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.

My home is my castle

At home, I almost feel normal. Established rituals and habits, trusted caretakers and appliances, surrounded by family eager to talk about their day. A familiar environment where I barely feel out of the ordinary. It couldn’t be any more different when I’m out of the house, especially in larger crowds. I feel abnormal; I’m unintelligible and tend to just sit around in my chair. By now, my group of friends has resolved that issue by doing bridge-drives. They’re fun gatherings during which I don’t just sit around like dead wood, because I hold my own when it comes to playing bridge. We do it once every couple of weeks. I love it.
Besides playing bridge, we celebrated my mother-in-law’s birthday this weekend. Not looking forward to it would be an understatement. Being seen like this by a bunch of people I barely know is awful, I feel especially vulnerable when we enter. Please, let everyone act normal, I pray to myself. Let me just watch from the distance for a bit to prepare myself. No such luck. I was surrounded by people and immediately, every single person there feels the urge to whisper some soothing words to me. I hate it. People, please don’t act like that. Leave your unctuous, intimate consolatory conversation at the door, please. I really can’t take it. Once I was properly seated, things went better. Quietly, I could take part in the festivities too.

A message from the past

I got an email from one of my earliest friends. We were friends since we were three, a friendship that lasted till we were twelve. Since then, we hadn’t spoken for thirty years. Suddenly, she contacted me with the sweetest mail, reminiscing about our time together. She described it so vibrantly, it made me laugh. It made my day. Oh, how I do love email and the internet.

Writer’s school

I started doing a writing course, by email. Every week we receive an assignment. I have to think of characters and describe them. Every assignment has a deadline. It takes some getting used to. Before, I was always free to plan out my own day, but now I’m “forced” to do something by an external force. Some of my fellow course participants also suffer from speech impairments. Eventually, we’ll have to write about communication among our own characters. We even have a real teacher. I’m curious to see what’s next.

Newspaper interview

I’ve busied myself with answering emails from people with questions about my book following an article about it in a newspaper. I had gotten in contact through one of my neighbours, who is an editor for NRC, a newspaper in the Hague. I’ve had my doubts about publicity like that. Is my book too private for strangers’ eyes? Will I be able to handle the public response? Will my kids? Then again, there are 2000 copies of my book and the thought of them disappearing in a shredder is not very appealing. I’ve sold 150 of them so far. In short: I could use some publicity. Thus, I’ve started working on getting as many of them out there, which is a chore in itself. My sister-in-law Monieke is in charge of sending copies to medical libraries and clinics. Any other suggestions for distribution would be most welcome. A photographer came by yesterday. I had a picture taken of me on my own and with the kids. Most of the pictures were of the whole family, but Hein is still on the fence about appearing in the papers. The article will be printed in March. I have full insight in the article and I’m allowed to pull out at any time, in case the article is too personal. I want a positive article about life with ALS, without dramatic captions and such.

Nighttime worries

I’m not getting proper night’s rest. I fall asleep like a log, but after three hours or so the tossing and turning and the leg-stretching start. My right leg becomes rigid and finding a comfortable position for it becomes difficult. That’s when I wake up, often without being able to sleep again that night. Sometimes I panic, legs sweating. Sleeping in has become a distant memory. After 7 or 8 hours, I can’t stand being in bed any longer, even when I’m barely rested. Usually I sleep for an hour later in the day. It must be so frustrating for Hein. He has to work in the morning and can’t really afford all of my nocturnal escapades. During weekend mornings I’m downstairs while Hein gets some well-deserved rest.

Floor and the tube

Floor feeds water through my tube twice a day. I think she found it an interesting process. One day, she asked me if she could try operating the PEG. She could, of course. Since then, she has busied herself with watering me. It’s a big responsibility for a twelve year old, maybe too big. Either way, she does it carefully and with gusto.

Oleta Adams

My sister-in-law Monieke gifted me a CD by Oleta Adams, signed by the singer and addressed to me. I had never heard of her and it’s not really my style, but I really appreciate the gesture. My new help on Mondays and Tuesdays, Marja, prefers it over U2 and Anouk. Right now I’m very taken with the Buena Vista Club’s latest album and its beautiful female vocals.

Ameland

Going on holiday is anything but stress-free. Before leaving I worry about going to bed, being able to sleep, getting up and cleaning up, hoping the day of departure itself will be fine. It wasn’t. When we arrived in Ameland I felt sick. Was it the journey? My worries about the journey? Had I actually caught something? I wasn’t sure, but decided upon a preventative antibiotics treatment. My general practitioner prescribed me an antibiotics course precisely for travelling. I appreciate that, because I like having assurances. The hotel we stayed at was perfectly suitable for me. The family was most impressed. There was an adjustable bathtub and a very versatile stair lift. Despite the glowing recommendations from my family, I didn’t use the bath. It’s too much. Too… invalid. It doesn’t fit my own self-image, still falling hopelessly behind reality. Going to bed wasn’t too bad. I slept better than I expected, no mishaps for the whole duration of the trip. I only woke Hein up when it was time to wake up. We didn’t have to worry about cooking. Every evening we got three courses, easily mixed with sauces and gravy. I had no problems eating.
What we actually did on holiday? We went on two wonderful hiking trips. Despite the fact that we visited an especially flat part of the country because of my heavy wheelchair, it was still a sweaty ordeal to get me over all of the sand dunes. We went to see the lighthouse by night to see the light sweeping the island. My family made the 58 metre climb to the top of the tower. We went seal spotting on a boat and saw more at least a hundred of them, loafing around on shoals, some of them up close. In the museum we read about how, until recently, rescue boats were pulled into the sea by horses. One time, eight horses drowned trying to get the boat waterborne. We learned a lot about Ameland through museums and chatting with locals. The weather is wintery with both snow and sun. Towards the end of the week, an unpleasant wind picked up. At 4 o’clock on Thursday afternoon I was back home. I can’t complain. I’m back behind my computer. I’m finally able to entertain myself again without having to ask someone to turn a page every minute.

Het bericht Diary February 2001 verscheen eerst op Living with ALS.

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.

Ward claims a part of the garden

Ward is a nature lover. At least, he loves the horticulture in our back garden. In previous years he was already allowed to pick some annuals; marigolds and tobacco plants in the colours of Ajax (his favourite football team). I’m afraid that such slim pickings won’t be enough for him this year. Ward has been preoccupied with a potato all winter. He put it in water until it rooted and eventually grew a bud. Now he wants to use a part of the garden. Grandpa Kees is going to remove the plants from a section of the garden. We’re going to build Ward a miniscule vegetable patch, 1 square metre. We want to plant a bit of everything: carrots, radishes, leeks, lettuce, etc., a tiny amount of each. I greatly enjoy doing this with Ward.

National ALS Day

This was my third ALS day. I was looking forward to it, especially meeting all of my ALS correspondents and the people who designed my book. However, I tend to forget my usual “wait-and-see” approach, so when I entered I immediately felt overwhelmed. Immediately after we had parked, we were greeted by a hostess who did not know when to back down. Even in the coatroom, she wanted to be helpful, but all she did was tugging on the back of my jacket. Because of the commotion, Hein forgot my preferred routines too, so the whole thing was a mess. We were stuck in a queue of wheelchairs, all of them headed to the lecture hall. We wanted to go to the break room, which was the other way. I was almost inadvertently taken to the lecture by my mother-in-law, but I was able to prevent it and I was allowed to go to the now vacant break room with Hein. After a bit of acclimatisation and a cup of chocolate milk, I was ready to go. I’ll be honest, the National ALS Day is hugely confrontational. Involuntarily, I started comparing; not just myself and others, but others and how they were one year ago. The emails I got afterwards told me that I wasn’t the only one who did.
The lecture turned out to be a large plea for official trial runs. Discussion about Maurits van Selms was abruptly ended. After the officious part of the conference, it was party time. Many familiar faces, lots of fun. Because I can’t shake hands, the hand of one of my fellow patients is put into my palm. We intimately sat there for minutes. Hein acted as my interpreter. My appreciation for the people who understand me grew immensely. Whenever I would talk to a fellow patient, I’d stare at them, unable to understand a thing. I’d quickly look around in search of a person willing to translate. Lo and behold, every single spouse interpreted their partner’s words to a T. It’s not the only way of doing it. I asked Jan van Atten a question and after spending some time behind his writing tablet, he turned it around having spelled out his answer. Don’t you dare interrupt his writing process. We’re still able to converse, however clumsily. I recognise myself in their strange laughter, the unintentional noises they make sometimes and odd grimaces. To the uninitiated we must look like a bunch of weird pathetic sods. Despite that, I enjoyed myself immensely and I noticed that everyone was very spirited. We didn’t leave until the end of the conference. At the end I didn’t feel tired but rather elated.

Toe-curling

Besides having trouble not finding my own state of being toe-curling sometimes, I do actually have toes that curl, much like my fingers. Everytime I put on my shoes in the morning, I have to make sure that my toes are decently straight when I push them into my shoe. My feet are also contractured, meaning I walk on my toes, followed by my heels. I can stand reasonably well with my modified shoes. Once a day, I walk from my bed to the bathroom. Sometimes, I accidentally stand on the top side of my toes. That’s not what toes are made for. In short: my toes have a lot to put up with. Especially my big toes. My right big toe has gotten infected, so I bathe it in a Epsom salt bath every night. I don’t mind a foot bath, but I hope my toe heals soon.

Procrastinator

I’m a procrastinator. I try to hold on to my old ways as long as possible and only when I can’t go on any longer do I quit. During my confrontation with other PALS, my procrastination became extra clear. They got a PEG as a precaution, got artificial respiration before having trouble breathing at night and had wheelchairs and machines more advanced than their own diseases. Not me. During the day, I use an ordinary desk chair (it is electrically adjustable, though), I have no communication equipment on my wheelchair, try to have as few aides as possible and have postponed respiratory equipment indefinitely. I’m not the only one, though. There are two kinds of ALS patients: the procrastinators and the anticipators.

Up to date

I’d been building up a backlog these past few months; more than 10 unanswered emails, not much progress on my diary, no inspiration for the kids’ newsletters. Now that I have a head mouse though, I’m up to date again. It’s a new sensation. I’m starting to take more initiative in writing emails, not just limiting myself to answering them. I’ve also started playing FreeCell again, useless as it may be. The thing is: I still have to write two letters, and I’m all out of excuses to postpone them.

NRC interview

We had a tense breakfast on Saturday. The mail had already been delivered, so the next thud on the doormat would have to be the newspaper. It got here at 12:30. We were surprised to see I had gotten a whole page, with a huge picture. Through the weeping, I smiled. At 13:00 I received my first email about the article, from one of the people who worked on my book. At 14:00, the first email from a stranger arrived. They must have booted up their PC as soon as they had read the paper. Right now it’s Monday, three days and 25 emails on. A quarter of them from friends, a quarter from strangers and half of them from ex-colleagues or old housemates from my college days. They were surprising and sweet. I got lots of compliments about the picture. Sometimes, I wonder: “why do I keep putting myself in the limelight?” Although every time I do, it does feel satisfying.

Het bericht Diary March 2001 verscheen eerst op Living with ALS.