{"id":1785,"date":"2003-09-30T13:50:31","date_gmt":"2003-09-30T11:50:31","guid":{"rendered":"https:\/\/levenmetals.nl\/dagboek-september-2003\/"},"modified":"2018-07-09T16:13:55","modified_gmt":"2018-07-09T14:13:55","slug":"diary-september-2003","status":"publish","type":"post","link":"https:\/\/levenmetals.nl\/en\/diary-september-2003\/","title":{"rendered":"Diary September 2003"},"content":{"rendered":"<h2>Writer<\/h2>\n<p>Ward had to write an autobiography for school, about his family but mostly about what books, poetry and films he likes. He didn\u2019t want to write down that I was unemployed. I told him to just call me a writer. He liked that idea. And I like that thought too, actually. The following week, Ine, an ex-colleague from KPN, called me a writer too. Talk about inflating my ego. I\u2019m flattered. <!--more--><\/p>\n<h2>Parent-teacher conferences<\/h2>\n<p>I promised to go to every single school parent-teacher conference. I\u2019ve been to every one except for the one on September 11th 2001, because we were glued to the television that night. Last week was Ward\u2019s first one. I didn\u2019t go. An overfull programme and the thought of having to face 500 to 600 parents were too much for me. Floor\u2019s school has always felt familiar, whereas Ward\u2019s one just makes me uncomfortable. I\u2019ll have to get over that, because I do feel that being there is important. <\/p>\n<h2>Sleep<\/h2>\n<p>I\u2019ve been sleeping a lot better since the nighttime temperatures started dropping. I only have to wake Hein up once or twice a night. Until, suddenly, it got hotter again mid-September. Even at night it was too hot. Now I\u2019m tossing and turning again, plagued by compulsive thoughts. I panic and get even hotter. No matter how nice and warm the days are, I\u2019d gladly trade them in for a cool night. Is a bit of cold too much to ask?<\/p>\n<h2>Holiday<\/h2>\n<p>Hein is supposed to go on holiday for four days in September. He has earned it. The Informal Care Foundation, an organisation that works to give informal carers some time off. Twice, they offered to send a highly inexperienced worker, who, on top of that, lives a long way away. That won\u2019t work on such short notice. As soon as she\u2019d be competent, the four days would be up. Hein decided to go cycling in Limburg for two ddas, while Lieke takes care of me. Homely, and very comfortable. <\/p>\n<h2>The shed<\/h2>\n<p>This month was marked by the building of a new shed. No, not a chalet or a prefab cabin, but an original roofed shed we share with our neighbours. It\u2019ll have to look exactly like our previous one, a 75-year-old one that had started to rot. But, like is the case with any kind of construction work, we ran into some delays. It\u2019s fun to keep track of the progress, when everything is working as intended at least. I was deeply invested. \u201cMaybe the window would look better in the middle.\u201d \u201cCould you paint the shed white and green?\u201d After all, the garden is my domain. What should have take two weeks ended up taking a month, but the result was worth it. Beautiful. <\/p>\n<h2>The wallet<\/h2>\n<p>Floor witnessed a man tossing a wallet into the bushes. She pursued him on bike to remember exactly what he looked like. She followed him for a short while. On her way back home, she looked inside the wallet, but left it in the bushes. Only when we told her that there might still have been some important cards in the wallet, did she go back for it. And indeed, it contained a travel card. Lieke headed to the police station, armed with a description of the perpetrator and the stolen wallet. It turned out that the wallet had already been reported stolen. The following day, the wallet\u2019s owner thanked Floor on the phone. But that wasn\u2019t the end of it. On Tuesday evening, two policemen showed up on our doorstep in full uniform (firearms, batons and walkie talkies) to get a more detailed account from Floor. The six of us were seated at the table: the two officers, Floor and a friend, Hein and me, none of us wanting to miss the show. Floor was questioned for 45 minutes. One of the officers wrote everything down in a little pocketbook so he could put it in the computer in his office later. It turned out that the wallet had been taken from a school building. On Thursday they returned to get Floor\u2019s signature, but she wasn\u2019t home, so they returned about an hour later. We\u2019re hoping that this is it and Floor won\u2019t have to do any more identification. The moral of the story:<\/p>\n<p>Always turn found wallets in to the police.<br \/>\nThe police will follow up on it (not like they used to).<br \/>\nDon\u2019t expect things to be extremely efficient.<br \/>\nIn my small corner of the world, I would consider this a major event. <\/p>\n<h2>Sandra<\/h2>\n<p>For the past six months, Sandra has been my help three mornings a week. She\u2019s settled in, and so have I for that matter. She\u2019s a bit clumsy. The not long after I\u2019d put on a fresh vest, she spilled tea on it. When she feeds me oatmeal or fruit, I can see it dripping from the table onto my clothes. When she\u2019s vacuuming the floor, I hear the clanging of the vacuum bashing into the furniture. When I\u2019m on the toilet and obviously indisposed, she asks questions. No matter. It\u2019s all compensated for by a heart of gold and complete transparency. The constant glimpses into every facet of her life and her honesty are heartwarming. We always yap away. Me? Yapping? I\u2019m completely attached to her, like I\u2019m attached to Astrid. Astrid has been with me for two years now. <\/p>\n<h2>More help<\/h2>\n<p>Hein is having an easier time. In particular, we\u2019ve restructured the afternoons. My mother cares for me on Monday- and Tuesday afternoons, when her health allows for it. My mother has been a bit under the weather after having major surgery. Wednesday afternoon is Sandra\u2019s. Lieke is here on Thursdays and Lia, Hein\u2019s mother, is here on Friday afternoons. They cook and feed me as well. On Saturdays, I always try to get someone go go on a walk with me, to give Hein some time to relax. My sister-in-law Netty has been that someone for the past three weeks. Other than that, Saturdays are fairly inconsistent. On Sundays, we usually do things with friends or family. I hope these arrangements do give Hein some respite. <\/p>\n","protected":false},"excerpt":{"rendered":"<p>Writer Ward had to write an autobiography for school, about his family but mostly about what books, poetry and films he likes. He didn\u2019t want to write down that I was unemployed. I told him to just call me a writer. He liked that idea. And I like that thought too, actually. The following week, &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/levenmetals.nl\/en\/diary-september-2003\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &#8220;Diary September 2003&#8221;<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[88,82],"tags":[],"class_list":["post-1785","post","type-post","status-publish","format-standard","hentry","category-2003-en","category-diary"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Diary September 2003 - Living with ALS<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/levenmetals.nl\/en\/diary-september-2003\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Diary September 2003 - Living with ALS\" \/>\n<meta property=\"og:description\" content=\"Writer Ward had to write an autobiography for school, about his family but mostly about what books, poetry and films he likes. 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