My book was warmly received. The best praise I got was from my cousin Jos:
\n\u201cWhenever we talk about you at birthdays, it\u2019s mostly about the symptoms of your disease (\u201cshe can\u2019t do this\u201d, \u201cshe needs help with that\u201d, etc.), because of which my view of your life became very skewed. Whenever I thought of you, I thought of someone who\u2019s wasting away in a wheelchair. Maybe that\u2019s why your insights on your life are that much more significant. Sure, it\u2019s sombre at times, what with your deteriorating motor skills, but it\u2019s largely overshadowed by your positivity.\u201d
\nMy mother agreed with my cousin wholeheartedly, but did think that my book makes my situation seem too rosy. She\u2019s right, I didn\u2019t spend ink on my sadness, anger and fear. Before I got sick, I used my diary to describe my sadness and other emotions, but by now my diary has become a log of my happy memories.<\/p>\n
Floor took a train to Drachten this morning, accompanied by two friends. She\u2019s sleeping over at our family friends\u2019 house. I hope the girls will have a good time. Their programme consists of going into town, watching movies, going swimming, visiting the cinema and, of course, being silly. They wouldn\u2019t tell me, but they\u2019d love to use our friends\u2019 sauna, too. I thought all three were equipped with a cellphone, those modern youths. It turned out that only Floor had one, so she was flooded with phone calls from her friends\u2019 parents asking if the train journey had gone according to plan. It did, and when they returned they seemed very pleased with themselves. Everything went according to programme. A well-planned trip is always a great experience. Ward was glad his sister was back home. He even made a \u201cWelcome Home\u201d sign.<\/p>\n
Winter was in the air and the urge to go skating got the better of us. On Saturday, Hein took Ward to the ice rink for the first time. It\u2019s harder than he anticipated, so he\u2019ll have to train some more this winter. Thus, Saturday has become family ice skating day. Me? I spend that time at home, listening to music and napping. I\u2019ll gladly stay at home alone if it means that Ward can learn how to skate. Secretly, I\u2019m hoping that the water won\u2019t freeze this year. I miss long-distance skating a lot.
\nNo dice. It\u2019s freezing, and the outside skating rinks have already opened their doors. Hein is buying Ward skates today. He\u2019s hooked. Floor already knows how to skate, so she can wear my racing skates. I still feel giddy whenever there\u2019s natural ice and it always surprises me that the majority of people don\u2019t match my excitement. I guess it\u2019s another instinct that hasn\u2019t adapted to my ALS yet. Luckily, it\u2019ll thaw soon. <\/p>\n
I don\u2019t answer my emails myself anymore. I\u2019ve started doing dictation. Inge is my typist, something she finds enjoyable. She\u2019s a much swifter typer than I am. I\u2019m still intelligible to some people, which I use to my advantage. I talk as much as possible. Stubborn, yes, but effective too. <\/p>\n
I try not to plan too far into the future, not thinking about the future too much, living in the present. December felt especially fleeting. Planning holidays, however, is a necessary exception to that rule. Poorly planned holidays often fail. Yesterday, we slew some dragons. Spring break will be spent on Ameland (looking forward to it), our May holiday will be in France (I\u2019m glad we all had one specific week off). Our summer holiday was a tough nut to crack because most places we thought of were already booked, but crack it we did. We\u2019re going to \u00cele d’Ol\u00e9ron in western France, in a wheelchair-accessible cottage. Even while avoiding it, the future is something we all must face. <\/p>\n
My fringe is completely grey. Usually I paint my hair, but now that my neck has become less resistant, I\u2019m less eager to sit through long visits to the hairdresser. Cutting my hair is fine, but having to sit in an uncomfortable chair for 45 minutes is a less attractive prospect. Thus, I\u2019ve been grey for a week. I bought hair dye to use in the shower. Some people have suggested that I stop dying my hair altogether. The kids couldn\u2019t disagree more. They don\u2019t like my grey hair one bit. Hein is fine with it. Still, aren\u2019t kids often your most honest critics? For now, I\u2019ll keep dying it. I\u2019ve lost too many other cosmetic options since I got sick.
\nHein dyed my hair on Monday. Spouses of ALS patients are often assigned some unexpected tasks. <\/p>\n
For many nights straight, I\u2019ve been plagued with restless legs. I\u2019ve had it before, but the past few nights have been especially horrible. My legs become horribly stiff or spasm and I have the constant urge to stretch them out. I twist and turn, causing the blanket to shift and ruffle, waking Hein up. Last night I took some valium. I panicked and felt very hot. After the tablet took effect, things went wetter. I\u2019m not having trouble breathing, no nightmares or headaches. I take 4mg of sirdalud thrice a day to prevent muscle stiffness. I heard that quinine prevents cramping, so I\u2019ve started drinking tonic water. My stomach is bubbly and gassy. It\u2019s probably not a fantastic remedy in the long run. I\u2019ve started dreading the nighttime. I feel fine by day. I emailed my neurologist and GP, who replied promptly. I\u2019m using quinine pills now. The first night was fantastic. <\/p>\n
Until May of last year, I watched TV on the couch. During especially scary or romantic films, Ward and Floor would cuddle up to me. I loved that. Now, I have my own recliner. It\u2019s on wheels and motorized, so it can be put in almost any position. It\u2019s useful and comfortable, but also lonely. Until November of last year, I could sit in the passenger seat of the car. Sometimes during drives, I fell asleep with one of the kids at my side. By now, I have my own sturdy wheelchair in the back of the car, with both kids in the front seat, because the seats didn\u2019t offer enough support. Thus, my status as a separate person is cemented more and more. My bed is the only place where I\u2019m not alone. Still, I isolate myself, because I\u2019m scared of getting tangled under the covers or something falling on top of me. The thought alone makes me uneasy. I keep everyone at a distance, but in bed it\u2019s a choice (because the alternative is worse) to be separate. <\/p>\n
I took a bold step and started practising with a head mouse. Using the IR glasses was too cumbersome, so I decided to just put the dot between my eyes again. I often hold a key for too long, so I sometimes type letters twice. My head also skews too much so I often have to recalibrate the cursor so its resting position is in the middle of the screen. At every small small nudge against the table or shake of the floor, the cursor vibrates, so that doesn\u2019t help. I noticed all of this within half an hour of practise. It\u2019s slow, but at least I don\u2019t become too tired. Practise makes perfect and I\u2019m not too discontent with the mouse. I trained again the next day, but the thing is extremely sensitive and the cursor vibrates constantly. I couldn\u2019t keep the thing in check. That sentence alone took me half an hour to type. I\u2019ve discovered what I was doing wrong today. The laptop screen was too askew, so half of the screen was too far away to register the mouse. Patience is a useful characteristic for ALS patients. Right now I\u2019m on day three of using the mouse. It\u2019s gotten worse again, my mouse sometimes flied off the screen and the shaking hasn\u2019t subsided. I\u2019m frustrated, so I think I\u2019m going to call the retailer. These sentences took one hour to write. What a ripoff. I have to try to sit straight, which is a struggle since my head and neck are not really up to the task of assuming an upright position. That took two hours to write. It\u2019s dreadful. I feel like a terrier, I still want to go on trying to see if things get better. I tried putting on a new dot to see if it helps, but it hasn\u2019t helped too much. For now, I\u2019ll stop complaining about my typing vicissitudes. <\/p>\n","protected":false},"excerpt":{"rendered":"
La Vie en Rose My book was warmly received. The best praise I got was from my cousin Jos: \u201cWhenever we talk about you at birthdays, it\u2019s mostly about the symptoms of your disease (\u201cshe can\u2019t do this\u201d, \u201cshe needs help with that\u201d, etc.), because of which my view of your life became very skewed. … <\/p>\n