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.

Quality of life

Recently, I read a newspaper article that posed the idea that quality of life is determined by two factors: involvement with and equal concern from other people and control of one’s own life, meaning the power to make decisions about one’s own life. I’m not lacking in either of those. I consider myself very fortunate.

CPR

I’ve decided long ago that I don’t want artificial respiration. What I do want is nasal intubation, especially at night. Why no artificial respiration? It would mean that I need help breathing 24/7; for suctioning phlegm and other calamities that might arise with respiratory machinery. As ALS develops, one can do less and less.
I don’t feel like I’m the type for artificial respiration.
I’m too pushy, too impatient to live with that. I like to have and stay in control. Seeing as it’s a factor for my quality of life, I don’t feel like giving that up.

Intimacy

To my family, medical ventilation would be a great burden. I’d need care 24 hours a day. It would be a constant in-and-out of caregivers. Gone is the intimacy us four shared. Gone are our relatively normal lives. In short, the involvement of my family would be under duress.

Medical circuit

Medical ventilation would mean I’d have to dive head-first into the medical circuit, a world I prefer to give a wide berth. Every 6 weeks, I’d need a cannula change. Not appealing.

Euthanasia

There will be a point where one decides enough is enough and consider ending their life. Actively having to make the choice of dying and pulling the plug is not a pleasant prospect.

Can’t I think of any pros that ventilation has? Of course I can, I want to see my children grow up. But at what cost? I think that they and Hein would be able to live happy lives without me. Looking back, since I’ve been sick our lives have been odd, but happy. I think that’s my greatest achievement. The same goes for Hein, without whom that wouldn’t have been possible.

Thou, France

Sat in the passenger seat of a friend’s car (forcing the missus into the back seat, thanks Gisèle), we left for France, to a wheelchair-friendly farmstead, some 200 km southeast of Paris. The Prins boys were in the passenger seat of our van. The drive was amicable. I slumped a bit, so my view outside was mostly take up by the windscreen wipers. Nonetheless, it was so much more comfortable than the van. The farm was beautiful; huge premises, a fantastic swimming pool and a terrace with lanterns. More importantly: there was water in the swimming pool. The water was 13 degrees, but that didn’t keep the kids from swimming. In the stables, the kids found ample material to build a hut, and there was even a fire pit. The place was ideal. So ideal, in fact, that it won’t be available for booking until 2003. The surrounding area is lovely, but not overly interesting. That meant we didn’t feel obligated to go to every single three-star tourist attraction closeby. We visited a pottery village, a wine-tasting where even the kids had a glass (we were near Sancerre), a goat cheese farm, which smelled tremendously and was inhabited by thousands of flies, several of which we took back to the Netherlands, a museum about witchcraft the kids didn’t want to go to, but they’re glad they did, and finally to a medieval castle constructed using only medieval methods, kind of like Archeon. And of course, we paid a visit to one of those amazing huge French supermarchés, where everybody sneakily added their own favourite foods to the big anonymous shopping cart. Visiting a supermarché is an absolute must in France. The house was easily accessible and I slept relatively well. In short, a lovely holiday, although it could have been better.

Hein

Just before we left for France, Hein lifted a bag and something in his back cracked. On our way back home, I kept seeing him getting out of the car, hands on his back. What’s going to happen back home. We have a delicate system in which Hein is the main player. Getting me off the toilet was a hard task on the first day, but has improved since then. Pulling me out of bed only works if I put on my shoes in advance. We’re one and a half weeks on now. Hein is still in pain, but he’s still managing to help me. I do realize that Hein needs some time without having to care for me and I can absolutely understand. The greatest obstacles are putting me to bed and showering. I’ve proposed that I’ll sleep in my chair at night, so that problem is taken care of, and I’ve asked Lieke to watch me for a weekend. This weekend, I already tried spending a night in my chair. Apart from the fact that I couldn’t fall asleep at 5:30 and needed some time on the computer to put me to sleep, everything went fine. All we have to do now is pick a weekend.

Hot

It only took a week after returning from France for the weather to take a turn. Nothing but sun and it just keeps getting warmer. Before, I used to try to get a tan as quickly as possible, but now I avoid the sun. The shadows of the trees at the tea parlour are delightful and our house is cool too. A family reunion at the Zuiderzee Museum broke me down; too hot and a car trip that was too long. My arms constantly fall to my sides upside down and get stuck between my wheelchair’s armrests. Apart from how warm I get in that pose, the bottoms of my arms got sunburnt. On top of that, I suffer from hay fever and my nose is stuffed, making me short of breath and making me gasp for air like a fish out of water. With all of that doom and gloom, I’m glad the weather’s cooling off again.

Garden

I can’t help writing about our garden. She (are gardens female) is such a beauty. We have some new acquisitions: two holly trees, a red pyrus and as the cherry on top, a little apple tree (a classical grafted fruit tree). For Hein and I, the apple tree was love at first sight. I got it for mother’s day, but Ward classifies it as part of his own growing patch, so he considers is his. Other than that, we bought a mirror ball to ward off witches, in accordance with Dutch folklore, as well as a wooden mobile. Ward’s patch is flourishing. We’ve already harvested and devoured the first head of lettuce, it was approved by the tasters. The whole family cares about the garden and we enjoy it immensely. I’m glad that father-in-law Kees works on the garden a few hours a week.

Food

I still have two crustless sandwiches for lunch. The criteria for my sandwiches are becoming more specific, though: they can’t be too wide, preferably long and thin so I can grind them to bits with my front teeth, the bread can’t be too old and dry, it needs a lot of butter and chocolate sprinkles to make eating as smooth as possible, the bits can’t be too small because I need to be able to grip it, and there can’t be too many sprinkles on them, because I tend to make a mess when there are. In short, I’m an awful nitpicker. My other food is mashed and pureed. I’m always stunned when people eat huge chunks of food made of a plethora of different ingredients like it’s nothing. “I used to be able to do that”, I always think, amazed. Recently, I started noticing that my feeders tend to chew with me. Whenever they feed me a bite, their mouths open too. Now that I notice, it’s become hilarious and distracting. Telling them they’re doing it doesn’t help. It’s an instinct, very hard to shake. Try it yourself.

Saliva

ALS, or at least the bulbar variant, is often associated with loss of saliva through the mouth or, put more crudely: drooling. Whether it’s because of an increase in spittle production or because of weakening lips, it’s a very irritating and degrading phenomenon. It doesn’t happen when I sit normally, but whenever I have to laugh, sneeze or anything else that puts pressure on my lips, I’m in trouble. Whenever I’m forced to keep my head at an angle (on the toilet, for instance) and I’m expected to say something, I’m in trouble. I primarily attribute it to the loss of functionality in my lips. It’s manageable now, but I hope it doesn’t get worse. Sadly, it’s almost hay fever season again.

An ALS encounter

It’s Ascension Day. Just like the rest of the country, we were seated lakeside in Leiden. After three hours of studying the average person from Leiden, we went back home. We stopped at a snackbar for a bit. While I waited, I was addressed by a strange lady. A lady with a somewhat nasal voice. For a second, I confused her with a deaf-mute colleague I used to have, same nasally tone. But then it clicked. It’s Ineke, a fellow ALS patient with whom I’ve corresponded for the past few months, who lives in Leiden. She recognised me from the photo. Hein joined us and we had a pleasant conversation. She has had ALS for three years and apart from her speech, it’s barely noticeable and she is still intelligible. I’m a tad jealous.

Het bericht Diary May 2001 verscheen eerst op Living with ALS.

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.