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.

Het bericht Diary May 2002 verscheen eerst op Living with ALS.

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.

Ailments

Before Hein left on holiday, I had my ears cleaned, which I do on a semiannual basis. That, and getting my vaccines are the only times I ever go to a doctor. I’m a firm believer in “waiting for things to blow over”, but during Hein’s week away I started doubting that mantra. It started with a wicked toothache in one of my front teeth. I couldn’t eat anything from the pain. It’s happened before and previous cases blew over, but when my cheek started swelling up too, I decided to make an appointment with my dentist. On the evening before my appointment, however, my stomach started aching as well, so I also made an appointment with a GP. Thus, that Friday, I went to the dentist and to the doctor’s office. The dentist looked grim and told me it’s most likely an infection, so she prescribed me antibiotics. Seeing as the pain in my tooth subsided, I’m not sure if I’ll take them. The doctor couldn’t find anything wrong with my stomach, so it’s probably passed already. I also talked to him about antibiotics. We decided against using them, but if the pain returns we’re free to call him during the weekend. The pain stayed at bay, so we didn’t. Thus, my theory about things always landing on their feet holds water. I just wish I could convince myself of it sometimes.

Fundraiser

We’ve had our first brainstorming session for the fundraiser. Monieke already made some general plans. We’ve already rented a theatre on November 16th. The theme will be Italy, with commedia dell’arte, lots of music and Italian delicacies. Thus far, it’s shaping up to be a very well thought-out event. There are about 200 available seats, so it’ll require some heavy publicity. If you’re reading this, you are cordially invited.

Hein and Ward abroad

Last week, Hein and Ward went hiking in the Vosges Mountains. As planned, I slept downstairs in the sunroom. It felt like a slumber party, Floor slept on a mattress next to my bed, while Lieke slept on the couch in the living room. I slept badly in my bed, so at around four o’clock, I had to be helped into my chair, where I spent the rest of the night. Floor took her mattress upstairs. At quarter past eight, Lieke and I were up and ready for my appointment with the shower lady. After that, it was my carers’ turn to care for me while Lieke went to work. Over the days, we started to develop a routine and I even felt comfortable in the patient lift. Still, I was rather glad to not have a bed in the sunroom anymore. On Thursday evening, Hein and Ward came home, tanned and a bit sunburnt. By that time, we’d put everything back where it belonged. They had a good time hiking, and back home we managed just fine too.

Harry Potter

We didn’t pre-order it, nor did we camp out in front of a bookshop, but we did buy it: the final installment of the Harry Potter series. The Harry Potter books started around the same time I got ALS, the first one appeared in 1997. It took awhile for us to contract Potter fever, but after the first film came out, we were hooked. I started reading them around the time the third one came out. Back then, I was patient enough to wait for the Dutch version to come out, but this time I was too excited to know how the story ends. That’s the fun thing about final installments of series, knowing the conclusion is just around the corner. It took awhile to get used to reading in English and some parts went over my head, but I still feel the same excitement I felt while reading the others. I even dream about it sometimes.

Holiday

I’m so lucky to have the carers I’ve got, they’ve got me covered for the entirety of summer break. Not one of them is going on holiday and they’re able to cover each other’s shifts. On Saturday, we’ll be heading for the Mecklenburgische Seenplatte, where we’re renting a Scandinavian cottage and a camping spot for canoeing. I have mixed feelings about it. I hope the house is big enough so I can have some privacy. I also hope it won’t be too hot.

Het bericht Diary July 2007 verscheen eerst op Living with ALS.

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.

Everyone brought their kids, something I’m thankful for. The more, the merrier. There were eight of us, nine one the last day, in a cottage made for six. That’s why we brought a tent. We’d told the kids beforehand to plan their own activities, but when we actually got there, no plans had been made yet. Every day, the answer to the question “what should we do today” was “shopping in Berlin!” I bloody hate shopping. To me, shopping means waiting outside or being wheeled around with nobody to talk to because they’re all walking behind me. It makes me grumpy and panicky, especially when it’s hot outside. In Berlin, we spent a large part of the day in a cafe, while the ones among us who wanted to go shopping went into town. Everytime we wanted to leave, another one of us dipped out, meaning we had to wait at the cafe for hours. It wasn’t all bad. We visited Ravensbrück Concentration Camp, which was impactful. We had long walks through Berlin, Schwerin and a few smaller towns. We canoed, read books and played lots of games.

Close one

It happened during the second week of the summer holidays. It was a Tuesday. A bit of egg salad had gone down the wrong pipe and I’d been coughing all afternoon. I thought a car ride would do me some good and maybe dislodge the salad. Wrong. On our way back from grocery shopping, we hit a bump and some mucus got stuck in my throat. I was fighting for air and asked Hein to pull over. Usually, standing upright helps get the phlegm down, but it didn’t this time. I remember trying the “standing up” technique twice, but after that, there’s nothing.

When I regained consciousness, the whole family was standing around me looking freaked out as a paramedic applied an IV. At that moment, the second ambulance arrived, as well as another doctor. Apparently I’d been unconscious for 15 to 20 minutes, purple-faced and eyes rolling. I was surprised and still can’t quite wrap my head around it. I just let them take care of me, except I fiercely resisted their attempts to check me into hospital. My blood pressure was incredibly high, 240/160, but it was decreasing steadily.

I spent the rest of the night feeling awestruck, I still couldn’t believe it. My family was still freaking out. Only the next day did I properly realise the truth: that could’ve been it for me. All of the certainty I had was gone. We spent the rest of the holiday doing as little as possible. I had a blind spot in my field of vision which made reading impossible. Fortunately, it’s passed by now, after two weeks. I would’ve been distraught if I lost the ability to read. Other than that, I have an infected gland but the antibiotics should take care of that. Something I can’t get back is my feeling of certainty. Some nights, I wake up in a cold sweat because I feel like I can’t swallow anymore, but it’s happening less and less.

A talk

We had a serious talk with the kids, and I think it went well. Hein explained to them that I don’t want artificial respiration. If there are any further incidents like this one, I don’t want anyone to intervene, no more medical interventions. Those close to me have a right to know too. I’m glad it’s out there now.

Back home

Marjan was already waiting for us with a good meal when we got back from holiday. We’d called ahead and given her a shopping list. It took me the whole weekend to get used to being home again. It was Floor’s birthday on Monday and we had a lot of guests. Tuesday was the first normal day I’ve had in awhile. I felt more certain and relaxed again. It’s a bit embarrassing to admit this, but I like a quiet life, a regular one with as few surprises as possible.

Het bericht Diary August 2007 verscheen eerst op Living with ALS.