{"id":1866,"date":"2005-09-30T21:39:49","date_gmt":"2005-09-30T19:39:49","guid":{"rendered":"https:\/\/levenmetals.nl\/dagboek-september-2005\/"},"modified":"2018-08-06T14:01:34","modified_gmt":"2018-08-06T12:01:34","slug":"diary-september-2005","status":"publish","type":"post","link":"https:\/\/levenmetals.nl\/en\/diary-september-2005\/","title":{"rendered":"Diary September 2005"},"content":{"rendered":"
\"\"
Ward, this neighbourhood\u2019s Sumo King<\/figcaption><\/figure>\n

The toll of wearing a vest<\/h2>\n

A moment ago, I received an email from a fellow ALS patient. She wrote about the conflict between her and her husband when it comes to putting clothes on. She feels like she should be able to dictate the tempo and the order of clothing in which he dresses her. Her husband doesn\u2019t and thinks she shouldn\u2019t complain and should just be thankful, always quickly retracting the latter. That\u2019s my own situation in a nutshell. Although we\u2019ve made a lot of concessions over the years and our arguments aren\u2019t as fiery anymore (their incident I feel is more of a rookie mistake), our conflict is rooted in the same age-old question: who\u2019s in charge? <\/p>\n

While my minimal demands are always met (I want my head held upright and my arms to be crossed on my lap whenever I\u2019m changing), there is a certain aspect of getting dressed I want absolute control over: picking which vest I want to put on. All of my clothes are very run-of-the-mill except for my vests, the only clothing articles I have a hand in buying. It\u2019s my autonomy and personality, all boiled down into a piece of fabric. <\/p>\n

Usually, Hein heeds my vest preferences, but today he turned up with my brown vest. I hate that thing, it\u2019s too thick, the opposite of colourful (I hate the colour brown, honestly) and the only vest I didn\u2019t buy myself. I asked for a different vest, some of my favourites were just hanging in my closet, but for some reason that really rubbed Hein the wrong way. He\u2019d had enough and put the brown vest on me. I protested furiously and loudly voiced my opinions downstairs until Ward fetched my pink vest and Floor helped me put it on. Not a good note to start a day on. Everyone was miffed. <\/p>\n

I was still fuming. Imagine me telling someone else what to wear, the arguments it would cause. Why shouldn\u2019t I be allowed to pick my outfit? However, after three hours I took a good look at the situation. All of this fuss over a stupid vest. Who cares. But the question still gnawed at me: do I have any autonomy left?<\/p>\n

I asked my carer to put the brown vest in a deep corner of my closet so nobody would be able to find it. <\/p>\n

When Hein read this part of my diary, it turned out that he wasn\u2019t aware how much I hate that vest. \u201cWhy don\u2019t we just throw it out?\u201d he commented, down-to-earth as ever. That\u2019s a good one. Why not?<\/p>\n

Personnel management<\/h2>\n

I\u2019m in charge of a kind of company, let\u2019s call it Carer Corp. My company is in charge of my personal care, cleaning my house, doing grocery shopping, preparing my food, doing garden work and running errands for me. I have five employees who I have to provide with enough work and motivation all while solving potential scheduling problems. One of them is good with PCs and likes to read, another has green thumbs and yet another is a great conversationalist. Our garden is almost ready for winter and our front yard has gotten the same treatment last week at the hands of one of my carers. Besides that, I\u2019ve been reading \u2018De eeuw van mijn vader\u2019 [\u2018My father\u2019s century\u2019, a book about Dutch history in the 1900s. -Ed.]. I\u2019m particularly interested in the parts about the author\u2019s family\u2019s experiences in the Dutch East Indies during World War Two. I\u2019m so happy with me rekindled love for reading. I actually owe that to my carer who loves to read. One of my other carers couldn\u2019t care less about books, so I let her do the gardening. <\/p>\n

I had a problem with one of my employees this week. One of my domestic helps didn\u2019t clean thoroughly enough and wasn\u2019t very self-sufficient. She was nice, but I would be doing myself a disservice if I stayed quiet. We decided to part ways and, through her employer, we found a replacement. There\u2019s a bigger market for domestic helps than for carers. Luckily, Roeline had been itching to work more so I would have more than four days to find a replacement. Other than that, Carlien will be working less, so I\u2019ll have to find a new employee before November 1st. And like that, we truck on, working hard to keep Carer Corp. running. <\/p>\n

Hannie Lederhof<\/h2>\n

Today we got a call from Mike, notifying us of Hannie\u2019s passing. She\u2019d slipped off the stair lift and broken her hip. The subsequent operation had been successful, but her breathing stopped. Hannie and I corresponded for over four years and they were emails full of humor, cheek and holiday plans. <\/p>\n

We went on a few walks together. We were a sight to behold; two women screeching in an unknown language, pushed along by their husbands, not a care in the world. She was at my birthday party. The last time we saw her was at the gardening convention in Noordwijk, completely covered in plants she\u2019d bought. <\/p>\n

The football match<\/h2>\n

We spent a lot of Saturdays watching Ward play football this month. Usually we arrive just after halftime. Ward always wears a black shirt with red streaks. This time, we couldn\u2019t find him anywhere. Or could we? Number 12 looked a lot like Ward. Wait. No, that\u2019s not him. What I did find strange was how often I heard the opposition, who played in blue shirts, call out Ward\u2019s name. Odd, his name isn\u2019t too common. And there were so many vaguely familiar faces in the blue team. It was just starting to dawn on me when the match ended. When we got home, my suspicions were confirmed, as Ward got back home wearing a blue shirt. He\u2019d been on the blue team that whole time, we just hadn\u2019t spotted him.<\/p>\n

TV<\/h2>\n

On the evening of Monday, September 12th, the TV programme Network aired a symposium organised by the Belgian ALS Liga, featuring the person behind the controversial Chinese stem cell treatment, Dr. Huang. We couldn\u2019t understand anything he was saying but at least he looked like a nice fellow. The panel of ALS experts pulled no punches as they condemned the treatment. During the show, Loes (who looked great) said with determination that she would go to China for a second round of treatment in October\/November. I admire her steadfast conviction. Once again, I\u2019m in doubt, which is hitting harder than usual. At least ALS is back in the public consciousness once more. <\/p>\n

Statistics<\/h2>\n

My website attracts around 1100 visitors a month, including 600 new faces and 500 people who check in every month. It\u2019s fun to see what kinds of things people use the search bar for. Some key words are logical, like \u201cAmyotrophic Lateral Sclerosis\u201d, \u201cRilutek\u201d and \u201cfasciculations\u201d, while others are a complete mystery to me, like \u201cintestinal colic\u201d, \u201ctiramisu recipes\u201d and a particularly strange one: \u201cGoing wild on poker night\u201d. Going wild? I wouldn\u2019t know how.<\/p>\n

Closed forum<\/h2>\n

Ardi Bouter\u2019s forum has been shut down. People were being too hostile to one another, so Ardi\u2019s family decided to close it. I used to visit it about twice a day. It was becoming more tight-knit and the amount of swearing was decreasing steadily. I feel abandoned and so do many others. There goes another daily ritual. <\/p>\n

Friend<\/h2>\n

Floor has a boyfriend, Roel. They\u2019re having a lot of fun, but I do feel it\u2019s detrimental to our evenings watching TV together. Apart from her not being home as much, it also means that there\u2019s a new third party during the evening she does decide to watch TV with me. I\u2019ve got to say, it\u2019s kind of distracting to have them kissing next to me on the couch while we\u2019re watching TV. Despite Floor\u2019s protests, I know she\u2019s not paying attention to the programme half the time. I still feel blessed though. Of course, they could choose to spend their time upstairs and leave me alone and I\u2019d completely understand. I\u2019m not some bog-standard mother-in-law, after all. Luckily, Ward is spending less and less time on his PlayStation and more time with me. <\/p>\n

Fasciculations<\/h2>\n

I don\u2019t suffer from severe fasciculations, but for the past week my left eye has been twitchy. Besides the annoyance factor, it impedes my vision a lot. I hope it\u2019ll stay open. <\/p>\n","protected":false},"excerpt":{"rendered":"

The toll of wearing a vest A moment ago, I received an email from a fellow ALS patient. She wrote about the conflict between her and her husband when it comes to putting clothes on. She feels like she should be able to dictate the tempo and the order of clothing in which he dresses … <\/p>\n

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