It all began with the NRC interview and the subsequent 50 (70 by now) emails about it, plus an additional few written replies. Many old acquaintances responded, some of them from unexpected people. I love that. Complete strangers send me words of encouragement, poems, reviews, etc. Responding to all of my mail is a lot of work. I decided to publish my March diary early, because my brother-in-law (the webmaster) is expecting a child and he probably doesn’t have time. On Tuesday, my regular help Marja was absent and Hein was home, as well as my mother and father-in-law Kees. My day was messy. To pile more on, my GP diagnosed an ingrown toenail with a lot of fibroma, which had to be removed. On Thursday we left for the hospital, where I was immediately “operated” on, which was a relief. It took 10 minutes at most and the most painful part was the anaesthesia. I won’t be able to wear a shoe for a while, making standing up difficult and using the bathroom quite the adventure. Hein stayed home for two days. He is the only one who, no matter the circumstances, knows how to support me when I stand and, more importantly, catch me when I fall. On Saturday, the bandages came off and I could finally wear my shoe again. The pain is minimal, but I’d much rather it didn’t hurt at all. From 5 o’clock until nighttime on Friday, we were fixed to our television screen, not wanting to miss anything about our Alex and Maxima (the wedding of prince Willem-Alexander and princess Maxima). On Saturday the 31st of March I celebrated my birthday, and my niece Hanna was born. That evening we had a bridge drive with 12 friends. We had a good time. Floor and her friend Maartje waitressed like professionals: “one Sisi and a red wine for table one”. We have three tables, but only played eight games to leave plenty of time for chitchat. The awards ceremony was hilarious as ever, we allowed the winners to claim old Easter junk as their prizes. On Sunday afternoon, the family and a couple of friends came over for drinks. There were fewer people than I had hoped, because I had to postpone the party at the last minute and some people couldn’t reschedule. Despite the thinner company, we still had fun. All I want now is a normal week with good weather, so I can enjoy all of my new garden stuff.

Mysterious email addresses

I receive a lot of mail from men. At least, it seems that way. After opening, all of these Jeroens, Pauls, Harrys, etc. are actually women, with different names. While I do faithfully correspond with a few men, most people who write me are female. Sometimes, a “male” email address is confusing, because the female writers don’t introduce themselves at the start of the mail, making me doubtful of the author’s gender until the end. Ladies, please get your own email addresses. It’s so easy.

Drinking

By now, all of my drinks are help up for me; if possible, the cups are resting on my stomach at about the same height as my PEG. No problems so far. That is, whenever people actually hold it at a consistent height. All arms tend to fall back down, be it from exhaustion, distraction or gravity. Because of that, my straw no longer rests on the bottom of the cup, causing it to slip out of my mouth. I don’t have any power in my lips. Repeatedly, I gesture “up, up”, which isn’t always understood by my helpers. The biggest obstacle is toward the end of drinking. The cup has to be held askew to get the last drops, but my straw also has to be in the drink too. It’s a difficult game of balance for the helper, to varying degrees of success. To close it off, I burp loudly, like a baby after it had its bottle. Everyone just laughs about these “not done” burps, and so do I. Apparently, I swallow too much air when I drink nowadays.

School visit

Floor had a show at her school this week, which is not wheelchair-accessible. It posed a problem, now that I was in a heavier wheelchair. Hein worried about ways to get me into the school long beforehand, while I thought “it’ll be fine”. It’s the usual division of roles. Just to be sure, we brought my light wheelchair, but I hadn’t used it for 6 months. We arrived at the school well in advance. In my heavy wheelchair, I was carried into the school by four men. Thus, I was able to fulfill my motherly duties and able to hear Floor sing as a soloist, while royally seated at the front. Anyway, the school was very helpful. Glad to know that this can work, because Floor has another show in June. The third one in a short time. Maybe a bit overkill, but she enjoys it nonetheless.

Increase

The World Access server was down for a while, so a the end of the month I didn’t have any data about who was visiting my homepage. By now, I do. In 2001, the amount of monthly hits has doubled, from 1500 to 3000. My book and the interview helped, of course. The book is still selling well. By now, I’ve sold 250 copies. I’ve started selling them myself, mostly through others, because I’m more tempted to hand them out for free. My absolute top salesperson is my mother-in-law with almost 20 books sold, followed by my friend Tineke with 10 copies. My mother rather acted as a library, lending her copy out.

Essay

Ward has to write an essay. He’s chosen the subject ‘Tornados’. I don’t know why, but I had the feeling that Ward didn’t need any help writing it. Purposefully, he collected his stuff and went to work one and a half months beforehand. A polar opposite of Floor, who always starts way too late and whom I’ve always helped out. Because Ward wasn’t making much headway, I offered my help. To my surprise, he immediately accepted. Ward had started by writing the last chapter, which made a lot of what he’d written more relevant in other chapters. After an initial fight about the chapter arrangement, we’ve been pleasantly working on chapters every afternoon. Ward is obviously pleased and we’re writing chronologically now. We’re both satisfied with the results.

Classical Sundays

It’s been a while since our last Sunday trip. The weather is not being cooperative. Thus, we stayed at home, to the delight of the kids, who were tired of hiking and museums. On the past few Sundays, the TV was on all day, on the sports channel. Springtime cycling: the Tour of Flanders and Paris-Roubaix; the Hell of the North. It reminded me of back in the day, not going outside on Sunday, reading the newspaper in front of the TV and spending the day in a stupor. Or even before that; listening to the sports programmes on the radio. I’m getting to like this “doing nothing”, while the rain softly taps the window. I worked on a few History chapters with Floor while Ward finished his essay. Hein constructed a cabinet and put a painting up. Of course, we hunted for easter eggs too.

Anouk

Floor gave me the latest Anouk CD for my birthday. I enjoy it immensely. It’s fairly aggressive music, interspersed by more soft-spoken songs. Before, I would have sang along with the music and dance. Not anymore. I listen to the music like a sack of potatoes, but in my mind, I am free and I dance and scream yell my lungs out. Included in the album was a DVD containing all of her music videos. I can play it on my computer. Hell of a girl, even she could do without those golden teeth.

Driving a car

I don’t enjoy car rides anymore. I’m sat in the back of the car in my wheelchair and bob along to every bump in the road, of which there are a lot. My head flails to and fro, like it’s not even attached to my body. There are even bumps that launch me 10 cm into the air. Those are etched into my mind, so the next time we pass it, I can give ample warnings beforehand. They are not heeded, by the way. After passing the dreaded bump, Hein parks the car and asks me what’s the matter. Tonight, we’re going to see if I can properly sit in a normal car. I can’t in our van, because the backrest of the passenger seat is too straight. It would be ideal for our trip to France. That is, if my head is up to the task. The test drive was successful. My head was fine and the suspension was good. I’ll be going to France, seated in the passenger’s seat of a normal car.

Withdrawal

In the first weeks after the interview I had truckloads of mail to get through. I had to merely switch on the PC and correspondence flooded in. I loved it. This week marks the end of that. There are days on which I don’t receive any mail at all. I didn’t realize that publicity and the attention that comes with it could become so addicting. Luckily, I got some more mail later.

Email craze

Floor recently got her own email address at Hotmail. Immediately after school, she bolts for the computer to see if she got any mail. What makes it more fun is seeing that some of her friends are also online. Many private chats ensue. The fact that she’s just seen them at school, or that they all practically live across the street doesn’t bother her. They just chat, for hours. During all of that, the phone is unavailable. It causes some friction between mother and daughter. It does, however, have a sunny side: we send each other messages. In the emails, we talk about our gripes and make agreements on the amount of hours spent on online chatting. Corresponding with your daughter like that is fun. Floor made one condition very clear: there will be no critisism of spelling and “grammer”. Of course, I couldn’t let that one slide. Moreover, I like to write about things that aren’t said often enough in passing. Especially in my situation. I’ve started mailing Hein more too. Ward is becoming a tad envious and wants an email address too. I’ll allow it. I’m already looking forward to corresponding with my son.

Het bericht Diary April 2001 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.