It’s been in my front yard since Wednesday. After three days of getting used to the thing, me and my husband decided to take the scooter for a spin on Saturday. We decided to go to the shopping centre. It’s late, so if we take a big detour the chances of running into anyone we know is very slim. Through the front yard. Looking left and right, making sure the coast is clear, and off I go. Scooters have some amazing acceleration capabilities. Its top speed proved to be a bit of a letdown on the tarmac, but other than that things are just fine. At the shopping centre my husband wanted to have a go on the scooter. While he’s grazing the pavement, my neighbour suddenly approached us. Busted. On neutral ground, being seen in a more compromised state somehow feels less impactful, especially when he told me that his son was deeply impressed by the speed at which I drove off earlier. That comforted me.

My next big test: going into town. I went to the cinema with a friend. We were both a little nervous. Crossing a bicycle path proved to be the most hazardous obstacle. A cyclist was coming right for us, so I instinctively pulled the lever that would be a brake on a bicycle. I forgot that pulling the lever on a scooter makes it go forward, while letting it go makes the scooter stop. So, of course, I ran right into him. He picked himself up, swearing. I mumbled something about the scooter being new and that my reflexes hadn’t adapted to it yet. My friend gave him my address in case I did lasting damage to him or his bicycle, and we were on our way again. It doesn’t really matter whether I liked the film we saw or not. The important thing is that we went.

Lastly, we went grocery shopping with the whole family. It was already dark, but still. My daughter wanted to sit at the front, but only if she could steer the scooter. I let her, despite the fact that the accident with the cyclist had made me a bit anxious. I quickly got over it. Not much can go wrong when you don’t go too fast. It all went off without a hitch. Unashamedly, I parked the scooter in my garden.

I think the scooter and I are going to be just fine.

September 1998
Jeanet van der Vlist, Leiden

Het bericht Scooter Adventures verscheen eerst op Living with ALS.

That changed when I got a new position. At my new job computerized systems played an important role. I quickly tried to get into the jargon, so I could at least participate in conversations at work. Stuff like: extracting files, file sizes, user friendliness and modems became much easier to grasp. Practise makes perfect, after all. I learnt how to use Word, after which I wondered why I had been dreading using computers for so long.

I am 43, sick, housebound and very happy with my computer. I use the internet to talk with people from America, Australia, Belgium (even though I still don’t know how to put the umlaut on the e to spell the Dutch name for Belgium, België) and friends and colleagues from the Netherlands. I’m ordering goods online. I even correspond with my doctor via the Internet. I check my email everyday, replying to people who wrote me.

I wanted to introduce my mother to this new world of technology. We went to the attic together, where I’ve put my PC. Chairs were pulled up and my demonstration began. “Look mum, right now we’re putting in a call to a huge server.” My mother heard this and promptly asked me if she should pick up the phone and answer it. I explained to her that the computer calls the server automatically. “Now I’m going to check my mail”, I told her. “That’s a shame, I collected all of your mail from your doormat before we went upstairs. Or is the mail you’re talking about still at the post office?” she asked me. I looked into her glazed over eyes and suddenly saw the pointlessness of this endeavor. Pro forma, I finished my demonstration with a test email to my husband, but the time for explaining the process is over. I shut my computer down, after which my mother and I had a nice cup of coffee.

I’ve already tried explaining the usage of pagers and fax machines to her, but to no avail. I understand why. I used to be exactly like my mother. It’s a wondrous world.

November 1998
Jeanet van der Vlist, Leiden

Het bericht Wondrous World verscheen eerst op Living with ALS.

My father quickly became used to it and was always ready to hand me a big handkerchief. I had to share it with my mother, who was even more emotional than me. It became a sort of ritual, making it more fun. Crying was abided with family present. My father was an emotional man. I remember a book he owned about the Second World War titled “The day my father cried”. The title alone impacted me greatly. Fathers aren’t supposed to cry. I have seen my father cry twice and it flat out scared me. Something terrible must have happened when one’s father cries. My brother is as emotional as my father.

My own family is far less emotional. I lose control even faster now that I’ve become sick. I cry about the smallest things, like a Dutchman winning a gold medal for ice skating, my team winning a football game or Adrie van der Poel getting out of the water after a swimming competition. In addition, the likes sad animated films, cute pedagogic TV shows or saying goodbye to my daughter who’s leaving for a week of camp never fail to make me weep. My children know the signs well: shaky breathing and pursed lips. At once, two pairs of children’s eyes bore into me. “No, mum, not again.” The children will block the TV screen, take away my newspaper, pull funny faces to distract me or look at me with judging expressions. The only way to get their permission to return to my emotion-evoking activities is to solemnly swear to not cry. In an environment like that, fighting the tears is even more important and a lot harder.

When I cry during conversation, I am met with more tolerance. My son dries my tears and tells me: “don’t talk about that, mum”. My husband’s handkerchief has been offered to me countless times. It’s a big one, like my dad’s.

I really do need to get my crying fits under control when it’s about trivial things. Recently I even cried when watching a sad scene in a soap show. My daughter immediately took action and sternly told me: “mum, it’s only a soap”. She’s right, of course. Then again, try telling that to my tears.

February 1999
Jeanet van der Vlist, Leiden

Het bericht Emotional verscheen eerst op Living with ALS.

Later I wondered exactly what is so awful about being called sweet. I address my own letters with “Love, Jeanet” after all. Am I not being honest when I do that and is it purely part of etiquette? Does receiving a letter signed with “Love, …” mean something totally different than being called sweet? I think it does. The word love means to me: “I am your devoted friend”, or “you are very dear to me.” In other words, it says something about my relationship with the recipient. The words “you’re sweet” moreso attribute the recipient with the character trait of sweetness, as if it’s some sort of compliment. It isn’t to me.

Being “sweet” sounds so vacuous, so utterly self deprecating, so unassertive. What is “being sweet”, anyways? A child who’s always quiet, playing nice, not making any trouble. A subservient woman who never complains. A man who’s… No, men aren’t supposed to be sweet. That would make them soft. Sweet always refers to someone who doesn’t bother you at all while helping you with whatever you need, without complaint. This may all sound very noble, but I’ve always been averse to it.

Never, in my whole life, have I wanted to be sweet. Call me pithy, catty, critical, chaotic, creative, bold. While some of these attributes are less than positive, I feel more at ease being called them. They mean something. They shape me. They keep me in motion. In fact, they bring life to the things I’ve pursued my whole life: acting, doing, changing. Maybe they simply tell the outside world “This is me, and I am here!” To me, this is incompatible with being “sweet”.

After I die, never say “she was sweet”. I would be spinning in my grave. Anything is better than being called “sweet”.

P.S. Huge confusion after I read the book Conversations With God, which states that we are all lovely and sweet, even having been put on earth to remind us of this. And yet, I still don’t want to be sweet. I may have to consider changing my attitude. Lastly, I don’t mind being called “loving”, even if I may not necessarily agree with it.

February 1999
Jeanet van der Vlist, Leiden

Het bericht “You’re sweet” verscheen eerst op Living with ALS.

Nine (or maybe ten) months after we moved, Floor was born (at least we lived in a place surrounded by hospitals). It would transform our entire perception of the neighbourhood we lived in. You couldn’t get us out of the park if you tried. Floor loved going for walks and if we so much as slowed our pace, screams would emanate from our big black pram telling us to keep moving. We walked the paths of the park until they were etched into our brains. We became regular customers of the park’s tea parlour. When Ward was born our usage of the park only intensified. It became clear to me that our neighbourhood is best enjoyed in company of children.

I turned 40 and celebrated it, fittingly, in the tea parlour. Still, with the children getting older, we went to the park less and less. Me and my husband aren’t runners and we don’t have a dog, so there wasn’t much reason to visit the park. That is, until I got sick. I had a lot of time on my hands and a beautiful wooded area closeby, so what was stopping me?

Everyday I find some time to visit the park. Mainly for the tea parlour, but the walk there is as pleasurable as the tea. I use “walk” symbolically, because I’m confined to a wheelchair or a scooter these days. These modes of transport did make me rethink the park’s paths, which were still burnt in my memory. Sometimes I go scootering through the woods with Ward, to the amusement of our fellow park visitors. In the tea parlour I’m greeted like an old friend. Without me even having to ask, a glass of orange juice with a straw is set on a table for me. How I do love routines like this. I have grown to enjoy living in this neighbourhood.

September 1999
Jeanet van der Vlist

Het bericht The Park verscheen eerst op Living with ALS.

Even before we’ve left the harbour, Floor wants to jump into the water. We manage to keep her from jumping for a little while. After half an hour, we dig into our first treat: cheesecake. We’ve brought a whole suitcase of provisions; sandwiches, cheese, eggs, salad, chicken drumsticks, grapes, crisps, toast, beer, coffee and wine. Apparently we’re not the only ones. All of the boats we see along the way are marked by consumption. Cans of beer are cracked open and wine is served in cups from bottles and coolers. The Netherlands on a day off.

The kids are having the time of their lives. There’s a small compartiment in the bow of the boat that fits four people. The little trap door leading to it opens and closes a hundred times. They play out scenes from Titanic on the bow. They swim behind the boat, being dragged along on a length of rope. The bridges we pass have to be raised manually, so before you know it there’s a huge commotion on the bow of the ship, because everyone wants to help raise the bridge. Only our friend, the captain, stays at his post. Everytime they disembark, the mooring is completely ignored, to our captain’s annoyance. Every bridge is a different beast, a new adventure.

Our whisper boat gets overtaken on all sides by motor boats, so the advantages of having a quiet vessel are few. In one of the very few waterways where motor boats are prohibited, we immediately spot a bird of prey above us. The kids understand that this is something especially reserved for quiet boats.

We lose a mooring rope, which Floor is more than willing to bring back to the surface. We almost get stuck somewhere. The gentlemen among us decide to “release” a day of cola and beer overboard. This day is exactly what a day on the water should be like.

September 1999
Jeanet van der Vlist

Het bericht A day on the water verscheen eerst op Living with ALS.

I’ve accompanied my boss on international business trips twice now. His reasons for making these trips were skewed in favour of pleasure, rather than business. Not for me. While we were in Paris predominantly to have a great lunch (in the brasserie where Sartre and De Beauvoir used to take theirs), I just had to visit every Parisian phone shop. I did the same in Prague. While my boss was spending time in the casinos, I was readying myself for the next day. No, other countries are wasted on me. In the plane I keep hearing children’s voices and whenever they’d say “mama”, I’d get homesick.

In my time off, however, an entirely different side of me comes to light. I may start exhibiting some Burgundian traits. I highly enjoy cycling, but what comes after (sitting down at a cafe, having some cool white wine and some crisps, or sipping coffee with a dash of cointreau on a beach terrace) is equally as important. And what would playing tennis be without spring rolls and white wine? Or hiking, without the rewarding taste of a fresh salad? In short, I stay active without losing sight of the finer things in life.

Now that I’m sick, both sides of my psyche come in handy. My brown-jacket mentality keeps me off the street. It means that I always have a plan. Creating a website, becoming editor of a bulletin for the LeShan Foundation, making newspapers for the kids, making scrapbooks, writing shopping lists, et cetera… The other side of me, my blue-jacket mentality takes care of the things I enjoy; going on holidays, organising leisure days and, of course, visiting lots of cafes.

Maybe I’m a brown jacket with blue lining.

September 1999
Jeanet van der Vlist

Het bericht Bon Vivant verscheen eerst op Living with ALS.

My last few jobs have all been results-oriented too. As a formula manager for Primafoon, I was responsible for lots of in-house organisation. Even now, five years after I left, I still find old relics from my Primafoon days. Recently, when I was in hospital, I saw a Telecenter carousel, a little corner where one can use a telephone and fax things. Once, I stood at the cradle of the concept for the carousel. My final job had me improve employee mobility. There was organisation galore; developing campaigns, mobility shops and job databases.

Even during my sick period, I am inclined to evaluate myself in the same way. I’m proud of my homepage, my newsletters, the musical I wrote, our journey through America and the book I wrote. There’s still a little voice in the back of my head telling me none of it matters. God and your peers don’t judge you based on how hard you worked and tried, but based on if you had decent manners. I have to admit, my manners have declined a tad. I’m definitely not a people’s person. All that motivational coaching stuff is lost on me.

Just let me take care of all that other business.

October 2000
Jeanet van der Vlist

Het bericht Other business verscheen eerst op Living with ALS.