{"id":1901,"date":"2006-12-31T14:38:47","date_gmt":"2006-12-31T13:38:47","guid":{"rendered":"https:\/\/levenmetals.nl\/dagboek-december-2006\/"},"modified":"2018-08-18T11:25:37","modified_gmt":"2018-08-18T09:25:37","slug":"diary-december-2006","status":"publish","type":"post","link":"https:\/\/levenmetals.nl\/en\/diary-december-2006\/","title":{"rendered":"Diary December 2006"},"content":{"rendered":"

Dreaming<\/h2>\n

One would think that my dreams would have caught on to the fact that I have ALS. The truth is the complete opposite. In my dreams, I ski, hike up and down mountains, go to work (knowing I\u2019m ill, but apparently I\u2019ve recovered in those dreams) and generally act like a normal person. In some dreams I\u2019m unable to talk, although eating is never a problem. Dream-me likes thick chips with mayonnaise. People are strange like that. I often have lucid dreams, where I know I\u2019m dreaming but I don\u2019t wake up. Sometimes, when I\u2019m sleeping in my chair downstairs, I dream of standing on the edge of a ravine. After that, I\u2019ll jolt awake and feverishly check my surroundings to confirm that I\u2019m, indeed, just in a chair in my living room. I\u2019ve heard so many other people with ALS talk about how their dreams adjusted to their condition. I guess I just haven\u2019t caught up yet. <\/p>\n

Splint<\/h2>\n

\"\"
\nLast summer, I was afraid I wouldn\u2019t be able to stand upright in the patient lift anymore. I\u2019d often sprain my ankle, making me fall to the right. I tried wearing one of Ward\u2019s football ankle guards, but it couldn\u2019t bear the load. Hein made an appointment at the rehabilitation centre to find a solution, a small sturdy ankle device, which I can wear on top of my shoe. I\u2019d forgotten about how big and crude those things look. They have to, otherwise they wouldn\u2019t be able to support my load. What I ended up getting was a splint, not a convenient little device but something that requires a lot of effort to put on. When I\u2019m wearing it, I feel like I have no control left over my leg. It\u2019s in the bathroom at the moment. I\u2019m hoping I won\u2019t need it anytime soon.
\nMy physical therapist works with the mentally handicapped and often complains about his clients throwing away or simply not using their splints and other appliances. I can relate to my fellow clients.<\/p>\n

Instruments like this one are never fashionable or easy to use. I write with a woman whose sister has ALS, which often makes her slump forward. Her sister has a little harness to prevent that, but whenever it\u2019s used, she puts up a real fight. She can\u2019t talk at all anymore. Imagine, still having your full mental capabilities, all while having no way to explain your discomfort or take off the harness. Horrible. I get the intention of such tools, but they often defeat their own purpose: making the user feel as normal as possible. Sometimes, the means are worse than the ends. <\/p>\n

Efficient<\/h2>\n

We\u2019ve never celebrated Sinterklaas as efficiently as we did this year. We celebrated it early, on the 2nd of December, a Saturday. We\u2019d already bought the presents a week prior, most of them on my weekly Saturday walk. I\u2019d started writing the poems a week before, two to four of them a day. I dictated them, because writing proved too tiresome. It wasn\u2019t that bad, whenever I\u2019d come up with a few lines, I\u2019d call someone over the write them down. Once you\u2019ve picked a theme, writing a poem is a piece of cake. I finished the last one on Thursday, so I had plenty of time to help the others write theirs. Christmas preparations were just as efficient. Long before Sinterklaas, I\u2019d already bought Christmas presents for my carers, Christmas wreaths and the book written by Loes. Piece of cake. It only took half an hour to find a suitable Christmas tree, and another two for Hein and Floor to decorate it, before we cleaned everything up. The tree turned out so symmetrical and well-decorated that it almost looks artificial. Moreover, Nordmann firs don\u2019t have that usual pine smell, which only made it seem more like plastic. <\/p>\n

Spur-of-the-moment<\/h2>\n

I think it\u2019s because I rarely ever go into shops, but I never make spur-of-the-moment purchases. I make shopping lists and keep stock of things we need in my head. They usually contain things like food and toilet paper. But on some Saturdays I go to the supermarket with Netty or Marjolein, and whenever I do, I have them wheel me around the sweets and baked goods isles. I buy as much as I can: pancakes, tiramisu, fish, candles, croissants and other delicacies. I can\u2019t eat any of the food, but Hein and the kids can. Their appreciation is enough for me.<\/p>\n

Christmas<\/h2>\n

I can\u2019t eat around other people anymore. I get restless, I choke on my food more often and have coughing fits. I tend to give up at that point. That\u2019s why I\u2019m not looking forward to Christmas as much as before. It\u2019s a whole holiday that\u2019s essentially centred around eating. On Christmas Eve, we had dinner with our friends and their kids like we always do. Fortunately, I\u2019d had something to eat beforehand so I didn\u2019t feel pressured to eat more during family dinner. No questions about me eating enough, although I did get spoonfed some mashed potatoes a few times. On Christmas Day, our mothers came over for dinner, which was more of a pain. I choked on a piece of fruit, which took an hour to hawk up. One hour I could have spent with my family, I spent alone, coughing. Only afterwards was I able to enjoy the party. On Boxing Day, we were supposed to have dinner with my in-laws. I proposed to go for a walk instead of dinner, which I enjoyed. I\u2019m glad almost the whole family decided to join us for our stroll. <\/p>\n

Distant<\/h2>\n

In her Christmas post, Loes wrote that she\u2019s feeling more and more distant from the people in her life. I feel like that too, although I can easily say that the root of my problem is my inability to talk. Loes still has that ability, so there must be other factors at play in her case. Whether I\u2019m feeling distant is often the deciding factor for my enjoyment of a conversation. I\u2019m happy as long as I have even the smallest sway over the conversation, I\u2019m content. That\u2019s why I despise being in larger crowds. There were six of us at our New Year\u2019s Eve party, six of which were children. That\u2019s a lot of people. Most conversations went over my head, although playing Party & Co was fun. At twelve, we went outside to watch the fireworks. They were a bit of a letdown, so went inside to have drinks. It\u2019s become a staple of New Year\u2019s Eve. I always go in with the highest expectations, but always feel a bit let down by the end of it.<\/p>\n

I wish you all a very happy 2007!<\/p>\n","protected":false},"excerpt":{"rendered":"

Dreaming One would think that my dreams would have caught on to the fact that I have ALS. The truth is the complete opposite. In my dreams, I ski, hike up and down mountains, go to work (knowing I\u2019m ill, but apparently I\u2019ve recovered in those dreams) and generally act like a normal person. In … <\/p>\n

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