Diary August 2007


My packing list

One wheelchair, one comfortable chair, one commode, one shower seat, one patient lift and one motorised rubber boat. We’re taking three cars, two of which are vans. The only thing that absolutely has to be handicap-accessible is my bed, which it isn’t, it’s too low. Besides not having any doorsteps, the cottage was not built with the handicapped in mind. It’s a good thing we can take most of the things I need with us in the van and there’s plenty of space in the cottage. Although, for privacy reasons, our fellow travellers did need to evacuate the cottage whenever I had to use the bathroom, but they did so without any fuss. It became a routine. Hein’s cousin Adriaan drove the van back to Leiden to collect the last few amenities I needed. I couldn’t thank him enough, my hero.

Everyone brought their kids, something I’m thankful for. The more, the merrier. There were eight of us, nine one the last day, in a cottage made for six. That’s why we brought a tent. We’d told the kids beforehand to plan their own activities, but when we actually got there, no plans had been made yet. Every day, the answer to the question “what should we do today” was “shopping in Berlin!” I bloody hate shopping. To me, shopping means waiting outside or being wheeled around with nobody to talk to because they’re all walking behind me. It makes me grumpy and panicky, especially when it’s hot outside. In Berlin, we spent a large part of the day in a cafe, while the ones among us who wanted to go shopping went into town. Everytime we wanted to leave, another one of us dipped out, meaning we had to wait at the cafe for hours. It wasn’t all bad. We visited Ravensbrück Concentration Camp, which was impactful. We had long walks through Berlin, Schwerin and a few smaller towns. We canoed, read books and played lots of games.

Close one

It happened during the second week of the summer holidays. It was a Tuesday. A bit of egg salad had gone down the wrong pipe and I’d been coughing all afternoon. I thought a car ride would do me some good and maybe dislodge the salad. Wrong. On our way back from grocery shopping, we hit a bump and some mucus got stuck in my throat. I was fighting for air and asked Hein to pull over. Usually, standing upright helps get the phlegm down, but it didn’t this time. I remember trying the “standing up” technique twice, but after that, there’s nothing.

When I regained consciousness, the whole family was standing around me looking freaked out as a paramedic applied an IV. At that moment, the second ambulance arrived, as well as another doctor. Apparently I’d been unconscious for 15 to 20 minutes, purple-faced and eyes rolling. I was surprised and still can’t quite wrap my head around it. I just let them take care of me, except I fiercely resisted their attempts to check me into hospital. My blood pressure was incredibly high, 240/160, but it was decreasing steadily.

I spent the rest of the night feeling awestruck, I still couldn’t believe it. My family was still freaking out. Only the next day did I properly realise the truth: that could’ve been it for me. All of the certainty I had was gone. We spent the rest of the holiday doing as little as possible. I had a blind spot in my field of vision which made reading impossible. Fortunately, it’s passed by now, after two weeks. I would’ve been distraught if I lost the ability to read. Other than that, I have an infected gland but the antibiotics should take care of that. Something I can’t get back is my feeling of certainty. Some nights, I wake up in a cold sweat because I feel like I can’t swallow anymore, but it’s happening less and less.

A talk

We had a serious talk with the kids, and I think it went well. Hein explained to them that I don’t want artificial respiration. If there are any further incidents like this one, I don’t want anyone to intervene, no more medical interventions. Those close to me have a right to know too. I’m glad it’s out there now.

Back home

Marjan was already waiting for us with a good meal when we got back from holiday. We’d called ahead and given her a shopping list. It took me the whole weekend to get used to being home again. It was Floor’s birthday on Monday and we had a lot of guests. Tuesday was the first normal day I’ve had in awhile. I felt more certain and relaxed again. It’s a bit embarrassing to admit this, but I like a quiet life, a regular one with as few surprises as possible.