Walking and cycling has become significantly harder over the past few months. To stay mobile I decided that buying a scooter is the way to go. Even so, I’m still hesitant. It’s a big step to make. I told my young son I’m considering buying a scooter. He thinks it’s awesome. When I told him it has three wheels and not two he lost a bit of that enthusiasm, but he’s still on board. After a few test drives I’ve finally decided which one to get. It’s got a top speed of 15 km/h and has great suspension. Continue reading “Scooter Adventures”
I had barely touched a computer before I turned 40. I had one at work, but it was there purely for aesthetic purposes. I was the only one of my colleagues who was allowed to hand in hand-written texts to the secretary. It was a bit of a walk of shame everytime I did, but anything was better than having to use a computer. My work would be copied over to a computer by an intern. Usually it had to go back and forth between me and the intern a few times before all of the errors were eliminated from the text. My coworkers knew about my digital illiteracy. They would send me emails, but also sent the same messages through postage, just in case. Even my Curriculum Vitae was digitized by a friendly colleague. Awestruck, I watched him type away on the computer with great dexterity. What amazed me was his ability to switch back and forth between different windows with ease. I was utterly nonplused. Continue reading “Wondrous World”
I’m a crybaby, always have been. Whenever I see anything remotely emotional on TV or in a newspaper, I crack. First I’ll try to suppress my emotions: breathing slowly, keeping my jaw clenched and my lips pursed. Soon there’s no keeping it in, and I’ll give in and let the waterworks flow. It’s always a struggle, one I can’t win and will never quite be comfortable with. After watching Terms of Endearment I spent an entire day sporting swollen red eyes. Luckily it was a Sunday because, without fail, after the sobbing fits comes the shame, especially when I’m in public. Maybe the shame feels even worse than the crying.
Continue reading “Emotional”
“You’re sweet”, my father-in-law told me. Immediately, my inner being huffed and puffed indignantly. Sweet? Me? Never! The occasion was anything but sweet as well. I had burst into tears after not being able to properly explain myself with words. When my husband started to explain to me why that was, I only grew more irate. So, sweet how? I don’t want to be sweet. Continue reading ““You’re sweet””
We were the first out of all of our friends to buy our own house. The building checked all of the boxes: pre-war build, lots of vegetation, on a broad street in a left-leaning neighbourhood. In short, a politically and socially “correct” home. All of our friends would settle in the same kind of houses over the following couple of years. It took some getting used to. There we were, banished to the suburbs, a childless couple surrounded by families in a posh neighbourhood that would turn its nose up at where we came from. Whenever we expressed these concerns, however, our friends would scoff. What did we have to complain about? We had a beautiful house in a beautiful neighbourhood and in such close proximity to a lovely park. It wasn’t like we ever went to the park, I’d never even been to the place. Continue reading “The Park”
Today is the day. Hein has had a folder for a tour on a whisper boat for over a year, but nothing ever came of it. But now is the time, a beautiful Sunday in September. We meet our friends at the boat’s mooring place. It’s a big vessel, enough space for eight people. Before we left, I, being the optimist I am, had not thought of how to actually get into the boat. Now that I’m here though, anxiety creeps up on me again. Shakily I manage to get in the boat. I spend the rest of the trip sitting down. Continue reading “A day on the water”
I’ve always been a tad jealous of those Burgundian lifestyle types. The kinds of people who have extravagant lunches, who always know what to say even if they don’t know anything about the subject and never forget good stories; who know the right people. I’m not like those types at all. I’m famous for my overly detailed answers, I often skip lunch entirely and smalltalk is something I just don’t do. No, I’m a worker, focused on content, the results. Continue reading “Bon Vivant”
I’m a great doer and very results-oriented. Even when I was a child I was a little organisational prodigy, but the results-oriented part of me I had yet to discover. I did when I started working. After every job I completed, I was always able to point out what results I had achieved during that period. I prefer my results to be tangible. Continue reading “Other business”
In August of 1997 my left hand started acting up: I had great difficulty separating the socks I took out of the washer. Lots of strange things were happening, actually. I would fall playing football, suddenly go rigid or develop a lisp whenever I had something to drink. These symptoms manifested as early as March 1997, but I didn’t pay any attention to them due to stress at work. After being advised to do so, I visited a doctor, who referred me to a neurologist. Test results came up blank, but based on the symptoms the diagnosis was “probably MS”. Even back then, I was afraid it would be ALS. In April 1998 my condition worsened, so I was examined again. After an EMG in May a new diagnosis was made: ALS.
See, telling friends isn’t the difficult part. The real grey area is telling acquaintances one used to make polite conversation with. It doesn’t help that my voice sometimes abruptly stops working whenever I get emotional. It even happens when I’m speaking normally. I started avoiding contact and prefer someone stays by my side to assist me in case things go awry. It really impacted the kids, too. However, it’s amazing how accepting children and how well they adapt to new circumstances. Continue reading “Coming out”
Looking for help is horrifying to think about under better circumstances, or maybe I’m just prone to procrastination and postponement. Either way, there is nothing more gratifying and comfortable than actually getting the help one needs.
Yesterday we went to Welzorg – a shop for wheelchairs and other such apparatuses. No matter how dire and nasty the reason for a visit to Welzorg is, I always leave feeling excited. What got me excited yesterday was my discovery of the three-wheeled foldable rollator. I walked using the thing for an hour and a half and almost forgot that I had difficulty walking in the first place. I felt like I did three months prior. Talk about stability. I wasn’t tired in the slightest, either. I walked upright, not at all as crooked as I usually walk to maintain balance. I tried three scooters again and found that the one I preferred last time was still the best one. I’ll be getting it this week. If it wasn’t for the weather I would already have gone back into town. With someone by my side, of course, in case we run into someone. It’s called “coming out”.
Continue reading “Helpful devices”
It’s a lot to take in. Lots of sadness and shed tears, coupled with an unwillingness to face it all, but somehow life goes on, and so do new experiences that come with it.
I have known about my disease for one and a half months now. At first I fell into a deep hole. I could only think about my death and how much I didn’t want to die. I wanted to watch Ward and Floor grow up. That is in essence of what I still want. Continue reading “After the diagnosis”
I’ve been emailing a lot since August, usually spending one to one and a half hours on it every day. It makes me feel more involved; I can reach and talk to people of my own volition. Moreover, I have discovered that writing about my experiences and the things that happen in my life leaves me feeling immensely satisfied. I’ve even tried to get my articles published, but to no avail. Alas, this weblog will have to do: my very own “column”.
Continue reading “Writing and my computer”
It’s a difficult part of my life. Apparently I’m very particular about my needs. I don’t want things to move this fast. I’d like things to match my pace. A little bit less commentary on how much I’m deteriorating, I can do that myself. The contract ALS patients are supposed to sign involving their treatment (about the usage of feeding tubes, artificial respiration, et cetera) was another nasty surprise for me. I still haven’t signed it yet, and I don’t know if I ever will. On a more positive note, my first talk with my neurologist was very enlightening. In any case, I’m happy with my current GP and I’m starting to get used to the Rehabilitation Centre after a bit of a rough start. I still try to discuss my feelings and gripes about my treatment with my doctors. Continue reading “Doctors”