Hein 50
Well, it’s done. Everyone contributed to the newspaper. It turned out lovely and pretty. Apart from that we made a song and had a quiz before we gave him his present. This weekend, Hein will go to Berlin with a friend. The birthday party was a huge success. We’ll be looking back on this one for a long time.
I find evenings like this one difficult. I can’t talk, all I can do is nod and take everything in. It couldn’t be more different than how I felt during the planning stages. I was in my element. I felt relevant again, I was in control. It’s the feeling I used to have at work.
Hein’s 50th birthday
On the night itself, I had to relinquish control. Luckily, there was a lot to see and hear. Of course, being with people who hadn’t seen me like this before was confrontational, but they probably felt as awkward as I did.
My least favourite doctor
Last month we went to Utrecht again. We always make sure to get an appointment with Dr. Kampelmacher, a nice fellow. After the pulmonary test we struck up conversation with him. His modus operandi is complaint-based, so as long as we have nothing to report, our appointments consist of some chit-chat and nothing more. Before, he’d ask to listen to my lungs, but by now he stopped doing that too. Just another thing he’d only do if we had something to report. He’s my kind of guy.
This time, things went differently. It already started when he asked Hein for a one-on-one discussion. “Mr. van der Vlist, could you come over here for a second?” (Poor Hein, I use my maiden name, which means that in hospitals, he’s addressed as “Mr. van der Vlist.) That really rubbed me the wrong way. Why just Hein? Am I not allowed to hear something? Hein found it as ridiculous as I did. I would be part of the conversation. The question was simply whether I wanted my lungs tested, seeing as I had trouble blowing into the machine last time. I didn’t. Did she want to make this decision without consulting me? What I did ask for was a blood test to check my carbon dioxide levels.
The next nasty surprise: my own doctor wasn’t in that day, but a doctor I don’t like was. Three years ago, he advised me to get a PEG. No complaints there. But against everything I value, he went over my head and made an appointment at the AMC. It was a matter of urgency, he claimed. Despite that, I had to wait 8 months. I don’t like controlling doctors. Ever since, I’ve tried avoiding him. Oh well, what could I do?
He was visibly disappointed that I hadn’t done any lung capacity tests and he asked me about my cough. I told him I was fine, while he was busy unwrapping something. It turned out to be a device that measures coughing force. It also had a very obtuse mouthpiece. Courteously, he asked if he could measure my coughing. Hein gave a resounding “no”. Following that, he read out a whole list of medical conditions related to hypoxia. By now, they’re etched into my mind. Nighttime transpiration? Nightmares? Nocturnal drooling? Morning headaches? I put my head in “shaking no-mode”. Shakiness? Pooping? Unintentionally falling asleep? Dullness? That wasn’t even the end of it. My blood pressure, heartbeat and breathing per minute were measured. He also used a stethoscope to listen to my lungs. Do you know the expression “ignorance is bliss”? It proved to be true once again. My blood pressure is very high, 25 points above average. It only made me more fearful. Because despite my talk, I’m actually terribly afraid of this doctor. I had better avoid him next time.
Children
Young kids have a certain way of reacting to my disease, or rather, my wheelchair, my drinking with a straw and my idiotic way of speaking. When my new neighbours’ kids first saw me, they said, with all earnesty, “aw, that’s so sad”. I’m often stared at at the tea parlour. Kids don’t know embarrassment. Parents do. And some parent-child interactions are hilarious. The other day, a child in the park told us: “that lady has been naughty”. I don’t know why, maybe only naughty people end up in wheelchairs? Immediately, bother parents, obviously embarrassed, said in unison: “that lady hasn’t been naughty!” Or I’d pass a child talking with their parents about me. Or parents trying to keep their child from staring at me. I used to make me uncomfortable. By now, I just smile. People can get used to anything.
A touristic day in Amsterdam
On Sunday we visited the Anne Frank House in Amsterdam. Floor made a report on Anne Frank’s diary and Ward has a book review coming up. The kids were happy to have seen it. Ward picked up a good few postcards to show in his review. I couldn’t go in, so I was parked in the restaurant. Afterwards we went on a boat tour and on a stroll through the Vondelpark. I think Amsterdam is an amazing city.