We had a nice quiet Christmas break. Our hardwood floor was sanded and finished on January 3rd and didn’t take nearly as long as I’d dreaded. We only had to spend two days staying with friends, after that the smell of varnish in our house was bearable. Because I couldn’t take my PC with me, I started reading The Da Vinci Code, a very suspenseful novel. I couldn’t stop reading it and finished it in 5 days. Fortunately, one of my carers is an avid reader and turned the pages for me while she read her own book. By now I’ve also finished The Dinner Club, a novel with twists, turns, and was full of surprises. The books often don’t look good after I’m done with them. For me to read them, they need to be folded open completely.

ALS websites

Websites about ALS are springing up like mushrooms. Every patient in China has their own website to either provide information about the treatment to people back home, or to raise money to pay for their treatment. ALS has never been this prominent. Every patient in China has nothing but positive things to say about stem cell therapy and berates Dutch and Belgian neurologists, who are still skeptical about treatment in China.

I have my own theory on these alleged improvements. ALS doesn’t immediately shut off all function in muscle groups, like a spinal cord injury would. It’s a gradual degradation. The effects of Chinese stem cell therapy mainly manifest in areas that haven’t degraded fully, functionalities patients haven’t lost yet. Those are the areas where psychology is as important as physiology. So I doubt Ardi Bouter’s lungs themselves have gotten that much better, same goes for Loes, her arms haven’t improved but her voice has. Stem cell treatment takes at least six months to take effect with spinal cord injuries, which is a far more believable period of time than the instant improvements ALS patients claim to enjoy.

On Ardi Bouter’s website, which I check every day, a huge debate has erupted between believers and skeptics. Some of the biggest opponents of stem cell therapy have been threatened with being banned. I would hate that. The discussion would become very one-sided if there were only proponents left in the discussion. But the discussions have become so vitriolic that Ardi is considering closing his website.

I don’t feel completely comfortable writing about this. Loes Claerhoudt, a long-time correspondent, is currently in China and is a fierce believer in therapy. I don’t want to knock her down a peg, but I don’t want to be part of the bandwagon, nor do I want to stay silent.

GTST

Even GTST (a Dutch soap opera) has a character with ALS. Completely unbelievable. He doesn’t have any symptoms, except one time where he briefly lost his voice and fainted. By now, he’s already committed suicide. I get it. The show has to stay fun. ALS is too ugly and too real to show to its full extent. We’re an army of unintelligible, drooling, helpless wheelchair people.

Shit

I thought I had it all figured out, a summer holiday in Scotland. We were all looking forward to it, despite a few jokes about needing to bring lots of umbrellas and raincoats. But sadly, the owner of the cottage had messed up the dates: July, instead of August. We had planned everything around the assumption we could stay there in July, and Floor has camp in August. Here’s hoping they’ll have another vacancy in July, but I doubt it.

January

January is probably the most boring month. There’s nothing to do. It turned out that the fitted bridge for my front teeth didn’t fit. It had a bigger impact on my life than I had initially anticipated. I nervously kept my mouth shut in public and in company. I’ll be going to the university hospital next month to see if they can remedy it.

My fitted shoes are being as uncooperative as my bridge. My heels are too padded, meaning my feet are constantly at an angle and my legs spontaneously spasm.

Other than that, I’ve started planning my birthday party. I’ll be turning 50 in March, after all. Ward had another round of tests this month. He did far better with good planning and without builders running around the house. We’ll anxiously wait for his results. I went to a parent-teacher conference too. I was apprehensive at first, but I’m glad I went. It was a good reason to get out of the house. I’m not as mobile as I used to be. This year’s theatre season started in January as well. We went to see “The Wishing Well” by Arjan Ederveen with the whole family. But the best show thus far has been “The Veiled Monologues”, the Islamic variant of the Vagina Monologues. It was touching, crude and hilarious.

*Ardi Bouter’s website is no longer online
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Het bericht Diary January 2005 verscheen eerst op Living with ALS.

I hadn’t taken a tumble in years, but this month I fell to the ground two times when trying to use the bathroom. It’s due to a combination of being tired and badly positioned legs, because of which I sank to my knees. There’s no way to stop it once it’s started. Hein had to pick me up and I could do nothing to make it easier, I was dead weight. The second time I fell, I cracked my head on the floor. I saw spots for a second, but everything seemed fine. Only by the next day did we see what the damage was. While I was drinking, I felt like my jaw had been unhinged, the way my teeth gnashed together. And while I was eating my porridge, my remaining front tooth came loose. I now have three enamel stumps where my front teeth used to be

Hospital

Luckily, we had an appointment the next day as a last-ditch attempt to fix my teeth. I’m split. On the one hand, I hate the way my teeth look, especially when I’m around strangers. On the other hand, I’m dreading another operation and am doubtful that there will ever be a prosthetic strong enough to stay attached when I’m getting my teeth brushed. I’d written another letter for clarification, containing a cost-benefit analysis. “Oh, don’t worry about cost,” a jaw specialist told us. “Your insurance will cover it.” Obviously someone who only thinks in sums of money. “It’s not about the money,” we replied, after which she wrote down the term ‘quality of life’. We met with a surgeon. Seeing as I almost always have my mouth closed, esthetics alone were not enough to warrant the operation. I could have cried. The female doctor suggested I get back in touch with my dentist to see if he couldn’t do anything about it. The week after, he got back to us: negative. I’ll have to live with three broken front teeth.

Out of the house

I’m less and less tempted to get out. Maybe it’s because it’s winter. It’s undoubtedly a factor. Always having to wear a coat or needing to be hauled into the van is a lot of work. And I’m getting sick of going on walks through the same park, especially since I can no longer drink coffee. After all, the tea parlour was always the focal point of our walks. It’s still too cold to sit in the garden, which in itself isn’t exactly ‘leaving the house’ either. Maybe it’s because I’m too nervous in public or social settings. Do I give up too quickly? What can I even do in the outside world, unable to speak, my teeth only making it worse. I’m almost normal at home. But I know that sitting around at home isn’t making me any happier. Because of that, I’m glad I attended parent-teacher conference and went to that birthday party.

Drinking

I can still drink, but I can’t do more than a few gulps. Not only can I not keep my head upright because of my neck, but I can’t create suction as well as I could before. I drink for a bit, but if it isn’t going well, I’ll give up. The rest of it’ll just go in my feeding tube. I use it more and more, even in public. Bystanders don’t know what to do. They look away, but are also intrigued by this less than common phenomenon. Only a few people are brave enough to ask me about it. “How does that feel?” I only feel it if the food is extraordinarily cold or hot, otherwise it barely registers. I don’t mind using my PEG in public, provided that it’s done decently. I hope it doesn’t bother all of you, either.

Photo

Lia, Hein’s mother, turned 80. There were so many photographers present. This picture was taken by Adriaan. Of course, Floor is the looker in this one. Her kind smile, youthful skin and beautiful eyebrows are a huge contrast to mine. But the biggest difference is how carefree she looks, whereas I look almost frightened. I specifically asked for a picture of the two of us, but apparently when it came to it, I was too apprehensive about the result. And, the most important thing for me was keeping my mouth shut.

Organising

It’s only now that I realise how much the construction of our sun room impacted me. I could write about nothing else, got writer’s block and lost the drive to organise other things. By now, I’m over it and back to organising. This week I got three confirmations of things I’d planned. One of them was for our holiday in Scotland. They have some room for us after all!
Afterwards, we’ll be going on holiday to South Limburg. To our surprise, there were still vacancies. We’ll be going with family instead of friends this time.
The third confirmation pertained to my birthday party on April 2nd in the botanical garden, a beautiful location. Here’s a link if you feel like visiting it too.
I’ve had a great week.

Grocery shopping

I haven’t been inside a supermarket for over 6 months now. The weather was so bad on Saturday that, instead going on my normal walk through the park with my sister-in-law Netty, we went to the Albert Heijn. I vowed to get all of the things Hein tends to forget: tiramisu, croissants, a quiche, stroopwafels, etc. I longed for all of the things on the shelves that I can no longer eat. It’s a good thing I don’t go grocery shopping anymore. Back home, I always make shopping lists and usually decide what’s for dinner. But I usually focus on functional groceries only. We only get sweets and treats when the kids remember put them on the list.

Euromast

I’d been planning a visit to the Euromast for some time [The Euromast is the highest building in the Netherlands. -Ed.]. The last time we planned on visiting it, the weather was too good to spend the day inside, so we went to the forest in Amsterdam instead, but this time the weather is so bad that the Euromast seems ideal. The top floor was roped off because of high wind and the barriers obstructed my view, but the restaurant with floor-to-ceiling windows had a great panoramic view. We’d love to go back there when it’s dark outside.

Head cold

I hoped to avoid getting sick this winter. Winter was almost over and nobody had gotten sick yet. But then, one by one, my carer, Floor and my other carer got a cold. And now I have it too. The evening news called it an epidemic. I’ve had a sore throat and a runny nose for the past few days and I’ve barely written anything because of it. I’ve started taking doxycycline again. We always have some in the house to prevent pneumonia. Luckily, one of my carers was able to fill in for the other as she recovered at home. I can’t wait for spring to start.

ALS patient union

ALS patients don’t write history. I’m convinced that, if ALS patients had longer lifespans, the disease would get more recognition. Patients are the driving force behind initiatives that spread awareness. Vincent Straatman was the impetus behind the Valscherm Foundation. That lead to the establishment of the ALS Centre. But after that, interest in ALS waned and the information was neatly divided between the UMCU and the AMC. I haven’t heard from the ALS Centre in a while, besides a Christmas card. Vincent was looking for a way to get ALS into the public consciousness with him as the figurehead, and now Ardi Bouter is trying to do the same, without knowing about his predecessor. How would he? We don’t leave much of an impact. And what about the VSN? ALS is the most represented illness within the VSN. That may just be because MS has its own union, with Maartje van Weegen as its figurehead. But the VSN doesn’t actually have any patient involvement and is more medical than social. I’m afraid it’ll remain that way. ALS doesn’t, and will never have, widespread public awareness.*

Portraits

There’s an empty white wall in our sunroom. What better way to dress it up than a painting or two? We’ve wanted to get portraits of the kids for years. After a series of events, we found ourselves in an art studio in Haarlem one Saturday. Myriad portraits were shown to us; realistic, impressionist, with or without a backdrop, old and young people. By now, I can no longer see the wood for the trees. I don’t care too much about the style, as long as the portraits look good.

Holiday

Ward is so glad he doesn’t have school. “I don’t have to do anything right now,” he’ll often say as he’s lazing around. He celebrated the first day of the holidays by keeping his pajamas on all day. It’s snowing outside. I’ll be working on my scrapbook with Lieke later.

*if you’re actually interested, check out Stichting ALS

Het bericht Diary February 2005 verscheen eerst op Living with ALS.

On Wednesday, March 2nd, the long-awaited documentary on ALS was finally aired. I don’t like programmes about serious diseases and I never watch them. Every one of them pretends to be in-depth but always leaves me feeling like they haven’t even scratched the surface. But this time, I knew some of the people involved, so I was curious. I enjoyed how every person they interviewed had their own way of dealing with their illness, ranging from getting the most out of life to doctor-assisted suicide, from meticulously planning everything out to living from day to day. I’m more of an improviser myself. The only people who I knew before they were euthanized were male. Maybe that’s because they were used to being in control. Maybe they’re unable to deal with such radical lifestyle changes. It would have been interesting if the documentary focused more on that aspect of ALS, but they barely mentioned it. I’m so impressed with Ria Velthuizen, who managed to shed a positive light on a topic as depressing as ALS. I wouldn’t have been able to.

Snow

Through the window, I watched the snow fall. This year marks the first time I’ve had zero intentions of going outside for a walk in the snow. It turned out that I’d made the right call, as the snow got so thick that the wheelchair would have just gotten stuck. We went on a short walk on Saturday, but my head wobbled to and fro as the people behind me struggled to push me through the snow.

Placebo

By now, a survey for people who were treated in China has proven that the effects of the treatment generally last for three months. In December of 1997, when I was still thought to have MS, my ability to walk rapidly deteriorated. When I did, it was at a snail’s pace and completely wear me out. My neurologist prescribed a five-day high-dosage Prednisone treatment, which is the usual prescription for MS patients. My walking immediately improved. When we went on holiday the week after, I felt unstoppable as I hiked up and down the mountains. Back home, I even managed to go on a 7 kilometre hike at a decent pace. In March, it all came crashing down. I was having a lot of difficulty going up or down even the smallest inclines. By April, I was back where I started in December. Later that month, I got the ALS diagnosis. Prednisone isn’t supposed to work on ALS patients and yet my walking improved drastically. It lasted for about three months too so now the question is: is the Chinese treatment more effective than a placebo? Now, I’ve written more than enough about China. Consider this my last addition to the China discussion.

Cognitive Dissonance is the psychological theory that states people will do anything to justify their own actions, beliefs and feelings, even if it means ignoring facts that are in opposition to those three. It’s applicable to both sides of the China discussion.

Flat screen

My PC kept freezing, so our computer expert, after listening to the creaking hard drive and noting my intense usage of the machine, advised us to buy a new one. When he asked what I wanted from a new computer, I indulged my fantasies for a second. Would I like a flat screen? Of course! Nineteen inch? Sure, why not. I felt kids’ jealous looks boring into my back. “Oh sure, she gets a new computer. What about us?” It wasn’t even in my own interest. I should have known better, I hate change. I’m still using my old chair as my new one gathers dust, just because it feels too different. My new shoes? Too cramped, I’m not using them. So, one night I was using my new nineteen inch screen. Good lord, it’s massive. I was already having trouble using my head mouse on my old screen, but this? There I was, having to make ludicrous head maneuvers to complete even the simplest tasks. All I wanted was to get my old monitor back. So I did. Like my chair and my shoes, my new monitor has already fallen in disuse. I’m still getting used to Windows XP. My word prediction program is not working and neither is my cursor, which constantly disappears. In shot, I’m back to using my old PC too. I don’t like change, but I never learn either.

Planning

I’ll be celebrating my 50th birthday on Saturday, April 2nd. I thought of planning a buffet, but then I realised that I wouldn’t be able to eat any of it myself, so I scrapped it. Dancing wasn’t going to work either. That was why I decided, completely against Hein’s wishes, to organise a karaoke party. The idea alone made me giddy with excitement. I would be participating, of course. A lot of people told me that they would like to come, but didn’t fancy singing. What was I going to do? Create pairings and force them to sing? Everyone I asked seemed to think that was a bad idea. It’ll be fine, they said. Besides picking someone to start the night off, directing the other organisers and making a list of songs, I didn’t have that much control. I am becoming more hopeful. I’m back in the saddle again. Last night I couldn’t sleep for an hour because I was so excited. Let it go, Jeanet. Let it go.
On Wednesday I had a headache, I was nauseous and I didn’t feel like eating. Was I just stressing out?

50 years in photographs

I picked out some photos for my party. While I did like looking at old pictures, it didn’t send me on a nostalgia trip. I don’t get nostalgic about music either. I actually prefer contemporary music to what I used to listen to. Just one series of pictures made me feel a twang of nostalgia, the photographs we’d taken on holidays when the kids were still small; Mallorca, Menorca, Ibiza, France…

Fifty

I turned fifty Thursday, March 31st. Hein and the kids hadn’t even asked me what I wanted for my birthday, so my hopes weren’t high. I wouldn’t have known what to ask for either way. But in the morning, they were all ready to surprise me. Floor treated me to a spa day, Ward, smiling wide, got me a towel embroidered with ‘Jeanet, 50’ we’ll be going to see the musical Mamma Mia on April 1st. What a day. What followed was a deluge of birthday cards, congratulatory emails, balloons in the shape of the number 50, flower bouquets and a moderate amount of birthday guests. The weather was great. What else could I ask for. I’m already looking forward to Saturday.

Het bericht Diary March 2005 verscheen eerst op Living with ALS.

It was amazing. The party was tailor made for me. A limited amount of people. A video, made by friends and family called ‘About Jeanet’, a song, a speech by my mother and brother, a small oration by former colleagues, a homage to Hein, a Russian song sang by Jan, lots of presents and a lot of karaoke. The latter was a huge relief. You’re not on the stage singing on your own. Everyone else was singing alone. I didn’t go to sleep until 3:30. It was unforgettable. Thanks, everyone.

Vorige 1of280 Volgende

Malaise

And that was it. Days of fond memories, after-party conversations and emails, thank-you letters and being really tired. I’m done. No more parties, if just for a short while. All of the flowers have been thrown out already. Over. But what now? I’m having some difficulty adjusting to normal life again. I’m back to sending functional emails. I need to figure out my shoes, computer and shower seat; I’m back in action, but I’m not sure I want to be. Another day of nausea and vomiting. And to top it all off, one of my stumpy teeth got infected. I’ve got the after-party blues.

Dust mite allergy

On Saturday evening, after playing bridge, we were met by a coughing sniffly Ward. Within 30 minutes, his eyes were completely shut because of his swollen eyelids. Obviously a severe allergic reaction. We’ve suspected he’s allergic to dust mites for a while. Our GP conducted the test that confirmed our suspicions, as well as hay fever, specifically to birch pollen. There’s a beautiful birch tree only 10 metres from his bedroom window, which probably caused his nighttime allergy attack. Ward won’t be sleeping in his old room for a while. We’ll be switching his with the playroom and giving both of them a thorough cleaning. I’m looking forward to it, a new project! I’m good at throwing things out and I’ll know what’s going on in the rest of the house for once.

Colours

Since I can remember, I’ve assigned every day with a colour. In my mind, of course, because days aren’t coloured in the real world. I’ve always thought I was the only one and I never discussed it with anyone else. Until, on Sunday, Ward spotted a colourful schematic of the week and exclaimed: “I give my days colours too.” Enthused, I yelled “So do I!” Ward’s Sundays are bright, mine are white. But we both agreed that Saturdays are yellow. We couldn’t stop laughing about it. Floor and Hein looked on, clueless. They don’t make associations like that. For fifty years, I’ve thought that I was the only one who had coloured days*. We were so glad to know we aren’t.

Five is a crowd

On Sunday we had some neighbours over. We were in the garden, talking about our corresponding house renovations. I loved it. With the four of us, Hein included, I felt very involved. Hein transcribed what I said and people actually talked to me. I felt the same during our yearly Easter hike and our day on the beach. The same goes for when I have my old neighbour and an ex-colleague over on Thursdays, with Lieke at my side, an old tradition. There, too, I feel included and appreciated. That diminishes as companies grow larger. People start to talk amongst themselves, past me. It makes me feel alone, which is always when I decide to take my leave.

Reading

I read “De Garnalenpelster” by a Dutch columnist who’s originally from Turkey, Nilgün Yerli. I cried throughout the whole thing. She lost her mother at 15. She decided to stay in the Netherlands on her own, caring for herself and surviving. The book is a tribute to her late mother, an incredibly wise, lovely and liberal woman. A great book that made me insecure about the amount of wisdoms I’ve been teaching my children.

Limburg

We’re going on a family holiday to Limburg. Hein is stressing out, packing his bags. I’m keeping to myself. I compiled a list of things to take with me and with that, my job is done. The feeling of annoyance itself was here to stay, though. I couldn’t sleep, which didn’t help. I was annoyed and didn’t stop feeling annoyed for two days. I couldn’t get over it and neither could Hein. I was annoyed at the way I was given a drink through my PEG and they left the cap unscrewed so my drink leaked out again. I was annoyed at the obstructive shower curtain and the toilet, which wasn’t even handicap accessible, but whenever I wanted to air my annoyances, Hein told me I was being controlling. But the thing that annoyed me the most was the fact that Hein went biking on Sunday, which meant I would have to spend the whole day inside, except for a short one to church, which I declined. I was morose. Did I travel all the way to Limburg just to laze around in the back garden? I didn’t think so, going in. On most nights, most of my travel companions went out for an evening walk or a local pub. I stayed home. Most of them can’t decipher what I’m saying and, because large groups are usually noisy, I’m even unintelligible to people who usually understand can. It kept me up at night. I just couldn’t get myself to get over it. In actuality, Sunday was way too hot, a perfect day to spend lazing around in a shady garden. Not like I would have admitted that at the time. I’m my own worst enemy.

I’ve visited Limburg lots of times, but always to go cycling and hiking. It’s beautiful in spring. It’s lost its appeal now. It’s a whole lot less beautiful from behind a car window. The landscape is lost on me without hiking or cycling. We went to see Valkenburg Castle and its gardens, we went to Mondo Verde, a great zoo/theme park and to get out of the rain, we found ourselves in the middle of a spring trade fair in Maastricht. It’s fun, going places with the family. The kids had fun playing together. I was glad to be around my youngest niece Hanna, with whom I share a birthday. And the converted farm where we stayed was gorgeous too. The only thing I missed were my amenities and routines I use back home.

Changes

I try to convince myself that my illness hasn’t changed my personality. I don’t complain or even talk about my disease. I do require a certain treatment from people and I think I may have overdone that part a bit. Floor thinks I’m egocentric, too concerned with myself. Hein thinks I’m ungrateful and too commanding. I like being in control of how I’m treated. I try to make my life as devoid of insecurity and discomfort as possible at any cost. But the worst way ALS has changed me is my whining. When people don’t understand or misunderstand what I’m saying, repeatedly forget my routines and make wrong assumptions, I’ll whine. Powerlessness, self-pity, sorrow, annoyance manifest as my pitiful whining.

*It’s called Synesthesia

Het bericht Diary April 2005 verscheen eerst op Living with ALS.

Today we had an appointment with the artist who would be painting the kids’ portraits. She talked to Floor and Ward and took a bunch of reference pictures. More of her artwork can be found on her website. Now all we can do is wait. They’ll be done in late June.

Gloomy

May wasn’t a great month for me. As the weather improved, people went on trips and played outside while I was homestuck. My world has been reduced to the living room and sometimes the garden. I used to see my home as a castle, but these days it’s become more of a prison. Aside from a few sporadic bridge competitions and visits to the playhouse, my whole life is spent among these four walls and the small area surrounding it. I don’t get cabin fever during the winter, but now that the sun is back, I just feel forlorn. My existence is horribly predictable. My days are structured, from my carer schedule to my evening activities and even my dinner. Of course, I’m to blame because I don’t like change. Because of my inability to talk and my total dependence on others, I’ve organised my life to such a degree that surprises have become a thing of the past. Change stresses me out, be it a new chair or a new PC. My urge to try new things has never been this small. I didn’t use to be like this. I’ve never been one to be adventurous and even back then, I used to like structure, but at least I still had the drive to initiate and deal with change. We always had something planned in the weekends. There’s not much left of my old life. And sometimes I allow myself a little self-pity, knowing it’s of no help to anyone. I feel it nonetheless.

Touch

I like being touched, which makes my inability to move my arms that much more unpleasant. Twice a week, my physical therapist relieves tension in my legs, arms and neck. Sometimes even a neck massage. I love it. But even cleaning my ears or combing my hair feel nice. Whenever my head itches, Floor or Ward scratch it with a brush, which feels amazing. Floor bought a scalp massager in Barcelona, which felt unexpectedly great. I used to play with my hair a lot. I’d almost forgotten about that until it was brought up at my 50th birthday party. I can’t even remember how that feels anymore. These days, I’m mostly touched out of necessity. I don’t mind that at all. In fact, I like it, because nonfunctional touching always makes me feel a bit uncomfortable. I should just come up with some more functional reasons for touching.

Ardi Bouter

Ardi Bouter died. Should I write about it? It’s a thought I’ve had more than once this month. His passing wasn’t unexpected, he’d been on life support for 24 hours a day. He’s undoubtedly done a lot to get ALS in the public eye. He was an earnest person, no doubt about that. He said he wouldn’t advise anyone to get treated in China, but he did go himself. Because of that, people paid to get on a shortlist for treatment that already stretches until 2007. I’m sad that he didn’t do more to distance himself from the whole China thing. Of course, he was free to feel glad about getting treated. After all, he was the first person to do so. But of course, doesn’t his death mean that treatment in China doesn’t work. Wouldn’t it have been common courtesy to warn others about that?

Eight years of ALS, seven years of knowing and five years with a PEG

May was the month in which I got the ALS diagnosis and the month I got my PEG. My ALS itself manifested in March of 1997. That’s eight years ago. Back then, I wrote that I just wanted to see my kids grow up, nothing more, nothing less. That wish is coming along nicely, on both fronts. Being there for my kids while they’re growing up is my biggest source of motivation.

Hot

And boom, suddenly it’s sweltering. I first noticed it when I started having trouble sleeping. I decided to start sleeping downstairs again. We’ll have to get an AC unit so I can sleep properly again. I couldn’t get myself to do anything on Friday, the hottest day thus far. However, the next day the heat dissipated and I would go as far as calling Saturday night chilly, with a nice breeze. I hope that’s the last we’ll see of the heat this year.

The boat trip

I was still owed a birthday present; a 25-person boat trip on the river Vecht. I wasn’t looking forward to it that much. I don’t like large groups because I have difficulty being part of larger conversations, a situation I put so much effort into avoiding during my birthday party. And I’d already been spoiled enough, what with the video, the mixtape and my own song. They’d put so much effort into it. To tell you the truth, I felt like I’d had my fair share of birthday surprises. I talked to Hein about it, but he told me that this cruise was more about being there than about talking. After all, the organizer assured me that there was a spot reserved for me on deck.
Yesterday was cruise day. It went wrong from the moment I boarded. I couldn’t actually be on the front deck and the railing on the back deck was too tall for me to see anything. Thus, I was asked to go below deck. The windows couldn’t be opened. And thus, spent a day on the water while being unable to see it, hear it, smell it, behind a window. No wind in my hair and face, no nice view. I don’t think anyone knew just how much it bothered me.
I know my friends were trying, most of all the organizer. I was never alone. But this is just not my thing. I’m sorry. Am I allowed to write that?

Bad

The month of May had a bad beginning, middle and ending. In short, a month to forget about as quickly as possible. Tomorrow, the proposal for a European constitution will be decimated in the polls. We’ve been discussing it a lot back home. I’m in favour. I think voting against it is very close minded, nationalistic and isolationist. How can the twenty-five of us work together if everyone retains the right to veto?

Het bericht Diary May 2005 verscheen eerst op Living with ALS.

At both birthday parties I ran into some people I hadn’t seen in years, which was fun and conjured up some happy memories.

June was a lot more pleasant than May, probably because we had more activities planned: a photo exhibition in Naarden, the new statues in The Hague, the flower fair in Noordwijk and watching Ward play tennis (he won three trophies!). Being active rejuvenates me. On top of that, I’ve taken up my old habit of taking a moment at the end of each day to remember one thing I liked and one thing that made me proud that day. It helps me with maintaining a positive outlook on life.
I survived the heat too, which was just a matter of staying indoors. We bought an AC unit for our bedroom. It’s become a necessity, because I can’t sleep in the heat. I spent a few nights downstairs in my chair as well. By now, the glass roof of our sunroom has been fitted with blinds, so we’re fully prepared for the sweltering summer.

The kids both got good report cards and school has been out for a few weeks now. In a bit more than a week, we’ll be heading for Scotland. We’ll be taking a ferry from Rotterdam. The ship is equipped with a cinema and a swimming pool, so of course the kids are very excited. So are we, as a matter of fact.

The garden has turned out great, thanks to Lieke’s green thumbs. At first glance, you wouldn’t think it used to be bigger, which it was before we got a sunroom.

Tomorrow we’ll celebrate Ward’s birthday, after which we’ll start preparations for our trip to Scotland. I’ll make some to-do lists.

Have a good summer and happy trails!

Het bericht Diary June 2005 verscheen eerst op Living with ALS.

In the night of Sunday, July 3rd, the kids woke up to a thunderstorm, while we were still fast asleep. They were probably scared, so they thought “Let’s go to mum and dad’s room.” They came in in the nick of time, because water was gushing from our window down the wall of our bedroom It took every towel and bucket we could find to minimise the water damage. I myself was in bed, unable to help. I wanted to get out of bed as quickly as possible so I could at least feel a bit present. It was hectic, but it actually felt kind of cosy. After the whole ordeal was over, I went back to sleep downstairs while the rest went back to bed. Afterwards, we discovered that our drain pipe was clogged and the water inside was leaking right into our bedroom window. The rain gauge (which I’d won in a game of bridge) showed that it had rained about 50mm and another 30mm the following day. This is the damage.

Portraits

The portraits are done and they turned out great. They immediately nailed Ward’s one, but Floor’s one required a few minute vague directions. It was incredibly difficult to pinpoint exactly what was wrong with it, but the result is fabulous. They’re some of my most prized possessions.

Scotland

On Saturday at 21:00, the “Pride of Hull” departed from the Rotterdam harbour to, you guessed it, Hull, England. I’m glad we left during the evening, much more relaxing than daytime travel. I did get slightly annoyed when Hein was still looking up information about Scotland at two in the afternoon without even having packed his bags yet. Once we were on the ship, all of that stress was gone and we spent the rest of the night playing bingo, doing quizzes and watching dance and song performances. The kids went to see a movie. We took two vans with us, so we could take all of my equipment with us. In the morning we were woken up by the intercom and treated to a full English breakfast. By eight o’clock, we were in our car and ready to depart.

Through York, we made our way to our destination: Melrose. We stayed in a very atmospheric wheelchair accessible cottage. It was advertised as a lodge for two, it was spacious enough for the eight of us to spend the daytime there. The first few days were hot, a bit too hot for my taste.

Wednesday was cooler and, for the rest of our stay, the weather was agreeable and it didn’t rain as much as we’d feared, which doesn’t often happen in Scotland. We visited lots of places we’d read about in books or seen in movies. In York, we visited “Diagon Alley”, the high street where Harry Potter bought his school supplies. Ainswick Castle is the place that inspired “Hogwarts”, too. And close to Edinburgh we visited Rosslyn Chapel, which is where the conclusion of the Da Vinci Code took place.

To the kids’ chagrin, we visited the ruins of abbeys, castles and, of course, the gardens the UK is so famous for. We made it up to Floor by going shopping in Edinburgh four times and Ward got to ride mountain bike. They went for a swim in a river and hiked up the mountain behind our cottage. On our way back to Hull, we went to see Hadrian’s Wall, an ancient Roman wall that stretches from the east coast to the west. We had been building it up inside our head, but the part we visited was only about a metre tall. The surrounding area was beautifully desolate, though.

Once again, I’m debating whether I’m still suited for holidays. Last year I could still use bathrooms with Hein’s help, but these days I can barely stay upright. We brought the patient lift with us, but Hein didn’t use it. Lieke did. Every hamlet, town and tourist attraction in England has handicapped facilities, even if the attraction itself is barely manouvrable for people in wheelchairs. There, my problems with standing upright are the most obstructive.

Besides that, I can’t do anything. While everyone else was perusing a tourist information kiosk, I was stayed outside, waiting. Waiting in itself isn’t too big a deal, especially in bigger companies, but not being able to decide what you want to do or being able to turn yourself to look a the views is frustrating nonetheless. While everyone else went shopping or sightseeing at their own leisure, I was wholly dependent on others. They were trying so hard to please me too, which was even more frustrating. A lot of attractions are inaccessible to me, so usually I’m okay with being parked outside, as long as I have a nice view. Scotland is very hilly so we couldn’t go on any long treks, which wasn’t frustrating just for me, but for the others as well.

I’ve also pledged to read two books this summer, 800 pages in total. That means that someone else will have to turn my page 400 times. 400 times I’ll have to interrupt someone else’s activity so they can turn my page. It makes me feel guilty, but I can’t think of any alternatives. I’d been looking forward to coming home on Monday morning. Carlien would be there, waiting for me. No more feeling guilty about ruining other people’s trips. And yet, I look back on this holiday feeling satisfied. Another summer well spent. And boy did we! Way different than Zeewolde last year.

Het bericht Diary July 2005 verscheen eerst op Living with ALS.

I’ve been busy looking for a new pair of shoes since last August; they have to be comfortable, but sturdy enough for me to be able to stand up in them. After one failed attempt, where we only consulted a cobbler, we decided to try again, that time under supervision of a rehabilitation doctor, but to no avail. The resulting shoes just made me twist my right ankle, meaning I couldn’t stand up in them. We’ve devised a way to combat that: an EVO (an orthotic that functions like a splint) that keeps me from spraining my ankle.

Like the adage goes: never throw out your old shoes before getting new ones. Literally, in my case. I can’t think of any reason why I should exchange my current comfortable footwear for new uncomfortable shoes that prevent me from standing up and require orthotics to work properly, making every bathroom visit, where I’m already required to use a patient lift, a mechanical nightmare.

Downloading movies

Carlien, one of my carers, gave me a DVD copy of Hotel Rwanda. At first, we couldn’t watch it because my new PC hadn’t arrived yet, then because our specialist couldn’t attach the PC to the TV and lastly, because we didn’t have the correct cables. Carlien’s boyfriend came to the rescue and, in doing so, showed us how to download movies. After three days of downloading, the first batch arrived. They don’t have subtitles, but I could do with some English practise. I could tell I was missing out on some of the finer details in the dialogue of the first movie. By now, we’ve made a list of movies to download.

How much help should we expect from the kids?

It started with just making me some tea, a fruit smoothie, but now it’s gotten to the point where we think Floor would be able to help me use the bathroom. Because of our decision to hire as few carers as we could while still maintaining a manageable schedule, the kids and Hein are usually the ones taking care of me in the evenings and during weekends. It wasn’t sustainable, so Marjan cooks for us and feeds me on Saturdays, Lieke cares for me for one weekend a month and the kids are becoming increasingly involved. From the start, Floor wanted to know how to operate the PEG and the big syringe and after a while, Ward’s curiosity got the better of him and he learned how to work it too. “Why did I ever want to learn this?” he’ll often say when he has to give me water for the umpteenth time. Only two things were off-limits for the kids: using the bathroom and bathing. By now though, Floor has already shown her aptitude using the patient lift. She had been anxious to try it for a while, because she knew as well as I did that she would be taking some weight off of Hein’s shoulders. She immediately nailed her first attempt, probably because she had seen it done so many times before. Despite our initial doubts, we’ll call on her for help if it’s needed. And as it happens, Hein has a knee infection this week, so while Hein is limping around the house and lying in bed, Floor, with Ward’s assistance, helped me out in the bathroom.

Carers

There hadn’t been too many developments on the carer front the past year. We even managed to construct a good schedule over the holidays. But by the time autumn came around, the golden age was over. Brenda is going on a journey to Australia and Canada for a year and Carlien finally found a job as a physical and respiratory therapist. I’m happy for them, but it’ll be a huge adjustment for me. We’ll have to find new carers in the coming four days.

August

August was quiet. My biggest victory this month was finishing two Harry Potter books. Floor was away on holiday for two weeks and wouldn’t be celebrating her birthday at home, had it not been for the fact that her tent got flooded in Zeeland, meaning she was home for her birthday (after hastily being evacuated by a friend’s parents). We hastily bought streamers, a birthday cake and presents. School started a week ago and the kids are still adjusting to having obligations again. Hein’s infection is getting better. While we managed just fine despite it, it did lay bare the fragility of our carer system.

Het bericht Diary August 2005 verscheen eerst op Living with ALS.

The toll of wearing a vest

A moment ago, I received an email from a fellow ALS patient. She wrote about the conflict between her and her husband when it comes to putting clothes on. She feels like she should be able to dictate the tempo and the order of clothing in which he dresses her. Her husband doesn’t and thinks she shouldn’t complain and should just be thankful, always quickly retracting the latter. That’s my own situation in a nutshell. Although we’ve made a lot of concessions over the years and our arguments aren’t as fiery anymore (their incident I feel is more of a rookie mistake), our conflict is rooted in the same age-old question: who’s in charge?

While my minimal demands are always met (I want my head held upright and my arms to be crossed on my lap whenever I’m changing), there is a certain aspect of getting dressed I want absolute control over: picking which vest I want to put on. All of my clothes are very run-of-the-mill except for my vests, the only clothing articles I have a hand in buying. It’s my autonomy and personality, all boiled down into a piece of fabric.

Usually, Hein heeds my vest preferences, but today he turned up with my brown vest. I hate that thing, it’s too thick, the opposite of colourful (I hate the colour brown, honestly) and the only vest I didn’t buy myself. I asked for a different vest, some of my favourites were just hanging in my closet, but for some reason that really rubbed Hein the wrong way. He’d had enough and put the brown vest on me. I protested furiously and loudly voiced my opinions downstairs until Ward fetched my pink vest and Floor helped me put it on. Not a good note to start a day on. Everyone was miffed.

I was still fuming. Imagine me telling someone else what to wear, the arguments it would cause. Why shouldn’t I be allowed to pick my outfit? However, after three hours I took a good look at the situation. All of this fuss over a stupid vest. Who cares. But the question still gnawed at me: do I have any autonomy left?

I asked my carer to put the brown vest in a deep corner of my closet so nobody would be able to find it.

When Hein read this part of my diary, it turned out that he wasn’t aware how much I hate that vest. “Why don’t we just throw it out?” he commented, down-to-earth as ever. That’s a good one. Why not?

Personnel management

I’m in charge of a kind of company, let’s call it Carer Corp. My company is in charge of my personal care, cleaning my house, doing grocery shopping, preparing my food, doing garden work and running errands for me. I have five employees who I have to provide with enough work and motivation all while solving potential scheduling problems. One of them is good with PCs and likes to read, another has green thumbs and yet another is a great conversationalist. Our garden is almost ready for winter and our front yard has gotten the same treatment last week at the hands of one of my carers. Besides that, I’ve been reading ‘De eeuw van mijn vader’ [‘My father’s century’, a book about Dutch history in the 1900s. -Ed.]. I’m particularly interested in the parts about the author’s family’s experiences in the Dutch East Indies during World War Two. I’m so happy with me rekindled love for reading. I actually owe that to my carer who loves to read. One of my other carers couldn’t care less about books, so I let her do the gardening.

I had a problem with one of my employees this week. One of my domestic helps didn’t clean thoroughly enough and wasn’t very self-sufficient. She was nice, but I would be doing myself a disservice if I stayed quiet. We decided to part ways and, through her employer, we found a replacement. There’s a bigger market for domestic helps than for carers. Luckily, Roeline had been itching to work more so I would have more than four days to find a replacement. Other than that, Carlien will be working less, so I’ll have to find a new employee before November 1st. And like that, we truck on, working hard to keep Carer Corp. running.

Hannie Lederhof

Today we got a call from Mike, notifying us of Hannie’s passing. She’d slipped off the stair lift and broken her hip. The subsequent operation had been successful, but her breathing stopped. Hannie and I corresponded for over four years and they were emails full of humor, cheek and holiday plans.

We went on a few walks together. We were a sight to behold; two women screeching in an unknown language, pushed along by their husbands, not a care in the world. She was at my birthday party. The last time we saw her was at the gardening convention in Noordwijk, completely covered in plants she’d bought.

The football match

We spent a lot of Saturdays watching Ward play football this month. Usually we arrive just after halftime. Ward always wears a black shirt with red streaks. This time, we couldn’t find him anywhere. Or could we? Number 12 looked a lot like Ward. Wait. No, that’s not him. What I did find strange was how often I heard the opposition, who played in blue shirts, call out Ward’s name. Odd, his name isn’t too common. And there were so many vaguely familiar faces in the blue team. It was just starting to dawn on me when the match ended. When we got home, my suspicions were confirmed, as Ward got back home wearing a blue shirt. He’d been on the blue team that whole time, we just hadn’t spotted him.

TV

On the evening of Monday, September 12th, the TV programme Network aired a symposium organised by the Belgian ALS Liga, featuring the person behind the controversial Chinese stem cell treatment, Dr. Huang. We couldn’t understand anything he was saying but at least he looked like a nice fellow. The panel of ALS experts pulled no punches as they condemned the treatment. During the show, Loes (who looked great) said with determination that she would go to China for a second round of treatment in October/November. I admire her steadfast conviction. Once again, I’m in doubt, which is hitting harder than usual. At least ALS is back in the public consciousness once more.

Statistics

My website attracts around 1100 visitors a month, including 600 new faces and 500 people who check in every month. It’s fun to see what kinds of things people use the search bar for. Some key words are logical, like “Amyotrophic Lateral Sclerosis”, “Rilutek” and “fasciculations”, while others are a complete mystery to me, like “intestinal colic”, “tiramisu recipes” and a particularly strange one: “Going wild on poker night”. Going wild? I wouldn’t know how.

Closed forum

Ardi Bouter’s forum has been shut down. People were being too hostile to one another, so Ardi’s family decided to close it. I used to visit it about twice a day. It was becoming more tight-knit and the amount of swearing was decreasing steadily. I feel abandoned and so do many others. There goes another daily ritual.

Friend

Floor has a boyfriend, Roel. They’re having a lot of fun, but I do feel it’s detrimental to our evenings watching TV together. Apart from her not being home as much, it also means that there’s a new third party during the evening she does decide to watch TV with me. I’ve got to say, it’s kind of distracting to have them kissing next to me on the couch while we’re watching TV. Despite Floor’s protests, I know she’s not paying attention to the programme half the time. I still feel blessed though. Of course, they could choose to spend their time upstairs and leave me alone and I’d completely understand. I’m not some bog-standard mother-in-law, after all. Luckily, Ward is spending less and less time on his PlayStation and more time with me.

Fasciculations

I don’t suffer from severe fasciculations, but for the past week my left eye has been twitchy. Besides the annoyance factor, it impedes my vision a lot. I hope it’ll stay open.

Het bericht Diary September 2005 verscheen eerst op Living with ALS.

October 3rd (the day Leiden was freed from Spanish rule in 1574) was on a Monday this year, which meant we were treated to a long weekend. For the first time in a few years, I actually felt like celebrating this time. It surprised me too, as I’ve become increasingly apathetic, especially when it comes to big events like this one. Maybe it was the weather, maybe it was because of Floor’s participation. October 3rd is full of age-old traditions; eating hotchpotch with our friends, going to the fair with Gisele, going to see the flea market and rounding off the day by watching the parade from the same spot we always do. I wasn’t expecting to have as much fun as I did. Floor is writing a research project on the conception of the celebration of October 3rd, which first arose in the 19th century. What’s a better way to do research than to participate in the event itself? In the morning, during the traditional breakfast of herring in a white bun, she asked people to fill out a questionnaire to test their knowledge of October 3rd (people from Leiden knew their history well) and in the afternoon she participated in the parade.

Leakage

Our house may be rustic, but it’s very old too. In July our drainpipe overflowed (which we’ve fixed since then), three weeks later it turned out that our upstairs bathroom was leaking water, which lead to some nasty water damage downstairs. We had to shower on the ground floor for two weeks until it was fixed. On to the next leakage. When it’s storming outside, Ward has to sleep somewhere else because of the leak right above his bed. After some makeshift repairs that had little to no effect, we took drastic measures and decided to repair the dormer window and completely replace our roof tiles. We thought enough was enough when Ward had to regularly sleep next to his bed instead of in it. Soon, our house will be bustling with builders again, but sadly they’ll be working without my supervision, on a project I will never see the results of myself. There’s no way to get me up to the attic. I’ll have to wait for pictures and hearsay, I guess.

Bad sleep

Sometimes, I’m completely unable to move when I”m in bed, a frightening sensation. Sometimes I’ll wake Hein up and try to move on my own. What makes the whole situation even more difficult is the fact that my breathing speeds up whenever I panic, which can only be remedied by very slow deliberate breathing until I’m calm. Sometimes I’ll have up to four panic attacks in a single night and, with each one, my hopes for a good night sleep diminish. As a last resort, I decide to sleep downstairs, which is not a great feeling. I don’t have trouble breathing during panic attacks, it’s usually a feeling of being chased, combine with panic and constantly and fearfully wondering when I’ll get control of my breathing back. It’s been going on for three weeks. It’s tiring me out and irritating for everyone involved. Last Tuesday I had another blood test. My arterial blood gases are just fine, nothing that would indicate a lack of oxygen. That’s amazing in itself, because since 2001 I’ve had the miniscule lung capacity of 1 litre, 30% of a normal person’s capacity, which is considered critical.

Talking to God

I talk to God sometimes. I don’t bother Him with big questions, mind you. No “God, give me strength in these trying times.” No “God, please give strength to my husband and kids”. I never ask Him “Why me?”, because it’s the same question as “Why not me?” No, I only call on him for very basic favours. “God, please give me one good night’s sleep so I don’t have to wake Hein up.” And “God, please make pooping easier for me (because of my diminished breathing, I have difficulty applying pressure).” Nothing more basal than those two things, right? Nonetheless, it’s pooping and sleeping that are the biggest sources of discomfort and annoyance for me. My illness is more of a given.

A given?

My ALS is a given. I can be as optimistic or as pessimistic as I want, but that doesn’t change the fact that I have ALS. The best thing for me to do in this situation is to not dwell on it much and deal with it the best I can. It’s wholly different for Hein. This didn’t happen to him, it happened to me. He had a choice, no matter how infinitesimal and unappealing. I think acceptance is more difficulty in his situation. Hein might feel envious of couples who get to go on holiday to Morocco or hiking in England while I’m always a limiting factor when it comes to holiday destinations. He’s got the same limits I’ve got, except he has to be a functioning member of society while I’m able to live a more sheltered life, safely at home. Sometimes he feels like life is passing him by. I am powerless to help him. Nothing to do except hope that he’ll feel better soon. I’m being explicit because I feel like this feeling plays a big role in the lives of most ALS patients and their partners. Know that you are not the only one. Is knowing that of help? I don’t think so, to be honest.

Free weekend

Hein is taking a weekend off on Friday. He’s the only person who is able to help me use the actual toilet, which is the only place I’m able to defecate, as the commode is too high up. So it was essential for me to have pooped before Hein left, but I couldn’t. It’s awful, trying to defecate on command. I had some mild success on the commode during the weekend, but when Hein I immediately had to go. “Did you poop?” has become a popular phrase in our household. This can’t go on any longer. It’s so stressful.

Nighttime walk

On the evening of Saturday, October 29th, I went to see the movie Pride and Prejudice with Lieke. The film was fine, but I enjoyed the walk there more. The weather was mild, like a summer night. We got out of the theatre at 12, at which time the only people who were still outside were youths, walking around in large groups, not wearing jackets. We also had time to admire the Holocaust memorial designed by Jan Wolkers.

Lost

I should be rewriting instructions for my new carer, but I can’t get myself to start, however useful it would be. I’ve lost myself in Lost, a TV show about a group of people who find themselves on a desert island after their plane crashed. It’s a thrilling series, which I’ve completely downloaded off the internet. Floor is as addicted as I am. We watched episode upon episode on my PC. I haven’t been doing anything else. And, once we’re done with Lost, I’ve got a novel to finish, penned by one of my bridge buddies.

Het bericht Diary October 2005 verscheen eerst op Living with ALS.