Diary June 2007

Passport photo

I had to get my passport renewed, but these days there are even stricter rules for passport photos; no smiling and a head kept straight. We couldn’t go to some department store photo studio, so we had a photographer come to us. I had to pose in front of a grey background, balanced on my headrest. He would edit the picture later to make it seem like a regular picture. The resulting photograph looks rather desolate. Everything about me is crooked; my head, my ears, my mouth. Moreover, my eyes are half-closed. It looks terrible. It’s a good thing I don’t look in too many mirrors anymore. Continue reading “Diary June 2007”

Diary July 2007


One would think that, with the amount of time I’ve got on my hands, all of my days are perfectly planned out. Not so. The fact that a minimum of two people is required to care for me makes that impossible sometimes. It’s especially obvious whenever Hein is away. Floor told me, in passing, that she would be seeing the new Harry Potter movie at half past six that evening. Immediately, my brain went in overdrive. Because that would mean that she’d be gone after 18:15, meaning I’d need to use the bathroom and have dinner before then. It takes two people to help me into my shower seat or on the commode. Thus, I had dinner at 17:15. The same thing goes for hiking trips. There always has to be at least one person at home to help me in and out of my wheelchair. Continue reading “Diary July 2007”

Diary August 2007

My packing list

One wheelchair, one comfortable chair, one commode, one shower seat, one patient lift and one motorised rubber boat. We’re taking three cars, two of which are vans. The only thing that absolutely has to be handicap-accessible is my bed, which it isn’t, it’s too low. Besides not having any doorsteps, the cottage was not built with the handicapped in mind. It’s a good thing we can take most of the things I need with us in the van and there’s plenty of space in the cottage. Although, for privacy reasons, our fellow travellers did need to evacuate the cottage whenever I had to use the bathroom, but they did so without any fuss. It became a routine. Hein’s cousin Adriaan drove the van back to Leiden to collect the last few amenities I needed. I couldn’t thank him enough, my hero. Continue reading “Diary August 2007”

Diary September 2007


I’m eating more carefully than ever, but I still manage to choke on my food often, resulting in hours-long coughing fits. It’s especially terrible when I’ve almost gotten the mucus out of my trachea but it gets stuck. I always feel like I’m burning up when that happens. I usually have someone open the door, remove my blanket, adjust my chair and leave the room before I spent a long time concentrating on getting the mucus out. It happens about once every three days. The worst times were the ones during which I wasn’t at home. It’s happened two times so far, one of them in a supermarket and one of them during my weekly walk on Saturday. I’m developing a fear of being in public because of it. Maybe I should give up eating altogether and fully rely on my PEG. Porridge is the worst offender and usually results in a whole morning spent coughing and heaving. I’ve started eating less and my belly is getting smaller. But eating through a feeding tube feels like such a final nail in the coffin and I’m not ready for that just yet. Continue reading “Diary September 2007”

Diary October 2007

Domestic help

We’ve had our fair share of domestic helps over the years, from all walks of life. The oldies, the kids who just got out of secondary school and, of course, the huge amounts of students, who were usually bad at communication, cleaning or both. I like to have something to talk about over coffee and biscuits. I’m so fortunate to have my standard domestic helps, but their replacements leave much to be desired. We used to be eligible for a personal domestic budget, but since July 1st, we’ve had to chip in to pay our helps. Continue reading “Diary October 2007”

Diary November 2007


I have three practical worries; my mucus problems, mobility and the accompanying trouble I have using the bathroom using a patient lift. All three of them are easily solvable, but to me the solutions are worse than the problems themselves. There are suction machines to help me clear my throat, but it only works for some people. Others say it only made their issues worse. Which one is preferable? My mobility problem could be fixed by using a sling lift, in which I’d have to sit in something that looks like a big sack. That doesn’t sound appealing to me either. I hate not standing upright and I don’t even think it’s possible to use a sling lift with only one carer, especially since my neck can’t keep my head upright. As for using the toilet, a lot of ALS patients choose a catheter, but that’s a big step, not taken lightly. Continue reading “Diary November 2007”