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”
Diary June 2000
A comparison
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”
Diary December 2007 (Final)
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.
Catheter
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.
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On the evening of Saturday, December 29th, 2007, Jeanet passed away, surrounded by family. She had lived with ALS for more than 10 years.
Diary July 2000
Cote d’Azur
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”
Diary August 2000
Open questions
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”
Diary September 2000
Creatine
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”
Diary October 2000
Ward
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”
Diary November 2000
Sick carer
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”
Diary December 2000
Sinterklaas
I’ve almost finished the Sinterklaas poems, not just mine but Hein’s and Ward’s too. I’ve taken it upon myself to write them for the others. Floor is the only one who wrote hers herself. We celebrated Sinterklaas with Hein’s family; 9 adults and 4 children. Very homey. I’ve always enjoyed writing poems and still do, even though my heart wasn’t really in it this year. I couldn’t help but laugh raucously whenever one of my poems was read aloud. Unlike most of the family, I tend to centre my poem around the recipients characteristics or funny things that happened to them that year. A bit of friendly banter is an inherent part of Sinterklaas. We didn’t go crazy this year; not too many presents, evenly distributed and the kids weren’t circling the pile of gifts like greedy vultures. The kids liked their presents and the poem ceremony didn’t take as long as I feared. Continue reading “Diary December 2000”
Diary January 2001
La Vie en Rose
My book was warmly received. The best praise I got was from my cousin Jos:
“Whenever we talk about you at birthdays, it’s mostly about the symptoms of your disease (“she can’t do this”, “she needs help with that”, etc.), because of which my view of your life became very skewed. Whenever I thought of you, I thought of someone who’s wasting away in a wheelchair. Maybe that’s why your insights on your life are that much more significant. Sure, it’s sombre at times, what with your deteriorating motor skills, but it’s largely overshadowed by your positivity.” Continue reading “Diary January 2001”
Diary February 2001
Head mouse, continued
Paul, Hein’s brother, installed the head mouse on my desktop computer. It’s much more functional. A much larger screen, a cursor that doesn’t vibrate, a more responsive sensor area for the mouse, not always having to recalibrate my mouse and audible feedback whenever I press a button, which prevents accidental double clicks. Not to mention the programs that I didn’t have on my laptop. In short: I’m content. The advantage of using the head mouse on my own computer is that answering my own mail and using the internet is once again doable. I’m more self-sufficient and I can use my PC again, instead of aimlessly sitting around. I wrote this part in 25 minutes. Not bad. This month’s entire diary is written by using the head mouse. It’s working. I do constantly forget about the dot between my eyes, so whenever I forget to take it off before bed or using the shower, it becomes unusable and ends up in the trash. Continue reading “Diary February 2001”
Diary March 2001
Floor takes a day off
Floor was pushed to her limit, what with her daily acting repetitions, having writing a book report, two impending quizzes and a sizeable history deficit. In short: time for a sick day. At 9 o’clock Floor came downstairs, pyjama clad. She didn’t change out of it that day. What she did do that day was work. Tests, reports and four history chapters on the three religions were all finished and prepared by the end of the day. I found it homely. I learnt a lot about religion and I’ll never confuse those new Eastern-European countries again. Continue reading “Diary March 2001”
Diary April 2001
The chaotic final week of March
It all began with the NRC interview and the subsequent 50 (70 by now) emails about it, plus an additional few written replies. Many old acquaintances responded, some of them from unexpected people. I love that. Complete strangers send me words of encouragement, poems, reviews, etc. Continue reading “Diary April 2001”
Diary May 2001
Borrowed time
In May, three years ago, I was diagnosed with ALS. The symptoms manifested more than four year ago and last May, my PEG was installed. It wouldn’t be a stretch to call the month of May my ALS jubilee. Statistically, I’m in the critical stage: the wrong side of the statistic; the borrowed time. According to the books, ALS gives you three to five years to live. Whether the countdown starts after the diagnosis or the first manifestation of symptoms is up in the air. As regards respiration, I’m in critical condition too. By the end of April, my lung capacity was one litre. By now, I have 30% of the lung capacity of the average woman my age. Fortunately I’m not suffering from carbon buildup. Secretly, I hope my lung capacity is a bit higher, because I get nervous during breath tests. What is more concrete is the fact I have to accept that I am truly on borrowed time. Continue reading “Diary May 2001”