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<\/p>\nThings are going well between my shower lady and I. We\u2019ve finally figured each other out. She\u2019s still a bit rough when she\u2019s dressing me, but she takes the time to shower me and blow-dry my hair. She heats up my towel on the heater, which I think is on way too much. I actually like showering now, which became even more clear when she went on holiday in May and I was stuck with a substitute. <\/p>\n
I got a copy of Hans Warren\u2019s final diary for my birthday. I specifically asked for it because I wanted to know what the writing of a professional diarist looks like. Besides, I wanted to know what was going through his head when he and his boyfriend Mario went through a rough patch in his last year. It was rough. I know writing must have been therapeutic for him, but it doesn\u2019t take long for the reader to spot certain repetitions in the text, like him being lukewarm on the trips Mario took him on, not liking eating out, buying African art and having difficulty sleeping and pooping, but also Mario\u2019s suspicions that Hans Warren was being difficult for the sake of being difficult. I skipped a lot of pages while I was reading it. I immediately bought the book written by Mario Molengraaf as a homage to Hans. I also did something I\u2019d never done before, and had the book thrown in the bin. Obviously, that struck a chord with Hein, who immediately took it out of the trash.<\/p>\n
In early May, we had a family holiday in Steenwijk. There were a trampoline and a ping pong table. I\u2019d gladly visit it again. It had a sunroom, a huge living room, a big hearth, a verandah connected to a private lawn, a great handicapped bathroom and a giant kitchen. We loved it from day one. The weather was great too. We only spent the nights inside, the rest of the time we were outside. There were more kids than there were adults, but we did just fine. The trampoline was used by old and young people alike and we had plenty of table tennis competitions over the weekend. Lieke won in the end, beating her own son, Tim. It\u2019s too bad that I felt sick on Saturday, so I spent most of that day inside. On Sunday we went on a boat ride through Giethoorn and hiked in Kalenberg, the exact same thing we did seven years ago. <\/p>\n
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We\u2019re not too concerned about Floor\u2019s final exams. She\u2019s been drinking a lot of cola so she doesn\u2019t fall asleep on top of her books. She gave us a list of rules so we know what we can and can\u2019t say during her exams. At least we\u2019re still allowed to pick what we\u2019re having for dinner. We\u2019ve been corresponding with a lot of people who are in the same situation. Tips on foods that give you a lot of energy, for instance. It turns out that bananas and glucose tablets seem to be the best options, so we\u2019ve bought a lot of those. She\u2019ll get the results on June 15th.
\nAfter she finished her last exam, Floor wasn\u2019t as sure of herself as she was at the start. One week of Greece with her friends will surely calm her down.<\/p>\n
I got the first season of 24 for christmas. I bought series 2, 3 and 4 online. I downloaded the final series, the fifth one, online. That\u2019s it for 24 for now. 5 x 24 x 45 minutes = 90 hours of watching TV with Ward. I\u2019ll miss it. I downloaded and watched Prison Break and Lost with Floor. There are only three episodes left, then we\u2019ll have to wait for the series to start again. It\u2019s one of the few things we\u2019re able to do together.
\nJust when I\u2019d decided to download a few more films, I discovered that the Swedish police shut down The Pirate Bay. <\/p>\n
I was diagnosed with ALS eight years ago, which means I\u2019ve had it for nine years. It\u2019s become the new normal, even to the people close to me. I\u2019ve had a PEG (stomach tube) for six years now, too, but I still eat regular food. Yeah, I\u2019d say May has been an important month in my life. <\/p>\n
Writing emails has become difficult, more so than writing in my diary. Roeline and Lieke have been helping me get through my emails, diligently typing out the letters that are coming out of my nigh-unintelligible mouth. It\u2019s such a great help. I was starting to dread email correspondence for a while. <\/p>\n
P.S. I hope I don\u2019t have to remind you about June 21st, World ALS Day.<\/p>\n","protected":false},"excerpt":{"rendered":"
Shower lady Things are going well between my shower lady and I. We\u2019ve finally figured each other out. She\u2019s still a bit rough when she\u2019s dressing me, but she takes the time to shower me and blow-dry my hair. She heats up my towel on the heater, which I think is on way too much. … <\/p>\n