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.


I tried to do as little as possible in July, which is a pretty easy task for me. I cancelled appointments with the respiration lab and my homeopath because of the extreme heat. I’ve never spent as much of my summer inside as this one, not even in the garden. Even the AC was overheating. In July, we thanked God when the heatwave was finally over, while in August we prayed for just a bit of sunshine.


We spent the first half of August in rainy Zeeland. The sun did shine intermittently. We did a lot of stuff: the kids had a motor boat and Hein and Lieke had a foldable canoe, which they spent two days trying to assemble. We visited Ghent and Antwerp, as well as lots of little villages in Zeeland itself, of course. We had a constantly rotating cast of guests, boyfriends and school friends. We had a great time.

Nasal respiration

I’ve decided not to get nasotracheal intubation. I’ve always stuck to the idea that I’ll get artificial respiration when I’m ready. The thought of having to spend more than two weeks in hospital didn’t sound too appealing to me either. I have more objections. What starts with just a nose tube could turn into 24/7 dependence on machinery. I’ve heard two first-hand accounts of nasotracheal intubation, neither of which sounded very pleasant. Being nervous about getting from A to B (like from my chair to my bed), needing more meds, 24 hours of total dependence on machinery and looking like an alien (like I don’t already look weird enough). And I haven’t even mentioned what it would do to my inner discussion of pros and cons when it all becomes too much. I could just pull the plug at that point.

How is my breathing, you may ask. Last August, my blood gases were still steady. I don’t have trouble breathing in my sleep and I’m not feeling stuffy. I do sometimes feel like I’m not breathing when I’m sleeping in my chair, after which I’ll jolt awake, panting. Sometimes, my mouth opens involuntarily, like I”m fighting for air, but that only happens sporadically.


Before summer break, Carlien notified us that she’s be quitting in September. After some thorough searching, we found a pensioned lady. The day we returned from holiday, we got the message that she’d been admitted into hospital and couldn’t make it. Bummer. With Carlien’s help, I scouted all around the country, which turned up not one, but two candidates for the position. That meant we had to choose. One of them was independent, the other was part of an organisation. I contemplated for a long time. Both interviews were great. I’ve never been great at choosing and this one was particularly hard. Meanwhile, Brenda (one of my former carers) got back from Australia and was able to fill in. I was surprised at how well she understood me after all that time and who quickly she got back into the swing of things. I’m so grateful for her help in these difficult times.

Back to normal

By now, we’ve celebrated Floor’s birthday too. She turned 18 and has started at university in Amsterdam. Fresher week started very late this year. She found a place to stay for the week and even found herself a dorm. She decided to stay home for now. I’m glad she won’t move out just yet. Last week, Ward’s school year started too. I’ve had the kids to myself for the past three months. This will take some getting used to.