Surviving and thriving

If one thing has become clear to me these past few months, it’s that humans are incredibly flexible. Quality of life is subjective. A stranger, or me in my heyday, would see my current condition as completely unlivable and worthless, yet I still make every day count and that makes me feel fortunate. It’s amazing that people can survive and even thrive after these drastic shifts. Continue reading “Surviving and thriving”

Diary February 2001

Head mouse, continued

Paul, Hein’s brother, installed the head mouse on my desktop computer. It’s much more functional. A much larger screen, a cursor that doesn’t vibrate, a more responsive sensor area for the mouse, not always having to recalibrate my mouse and audible feedback whenever I press a button, which prevents accidental double clicks. Not to mention the programs that I didn’t have on my laptop. In short: I’m content. The advantage of using the head mouse on my own computer is that answering my own mail and using the internet is once again doable. I’m more self-sufficient and I can use my PC again, instead of aimlessly sitting around. I wrote this part in 25 minutes. Not bad. This month’s entire diary is written by using the head mouse. It’s working. I do constantly forget about the dot between my eyes, so whenever I forget to take it off before bed or using the shower, it becomes unusable and ends up in the trash. Continue reading “Diary February 2001”

Diary May 2001

Borrowed time

In May, three years ago, I was diagnosed with ALS. The symptoms manifested more than four year ago and last May, my PEG was installed. It wouldn’t be a stretch to call the month of May my ALS jubilee. Statistically, I’m in the critical stage: the wrong side of the statistic; the borrowed time. According to the books, ALS gives you three to five years to live. Whether the countdown starts after the diagnosis or the first manifestation of symptoms is up in the air. As regards respiration, I’m in critical condition too. By the end of April, my lung capacity was one litre. By now, I have 30% of the lung capacity of the average woman my age. Fortunately I’m not suffering from carbon buildup. Secretly, I hope my lung capacity is a bit higher, because I get nervous during breath tests. What is more concrete is the fact I have to accept that I am truly on borrowed time. Continue reading “Diary May 2001”

Diary February 2005


I hadn’t taken a tumble in years, but this month I fell to the ground two times when trying to use the bathroom. It’s due to a combination of being tired and badly positioned legs, because of which I sank to my knees. There’s no way to stop it once it’s started. Hein had to pick me up and I could do nothing to make it easier, I was dead weight. The second time I fell, I cracked my head on the floor. I saw spots for a second, but everything seemed fine. Only by the next day did we see what the damage was. While I was drinking, I felt like my jaw had been unhinged, the way my teeth gnashed together. And while I was eating my porridge, my remaining front tooth came loose. I now have three enamel stumps where my front teeth used to be Continue reading “Diary February 2005”