This year we went to Limburg on spring break. We rented an actual mansion in Gulpen. Nine bedrooms, a lounge area, a bay window with a stunning view of the hills, not to mention the tennis court. We felt like royalty. The house wasn’t very wheelchair accessible, sadly. We managed just fine, though. I had a sink in my room and we’d brought our own raised toilet seat. The bathing facilities weren’t suited for me, so every morning I was hand-washed by Hein. Other than that, the location was perfect.
When I wake each morning I decide…
This can be a good day or a bad day – my choice.
I can be happy or sad – my choice.
I can complain or I can cope – my choice.
Life can be a chore or a challenge – my choice.
I can take from life or give to life – my choice.
If all things are possible,
How I deal with those possibilities is – my choice.
Steve Shackel April 2000
——————————————————————————– Continue reading “Diary May 2000”
A few days ago I received an email from one of my ALS correspondents. He is famously level-headed and has a pleasant yet aloof writing style. This time, he sent me an email he’d written to his niece in which he compared our disease processes. I’m worse off than he is, which he illustrated with a number of comparative examples. Continue reading “Diary June 2000”
I want to sleep
From the end of November till the first week of December I couldn’t fall asleep once I got downstairs and wanted to continue sleeping in my chair. This usually happened around 4AM, so I really could have used some more sleep. It made me feel hopeless. Every hour I’d wake Hein up because I kept panicking. Or I’d be behind the computer at 4. Our GP prescribed us a different sleeping agent, which I’ve started taking at night. Because of it I’ve started sleeping for six to seven hours a night. The tradeoff is that I keep wanting to go to bed earlier. I keep waking up at 1:30AM feeling short of breath, despite the fact that I’m using an oxygen mask. I’m using more oxygen at night than everbefore.
Urinating was getting more tiresome by the day. I’d often panic at the thought of it. Panic would hit the hardest whenever I’d have to get back in my chair, with my arms still dangling in the stairlift. In those moments, I’d be gasping for air. Within a week, I had made up my mind and got a catheter. All I have to do to urinate now is twisting a valve on a small bag on my leg. It still gives me the feeling of relief it did before, about 7 times a day. I strongly believe in “costs vs. benefits”. Changes have to be made if the current situation is too costly. My helps always dreaded scaling the stairlift on their own. Now though, urination is just a matter of twisting a valve.
On the evening of Saturday, December 29th, 2007, Jeanet passed away, surrounded by family. She had lived with ALS for more than 10 years.
Most people I talked to were skeptical of my planned trip to the French Riviera. “Honey, are you sure it’s a good idea to go there? Think of the heat!” my mother told me. Email correspondents told me I didn’t know what I was getting into, and even Marjolein suggested we spend our holiday at home. The thing I dreaded was the journey itself, not the destination; a wooded little hamlet by the Mediterranean Sea. A convenient article published in the newspapers three days before departure alleviated some of my friends’ worries about my holiday. It said that the Riviera had plenty of Dutch speaking specialists who would be able to help me, would the need arise. I was able to leave with even fewer worries. Continue reading “Diary July 2000”
An open question is a question that’s unanswerable by a simple “yes” or “no”. A real thought-out answer is required. Open questions are useful in conversation. All the questioner has to do is nod, summarize and think of follow-up questions, all while the interlocutor talks away. I learnt this in psychology. By now, I’ve started hating open questions. Too much work. I prefer closed questions, yes-or-no questions. Often, people ask me a closed question, like “Would you like coffee?” but I’ll take too long answering, so they make it an open question by adding “…or tea?” It causes some confusion, so we start from the top. Confusion whilst not being able to speak is tiring. It can really piss me off. “What a bunch of jackasses”, I’ll think, before realizing that it’s me who’s screwed up, not them. Continue reading “Diary August 2000”
Every Dutch ALS patient recently received a request to participate in a nationwide study on the effects of creatine on muscle deterioration. Earlier studies abroad had failed because there weren’t enough ALS patients willing to participate. They have a point. Why would you risk the chance of getting a placebo when creatine is so readily available? In short, I’m getting the sense that this is a case of “what country’s patients are most willing to be medical guinea pigs?” Continue reading “Diary September 2000”
Recently, I had gotten the idea in my head that Ward was distancing himself from me. Not anymore. He has gotten more eager to help and he has gotten better at understanding me. He loves talking to me about the goings-on at school and his friends. Ward and a friend had organised a football tournament for neighbourhood kids. For one week, our front door was adorned with a registration paper where no less than 22 kids signed up for the tournament, ranging in age from 7 to 14. No adults allowed! At night, Ward pored over the team compositions, having already agreed upon a suitable refereeing schedule with his friend. Saturday was a day of great tension and excitement as Ward worked his way toward the tournament. At four o’clock, zero hour had come. The street was empty. We went to watch the tournament, but we weren’t allowed on the pitch. We could hear them having fun in the distance, though. At six, they came home with big grins on their faces; Floor and Ward’s team had won the tournament. Maybe the team compositions weren’t as balanced as advertised. Continue reading “Diary October 2000”
Last week was relaxing. Bad weather, so most of it was spent inside. My mother is sick and because of her absence on Monday and Tuesday, we had to improvise with our carer schedule. It’s a delicate system and we really ought to have hired a new carer by now. My mother feels like she’s doing me a disservice by falling ill, so she was glad to hear that we had found a replacement.
After three weeks my mother got better. My primary carer Inge and my mother-in-law took her shifts. Hein has found a new carer for Tuesday morning who is also open to filling other gaps in the schedule. Continue reading “Diary November 2000”