Christmas break is like winter hibernation; we go to bed late, sleep a lot and wake up in the PM. Floor especially is a huge sleepyhead. The weather is fitting, too; the Netherlands is covered by a grey rainy blanket. It truly is December. We barely had any friends over, spending most of our time together as a family. We weren’t idle, either. We saw Oliver Twist in The Hague, Floor did A Christmas Carol which was beautifully executed, we celebrated Christmas with friends and family and spent our days playing games and lazing around.
My mother visited us on New Year’s Eve which was cozy, we played Burro and she kept losing. The game is absolutely mystifying to her. We counted down into the new year together: 10, 9, 8, 7… I got emotional, but just for a second, after which I managed to keep my composure. We threw on jackets and went outside to light some fireworks. Our neighbours came over to wish us a happy new year. Everything went swimmingly. Our street was filled with the sounds and the flashes of fireworks. It’s been years since we celebrated New Year’s at home and I think I like it this way. After one o’clock a few friends came over while we were still outside, admiring the fireworks show. We sat at the table, playing cards, eating spring rolls and croquettes. At 3:30 we finally called it a night. My mother had thrown in the towel already and had gone home. A good old fashioned New Year’s Eve.
Breakfast was served at three the following afternoon. We spent the rest of the day watching old Dutch tv programmes and musicals together (some of them were even in black and white). Then we played Risk, but with our own rules. We played a lot of Risk over Christmas break.
After that we took a midweek trip to the Veluwe with Sander and Carola. Swimming everyday, going to the zoo (which had just revealed their new ocean exposition), visiting Zutphen and celebrating Cato’s birthday. Our cabins were very close to one another, close enough to see each other through the window, meaning we knew exactly when it was time to wake up (late, more often than not) and when it was time to eat breakfast. On the last day we went to visit the “Hidden Village”, a settlement created by people who went in hiding during the Second World War. The end of our holiday was upon us. We didn’t waste it. Not like hibernation at all, actually.

My car park

In June of 1998, when I’d recently been diagnosed with ALS, I got my first set of wheels: a foldable wheelchair. We immediately put it in the attic, where it gathered dust. Stupid. It’s only later when I realised how much I impeded my own freedom by not using all the tools I was given. I desperately clung to my own independence. The scooter was a good compromise for me. I could decide where to go myself, even though my own timidity and pride were still hindering me. It took me six months to work up the courage to go to a supermarked on it. Now though, my arms are getting to weak and heavy to steer the thing. I’ve employed Ward, who sits on my lap and takes care of the steering. I think he takes corners too wide and ought to slow down when there are bumps in the road. I’m no stranger to screaming whenever Ward drives me around. Soon I’ll be giving up my scooter. Another chapter of my life comes to a close.
In June of 1999 I got a senior chair: a height-adjustable desk chair on wheels. The idea is to let me shuffle my way around the room using my legs. I prefer to be carted around, but I’ll shuffle if I have to. The chair helps with standing up, the adjustable height is nothing to sneeze at.
I’ve had an electric wheelchair since December. I didn’t need it quite yet, but we saw for how long some people have to wait for theirs, so we decided to act early. As it turns out, we overestimated the time it took for the chair go get here. It looked tiny in the showroom, but when mine arrived it turned out to be a mammoth. It’s been put in a corner near the front door, because I still prefer my senior chair when I’m in the house. There it’s been turned into a storage space for old newspapers and dirty laundry, which keep piling up. I can’t get used to it (yet). It’s a bit too much right now. Floor and Ward have taken to riding it around the living room, while at first they avoided the thing too. Maybe it’ll find more acceptance later on. Apparently, love/hate relationships aren’t exclusive to living beings.

The first normal week of January

Sometimes it’s just one of those weeks. Slow, uncomfortable, flu-ridden amd requiring some real determination to get things done. It’s not like I wasn’t expecting it. I always have to get used to not being surrounded by festivities and family after the holidays. Weirdly, the moment the festivities were over, lighting candles became a lot more rare. Luckily, Floor still found the time to spruce things up a bit after she returned from swimming practise.
It wasn’t all bad; I received replies to my Christmas letter, we had game nights instead of playing bridge and the kids and I went to see a children’s show in the theatre. We hit the pub after that, despite the fact that people have trouble understanding me. At 10:30 a barman kindly asked us to call it a night. Guests were complaining about our teenage daughters, who were sitting at the bar without adult supervision.
I don’t shy away from everyday activities as much as I used to. Things I couldn’t imagine myself doing in a million years half a year ago now feel almost routine; going to the pub, grocery shopping at supermarkets and visiting open houses at high schools with Floor. It looks like six months is the expiration date for shame. The sensation of shame is a ridiculous one, but everyone feels it all the same. For me, it was the shame of meeting people and not having the words to greet them. Being unable to do anything other than crack a vague smile. Recently though, I’ve just stopped caring.

Down to earth

I’ve always been down to earth and still am today. I know of many people who became much more spiritual during deep personal crises. I’ve looked for that same spirituality, but it just doesn’t seem to stick. I’ve started reading “A Course in Wonders”, a book about basic spirituality on which many other spiritual guides are based. It’s not much of pageturner. Sometimes I’ll read a line two or three times before I realize that it’s the same one. I have started doing the exercises the book outlines, which are doable. A small part of me is still hoping for a miracle. The following quote from a fellow ALS patient describes my feelings perfectly:

“My friends are very supportive, but they often ask “What about miracles?” “Why haven’t you gotten one yet?” My reply is: “Often the miracle is not a cure or healing, but the ability to deal with life and the experiences you are having in day-to-day life.”

I enjoy discussing and reading about spirituality, even if I don’t subscribe to it. I pursue more earthly delights. I feel almost childishly excited for fireworks, Christmas cheer, going to the pub, etc. Physical possessions are the only things I think I could do without. I barely buy anything anymore. Doug, my American role model, keeps diaries full of acceptance, retro- and introspection, forgiveness, apologies and thankfulness. He feels like he only found his purpose in life after he was diagnosed. But me? I’m still so… me. I’m content with that, but I have come to the realisation that I could be a bit of a cretin (and still am, sometimes). Oh well, it’s a part of who I am. To told me that, in Eastern philosophy, a person is seen as nothing more than a “mass of bubbles”, which puts everything in perspective. I’ve got a knack for that. Sometimes, one has to take a few steps back, look at themselves and say “really?” My mother is the perfect teacher in relativisation. After three attempts at deciphering what I’m saying, she’ll suddenly get it and say “why didn’t you say so earlier?” I’ll grumble when the pieces of bread she feeds me are too small. Whenever I get too self-absorbed, I’ll just take a step back, look at the situation and think: “there are worse things in the world”. My mother and Floor are the only people who talk to me that way. In fact, Floor once pushed my wheelchair to the front door and told me “if you want to go for a walk, then walk,” because she didn’t feel like walking herself.

Choosing a high school

It’s showtime. We’ve visited two schools already, where we attended information days. Both schools are doing their utmost to draw in children. For me it’s an emotional ordeal, a bit like when Floor went to daycare for the first time, or her first day in kindergarten. It feels like you’re abandoning your child in an unknown place, with the hopes that they’ll take good care of him/her. Oh well, it had to happen someday. Strange thing is, dropping off your second child is much easier somehow.
I need to be carried around whenever we visit an information day, wheelchair included. My two assigned “carriers” are becoming more skillful by the day. We usually meet outside the school. One of them told me: “one more information day and I’ll be able to carry you by myself.” I was even lifted up to the second floor, with the help of a PE teacher. Some parents are unaware of my illness and try to chat with me. I just keep smiling, nod at Hein and make a gesture as if to say “ask him”. It’s not much of a problem. Yesterday we had a two hour long roundtable with other kids’ parents. I loved every second of it. Talking with other parents about our kids may just be the thing I’ve missed most.

January

January has almost passed. It’s been a breeze. The Veluwe took a good chunk of the month away. Last week our house was filled with guests and my schedule was full of high school visits. Floor got sick this week, so in short: I can’t complain about monotony. I’ve also been writing a family periodical for Lia’s 75th birthday. It makes me content. Everyday people pitch in with ideas and stories sent in by email. It does mean that I have a deadline to make, so luckily I don’t have to write all of it. Some of the contributions are really something. The most beautiful one is a poem inspired by the works of Martinus Nijhoff. I once recited Nijhoff’s poem “De appelboom” (the apple tree) at a wedding. Here it is:

Herinnering
Moeder weet je nog hoe vroeger;
Toen ik klein was, wij tesaam
Iedre nacht een liedje, moeder,
Zongen voor het raam?

Translation:
Memory
Mother, remember back
when I was little, we
used to sing a little song, mother,
in front of the window?

Medical intermission

We talked to the doctor about resuscitation and all of the scenarios that could play out in case something goes wrong. I was wholly set of nocturnal artificial respiration, thinking it would be a fairly simple medical procedure. It turns out I’d have to stay in a clinic in Arnhem for a week. I hate being away from home and I certainly don’t like my body being tinkered with too much. I’ll have to think about it some more. Luckily, blood testing revealed that there’s no need for me to stay at the clinic just yet. Of course, the feeding tube was brought up. The doctor seemed a bit miffed that we hadn’t followed his instructions and made an appointment to have it installed right away. Still, it was a good talk. Hein and I evaluated the talk after we got home which always helps. The best part of our doctor’s appointment was when the GP said that he’d “like to see Jeanet stay with us for a while longer”. He also noticed that Hein talked about “our” medicine intake, with which he meant “my” medicine intake. Hein is getting quite apt at so-called “nurse jargon”. The next day he told Ward to hurry on the toilet because “we” needed to use it too. We laugh about it, which is the most important thing.

Compassion

Floor was ill and I would have loved to take care of her: make her some freshly squeezed orange juice, peeling an apple for her, etc. In reality it’s the other way around. Despite her being sick, she takes care of me: adjusting my seat, pouring me tea and helping me in the bathroom. Even with that last one I trust her completely, despite her slender build. Floor is not made just for caring for me, she takes care of her own needs too. When it really matters, though, she’s always there to ask if I need help. She really puts feeling into caring for me. I have a splendid daughter.

Het bericht Diary January 2000 verscheen eerst op Living with ALS.

Ward received a thank-you card from my ex-colleague Jan for acting as a translator whenever he couldn’t understand what I was saying. Ward had to constantly pause and resume his video game, for which Jan apologised. I sometimes forget that, despite all of the external help I get, I rely the most on my family. Last Saturday Ward and I had the house to ourselves while Hein was out shopping. Ward wanted to play outside and asked me if he could. “Of course,” I told him. “But who’s going to turn the pages of your newspaper?” he asked me. “You know what? I’ll pop in every once in awhile to see if you need anything.” Detecting and solving a problem in a matter of seconds. 8 years old and already a problem solver. I have a splendid son!

Sleep

Lately I’ve been going to bed late, way too late. I’ll notice the following day. Over the course of the afternoon I’ll crash. When I do, I usually take a nap by resting my head on a pillow on the dinner table. It doesn’t matter how noisy the room gets, I’ll sleep through anything. After about an hour, I’ll wake up, all rested up. As a result, I can’t sleep at night and thus, stay up late. Sleep is a fickle pleasure in itself. Every night since I got sick has been marred sudden awakenings. Stretching my stiff legs usually helps. Turning myself on my side in bed has become difficult since I can’t exert my arms anymore. For instance, I can’t adjust the covers when they slide off me. It wasn’t a big deal during the summer, but when it gets colder turning in bed turns into a real chore. I usually wake Hein up. The turning itself has become harder too. Sometimes, my head is too limp to turn the same way as my body, not to mention that my arms have gone from tools to obstacles. They’re always in the way. It doesn’t help that I often wake up because of my cramping legs. Put those together and you’ll have a recipe for an awful night’s rest. I have discovered that a small tablet of Valium helps with my muscle problems. It makes it so I have to shift less, meaning Hein can get some sleep too. It is, however, just a drug. Luckily, when we do wake up at night, we’re quick to fall asleep again. Never any nightly spats, for as long as I’ve had ALS.

The page-turner

I haven’t been able to read a book since the summer of 1999. I’d heard about a machine that could turn the pages for you, though, and I was very interested. I’d already had a demonstration in november. The sales representative proudly told me that this machine was the best one on the market at that time. Soon though, it turned out that the machine was only suited for hardcover books and only really worked with well-read library books. The demonstration was a fiasco. Pages were turned by the dozens or not at all. Magazines were a complete disaster. None of the ones we took were of the format that the machine was made for. Without an ounce of shame for his product, the sales rep told us the price: 8000 guilders. “Don’t worry though, your healthcare covers it.” What a fraud. No thanks.
My occupational therapist found a different supplier and by the end of January another demonstration was scheduled (most appliances for disabled people are sold door to door and since most of the salesmen live in the easternmost part of the country, those salesmen have to drive quite a long way to get to me. So much for healthcare coverage). The salesman installed the machine and got to work. It was a large, solid-looking machine, mostly made of English mahogany, with a large suction cup attached. Every page was individually sucked up and turned with a small electrical arm (not too quietly either). Despite the noise, the machine worked perfectly. Price tag: 3000 guilders.
Floor and Ward watched the demonstration attentively. As soon as the sales rep had departed, they bombarded me with questions. “Mum, are you really going to buy that behemoth?” “Where will we put it?”, all while Floor imitated the machine’s noises. Admittedly, the thing was quite noisy. I still have my doubts. It’d take up lots of space, which experience tells me I’m not going to use. Last night we came to a conclusion. The kids, who were against the purchase, promised to stay on as my trusty “page-turners”.

Why?

Every human has their own quirks. I, for instance, hate the sensation of sopping wet washcloths on my face, like to sleep with one arm above my covers and prefer to blow my nose in unfolded handkerchiefs, one nostril at a time. Nothing wrong with that. These things didn’t use to be a big deal. When you’re wholly dependent on someone else, though, communication is paramount. Of course, the inevitable question gets asked: “why?” That’s a good question. My answer is usually: “I don’t know, that’s why.”

Amsterdam

We visited Amsterdam on Sunday. I hadn’t been for about 2 and a half years. Back when I was a small-town girl I used to visit the big city about three times a year, on day trips. All of the memories of those well-spent days came flooding back on Sunday. What a wondrous worldly city, Amsterdam is. For the kids we had planned a visit to Madame Tussauds. I just wish we’d gone to Hotel Americain for a drink. Too bad I had a runny nose for the entire visit, it didn’t make me look particularly appetizing. I’d like to return to Amsterdam sometime during Spring, without the kids.

Homepage

This February my web page was visited more than everbefore. Today is the 17th of February and I’ve already had 700 hits and even more traffic. Complete strangers comment on my page and I love it. Maybe it has something to do with my explicit request to leave a reply in my last diary entry. A surprising number of replies is from Belgium. Most correspondence I get is from people who are close to ALS patients or work with patients. I haven’t had direct contact with a PALS (Person with ALS, good wordplay) yet. Apparently getting online is still a big step for most of us.

Lucky Letters

I had a group of ex-colleagues over this weekend; the CM (consumer market) ladies at KPN (my old telecom company). We used to be so heavily involved in Primafoon and the like, but nowadays only one of us is still employed at KPN. I really liked our little reunions because we were all so vastly different. The directions our lives took after KPN reflected how varied our group was. There hadn’t been a meeting after my diagnosis. I was pretty nervous, but then again, so were they. Being confronted with my degeneration can’t have been fun for them. They arrived at 8 o’clock sharp. I was sat at the dinner table, laptop at the ready so the guests could read along. It was like a party game. Everyone tried to predict what I was going to write next. They didn’t do half-bad. Sometimes I’d overzealously try to speak verbally, but the response I’d get were three confused looks and fervent guesswork about what I was saying. At the end of the meeting I got the biggest compliment of the night. One of my colleagues told me that, despite everything, she thought I was remarkably ordinary. Strangely, everyone expects you to turn into a sad wreck when you have a disease like ALS. Let me tell you once and for all: that’s all a load of projection. I had a delightful night. Hein, meanwhile, was desperately curious about my colleagues and their lives.

The musical

It’s finally in: the concept for Floor’s 6th grade school musical, written by her teachers. I immediately started working on it. I love being creative and contributing to projects. Right now I’m eagerly awaiting my script’s reception. I hope it’s positive. It’s supposed to be a Westside Story-type play. It kind of reflects reality, because 6th grade is divided in two very competitive factions. The only real problem I ran into was that the teachers wanted the humor to be absurdist, something I’m not at all good at. It’s not my kind of comedy, not to mention that is has to be executed very well to actually be absurdist. I hope it doesn’t show in my writing, because I’m really looking forward to seeing it on stage. I’m already visualising it. Luckily, the next day I got the go-ahead to write the rest of the script.

The Sixth Sense

I’ve been getting a lot more messages from people who want to come visit me. People I haven’t talked to or seen for a long time. Why? Is my webpage working its magic? Did people just need time to adjust to my illness like me? Is it because I’ve become more outgoing? Is it my recent surge in email activity? Or, a small unwelcome voice tells me, is it because people think to themselves “I’d better visit Jeanet soon, before it’s too late”? I reply to them nonetheless, but how jovial my response is depends on my mood.

School visit

I haven’t been to a school during school hours since my diagnosis. Last night, Ward’s school had an exposition of its students’ creations. This year’s theme was fairytales, sagas, legends and myths. I was most excited to see what Ward had made. Luckily, his classroom was relatively quiet. Floor was cast as Sleeping Beauty in a play, for which I was equally excited. We made our way to the school’s main building. It was absolutely crowded. At the entrance we ran into Tiddo, Floor’s teacher. He told us that Floor had aced her finals. It was a bit overwhelming. I burst into tears. Nonetheless, we took the stair lift and watched the play, but I felt suffocated in the crowd. I don’t know what to think of last night. It was a big personal victory, but the only thing I truly enjoyed was Ward’s exposition.

Het bericht Diary February 2000 verscheen eerst op Living with ALS.

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.