After Monday, everything has gone back to normal. I wasn’t looking forward to it. I liked the holiday lifestyle: going to bed late and sleeping in. Being around Hein and the kids. And January is always such a boring month. I noticed that I was more anxious for Hein to come home during the first week. By the second week of January, I had adjusted by his comings and goings. Still, I will never not feel relieved when he gets home.

The pedicure

A toenail on my other foot has gotten infected, it’s swollen, red and leaking fluids. Standing has become painful. And my other toes are likely to become infected too. Hein found it in the phone book, which offers a myriad of pedicures. Luckily, we found one closeby that was willing to come by on the same day, following one rather urgent phone call. She was very competent. She trimmed two ingrown toenails and trimmed the others short. She was worried about the infection, though. But the wound is now unobstructed and it’s not as irritated now. The pain has subsided somewhat. Tonight, I’ll take my first foot bath in a long time. I have a foot deformity and crooked toes, making it so that every time I stand up, my toenails get the worst of it. I’m going to keep seeing her. These are the secondary problems caused by ALS. I panicked a bit on Monday when, despite of my pedicure, my legs buckled from pain while trying to stand up. I have enough to deal with already, I didn’t need this. But after a few antiseptic foot baths, the pain and the infections have all but disappeared. In addition, we have contacted the shoemaker about the possibility of some adjustments of my footwear to compensate for my clawing toes.

The homeopath

I still visit a homeopath in the Veluwe every 5 to 6 weeks, quite a trip. We went again in early January. Generally, my scores are fine, barring the occasional dip. My blood is slightly toxic. It didn’t score that well this time, either. It’s probably got something to do with Christmas dinner. But according to him, the winter may have had something to do with it. The lack of sun could be bad for my central nervous system. I’ve resolved to spend more time in the sun (by the window). Sometimes, Ward pushes my chair to the window and says; “sun therapy, mom?”. Yes, son. All things considered, I can hardly wait for spring.

Herd mentality

We tried visiting the Municipal Museum in The Hague, an exposition about Picasso and other Spanish painters. Of course, we picked the wrong day with the wrong weather. Like us, hundreds of other people had decided to spend this rainy day in a museum. There were queues down the street. We decided not to go. Eventually, we settled on the Museum Mesdag. Not a bad place to spend a rainy day. Thankfully, the kids stayed home. They’re going through a brief period of Nintendo addiction, which they play together.

Talk

I’ve been getting a lot of feedback after writing about missing small talk, my house, garden and kitchen conversation. I got mail about moving house, a temporarily evicted husband and experiences with online dating. I exchanged puberty-stories with the mother of Floor’s classmate and best friend. Lots of people came to visit; Ward’s teacher came by for a parent-teacher conference, an unknown cousin of Hein’s whom he emails sometimes and one of my soon-to-be ex-colleagues with whom I’ve worked for over 13 years. In the tea parlour we exchanged stories about our kids with other parents. Long live smalltalk.

Corrie online?

My mother has had a second-hand computer, boughts specifically to chat with me now that using the telephone has become impossible. That way, my mother can stay informed. My brother and I weren’t hopeful. Some of the questions she answered didn’t inspire much optimism. At first, I would only receive emails written with someone else’s help. But a month ago, she managed to do it without assistance. Of course, she called to ask if it had arrived properly. It had. By now, it’s back to radio silence. Somehow, the thing just won’t work anymore. Even an expert didn’t know what was wrong. Now we’re just waiting for a wizkid. My mother spent hours working on her uncooperative computer. Sometimes, she’d rather throw the thing out of a window. Hats off to her for even getting this far. All of this trouble, just to connect with me.

Bowel movement

If you don’t suffer from ALS, I would advise skipping this part. You see, pooping is an issue with ALS. Lacking movement and difficulty breathing aren’t very advantageous when using a toilet. Every day, I take my tea with lactulose, a laxative. It really helps, except when I’m on holiday. Everything’s wrong, a different schedule and odd, often uncomfortable toilets don’t help. Sometimes, the laxatives are too potent and I end up with diarrhoea. Not a good time when one is immobile. By a stroke of luck, I discovered that I only get diarrhoea when I take my laxatives too far ahead of a meal. Preventable. And thus, things have been going fine. Another one of those secondary ALS problems.

Het bericht Diary January 2002 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.

It sounds strange, but the fewer faculties I have, the less I’m bothered by what I can and cannot do. These days, I’m losing less than I was during the first few years, I’ve been like this for a long time. At one point, I wrote down when I’d last done certain things, like biking, autonomously using the bathroom, etc. I was consumed by it. Once I made that list, that was that. One grows a thicker skin. The sadness I felt when losing motor functions lessened. I’ve banished some of those thoughts, perhaps subconsciously. Sometimes I do feel envious when the kids cling to and cuddle with Hein. I’m not much of a cuddler anymore. It’s a mutual effort. But this pain, too, is only proportional. Maybe I’ve just become desensitized. “Don’t think about it too much, Jet” was my mantra back in the day.

Tired

It’s obvious that I’ve become more fatigued. I have to find motivation to get myself to answer emails or write other things, and I’ve been napping more and more. Dozing away is a daytime activity in itself. In the morning I feel especially feeble.
It had been 4 months, but this week we went to Utrecht again. My lung capacity and spirometry were the same as last time. Despite that, I feel more sluggish than before. Maybe it’s boredom, my days aren’t exactly varied. And I do love doing new and challenging things.

In good company

We had a gettogether on Sunday, three couples. All of the women (ranging in age from 38 to 48) have ALS. It was a cacophony; three barely intelligible women and three men acting as interpreters. It was nice though. We’re very mumbly, so when we’re speaking we require absolute silence. Ineke only has bulbar ALS, so she resorted to writing her thoughts on a board with a marker and holding it up like it’s a scoreboard. Hanna can still speak, with her husband occasionally providing some clarification. And through Hein, I can speak just fine. A remarkable meeting, though it sounded very strange.

Boredom

It’s finally happened. For the first time in all these years, I have no clue what to do. Before, I had every day planned out. Nowadays, my thought process is more like:

“I could answer my mail.”
“I could write in my diary.”
“I could work on the kids’ newsletters.”
“I could play some bridge.”
“I could…”

But my passion is nowhere to be found. All of them are repetitions. Is it just that time of year? Is this just a phase?

Sunday was awful, nothing to do all day. I was like a zombie, staring at my computer screen. And, of course, we had a row. My social circle has shrunk considerably since I fell ill. It’s especially noticeable during the weekends. We could really use some distraction, even going out for some coffee would suffice. Before, we didn’t feel the need for contact with other people during weekends; the four of us would just go on day trips together. But now even that’s over. OK, I guess I’m a little sombre today.

Habits

A fellow ALS patient and friend of mine wrote an article on habits. She has already started to give her carers and loved ones instructions, because she would like to preserve her old habits while she’s being cared for. Of course, articles like this one are made to be responded to. I only partly agree with her. Habits are not static, they change as your condition changes. Before, the four of us would go on excursions, but nowadays the kids don’t come with as often. In short, as changes occur one has to reevaluate their habits. The same goes for ALS. Time and time again, you’ll have to check whether a ritual is still sustainable and, if it’s not, disposable. How much effort does the carer have to put in, and how much are you willing to sacrifice to preserve your rituals, how much are they worth to you? You’ll have to rank your habits: which ones are disposable and which ones do you want to preserve at any cost? Even there, you’ll have to compromise sometimes, and that’s a good thing. Habits and routines are not sacred, they’re made to be practical. For not always having to think about what you’re doing. The people who do well with artificial respiration are often passive types; people who are able to let things slide. I’m far from passive and I prefer to be in charge. I do empathise with the sentiment of the aforementioned article, but (painstakingly) I learned to make certain concessions.

Expert

Because of my webpage, I get piles of questions about ALS. University students are the worst offenders. “Could you send me some information about ALS so I can finish my thesis?” No specifics, no further information, like I’m some sort of institute. People probably don’t realise how much effort it would be for me to answer every single one of their questions. Such emails usually end up in the trash. And of course, the following day I get even more questions like “I’ve heard you have a very outspoken position on euthanasia, could you please look at this case file from my university course?” Beat it, you. I only reply to personal questions and stories. I got a good example of a personal email this month.

Only five months ago, my mother made up her mind: don’t mess with my body. She has signed her living will and her GP is in the loop. It has come to a point where swallowing is difficult for her, she can barely eat normally. In short, time to decide whether to get a PEG or not. The experts at the AZU and the rehabilitation clinic presented her with the pros and cons of getting a stomach tube, telling her that the time after the operation will be arduous and painful but also telling her the benefits of having a feeding tube. This week, her GP paid a visit. He told her he’s heavily against the application of a PEG. First off, because she didn’t want one in the first place, secondly because – put bluntly – people who want euthanasia shouldn’t use medical procedures to prolong their lives. Lastly, on top of that he told her that her life would be even more miserable with a feeding tube because it would affect her breathing. And my mother is scared to death of respiratory problems and having to fight for air.

Expert? Me? No, I’m reacting purely from an emotional standpoint. And right now, I’m furious at GPs like this one. My reply:

Go with the feeding tube. Starving is an awful sensation. Her GP’s position on this is horrifying. The desire to be euthanized is rooted in dread and fear of future pain. Essentially, it is a plea to forego any more unnecessary suffering, not a desire to die. That’s exactly what a PEG does, it prevents unnecessary future pain. I think it’s a GP’s job to discourage euthanasia, instead focusing on improving patients’ quality of life and easing their pain. Keep in mind that family physicians know very little about ALS.

It hadn’t been a week since this email when I got another one from the wife of an ALS patient. She wrote that her husband chose euthanasia; he couldn’t deal with the constant deterioration. As it turns out, there are plenty of reasons for euthanasia. I am not an expert, I’m busy enough tending to myself. No more advice from now on.

Eggnog

For my birthday, I asked a friend of mine to make me some eggnog. I’d only had it three times and everytime I did, she was there: in America, on New Year’s Eve and on a skiing holiday. I remember it being runny and tasting like rum. I asked Marjolein to get some thicker straws from McDonald’s, because I expected to have trouble drinking it with a normal straw, and she did, which she found a bit embarrassing. I was prepared for the nog, but it still hit me like a truck. Maybe it’s because I’m not used to alcohol. The smell of rum and whisky was overwhelming. I threw in the towel after half a glass. Has it always been this alcoholic? I don’t recall. Another good case against trying to relive things for the sake of nostalgia. However, I consider this more of a new adventure than anything else. The result was a liter of unfinished eggnog and a whole bunch of McDonald’s straws Marjolein had bought for me (not knowing about my upcoming eggnog experiment). I saved the nog until my real birthday. But then Hein flushed the leftovers down the toilet. A bit of a shame, seeing all that work go to waste.

47

I celebrated my birthday on Easter Sunday. Easter breakfast, unwrapping presents, an easter egg hunt in the back garden, putting the clock ahead one hour and having the family over at five. The day flew by. We’d had a bridge competition with friend the night prior. The weather was amazing too! I sat outside every day, devising new plans for the garden and beaming at my new plants. Bliss.

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

One of Hein’s uncles also has ALS. My mother-in-law keeps us informed. Today my mother-in-law, Floor and I were chatting around the dinner table. Our conversation was going down a grim avenue. I don’t want to discuss stuff like this with the children around. But how does one bring a conversation like this to a halt? I gestured at Floor a few times. My mother-in-law didn’t pick up on it. Walking away was not an option. Shifting the subject wasn’t either. Bluntly, I yelled “stop”. Seeing as my mother-in-law can’t understand what I say, Floor had to translate. And Floor thought I was being terribly rude. With some shame and an accusing look, she told her grandma to “stop”. My mother-in-law attempted to resurrect the conversation, but again I yelled “stop it”. Sure enough, the subject was dropped, but because of my insolence, Floor is mad at me. Granted, nuance and courtesy are things of the past for me. But how do I explain that to Floor?

Monday’s caregiver

On Monday, I sent my mother home. That morning she had gone to the doctor who had diagnosed her with bronchitis. She was coughing and gurgling. It’s much too risky. Besides, I’d only worry about her and being fed by her would be very uncomfortable. She left only 15 minutes after arriving. It’s a bit of a rotten thing to do, but bronchitis is the last thing I need right now. I guess I’m being rude again. Luckily, Floor was more understanding this time. On the Monday after, my mother’s cough still hadn’t fully disappeared, so she donned a mask. After having no luck at three separate chemists, she had bought one at the construction market.

Mood

My mood has gotten a lot better because of the weather. All of the plants, my birthday gifts, have been put in the garden. It’s gorgeous. I’m in the garden for hours a day, just contently taking it in. It does mean my mood has become dependent on the weather.

Events

We did some things again. Last week we saw Cirque du Soleil. It was a once in a lifetime experience. It was something else. The tent was next to the ArenA. It’s mainly acrobatics with jokes and antics and beautiful costumes and music. The kids were not thrilled at first, because this was a mandatory family excursion (apparently, fun can’t be had without elaborate pre-conciliation), but they warmed up to it. We were all the way at the front. Afterwards, my neck hurt from all of the looking around.

And we went to the theatre: Orestes, a tango night. Ever since the royal wedding with Maxima, tango has become all the rage. It was thrilling.

And on Friday, I’ll be going to Rotterdam with friends to see the play… The Vagina Monologues. A show not easily discussed without feeling embarrassed (one of us even covered the appointment in her planner with her hand whenever she had the page open, and preferred to talk about the show with euphemisms). It was a smash hit in America. Three Dutch (semi-)celebrities orated, reading aloud emotional, hilarious and shocking stories. None of the men wanted to come along. Hein and Ward went to explore Rotterdam after dropping me off. (It was a genuinely funny show with some very relatable stories. Between monologues, there was a lot of audience participation. About 95% of the crowd was female.)

And yesterday my help Inge and I searched the internet for tickets to a Marco Borsato show. To my surprise, there were still disabled seats available for Friday, June 14th in De Kuip. On a whim, I ordered them, without discussing it with anyone. My family had mixed reactions, but I think that, deep down, they’re excited too. Ward is the only one who’s openly enthusiastic. He’s hoping for a guest appearance from Sita. I’m looking forward to it.

Essay

The third reason for my heightened mood is the fact that Ward has to write another essay. I’m needed again. Hooray! Nothing is more fun than being needed. The essay is about the Olympic Games. His first accomplishment was writing a letter to Prince Willem Alexander, a member of the IOC, with my help. He immediately received a reply from the royal family. Sadly, they didn’t answer any of his questions, but the letter was a nice gesture.

Stickler

Drinking is not easy. I often up the ante for my caretakers. Not because swallowing is hard, but because my lips aren’t as grippy as they used to be and my neck becomes tired easily. Thus, I command them: “higher, lower, bend it more, straighten it out”. If the straw is straight as an arrow, I can’t get the drink through. If my straw isn’t supported by the bottom of the cup, it slowly slips out of my mouth. If my straw shifts around in the cup when it’s held askew, I lose my grip. If the cup is held too high, my neck does too much work, which drains me. It’s a sensitive process. Thus, I give commands by the number. Sometimes, Hein threatens to put my drinks through my PEG from now on. Granted, it’s easier. But I’ve noticed that drinking prevents me hawking up too much phlegm. Thus, we’ll continue drinking like we do, according to my strict instructions, some of which are gibberish to my confused caretakers.

May holiday in Westerbork

On Friday we returned from Westerbork. While the weather left much to be desired, we had a lovely week. Our bed was highly comfortable, it’s no patient bed but it was high and wide, affording me a good night’s sleep and tranquility, both physically and mentally. No anxiety, no mess and a good toilet that was well-positioned against the wall. Other than that, our cottage was a bit sombre and not very cosy. But our fellow holidaymakers had a beautiful waterside house, with a terrace on a jetty. It also had a sauna and a tanning bed. The kids slept in the other house and made full use of the sauna. The park had go-karts, canoes and a tennis court, so there was plenty of entertainment. And the trip once again bolstered my belief that weathermen are not to be trusted. Despite the rain, we hiked to monuments, we visited Orvelte, walked a forest trail, visited the model gardens of Ruinen, visited the Westerbork Holocaust Memorial Centre and paid a visit to the tiny prison museum in Veenhuizen. Drenthe is an excellent holiday destination. One downside: the province is filled to the brim with speed bumps, making every road trip a rollercoaster.

Het bericht Diary April 2002 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.

Through my friend Tineke, who works at a charity in Leiden, I’ve gotten my hands on a report I get to edit. The report entails plans for an internet cafe in a poorer neighbourhood. It’s agreeable work; correcting, removing and clarifying the text. Besides, it’s a fun and well-thought-out project. I’ll also be involved in the organisation’s annual report. It’s a welcome addition to my daily routine.

Health scare

On Friday, June 7th, I woke up at quarter to 7 with a headache, breathing heavily like my airways are blocked by mucus. I wanted to get out of bed quickly. The headache subsided. It tainted the rest of my day. Was is done for? It wouldn’t be a very convenient time. I was afraid to go to bed that night. But I had a good night’s sleep and woke up without any issues. Fortunately, it has been like that all week.

In memoriam

On Saturday, June 7th, Ineke would have been 49 years old. Her boyfriend did a show with his band in Zoeterwoude, the band Ineke used to be a part of. He did a special segment of six songs Ineke loved. Being there was hard. Hannie, a fellow ALS patient was there too. We sat next to each other, our husbands behind us. When the band took a break, the dancing started. Both of us were lost for words. I left. I miss Ineke’s sparkling, dazzling personality, despite the fact that I knew her in writing only.

Marco

It became obvious that we’re not part of the concert-going crowd. Floor was the only one who dressed up. Hein decided last-minute to change from his office attire into a t-shirt and a cool jacket. We left at 8, way too late, and got stuck in the ‘Borsato traffic jam’. The concert commenced at half past 8, but we only got there at half past 9 and we would have been later, if it hadn’t been for invalid parking. It was an impressive sight, a filled football stadium. What followed was another misconception. We thought the disabled would have some sort of shelter from the rain. We thought wrong. In the roofless stadium, they had built some bleachers facilitating about 40 disabled people and their companions. Above us, the clouds had turned grey. Ward was the only one who had brought a raincoat. But we were ready for the concert to begin. After Marco sang a ballad while suspended from a crane, BLØF took the stage. When they were done, Marco sang his greatest hits, everyone sang along. Sadly, we had missed Sita’s performance. Floor was in charge of food and drinks. Ward was mighty impressed. Were they the youngest people there? At 11 a thunderstorm started. After 10 minutes we called it a night. I didn’t feel like getting sick or getting stuck leaving the stadium.

Tropical day

I survived this year’s first tropical day. We kept the windows and doors shut to keep the cool in, cool being 24 degrees. The room became a safe harbour from the heat for everyone. I just can’t take the heat anymore. My night was horrific. I woke up as many as ten times and hein had to roll me on my side.

June 21st, World ALS Day

We should have been in Uden today, where World ALS Day took place. But we decided not to go. To my surprise, the ALS charities gave me a bouquet of flowers the night beforehand. I immediately felt guilty for not going. Still, Uden is a long ways away for a minimal programme where meeting each other is the main selling point. The thing is; most people I know weren’t going either. Meeting new people requires a certain attitude, one I didn’t feel I could muster up. Thus, we stayed home.

Neck pain

During a car trip, I was sitting in my wheelchair, stiff as a board. As a consequence, my neck hurt. It got worse during the following couple of days. It hurts at night, too. After taking a few painkillers, the pain subsided. I don’t need this right now. I need my neck for everything I do, eating, drinking, controlling my cursor. I cancelled some appointments, I get tired easily. Once again, I realised how lucky I am that ALS is not painful. If it was, I don’t think I would have lasted this long.

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

Talking to people while I’m sitting in a wheelchair is a delicate procedure. When it’s just me and my accompanist, I prefer my conversation partner in front of me. When we run into someone on the street, my back is usually to the person striking up conversation. When that happens, I always screech “turn!” so I can at least look at who’s talking. That doesn’t mean I’ll feel involved; I’m way lower than anyone else, after all. But like that, I can at least ask questions, through Hein. The worst thing is being in between two people having a conversation. Hein, unreachable behind me, the person he’s speaking to in front of me. It makes me feel superfluous, and I lose interest.

Broken appliances

Last night, my chair started acting up, tilting forward, making me slide off. Luckily, Hein was next to me and saved me from a swift slide to the floor. It’s awful when you can’t rely on the life-saving appliances. So now, lacking a better option, I’m in my wheelchair. It’s a lot harder to type, because I’m seated further from the PC. Last week, the spring in my shower chair gave in. Right now it’s always slightly retracted, making it a nightmare for Hein to put it down properly. My desk chair is now permanently in 4th gear, completely useless, pushed to the side. And it always takes days/weeks before the problem’s fixed. And so I’m always worried if I’ll be alright without those appliances for a while. It stresses me out. By now, my chair is fixed, but my faith in the seat has been tainted permanently.

Good news

I went to Utrecht for a respiration checkup again. My lung capacity has been stable for three tests now (meaning around 11 months). It’s around 1 litre (30%). I’m pleased with that. The test itself is proving more difficult than ever. The mouthpiece doesn’t fit my mouth anymore. Add to that a pin on my nose, and I’m totally lost. I do fine when I’m allowed to decide on my own breathing pattern. The subsequent talk with the pneumologist is always a treat.

Bad news

Hein’s uncle who was also suffering from ALS, Piet Verkleij, has passed away. And Ward’s school teacher has fallen deathly ill too. We try to shield the kids, but the outside world goes on regardless. I wrote a letter to Ward’s teacher, which left me upset for the rest of the day.

School’s out

The end of the school year is also a time of reflection. I’ve been blessed with another year with my children. I’m thankful for that, also for the way that Hein and others have made staying home a joy. Quietly, I’ve been thinking about the next year of school; Ward’s exams, choosing his secondary school, a school musical and Floor choosing her school specialty. But I’m afraid to look too far ahead. First, there’s the holiday to Zeeland. While watching the Tour de France I felt the pangs of nostalgia for exotic holiday destinations, but the heatwave we’ve been having the past few days has reinforced my belief that Zeeland was a good choice.

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

We got back from Zeeland in mid-August, in the nip of time, just before temperatures soared. Hein, the kids and Lieke (my sister-in-law) took 5 days of sailing lessons. The first time they went on the Veere lake, they got caught in a thunderstorm. Luckily, they were quickly dragged to the shore. The following days were more fair and I was able to watch everything from the veranda, including their graduation from sailing school. Lakeside holidays are special; there’s a lot to do and to see, and by nightfall the still lake and the town of Veere behind it make for an extremely tranquil view. And the kids went water skiing, rode the banana (a six-man inflatable vessel in the shape of a banana, pulled by a motorboat at incredible speeds. I’d never heard of it but apparently every self-respecting lake has one) and played table tennis.

The cottage was spacious and wheelchair-accessible. The veranda was roofed and had a nice grassy view. The kids camped out, 100 metres away. That was good for my morning rest. Much less of a full house. I’m usually up early, sitting at the dinner table, washed and ironed as Lieke likes to call it. Lieke and my mother-in-law took the van on an extra trip to Leiden and back so I could be as comfortable as possible; desk chair, shower seat, patient lift.

Of course, we visited some towns as well: Goes, Willemstad, Vlissingen, Middelburg and, of course, Veere. And while my role was that of a spectator, I’d call it a successful holiday. All of this, no more than two hours away.

PEG troubles

Two months ago we stressed out a bit because of a leak in my feeding tube. Hein phoned everyone he could and eventually, Professor Mathuus was able to give us an answer: Hein would be able to fix it himself. Screw off the cap, snip off the tube at the leak and reattach the cap, simple as that. This holiday it happened again. In the middle of the night, I felt water (well, actually it was stomach acid) leaking out of it, accompanied by a lot of bubbling. The rest of my night was filled with fearful dreams of another PEG operation. We knew how to deal with it this time, so the next morning we snipped another length of tube off. But the next day it was leaking again, then again, and even a third time. Turns out that the innermost part of the tube was being eaten away. Again, Professor Mathuus (a most gracious professor who always returns my calls) knew what to do. When a PEG-tube is down to 10 centimetres, a thinner tube is attached below the older, wider tube. Nothing internal. You can imagine my relief. It’s almost 10 cm already!

By now, we’ve visited a doctor, more for additional comfort than anything else. Besides the thinner tube method, I could also choose to have a new PEG installed. The hole is already there, after all. With an inflatable balloon, the PEG is kept in place. The only downside is having to poop out the old cap later. With lighter hearts, we went home; at least I wouldn’t need another tube down my throat.

Surprise

On August 20th, Floor turned 14. Her girlfriends had organised a surprise party. At 12 AM they would be at our door, completely unannounced. Equipped with sleeping bags, of course, to spend the rest of the night chitchatting and keeping us awake. We were aware of the plan. Floor was supposed to already be in bed, but at 12 she was already demanding her birthday presents. At 00:05, there were 5 girls on our doorstep with confetti cannons and serpentine streamers, some of which are still floating around, one week later. It was a successful ambush, it took Floor completely by surprise. The next day at 12 o’clock the girls left, to be back at 6:30 for a rainy barbecue. Floor didn’t want a birthday cake this year.

Camp week

During the last week of summer break, the kids went to camp. Floor to La Roche in Belgium and Ward to Heerde in the Veluwe. They left on Saturday in the streaming rain. It’s so quiet at home without the kids. We had a little holiday of our own. Lots of evening activities and on Tuesday afternoon we went to the botanical gardens, to an exposition about carnivorous plants. We’ve already got one ourselves. Fascinating, but plants with the prefix of “flesh-eating” are a whole lot more terrifying than the average geranium. We’ve put it next to the fruit bowl so the plant can eat all of those pesky fruit flies (I’ve actually seen him eating one before). On Wednesday, after my homeopathy appointment, we went to look at gardens in Nunspeet. They did not live up to my expectations. We spent the evening in our friends’ torchlit garden, lovely. Despite my non-communication I felt like I was part of the conversation. Thursday- and Friday evening were spent on the beach. And during the weekend, Hein biked the Amstel Gold Race, 150 kilometres. He deserved a weekend without having to worry about me. Lieke took care of me that weekend. I slept in my chair in the living room, with Lieke next to me on a stretcher. My neck hurt somewhat, but I felt fine the next day. And the kids? When they returned they were dirty, tired, hoarse but they had a great time.

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

I often feel undignified. Using a bib, food in and around my mouth, lifting up my t-shirt in order to drink through my PEG and dropping my trousers for a contraceptive injection. The briefer these moments are, the better. Hein can’t wrap his head around that, only seeing the practical side of things. But my goodness, do I feel unhappy while wearing a bib or lifting up my shirt. I know that dignity is mental, but sometimes I have trouble remembering that. Thus, I often ask the people around me for help. Women are better at sensing it than men. Yesterday we left a party. Whenever it’s not too cold, I put on a blanket. Of course, it has to be removed and stowed out of sight before I arrive and it has to be the last thing I put on before I leave. Yesterday, Hein pulled the blanket out in full view of everyone and, of course, I yelled out the age-old: “Not yet!” Gisele, a friend, understood me at once, while her husband agreed with Hein’s pragmatic approach, not knowing what I was worried about. We felt connected.

Denmark

Floor will be going to Denmark in late September on a student exchange with a Danish high school. Yesterday she got the news that she was the only girl who was matched with a boy, a boy who only listens to hardrock. Floor is already dreading it. His portrait is on our corkboard; upside down. It’s really too bad, it would have been a unique opportunity to experience Danish life. In April the Danes will be coming to the Netherlands and the boy will be staying with us. The preparatory parent-teacher conference didn’t exactly alleviate our concerns. A boy had put “getting drunk” as his hobby and had been taken from the program immediately. Apparently, two years ago the exchange programme had had an incident involving a bunch of drunk Danes in the Netherlands. That’s not too uncommon in exchange programmes. Inge told us about French students smoking weed and German students getting tongue piercings in Amsterdam.

Winter sports

We booked an early winter holiday to Austria. Landal is opening a new park there, including new wheelchair accessible housing. I’m looking forward to getting into the winter holiday spirit again and sitting on a terrace.

We celebrated a bit prematurely. It turns out that our booking had been overwritten. Besides, they didn’t have a clue about the accessibility of the cottages. The park won’t be ready until November. It’s a shame. Right now, we’re looking for other options, because the kids were so enthused. The last time we went skiing was 5 years ago. The kids weren’t bad at it. Finding a suitable replacement destination is going to be difficult. \

We may have found an alternative; a Rolli hotel with a brochure full of people in wheelchairs. It’s surrounded by mountains and close to a small skiing range. It advertises wheelchair hiking trails from 3 to 30 kilometres.

Inge

September 1st marks Inge’s 3.5 years of working as my most trusted caretaker. She used to work for 6 hours a week, by now she does 11. During holidays she often works overtime to fill in for Astrid, my other carer. Fortunately, Inge decided to study law as well as French, meaning she was able to stay with me for longer. By now, the end is near. She submitted her thesis this week. All that’s left to do now is spell checking, designing a cover before she gets her degree and starts looking for work. She has already booked a holiday to India. Oh well, that’s only in December and besides, the expects she’ll still have time for me after that. But still. Inge has become part of our lives. She’s one of my best interpreters, she’s always there for me and we have rituals only we share. I’ll miss her, but I do with her all the best at her new job.

Losing weight

Because weighing me is impossible, I often wonder whether I’m losing weight. I’m currently doing anything not to lose weight. I eat my sandwiches with big dollops of butter and, besides my normal meals, I eat heaps of chocolate and butter cakes. This summer I finally got proof that I’m not losing weight. Hein couldn’t button up my shorts.

Hesitant

I’m wondering if I should continue publishing my monthly diary. They’re becoming more repetitive by the month. How many times can I write about my life in and around my house? By now, new insights are rare. I guess that means I’m settled into the situation I’m in. On the other hand, keeping a diary does give me a goal in life and, of course, pleasure and a lot of correspondence. I’m still unsure. But, like my doctor said, “never change a winning routine”.

Power bitch

“You are just radiating power [She used the word “power” in a Dutch sentence. -Ed.] (a real “power bitch”, according to one of Marjolein’s colleagues),” a few people told me at a party. Am I supposed to be glad to be a power bitch? Marjolein told me I should wear it as a badge of honour. Supposedly, it’s a good personality trait. I don’t like it. I hate using English words. “You’re just radiating “kracht” [Dutch for power. -Ed.]” would have sounded way more pleasant. I hate how the word “kids” has been inducted into the Dutch lexicon. “Hoe gaat het met de kids?” [“How are the kids?” -Ed.] Awful.

Summer is over

Summer is obviously over. I used to sit in the garden every day, by now I haven’t left the house in a week.

Spiritual

We just got an invitation from Vincent Straatman (founder of Valscherm, an ALS charity) to his baptism. I know one other ALS patient who had an adult baptism and had his marriage officiated in a church after the fact. Both of them walk(ed) a more spiritual path following their diagnosis, the inner path. I’m a tad jealous. I’m too preoccupied with the real world, so mundane. I guell I’ll take comfort in the thought that everyone has their own purpose on this earth.

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

On Tuesday night my PEG gave out completely. Right now I have a 4cm tube sticking out of my stomach and the cap no longer fits. The contents of my stomach were spewing out. After closing the tube off with a clamp, my PEG spent the whole night dripping fluids. It’s not a good time, let me tell you. The next day, Floor discovered that the clip we use to reseal bags of peanuts was the perfect way to seal the tube; no leakage. Too bad it’s so huge. Every time Hein put me on a chair, there was a chance of it coming loose. My greatest fear was, and is, the tube retracting inward, meaning I would need a new endoscopy.

On Wednesday we visited the AMC. Just as I needed him the most, it turned out our professor wasn’t available that day and nobody else was trained to install a new PEG. Thus, we had to improvise. In the end, I went home with a clamp used for umbilical cords (my idea) and a bandaid to keep the tube from going inward. I can’t use my PEG anymore, but that’s not much of an issue. I’m perfectly fine without it. The average lifespan of a PEG is 2 years, I’ve had mine for 2.5. I’ll hopefully be getting a new one on Monday.

By now, I’ve got it. It was a cakewalk. Despite that, I’m always incredibly nervous in moments like this one. My mouth cramps up and my teeth chatter. Good luck talking to doctors, who are likely already low on time and patience. The worst part was the laxative treatment to get the old cap out of my system as quickly as possible. I took 2 litres of laxatives in 2 hours. Luckily it was relatively manageable, no incidents. My only question: did I actually excrete the cap? I hope this marks the end of my “troubles”.

Aesthetically, my new PEG leaves much to be desired. The cap is bulky because it has three valves; one for water, one for medicine and one to fill the balloon in my stomach with water. As a consequence, it keeps tumbling around under my bra. When I look down I can see it bulging out. Right now it’s still concealed by winter vests, but come summer it’ll be very visible. All of that for a thing I barely use. For that reason I’ll probably have a word with my doctor. These troubles aren’t over yet.

Power outage

It’s a thought all of us have sometimes; what if the power were to go out right now? It happened on Sunday. The light had been flickering for a while beforehand, which is when the thought first crossed my mind. I calmed myself though. The lift was still working, so I’d just go upstairs. Barely a minute after I got off the lift, everything went pitch black. What if I’d been on the stairlift when the power went out? Luckily, Floor and Hein were quick to find some torches. Apparently, our whole street was out of electricity. For a while, I thought “luckily I’m already upstairs, I can still go to bed. But I forgot that my adjustable bed is always upright to make getting in and out easier. That position makes sleeping in it impossible. For a lack of better alternatives, I decided to sleep in a garden chair. In the middle of the night, the lights went on again. Anxiety came over me again. I don’t like surprises.

Adventurer

I’ve never been much of an adventurer, but I have never needed as much predictability in my life as I do right now. I had barely recovered from my PEG and electricity hijinks when my shower chair got stuck one morning. While I’m in an upright position I can’t hold my head up straight, meaning I can’t talk and everytime I pass a threshold I slump, go rigid and spasm. That means I’m in my chair, stiff as a board, slowly sliding down. Time to think of a temporary alternative again. Another disruption, as if I needed any more.

Art route

There was an art route in Oegstgeest on Sunday. Artists opened their doors and a few schools had expositions of art made in Oegstgeest. We had good walking weather. Because of limited accessibility, we decided to focus on the schools. Two times, I was parked outside, in front of the stairs. Schools from the 30s liked their stairs. I couldn’t see anything. By a stroke of luck, we found a gallery close to the mall, where I bought a pendant. That saved the day. And, like I said, it was a good day for a stroll.

Flags

Every email I have to answer (and I usually answer every single one), I flag. That way, I know how much work is still ahead of me. Sometimes I get disheartened when I see how many flags are still left. Other times, they invigorate me and I make quick work of them, leaving me content. But the following day, I find I already have a backlog. My happiness was fleeting.

Crap weekend

Everyone has an empty weekend every once in a while; not a thing to do. Sometimes, it’s a good time. Not this weekend. My standards for weekends aren’t exactly high; I want to at least have seen someone or have gone outside, preferably both. This weekend, I didn’t get to do either. On Saturday I was overwhelmed by self-pity. That rarely happens. I see my situation as a given, but right then I was extremely upset about being stuck in my chair, I felt bad for myself. I couldn’t even look at my computer, my eight-thousandth game of bridge couldn’t hold my interest (I still haven’t gotten any better). On Sunday there was a storm so we couldn’t go into town. In short, a crap weekend.

Hein 50

Hein will be 50 on November 6th. We’ll be celebrating it that Saturday in small company. I asked friends and family to write some things about Hein so I can compile it. You see, I have a computer program for making newspaper layouts. They always come out looking lovely. I have some work ahead of me these coming weeks.

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