Summer fun
I started May off the right way with buying some potted plants. I know you’re actually supposed to wait till mid-May, but every time I get back from a holiday I get the urge to do some gardening. We buy the same things each year, a bit boring. Visiting other people’s gardens only confirmed my opinion that gardens should be kept simple. Not too much variety, not too many seasonal plants, not too many bulbs (while daffodils do look pretty, I can’t stand the way they look after they’ve stopped blooming) and use symmetry, which makes it look more tranquil. Because of that, we got two of everything: two potted daisies and different pairs of geraniums. I’m completely satisfied.
Ineke
On Tuesday, May 7th, we got the completely unexpected news that Ineke Mensink had passed away.
Ineke, who I’d corresponded with twice a week
Ineke, who was always in a good mood, cracking jokes
Ineke, whose condition was mostly bulbar
Ineke, who lived in Leiden, like me
Ineke, who had started coming to the homeopath with me
Ineke, who had been terribly upset after her first ALS day last year
Ineke, who has been in my diaries every month
Ineke, who meant so much to me
She had been fatigued lately, sleeping for days on end. I should have known what was coming after the started having trouble writing emails. That’s the way it goes. It starts with being too tired to write emails. Family or friends start doing the typing. And then you’re gone. What a f*cking terrible disease.
The funeral
Since I got sick, I haven’t gone to any funerals; they’re too close too home, too emotional. But I made an exception for Ineke’s. On Saturday, May 11th, she was buried as the church bells rang. The ceremony wasn’t too emotionally draining. Her boyfriend Frans played a beautiful song on his guitar and her daughter is a great singer. Her colleagues were all there, dressed in their KLM stewardess uniforms. A beautiful tribute. When they got out of the way to let me through, it was like they were a wall of KLM personnel, prompting Hein to say “Thanks, KLM.” Ineke hails from a warm, affectionate family. An aunt who remembered me from a visit to Ineke in the hospital engulfed me in affection and sorrow. Her daughter, whom I’d never even seen before, did the same. Her ex-husband and son were as kind as she was too. Like they all knew me, if just a little bit. I came home feeling warm.
Reunion
Today my old sorority L.O.L. is having a reunion. I’m not going. I think my condition is too pathetic. I’m not ready for a confrontation like that, especially after 10 years. I am kind of curious about some fellow L.O.L. alumni. When joining L.O.L., you’re told what the acronym means, a highly classified secret. Even now, I won’t tell a soul.
Trouser shopping
After I wake up, Hein puts my shoes on my feet before I even get up. Then, having been helped to sit on the edge of the bed, I get helped to my feet. I can’t stand up without shoes. Hein washes me on a shower seat, meaning I need trousers wide enough to put on while I’m already wearing my bulky footwear. Elastic waists make things a whole lot easier too. Luckily, wide trousers are currently fashionable. One Saturday, Hein and I went trouser shopping. We bounced from store to store: “Yes, we know exactly what you’re looking for, they’re so fashionable, but sadly we don’t have them in stock, you could try at…” And so, we trudged on until we found a pair of khakis in the last shop we knew. We immediately ordered two more.
Showering
I used to shower every day, these days I only once or twice a week. We have a low shower-bath and the shower seat is fixed to the wall. That means I have to cross an obstacle before I can take a seat on that uncomfortable rigid stool. Which, in turn, means that I can’t take my shoes off until I’m seated in the shower. The seat itself doesn’t offer much support and I often slip down. So does my head. I’ve started dreading using the shower more and more. Luckily, the shower bath is being removed in two weeks, to be replaced with a smooth sloped surface. One fewer obstacle.
Children parents who died from ALS
I get a lot of correspondence from people whose parents passed away from ALS. Even years after the fact, they’re still looking for answers, for information. The disease affects them, too. Apparently, feelings of hopelessness are prevalent among family members of ALS patients. In an ALS magazine, a daughter put it like this:
I talk to people daily about my mom and her fight but most have NO CLUE what we went through. Not many know what ALS is. They always relate it to someone they know who had cancer. ALS is NOTHING like cancer. I just wish I could talk to people who has been through the same thing and the emotional experience that goes with it.
Tuesday night
On Tuesday nights, Floor and I are in charge of the TV remote. Three soap operas in succession: Ally McBeal, Sex and the City and The Gilmore Girls (which wrapped up, sadly). Delicious. Turns out that Ladies’ Nights aren’t uncommon for families. Granted, it’s not a great idea from an educational perspective, too much sex and much too late, but it is nice. Another series we can’t get enough of is Friends. I got a few seasons of the show on DVD for my birthday. We have to watch them on the PC, because we don’t have a DVD player.
What does he want?
On Whitsunday we visited a theme park. A man helped Floor with the wheelchair and asked me what I was suffering from. Hein answered: “ALS.” The man had suspected as much, but still felt the need to sound it out: “Amyotrophic Lateral Sclerosis”. “And do you know the ALS Day?” he prattled on, unphased, while his kid tugged on his arm, asking “What is that?” We were obviously dealing with an expert. Realise that we were just eating as a family while the man was standing behind my wheelchair, completely invisible to me. I didn’t feel like having this conversation at all, and squeaked “GO AWAY”. The man poked his head forward to have a good look at me. I turned my head away. The man left. I was almost panicking. Why? I thought: where was he going with this? Why here? What did he want? Luckily, everyone shared my sentiment. This incident did make me realise that I’m still finding it difficult to talk about my disease. But the question “What on earth did he want?” still bothers me.
The passport photo
My passport expired. For my new passport I’d need a new headshot. So I went to the hairdresser, who cut and cleaned up my greying hair. After that, it was photo time. For an official document, you need to keep your neck straight yourself, which was impossible. A headrest creates too much shadow.
Thus, we tried without the headrest, me keeping my head as straight as possible, Hein standing behind me to support me in case my head did fall backwards. We thought it went alright. The result, however, is a picture of my head tilted forward, me looking up. I’m not too unhappy about it. Let’s see if city hall feels the same.
Feedback
I rarely see my own face. All of our mirrors are too high up. Pictures are my most valuable reference material for what I look like. Sometimes I use the floor-to-ceiling mirrors used in elevators. I stuck my passport photo to my computer screen. Maybe I can get used to myself that way.
Wheelchair tyres
After 1.5 years of use, my wheelchair’s tyres are completely worn out. Most bicycle tyres last at least five years, so I don’t know how my tyres became this frayed. Is it because of the forest pathways? Is it because of our holiday hikes? I have no clue.
Campaign
Soon, the ALS Foundation is going to launch a campaign of radio and TV commercials, to raise funds for the founding of an ALS information centre. Currently, carers know way too little about ALS. On top of that, the campaign is meant to stimulate more ALS research. I’m already dreading the commercials. It’ll probably be bleak, with shocking numbers. I don’t feel like being confronted with those while I’m watching TV with my family. Besides, it would make the dilemma of what to tell the kids that much more pressing. Awul. What to do. Besides that, the campaign would probably be very confronting for the kids. We don’t know, and at this point we’d rather keep our heads in the dirt. I haven’t heard much as of yet.
Euthanasia
This morning I read another fun article about ALS patients in the newspaper today. 20% requests euthanasia, 3% commits suicide and 24% dies from morphine while they’re on their deathbed. In short: only 50% of them die.
4 year anniversary of my diagnosis
I don’t want to end this diary on such a dour note. I’ve had ALS for 5 years and known about it for 4. Actually, I’m not sure if this is such a happy not to end on, either.