Arms are so incredibly important. At first, I mainly worried about losing my legs. I know better now: arms are far more important.\u00a0<\/p>\n
This week was marred by setbacks. My arms feel like lead and walking is a stiff affair. Eating is difficult. I think I have to accept that I\u2019m dying. I didn\u2019t for a long time. Well, it\u2019s been a long time and it\u2019s getting more and more difficult to believe and hope for a happy ending.<\/p>\n
My life changed drastically after June 1st. I\u2019ve given up on eating without help. It\u2019s a decision I\u2019ve dreaded for months, but up till now I had managed to avoid making it. It\u2019s not easy. Not having to lift my arm is a relief, granted, but it does make me a lot more dependent on others. Especially in company I find it highly embarrassing to be spoon-fed and everytime I do, I criticize Hein for doing it wrong. My jaw muscles aren\u2019t what they used to be, either, so I often make a mess of myself. If there\u2019s one thing I\u2019m afraid of, it\u2019s loss of decorum. It can\u2019t be fun for the kids, either. Anyway, life goes on and I\u2019m getting used to my situation (bit by bit). Dinner, however, isn\u2019t the enjoyable social event it used to be.
\nMy arms lie in my lap, two useless instruments, unable to lift themselves. The worst thing about losing them is my inability to comfort Floor and Ward, to hug them or to just touch them for no reason in particular. Never again will I take my children into my arms and my voice can do nothing to remedy that. The sounds that I make aren\u2019t exactly comforting. This powerless feeling towards the kids brings me the most despair. What I wouldn’t give to hold them again.
\nNot being able to use your arms brings other, less obvious difficulties with it. A mosquito bit me. I could feel it, I could see it, but I was powerless to do anything against it. The same goes for scratching itches, blowing my nose (especially with hay fever) and turning the pages of a book.
\nI\u2019m using a keyboard on a computer screen that I control with a mouse. It\u2019s slow, but it doesn\u2019t tire me out. Sadly, it\u2019s a test program, meaning it crashes every 15 minutes. Sometimes I think to myself: \u201cThis is probably the start of a more difficult period. Thus far it\u2019s been manageable, together with Hein, but will it stay that way?\u201d It\u2019s especially like that for the second half of 1999, I\u2019m afraid. Well, at least I\u2019m halfway through another year. Humans suffer most from the fear of having to suffer. Looking back, I should have lived by this mantra from the start. Apparently one needs time to process this fact.<\/p>\n","protected":false},"excerpt":{"rendered":"
Arms are so incredibly important. At first, I mainly worried about losing my legs. I know better now: arms are far more important.\u00a0<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[82,83],"tags":[],"class_list":["post-1263","post","type-post","status-publish","format-standard","hentry","category-diary","category-prelude"],"yoast_head":"\n