Even in public I’m eating with reckless abandon. On Fridays I like to eat a salmon salad sandwich at the tea parlour. Creamy foods go down easier, but tends to be more disgusting. In short, life turns on a dime. Unexpected but very welcome.
The other day I accidentally bit my mum’s finger. I’ve noticed that she’s still a bit apprehensive, fearing I’ll bite her if she feeds me again. She looks at me with an expression that tells me “don’t you dare pull that again” and quicky retracts her finger.
Every time we eat lunch, my mother and I have an unspoken competition of who eats their sandwich the fastest. She tends to win, even without knowing we’re vying for anything. I only do this with my mum because she’s a slow eater. Way back I used to do the same thing at traffic lights, seeing who could accelerate the fastest. Another one of those unspoken tournaments. I’ve always been a bit of a cretin like that. Always looking for competition, but only when I stood a chance of winning.
Last night we lay in bed and talked about school. We even arm wrestled to see who was the strongest and, although Floor won in the end, I was impressed with my own strength.


There’s no doubt about it: talking is getting more difficult. It’s especially noticeable to people who haven’t seen me in a long time. Understanding me requires concentration and context. Being nervous or afraid that you’re not going to understand me doesn’t help either. Nervous laughter just makes me upset. Please, just repeat what you do understand and I’ll fill in the missing pieces. Usually it’s a matter of getting one word right. Spelling helps, but many people don’t understand that either. You have to repeat the letters I say. The K and the B are especially hard to decipher. To make it more clear I’ll usually say “ABC” or “KLM”, but that makes it even more confusing for some people. Hein and the kids are my best translators. Sometimes I feel like I’m speaking a foreign language, armed only with my kids to translate for me.


Sometimes I get scared that my children will only remember in ill health. I don’t like that thought. I’ll think about all of the things we did together after I got sick; the holidays, biking and hiking across the country, visiting museums, etc. and think that it was all for nothing. Whenever Ward asks anything about the past, he wants to know if I could still walk back then. He asks me if I like sitting in front of my computer in a chair all day. He’s still so young. When I had just found out about my illness my neurologist told me that “being” was of paramount importance. “Being there”, specifically for the kids. One is not defined by their possessions, their actions or other superficialities. There’s something more to a person. I try to compare myself to my old self as little as possible. I’d say I’m decently successful on that front. My homepage shouldn’t be a reflection of my old “being” either. No CV, no list of accomplishments. On the other hand, I don’t want to be purely associated with ALS. Simply “being” is difficult. My ego is always hungry for more.

Why America?

When I heard I had ALS, my neurologist told me to do the things I’d always wanted to do, because soon it may be too late. He mentioned things like visiting Hawaii. At the time I was sceptical. I didn’t feel the need to suddenly do a load of things all at once like I’d wasted my life before I was diagnosed. I had lived life the way I wanted to live it. Anyway, time goes on and I’ve noticed that I really enjoy holidaying abroad. There’s an itch somewhere that only America can scratch. I’ve been there twice already and I absolutely loved it. Furthermore, it would be a great experience for the kids. I want to bestow experiences like these on them. Besides, lots of families from our surrounding go to America with their kids, as if it’s a part of their education. We also have some friends in the US, a very good friend of Ward’s and his parents. In short: plenty of reasons to go. We’re taking the kids’ grandmothers with us. Camping is not in the books for us and the Wild West is not for us either. We’re going to Florida, to Universal Studios and Disney World, a kid’s dream. I’m looking forward to it.


I haven’t been feeling well for the past few days. Very emotionally sensitive. Of all days, I always choose blue days like these to look at the websites of fellow ALS patients, which doesn’t raise my spirits one bit. Two pages ended abruptly halfway 1999 because their owners had passed away. I read what kind of changes fellow patients have to adapt to, up until the end. Always staying one step ahead of the disease, not once but constantly, always in flux, even if one is not prepared for it. Your situation never changes for the better, every step you take is a step back. I’m reminded of the words a friend wanted read out at her funeral, about life’s changes and the necessity to adapt to them. Well, ALS is the queen mother of diseases that forces adaptation, but the strangest thing about it is, one adapts with everything they’ve got. One clings to life.