Sometimes, enough is enough. Even on his days off or after his bicycle trips, Hein comes home to a household in need. And it will always be that way. However hard I try to amuse myself. The social workers’ schedule is based around his work hours and whenever friend take care of me, it’s Hein is working too. It doesn’t exactly ease the burden on Hein. In fact, sometimes someone else should be taking care of me when Hein is home, like my mother does. Then again, it’s weird to be at home with a stranger around. And our kids are young and thus not always deployable. Hein does have the option to go out. I can stay home alone for up to two hours, a timeframe dictated by my bathroom use. But I think that “having had enough” is recognisable for many spouses of ALS patients. Very understandable. Like that, we carry on.

Head

It feels like my head is becoming heavier. Whenever I’m drinking, my head quickly falls forward. Cups have to be held lower and lower. Eating and drinking is draining. I have to eat with a level head. After that, it droops back down. Up and down, it’s a lot of work. Sometimes, I have to call for a timeout. Eating itself is still manageable, even sandwiches. Using the keyboard using my head is the same, although it’s very time-dependent. It’s especially hard during mornings. By the time the afternoon comes around, I’m more flexible, apparently. That doesn’t stop me from groaning with exertion while I’m using the computer. Every word is a battle. I generally make too much noise.

Noise

It starts the moment I go to bed. Whenever I stretch I make a cacophony of sound. While getting dressed, I squeak. Eating is also accompanied by a lot of noise. Not to mention my PC usage. While riding my wheelchair, I hum. And at night, I have to cough up phlegm. I take a big breath and cough hard, until the mucus is gone. When I’m in company, people think initial big breath is a sign that I’m about to speak, so all eyes are immediately on me. What follows is a disappointing cough. The eyes turn away again. After drinking I usually burp. Not good for table manners.

Greetings

If you go for a walk with me, prepare for a lot of greetings. “Do you know that man/woman?” my accompanist repeatedly asks me whenever a complete stranger greets me. Well, no. But my invalidity brings the best out in people. One ride through the park and I’m bombarded with “hellos”. Too bad I can’t wave.

Another benefit. The other day, we went to the cinema under the assumption that our friends had already bought tickets for us. In advance, we went to look for an employee who could help us use the lift. The young man didn’t dare ask to see our tickets. We vaguely referred him to our friends. Only afterwards did we find out that nobody had paid for us. The same thing happened in the theatre when we went to see Hans Teeuwen. Not very popelike.

Other examples. We were at the hospital and had been waiting for a lift for a while. At the last moment, we were joined by five guys in lab coats. The lift arrived, and in they went. They gestured at us to join them, but we obviously wouldn’t fit in the lift. And off they went. Not a smidge of shame. I can’t stand those types, so insensitive and callous (there are exceptions though).

Standing patient lift

Today marks the start of the standing patient lift’s second round. Astrid, our new help, didn’t feel safe lifting me anymore. She found it very hard to get me off the ground. She holds me under the arms, her hands on my back. She lifts using her legs. My other helpers lift with their arms, using their hands. It does require more dexterity because they have to quickly grab me by the arms after lifting me up, which is often a delicate process. Either way, Astrid has dropped me back into my chair twice now. There I was, slumped in my wheelchair. My legs spastically went rigid and shot forward. Good luck trying to get me up again. By a stroke of luck, my neighbour was visiting on both occasions, so in no time I was seated again. Shaking and barely talkative because of emotions. It undermined my trust. That’s why we got a lift. Not for me, but for Astrid. She’s lucky I like her so much, otherwise I would be a lot more reluctant to use a lift. I still am a bit, but I’m fine with it nonetheless.

Yesterday I had my first go on the lift. Afterwards, I spent the whole morning shaking. Horrible! But yesterday afternoon and this morning we did some dry runs and they went well. I only use it in the bathroom. Sometimes I wish I were a man, that way I could just stay seated. On the other hand, having someone else stuff your penis into a bottle can’t be too comfortable either.

Air

I went to Utrecht again. Measuring my lung capacity is becoming more and more difficult. Getting the mouthpiece in is difficult and my lips are too weak to completely seal it. After that, a clothing peg was put on my nose and I was supposed to inhale and exhale through my mouth on cue. I couldn’t get the timing down. I was better at the exercise that measured my respiratory strength. I didn’t have to use the mouthpiece and peg, for one. I declined a little bit, I’m on 25% now. Luckily, my blood gases are steady. At the same time, they checked for carbon monoxide, a sign of breathing problems. They’ll do the same thing again in three and a half months.

Is it important?

Ward does understand what I’m saying, but not well. We often resort to spelling. With great difficulty, I formulate the letters and Ward faithfully keeps track. Suddenly, he was done and he asked me: “Is it important?” It killed me. What is important? Nothing, really. Except for the words “I love you,” nothing is that important. And I don’t say that enough. Still, people need conversation in their lives. That’s why his “is it important?” upset me so much. No, not really. The conversation ended.

Anxieties

I’m full of little anxieties. My movement in particular is a continuous source of anxiety: are my feet straight? Am I coming in at the right angle? Is the toilet seat down? Are my arms properly supported (my arms are very heavy)? Won’t they leave me on the toilet for too long? But the PC can also be a source of problems if my caretakers don’t know how it works. I try to stay ahead of problems like that, so I always ask Hein if the PC is properly set up before he leaves. My mother-in-law doesn’t understand me. Without communication, I’m truly handicapped. And the PC is an enigma to her. This morning, the programme used to operate my mouse was hidden behind my on-screen keyboard. Not to worry, just minimise the window and open the programme. The thing is, I couldn’t click, because the programme wasn’t turned on yet. Try explaining that to your mother-in-law. Eventually, she called Hein who explained it to her. But the button to minimise a window is very small, so she kept unintentionally misclicking. Hein had to go to a meeting and hung up. Adrenaline coursed through my body. Eventually, my neighbour Lisette fixed it. I’m saved. ALS makes the smallest potential problems come to light.

Neighbour

Lately, my neighbour has repeatedly served as my guardian angel. Did I slump in my seat? Do I need the bathroom while Hein is away? Even now, with simply clicking a programme. Lisette knows what to do. I’m glad she’s there for me.

November is Virus Month

In late October, my PC got infected through a Word document. Word and my onscreen keyboard were slow and barely functional. When we decided to do something about it, the problems just got worse. Turning the computer on was marred by lots of error messages and turning it off was done by unplugging the PC. I never open attachments from strangers or people with suspicious, but this virus activated itself when I opened my mail, which would be necessary to delete the email it came in. The virus didn’t do that much damage to my pc, but it did send many emails the likes of which it came in when I accessed the internet. It’s still doing it, I keep getting infected emails back. Sorry, if you got the virus from me. By now, it’s at least 45 people. On Friday, November 30th a specialist remedied the damage somewhat, but it’s still suboptimal. All of this while I still have to write my Sinterklaas poems.

Sinterklaas

We celebrated Sinterklaas early, on December 1st. Apart from one nephew, the whole family is there. Some of the kids still believe, so we sang songs beforehand, a black-gloved hand threw sweets through the window and the presents were delivered to the front door. We read lots of poems.

An external PEG operation, by Ineke Mensink

The way it was explained to me, I would get local anesthesia on my stomach, but it would only work on a surface level, meaning that if they were to go deeper it would be painful. It would only take a while though, completely manageable. I’m not easily intimidated, so I wasn’t worried.

After two tries, the nasal tube was installed. The first time they tried, I vomited it out. After it was installed and attached to my nose with a bandaid, the real heavy lifting started. They had to make four holes, one for the PEG and three for the anchor points for the catheter below the skin. Making those holes is a process not unlike hammering a nail through a plank, but it takes a few nails of increasing size to make a hole big enough. And now multiply that by three. It’s only possible to relieve subdermal pain with general anesthesia, which is a forbidden fruit for me.

If I were to tell you that the pain was excruciating, that would be a gross understatement. All in all, it took 1.5 hours instead of 30 minutes. Later, it turned out that I was in an unusual amount of pain after the operation, which is only remediable with morphine. I use it to this day because the pain is unbearable without it. The problem, you ask? Apparently, during the insertion of pins into my stomach, one of them grazed my ribcage, so I have a bruised rib now. As a result, breathing is now extremely painful.

The pain I’m experiencing right now is not from a wound but from the clamps that were applied to keep the catheter in its place. Tomorrow, they’ll be severed. Eventually, the metal clamps will just be pooped out, they naturally evacuate the body. The clamps are inside me and kept in place by metal pins that were inserted from the outside. Those pins are cut after 11 days, the time it takes for the stomach to repair itself. In two months, the catheter will be replaced and a button will be made. It’s a sort of cover with a little valve so I get my flat stomach back, as well as the ability to wear normal clothes. It’s even invisible when wearing a swimsuit. I can even take it into the sauna, I’ll just put a bandaid over it. Nobody will suspect that beneath it is a hole directly to my stomach.

I would like to clarify that this was my personal experience and it doesn’t have to go this way. I had lost 30 kilos, so I didn’t have a gram of protective fat. It could have been a number of factors that contributed to how badly I had it. I would never discourage usage of this method for people unable to be operated on through the throat. I am still a wholehearted proponent of this method, especially because the installation of the button is also done externally, not through the throat. It’s very useful for patients of bulbar ALS. What does have to be taken into account is that it is still an operation, and it did result in an obvious acceleration of my ALS process.

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

It’s been a busy week. On Wednesday I had a homeopathy appointment and on Thursday I attended ALS Day in Uden. Ineke, a fellow ALS patient from Leiden and her boyfriend carpooled with us, which was nice, despite the fact that I fell asleep in the car. Uden is not closeby; two and a half hours there and two hours back. All of that for an event lasting only four hours. We were late and had already missed a lecture. The good news: they’re building a national ALS centre, a central point for information about ALS. After that, it was a pleasant, laid-back day with only a light programme. We sat at a table, surrounded by familiar faces. I had my ever first reflex zone massage too. While I didn’t have my feet massaged, my hands did get treated. According to my masseuse I shed a lot of toxins. I’ll feel much better tomorrow. It was a love-filled day. People who knew me from my homepage came up to me and some of them hugged me. They politely asked if they could beforehand, mind you. I’ve learned to appreciate days like these.

The day after

The day after ALS Day was not pleasant. My head and stomach ached, I felt hot one moment and cold the other and I felt like I needed to vomit. I spent the entire day napping under a blanket. I didn’t eat anything and vomited once. Exasperated, I took some preemptive antibiotics. Maybe ALS Day had been more strenuous than I previously thought. Maybe I was just shedding toxins. Either way, I felt pretty damn awful. The following day I felt a lot better and I answered all of my email prompted by ALS Day, because we always write each other after one of these gatherings to exchange stories and experiences.

TV show

I’ve had a VHS tape of a TV programme about life with ALS for over 6 months, but I never had the courage to actually watch it. Two weeks before ALS day I received an email from Loes Claermont, one of the people featured in the TV show. I had corresponded with her before, but I didn’t put two and two together then. This year would be her first ALS day ever. She was warmly greeted, despite the fact that she was very upset about the things she saw and heard. Loes has a very slow-acting form of ALS. Meeting her made me curious and I watched the videotape. I cried a lot, but I also saw a lot of myself in her. I was touched by the other featured patient’s reflections on being curious about death and wondering if he could still be with them after passing away. I often wonder the very same thing.

Football

Saturday has become football day. Ward played with his team for the very first time today. He had been training with them since September. His team is comprised of a lot of his classmates. Floor played her second match today. And thus, slowly but surely, Saturday turned into a day of football. When the weather is fair and the match isn’t too early, we’ll come watch the match too. I wonder what they’re like on the field. I have never seen Floor play. Seeing as I used to play as well, I’m curious. We went to see Ward play on Saturday. He’s quite the acquisition, according to his teammates.

Traditional food

My childhood dinners were often just potatoes, greens and some meat. Student housing was a culinary revolution for me. No more hotchpotch. But with young kids, simple Dutch dinner has its advantages. Intricate dishes just lead to more pickiness and digging out unwanted ingredients. Just as the kids are learning to like more exotic cuisines, their mother has become wholly dependent on easily mashable food. In that regard, there is nothing better than vegetables and potatoes (meat is a bit trickier). Thus, we have a very traditional menu; beetroots on Monday, green beans on Tuesday, leek or spinach on Wednesday, spaghetti on Thursday, hotchpotch on Friday, the kids get to pick on Saturday and we eat takeaway on Sunday. It’s horribly predictable. Sometimes, we even willingly eat Brussels sprouts, until Floor got horrible stomach cramps for which she had to see a doctor, an intestinal colic. We’re hesitant about eating sprouts again. The kids don’t like this traditional cuisine. They’ll start to appreciate it once they grow older.

Teenage daughter

I had a row with Floor this morning. She wanted an allowance and I asked her why. She saw that as a provocation (turns out, she wanted money to buy a rose to give out on Valentine’s day and hoped I would finance it). It’s hard, only being able to speak if the other party is patient enough to listen. Good luck finding patience in an angry teenage daughter. She left for school, still upset. I hate that, but at least the fight is over. Actually, I’m left feeling angry. She’s quick to start yelling, something I don’t really have an answer to. Usually, we make up. We calmly talk about it. Sometimes, I write her an email. Still, it’s rough.

Holiday

On Friday we’ll be leaving for Tubbergen in Twente. Like every year, we’ll be accompanied by Hein’s family and hope for fair weather. We used to go skiing. Surprisingly, the kids don’t complain about that at all. In May, we’ll be visiting Westerbork with family friends. We made some half-hearted attempts to plan a holiday to England, but the country is not really suited for the disabled. In that regard, The Netherlands is still a frontrunner. This summer we’ll be going to Zeeland. We’ll stay a bit closer to home this year. The kids hate it. It’s the fact that they have to tell their friends “We’re going to Zeeland”. The camping ground has surfing and sailing, plenty of entertainment. It’s an image problem. Snobs.

Dexterity

One of my feet bends inward while the other goes outward. That’s why I have special shoes. They allow me to stand for over 5 minutes. Without my shoes, I’m helpless. They’re elongated on either side to prevent me rolling my ankle. I think my shoes are some of my most helpful tools. Thanks to them, I was able to keep walking and using the bathroom on my own. I noticed that nobody at the ALS Day wore them, while most of them probably have painful feet.
Another great invention is the contraceptive injection. No more fuss. After a small buildup, I only need the injection every 3 months. My GP treats me at home. I remember asking my neurologist about stopping menstruation, but he just scratched his head. Most neurologists are men. Luckily, one of my fellow female ALS patients put me onto it.
And then, of course, there’s the head mouse, a marvel of technology to the uninitiated. How could it be possible to guide the mouse with only your reflection? Currently, the two builders we hired to repair our roof are gazing at me in fascination, watching me work. Everytime someone comes to visit, I give them a demonstration. Mouths fall open in amazement. And indeed, it is a marvel. The world has become a lot more pleasant for ALS patients because of inventions like these.
Okay, I’ll also admit, last but not least, my standing patient lift is useful. I’ve gotten used to it and I’m very content with the ease and the speed with which it allows me to use the toilet.

Corrie online

My mother is improving. She doesn’t write long paragraphs anymore, now knowing that the return key skips a line, and the random capitalization has become less abundant after she found out what the CAPS key does. My previous entry gained me a number of responses. Liesbeth Koenen (a journalist and one of my readers) sent my mother a copy of her booklet Email Etiquette, a book for beginners, as a helping hand. Another reader wrote:

I liked reading about how your mother, too, has started using the computer instead of calling. My parents have also bought a used PC and are doing their utmost to learn, but they also run into some strange problems. The other day, my mother complained about the screen not turning on while the computer was running. When I came to look at it, it turned out they had forgotten to turn on the monitor. But I do like the fact that they’re trying to stay up-to-date.

And like that, many other parents are working hard to catch up to their kids.

What do you say after you said hello?

That was the title of a popular book for shy people: how do you keep a conversation going? A pertinent question, now that I’m only intelligible to a select few people. The answer is: you can’t really. Without an interpreter at my side, I’m helpless. Conversation is a one-way street. It’s something not many people are good at. People like a response. If Hein isn’t with me, I’m in for a world of awkwardness. People want to talk with me, but they can’t. After their first question to me, the convo ends. Eye contact becomes uncomfortable. That’s how it goes for the rest of the night. That’s why I like to avoid large crowds. Intimate contact is impossible, partly because of the noise. I concentrate on the card game. In smaller groups, I’m always terrified of my translator going to the kitchen to put the kettle on. There we are, awkwardness mounting. Luckily, my interpreter makes a swift return. I do admire people who are courageous enough to attempt talking to me.

And how are your toes?

They’re great, thanks! Because of the fluid retention in my leg I’ve started wearing a tube grip, a kind of stretchy bandage that keeps the fluids at bay. Because of that, my toes are less swollen, less prone to friction and have an easier time healing. In addition, my shoes aren’t as tight as before. In short, a welcome change.

Spring break

I feel more uncomfortable when I’m away from home. My routine is broken. I don’t sleep well, which is not an issue at home. I sleep my days away. The toilet is too far removed from the wall, making me slump like a sack of potatoes. We’re with a large group and I feel like a spectator, except for the time we spend playing games (we played a lot of Settlers of Catan). The family is helpful. I was stupid not to take my laptop with me, I would feel a lot more self-sufficient if I had. The weather was not cooperative; cold winds, rain, with a small amount of sunlight in between (when we got back home, the sky was blue again). Still, we saw a lot of the surrounding countryside. I especially enjoyed our visits to Ootmarsum and its galleries and Elsloo House. In Oldenzaal we visited what’s supposed to be the most modern shopping mall in The Netherlands (not) where I bought some new clothes. The windmills there looked straight out of a painting. If only the weather had been as kind to us.

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