Paul, Hein\u2019s brother, installed the head mouse on my desktop computer. It\u2019s much more functional. A much larger screen, a cursor that doesn\u2019t 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\u2019t have on my laptop. In short: I\u2019m 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\u2019m 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\u2019s entire diary is written by using the head mouse. It\u2019s 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. <\/p>\n
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\u2019t be any more different when I\u2019m out of the house, especially in larger crowds. I feel abnormal; I\u2019m 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\u2019re fun gatherings during which I don\u2019t 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.
\nBesides playing bridge, we celebrated my mother-in-law\u2019s 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\u2019t act like that. Leave your unctuous, intimate consolatory conversation at the door, please. I really can\u2019t take it. Once I was properly seated, things went better. Quietly, I could take part in the festivities too. <\/p>\n
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\u2019t 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.<\/p>\n
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\u2019m \u201cforced\u201d to do something by an external force. Some of my fellow course participants also suffer from speech impairments. Eventually, we\u2019ll have to write about communication among our own characters. We even have a real teacher. I\u2019m curious to see what\u2019s next. <\/p>\n
I\u2019ve 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\u2019ve had my doubts about publicity like that. Is my book too private for strangers\u2019 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\u2019ve sold 150 of them so far. In short: I could use some publicity. Thus, I\u2019ve 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\u2019m 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. <\/p>\n
I\u2019m not getting proper night\u2019s 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\u2019s 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\u2019t stand being in bed any longer, even when I\u2019m 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\u2019t really afford all of my nocturnal escapades. During weekend mornings I\u2019m downstairs while Hein gets some well-deserved rest. <\/p>\n
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\u2019s a big responsibility for a twelve year old, maybe too big. Either way, she does it carefully and with gusto.<\/p>\n
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\u2019s 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\u2019m very taken with the Buena Vista Club\u2019s latest album and its beautiful female vocals. <\/p>\n
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\u2019t. When we arrived in Ameland I felt sick. Was it the journey? My worries about the journey? Had I actually caught something? I wasn\u2019t 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\u2019t use the bath. It\u2019s too much. Too\u2026 invalid. It doesn\u2019t fit my own self-image, still falling hopelessly behind reality. Going to bed wasn\u2019t 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\u2019t have to worry about cooking. Every evening we got three courses, easily mixed with sauces and gravy. I had no problems eating.
\nWhat 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\u2019clock on Thursday afternoon I was back home. I can\u2019t complain. I\u2019m back behind my computer. I\u2019m finally able to entertain myself again without having to ask someone to turn a page every minute. <\/p>\n","protected":false},"excerpt":{"rendered":"
Head mouse, continued Paul, Hein\u2019s brother, installed the head mouse on my desktop computer. It\u2019s much more functional. A much larger screen, a cursor that doesn\u2019t 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. … <\/p>\n