Arms are so incredibly important. At first, I mainly worried about losing my legs. I know better now: arms are far more important.
June 1999
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’m dying. I didn’t for a long time. Well, it’s been a long time and it’s getting more and more difficult to believe and hope for a happy ending.
August 1999
My life changed drastically after June 1st. I’ve given up on eating without help. It’s a decision I’ve dreaded for months, but up till now I had managed to avoid making it. It’s 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’t what they used to be, either, so I often make a mess of myself. If there’s one thing I’m afraid of, it’s loss of decorum. It can’t be fun for the kids, either. Anyway, life goes on and I’m getting used to my situation (bit by bit). Dinner, however, isn’t the enjoyable social event it used to be.
My 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’t exactly comforting. This powerless feeling towards the kids brings me the most despair. What I wouldn’t give to hold them again.
Not 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.
I’m using a keyboard on a computer screen that I control with a mouse. It’s slow, but it doesn’t tire me out. Sadly, it’s a test program, meaning it crashes every 15 minutes. Sometimes I think to myself: “This is probably the start of a more difficult period. Thus far it’s been manageable, together with Hein, but will it stay that way?” It’s especially like that for the second half of 1999, I’m afraid. Well, at least I’m 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.