My book was warmly received. The best praise I got was from my cousin Jos:
“Whenever we talk about you at birthdays, it’s mostly about the symptoms of your disease (“she can’t do this”, “she needs help with that”, etc.), because of which my view of your life became very skewed. Whenever I thought of you, I thought of someone who’s wasting away in a wheelchair. Maybe that’s why your insights on your life are that much more significant. Sure, it’s sombre at times, what with your deteriorating motor skills, but it’s largely overshadowed by your positivity.”
My mother agreed with my cousin wholeheartedly, but did think that my book makes my situation seem too rosy. She’s right, I didn’t spend ink on my sadness, anger and fear. Before I got sick, I used my diary to describe my sadness and other emotions, but by now my diary has become a log of my happy memories.

Going out

Floor took a train to Drachten this morning, accompanied by two friends. She’s sleeping over at our family friends’ house. I hope the girls will have a good time. Their programme consists of going into town, watching movies, going swimming, visiting the cinema and, of course, being silly. They wouldn’t tell me, but they’d love to use our friends’ sauna, too. I thought all three were equipped with a cellphone, those modern youths. It turned out that only Floor had one, so she was flooded with phone calls from her friends’ parents asking if the train journey had gone according to plan. It did, and when they returned they seemed very pleased with themselves. Everything went according to programme. A well-planned trip is always a great experience. Ward was glad his sister was back home. He even made a “Welcome Home” sign.

Ice skating

Winter was in the air and the urge to go skating got the better of us. On Saturday, Hein took Ward to the ice rink for the first time. It’s harder than he anticipated, so he’ll have to train some more this winter. Thus, Saturday has become family ice skating day. Me? I spend that time at home, listening to music and napping. I’ll gladly stay at home alone if it means that Ward can learn how to skate. Secretly, I’m hoping that the water won’t freeze this year. I miss long-distance skating a lot.
No dice. It’s freezing, and the outside skating rinks have already opened their doors. Hein is buying Ward skates today. He’s hooked. Floor already knows how to skate, so she can wear my racing skates. I still feel giddy whenever there’s natural ice and it always surprises me that the majority of people don’t match my excitement. I guess it’s another instinct that hasn’t adapted to my ALS yet. Luckily, it’ll thaw soon.

Dictation

I don’t answer my emails myself anymore. I’ve started doing dictation. Inge is my typist, something she finds enjoyable. She’s a much swifter typer than I am. I’m still intelligible to some people, which I use to my advantage. I talk as much as possible. Stubborn, yes, but effective too.

Planning

I try not to plan too far into the future, not thinking about the future too much, living in the present. December felt especially fleeting. Planning holidays, however, is a necessary exception to that rule. Poorly planned holidays often fail. Yesterday, we slew some dragons. Spring break will be spent on Ameland (looking forward to it), our May holiday will be in France (I’m glad we all had one specific week off). Our summer holiday was a tough nut to crack because most places we thought of were already booked, but crack it we did. We’re going to Île d’Oléron in western France, in a wheelchair-accessible cottage. Even while avoiding it, the future is something we all must face.

Greying

My fringe is completely grey. Usually I paint my hair, but now that my neck has become less resistant, I’m less eager to sit through long visits to the hairdresser. Cutting my hair is fine, but having to sit in an uncomfortable chair for 45 minutes is a less attractive prospect. Thus, I’ve been grey for a week. I bought hair dye to use in the shower. Some people have suggested that I stop dying my hair altogether. The kids couldn’t disagree more. They don’t like my grey hair one bit. Hein is fine with it. Still, aren’t kids often your most honest critics? For now, I’ll keep dying it. I’ve lost too many other cosmetic options since I got sick.
Hein dyed my hair on Monday. Spouses of ALS patients are often assigned some unexpected tasks.

Restless legs

For many nights straight, I’ve been plagued with restless legs. I’ve had it before, but the past few nights have been especially horrible. My legs become horribly stiff or spasm and I have the constant urge to stretch them out. I twist and turn, causing the blanket to shift and ruffle, waking Hein up. Last night I took some valium. I panicked and felt very hot. After the tablet took effect, things went wetter. I’m not having trouble breathing, no nightmares or headaches. I take 4mg of sirdalud thrice a day to prevent muscle stiffness. I heard that quinine prevents cramping, so I’ve started drinking tonic water. My stomach is bubbly and gassy. It’s probably not a fantastic remedy in the long run. I’ve started dreading the nighttime. I feel fine by day. I emailed my neurologist and GP, who replied promptly. I’m using quinine pills now. The first night was fantastic.

Status aparte

Until May of last year, I watched TV on the couch. During especially scary or romantic films, Ward and Floor would cuddle up to me. I loved that. Now, I have my own recliner. It’s on wheels and motorized, so it can be put in almost any position. It’s useful and comfortable, but also lonely. Until November of last year, I could sit in the passenger seat of the car. Sometimes during drives, I fell asleep with one of the kids at my side. By now, I have my own sturdy wheelchair in the back of the car, with both kids in the front seat, because the seats didn’t offer enough support. Thus, my status as a separate person is cemented more and more. My bed is the only place where I’m not alone. Still, I isolate myself, because I’m scared of getting tangled under the covers or something falling on top of me. The thought alone makes me uneasy. I keep everyone at a distance, but in bed it’s a choice (because the alternative is worse) to be separate.

Head-guided computer

I took a bold step and started practising with a head mouse. Using the IR glasses was too cumbersome, so I decided to just put the dot between my eyes again. I often hold a key for too long, so I sometimes type letters twice. My head also skews too much so I often have to recalibrate the cursor so its resting position is in the middle of the screen. At every small small nudge against the table or shake of the floor, the cursor vibrates, so that doesn’t help. I noticed all of this within half an hour of practise. It’s slow, but at least I don’t become too tired. Practise makes perfect and I’m not too discontent with the mouse. I trained again the next day, but the thing is extremely sensitive and the cursor vibrates constantly. I couldn’t keep the thing in check. That sentence alone took me half an hour to type. I’ve discovered what I was doing wrong today. The laptop screen was too askew, so half of the screen was too far away to register the mouse. Patience is a useful characteristic for ALS patients. Right now I’m on day three of using the mouse. It’s gotten worse again, my mouse sometimes flied off the screen and the shaking hasn’t subsided. I’m frustrated, so I think I’m going to call the retailer. These sentences took one hour to write. What a ripoff. I have to try to sit straight, which is a struggle since my head and neck are not really up to the task of assuming an upright position. That took two hours to write. It’s dreadful. I feel like a terrier, I still want to go on trying to see if things get better. I tried putting on a new dot to see if it helps, but it hasn’t helped too much. For now, I’ll stop complaining about my typing vicissitudes.

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

Paul, Hein’s brother, installed the head mouse on my desktop computer. It’s much more functional. A much larger screen, a cursor that doesn’t vibrate, a more responsive sensor area for the mouse, not always having to recalibrate my mouse and audible feedback whenever I press a button, which prevents accidental double clicks. Not to mention the programs that I didn’t have on my laptop. In short: I’m content. The advantage of using the head mouse on my own computer is that answering my own mail and using the internet is once again doable. I’m more self-sufficient and I can use my PC again, instead of aimlessly sitting around. I wrote this part in 25 minutes. Not bad. This month’s entire diary is written by using the head mouse. It’s working. I do constantly forget about the dot between my eyes, so whenever I forget to take it off before bed or using the shower, it becomes unusable and ends up in the trash.

My home is my castle

At home, I almost feel normal. Established rituals and habits, trusted caretakers and appliances, surrounded by family eager to talk about their day. A familiar environment where I barely feel out of the ordinary. It couldn’t be any more different when I’m out of the house, especially in larger crowds. I feel abnormal; I’m unintelligible and tend to just sit around in my chair. By now, my group of friends has resolved that issue by doing bridge-drives. They’re fun gatherings during which I don’t just sit around like dead wood, because I hold my own when it comes to playing bridge. We do it once every couple of weeks. I love it.
Besides playing bridge, we celebrated my mother-in-law’s birthday this weekend. Not looking forward to it would be an understatement. Being seen like this by a bunch of people I barely know is awful, I feel especially vulnerable when we enter. Please, let everyone act normal, I pray to myself. Let me just watch from the distance for a bit to prepare myself. No such luck. I was surrounded by people and immediately, every single person there feels the urge to whisper some soothing words to me. I hate it. People, please don’t act like that. Leave your unctuous, intimate consolatory conversation at the door, please. I really can’t take it. Once I was properly seated, things went better. Quietly, I could take part in the festivities too.

A message from the past

I got an email from one of my earliest friends. We were friends since we were three, a friendship that lasted till we were twelve. Since then, we hadn’t spoken for thirty years. Suddenly, she contacted me with the sweetest mail, reminiscing about our time together. She described it so vibrantly, it made me laugh. It made my day. Oh, how I do love email and the internet.

Writer’s school

I started doing a writing course, by email. Every week we receive an assignment. I have to think of characters and describe them. Every assignment has a deadline. It takes some getting used to. Before, I was always free to plan out my own day, but now I’m “forced” to do something by an external force. Some of my fellow course participants also suffer from speech impairments. Eventually, we’ll have to write about communication among our own characters. We even have a real teacher. I’m curious to see what’s next.

Newspaper interview

I’ve busied myself with answering emails from people with questions about my book following an article about it in a newspaper. I had gotten in contact through one of my neighbours, who is an editor for NRC, a newspaper in the Hague. I’ve had my doubts about publicity like that. Is my book too private for strangers’ eyes? Will I be able to handle the public response? Will my kids? Then again, there are 2000 copies of my book and the thought of them disappearing in a shredder is not very appealing. I’ve sold 150 of them so far. In short: I could use some publicity. Thus, I’ve started working on getting as many of them out there, which is a chore in itself. My sister-in-law Monieke is in charge of sending copies to medical libraries and clinics. Any other suggestions for distribution would be most welcome. A photographer came by yesterday. I had a picture taken of me on my own and with the kids. Most of the pictures were of the whole family, but Hein is still on the fence about appearing in the papers. The article will be printed in March. I have full insight in the article and I’m allowed to pull out at any time, in case the article is too personal. I want a positive article about life with ALS, without dramatic captions and such.

Nighttime worries

I’m not getting proper night’s rest. I fall asleep like a log, but after three hours or so the tossing and turning and the leg-stretching start. My right leg becomes rigid and finding a comfortable position for it becomes difficult. That’s when I wake up, often without being able to sleep again that night. Sometimes I panic, legs sweating. Sleeping in has become a distant memory. After 7 or 8 hours, I can’t stand being in bed any longer, even when I’m barely rested. Usually I sleep for an hour later in the day. It must be so frustrating for Hein. He has to work in the morning and can’t really afford all of my nocturnal escapades. During weekend mornings I’m downstairs while Hein gets some well-deserved rest.

Floor and the tube

Floor feeds water through my tube twice a day. I think she found it an interesting process. One day, she asked me if she could try operating the PEG. She could, of course. Since then, she has busied herself with watering me. It’s a big responsibility for a twelve year old, maybe too big. Either way, she does it carefully and with gusto.

Oleta Adams

My sister-in-law Monieke gifted me a CD by Oleta Adams, signed by the singer and addressed to me. I had never heard of her and it’s not really my style, but I really appreciate the gesture. My new help on Mondays and Tuesdays, Marja, prefers it over U2 and Anouk. Right now I’m very taken with the Buena Vista Club’s latest album and its beautiful female vocals.

Ameland

Going on holiday is anything but stress-free. Before leaving I worry about going to bed, being able to sleep, getting up and cleaning up, hoping the day of departure itself will be fine. It wasn’t. When we arrived in Ameland I felt sick. Was it the journey? My worries about the journey? Had I actually caught something? I wasn’t sure, but decided upon a preventative antibiotics treatment. My general practitioner prescribed me an antibiotics course precisely for travelling. I appreciate that, because I like having assurances. The hotel we stayed at was perfectly suitable for me. The family was most impressed. There was an adjustable bathtub and a very versatile stair lift. Despite the glowing recommendations from my family, I didn’t use the bath. It’s too much. Too… invalid. It doesn’t fit my own self-image, still falling hopelessly behind reality. Going to bed wasn’t too bad. I slept better than I expected, no mishaps for the whole duration of the trip. I only woke Hein up when it was time to wake up. We didn’t have to worry about cooking. Every evening we got three courses, easily mixed with sauces and gravy. I had no problems eating.
What we actually did on holiday? We went on two wonderful hiking trips. Despite the fact that we visited an especially flat part of the country because of my heavy wheelchair, it was still a sweaty ordeal to get me over all of the sand dunes. We went to see the lighthouse by night to see the light sweeping the island. My family made the 58 metre climb to the top of the tower. We went seal spotting on a boat and saw more at least a hundred of them, loafing around on shoals, some of them up close. In the museum we read about how, until recently, rescue boats were pulled into the sea by horses. One time, eight horses drowned trying to get the boat waterborne. We learned a lot about Ameland through museums and chatting with locals. The weather is wintery with both snow and sun. Towards the end of the week, an unpleasant wind picked up. At 4 o’clock on Thursday afternoon I was back home. I can’t complain. I’m back behind my computer. I’m finally able to entertain myself again without having to ask someone to turn a page every minute.

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

Floor was pushed to her limit, what with her daily acting repetitions, having writing a book report, two impending quizzes and a sizeable history deficit. In short: time for a sick day. At 9 o’clock Floor came downstairs, pyjama clad. She didn’t change out of it that day. What she did do that day was work. Tests, reports and four history chapters on the three religions were all finished and prepared by the end of the day. I found it homely. I learnt a lot about religion and I’ll never confuse those new Eastern-European countries again.

Ward claims a part of the garden

Ward is a nature lover. At least, he loves the horticulture in our back garden. In previous years he was already allowed to pick some annuals; marigolds and tobacco plants in the colours of Ajax (his favourite football team). I’m afraid that such slim pickings won’t be enough for him this year. Ward has been preoccupied with a potato all winter. He put it in water until it rooted and eventually grew a bud. Now he wants to use a part of the garden. Grandpa Kees is going to remove the plants from a section of the garden. We’re going to build Ward a miniscule vegetable patch, 1 square metre. We want to plant a bit of everything: carrots, radishes, leeks, lettuce, etc., a tiny amount of each. I greatly enjoy doing this with Ward.

National ALS Day

This was my third ALS day. I was looking forward to it, especially meeting all of my ALS correspondents and the people who designed my book. However, I tend to forget my usual “wait-and-see” approach, so when I entered I immediately felt overwhelmed. Immediately after we had parked, we were greeted by a hostess who did not know when to back down. Even in the coatroom, she wanted to be helpful, but all she did was tugging on the back of my jacket. Because of the commotion, Hein forgot my preferred routines too, so the whole thing was a mess. We were stuck in a queue of wheelchairs, all of them headed to the lecture hall. We wanted to go to the break room, which was the other way. I was almost inadvertently taken to the lecture by my mother-in-law, but I was able to prevent it and I was allowed to go to the now vacant break room with Hein. After a bit of acclimatisation and a cup of chocolate milk, I was ready to go. I’ll be honest, the National ALS Day is hugely confrontational. Involuntarily, I started comparing; not just myself and others, but others and how they were one year ago. The emails I got afterwards told me that I wasn’t the only one who did.
The lecture turned out to be a large plea for official trial runs. Discussion about Maurits van Selms was abruptly ended. After the officious part of the conference, it was party time. Many familiar faces, lots of fun. Because I can’t shake hands, the hand of one of my fellow patients is put into my palm. We intimately sat there for minutes. Hein acted as my interpreter. My appreciation for the people who understand me grew immensely. Whenever I would talk to a fellow patient, I’d stare at them, unable to understand a thing. I’d quickly look around in search of a person willing to translate. Lo and behold, every single spouse interpreted their partner’s words to a T. It’s not the only way of doing it. I asked Jan van Atten a question and after spending some time behind his writing tablet, he turned it around having spelled out his answer. Don’t you dare interrupt his writing process. We’re still able to converse, however clumsily. I recognise myself in their strange laughter, the unintentional noises they make sometimes and odd grimaces. To the uninitiated we must look like a bunch of weird pathetic sods. Despite that, I enjoyed myself immensely and I noticed that everyone was very spirited. We didn’t leave until the end of the conference. At the end I didn’t feel tired but rather elated.

Toe-curling

Besides having trouble not finding my own state of being toe-curling sometimes, I do actually have toes that curl, much like my fingers. Everytime I put on my shoes in the morning, I have to make sure that my toes are decently straight when I push them into my shoe. My feet are also contractured, meaning I walk on my toes, followed by my heels. I can stand reasonably well with my modified shoes. Once a day, I walk from my bed to the bathroom. Sometimes, I accidentally stand on the top side of my toes. That’s not what toes are made for. In short: my toes have a lot to put up with. Especially my big toes. My right big toe has gotten infected, so I bathe it in a Epsom salt bath every night. I don’t mind a foot bath, but I hope my toe heals soon.

Procrastinator

I’m a procrastinator. I try to hold on to my old ways as long as possible and only when I can’t go on any longer do I quit. During my confrontation with other PALS, my procrastination became extra clear. They got a PEG as a precaution, got artificial respiration before having trouble breathing at night and had wheelchairs and machines more advanced than their own diseases. Not me. During the day, I use an ordinary desk chair (it is electrically adjustable, though), I have no communication equipment on my wheelchair, try to have as few aides as possible and have postponed respiratory equipment indefinitely. I’m not the only one, though. There are two kinds of ALS patients: the procrastinators and the anticipators.

Up to date

I’d been building up a backlog these past few months; more than 10 unanswered emails, not much progress on my diary, no inspiration for the kids’ newsletters. Now that I have a head mouse though, I’m up to date again. It’s a new sensation. I’m starting to take more initiative in writing emails, not just limiting myself to answering them. I’ve also started playing FreeCell again, useless as it may be. The thing is: I still have to write two letters, and I’m all out of excuses to postpone them.

NRC interview

We had a tense breakfast on Saturday. The mail had already been delivered, so the next thud on the doormat would have to be the newspaper. It got here at 12:30. We were surprised to see I had gotten a whole page, with a huge picture. Through the weeping, I smiled. At 13:00 I received my first email about the article, from one of the people who worked on my book. At 14:00, the first email from a stranger arrived. They must have booted up their PC as soon as they had read the paper. Right now it’s Monday, three days and 25 emails on. A quarter of them from friends, a quarter from strangers and half of them from ex-colleagues or old housemates from my college days. They were surprising and sweet. I got lots of compliments about the picture. Sometimes, I wonder: “why do I keep putting myself in the limelight?” Although every time I do, it does feel satisfying.

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

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.

In May, three years ago, I was diagnosed with ALS. The symptoms manifested more than four year ago and last May, my PEG was installed. It wouldn’t be a stretch to call the month of May my ALS jubilee. Statistically, I’m in the critical stage: the wrong side of the statistic; the borrowed time. According to the books, ALS gives you three to five years to live. Whether the countdown starts after the diagnosis or the first manifestation of symptoms is up in the air. As regards respiration, I’m in critical condition too. By the end of April, my lung capacity was one litre. By now, I have 30% of the lung capacity of the average woman my age. Fortunately I’m not suffering from carbon buildup. Secretly, I hope my lung capacity is a bit higher, because I get nervous during breath tests. What is more concrete is the fact I have to accept that I am truly on borrowed time.

Quality of life

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

CPR

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

Intimacy

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

Medical circuit

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

Euthanasia

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

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

Thou, France

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

Hein

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

Hot

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

Garden

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

Food

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

Saliva

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

An ALS encounter

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

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

For the past month, Ward has become a Harry Potter fanatic. My GP suggested he read the books to me. We started last night. Instead of flipping the channels after the evening soaps, I was read to. I really enjoyed it.

Slow Pentecost

It doesn’t happen very often, but this Pentecost weekend I was bored. I didn’t know what to write, we didn’t go on any outings and the weather was bad and cold. I napped a lot. And I nagged Floor. About how it would be a good idea to go through her History material well in advance, while Floor didn’t feel like it at all. Fortunately, we did some evening activities which were highly enjoyable. It’s worrying to me whenever I can’t think of anything to do. Amusing oneself is an important skill for an ALS patient. Maybe it’s time for me to get a library card and some audiobooks. I am content with Ward reading to me. On Whitsunday we paid a visit to the renovated National Museum of Ethnology. Pretty, but not very original. All new museums look very much alike. Many showcases, nice lighting and lots of slow modern media. The appeal of the old building has vanished completely under the veneer of modernisation. The kids stayed home. Like I said: museum fatigue.

Big toe aftermath

In March, part of my ingrown toenail and the accompanying fibroma was removed. Regrettably, the wound wouldn’t close. My shoe probably puts too much pressure on my toe, because of which the fibroma and infection have returned. I won’t be able to wear shoes for two weeks. All of that while I’m so dependent on my shoes. Twice a week, the GP comes by to treat my foot with silver nitrate, a substance that kills fibroma. My toe has gone black. When it’s warm, having no footwear can be awfully cold. I still use Epsom salt, often accompanied by Floor and sometimes Ward, who also enjoy foot baths.

Bitter

Helping me got to and use the toilet has become harder lately. When I sit down I often do so at a wrong angle and when I get up, my legs buckle, making it harder for my caregivers to get me on my feet. Besides, our bathroom is miniscule, not granting my carers much maneuverability. I recognise the pattern. First, my directions become more and more specific, after which I’m faced with the unavoidable realization that I can’t go on like that any longer. Like typing with a mouse, using the bathroom and eating sandwiches are quickly becoming unmanageable. The difference is that there are alternatives for typing and eating sandwiches: the head mouse and my PEG. There aren’t any readily available alternatives for using the bathroom. Granted, Hein still manages fine, but he’s not available every hour of the day. On top of that, he still has a weekend off. I’m bitter. It causes complications in the carer schedule and I’ll have to let go of another routine, this time without knowing what it’ll be replaced by. To be continued.

Cancer

A friend of mine has metastasised breast cancer. For the first time, I’ve realized that ALS has its advantages. I don’t have to make any medical decisions. No chance of recovery, no side effects, no hope but no hope lost either. None of that. Just the task of living on as best I can. It can be tricky, but it’s tranquil in a sense. It’s uncomparable to the life between dread and hope she’s leading right now. These advantages are also disadvantageous, however. With cancer, people ask about the possibility of treatment. It’s in flux. You’re doing something about it. Your story of survival gives people the strength to talk about your disease. After the ALS diagnosis, there’s just silence.

’Ballad of Lasts’

In my thoughts, I always note when I did something for the last time. Here follows a list. At least it’ll be off my chest.

• In May of 1998 I biked for the last time, after a schoolyard tumble with a bleeding head wound, many concerned parents and shaken kids.
• In September of 1998 I drove for the last time, the GP could come visit me instead. No longer safe.
• In October of 1998 I dressed myself for the last time.
• In November of 1998 I walked through the house without a rollator for the last time. The last time I went to the attic (using the stairs).
• In June of 1999 I fed myself for the last time, because it tired me. The last time I worked in my upstairs study, I could still operate the stairlift by myself.
• In July of 1999 I autonomously used the bathroom for the last time, because I couldn’t lift my trousers anymore.
• In August of 1999 I typed for the last time, albeit with one finger, taking four hours to type a quarter of a page.
• In September of 1999 I went outside with my scooter for the last time, turning became too difficult.
• In October of 1999 I showered while standing up for the last time
• In December of 1999 I ate my last non-blended dinner, but it was still thoroughly mashed.
• In March of 2000 I went to the toilet with my rollator for the last time, terrifying.
• In October of 2000 I drank unassisted for the last time, I couldn’t bow forward anymore.
• In October of 2000 I sat in the passenger seat of the van for the last time, my head kept slumping forward.
• In October of 2000 I used my light foldable wheelchair for the last time.
• In November of 2000 I stood up by only using my rollator for the last time.
• In December of 2000 I typed using my mouse for the last time, as well as sitting in a normal desk chair.

Some developments happen at once. Still, I speak (or I try to), I play bridge, I laugh, I help with schoolwork, I go on holiday and I have loyal friends and family.

Toilet shenanigans

Hein immediately came up with a solution for my toilet problems: a commode. I dismissed the idea, too much of a privacy breach. Despite that, Hein went to a medical shop one day and returned with, you guessed it, a commode. Initially, it was our intention to put it over the toilet so it looks like the toilet bowl is attached to the back wall (it’s fixed to a sidewall), giving helpers more space to hoist me up. To actually do that though, the toilet seat and arm supports would have to be removed to make space. Thus, nobody (including me) would be able to use the bathroom normally. Not a great solution. Oh well, we’re a couple of days on and I’m over my initial apprehensions. Our priorities are clear again: being able to safely use the bathroom without any inhibitions. We put the commode in the hallway. Indefinitely, because we’re looking into renovating the bathroom. I trained with Inge this morning and it went well. It takes some getting used to, but in the big picture, it’s no big deal. Thus, the commode is proudly on display in our hallway. My mother finds it distasteful and suggested we cover it with a towel.

Momentary overload

Not only am I having difficulties with using the bathroom, but our regular carer is leaving us in July, the RIO is changing the amount of care I’ll get every week and we’re having a foldable shower chair delivered. In short, my whole routine is messed up. I’m not in the mood for that. Mind if I skip this round?

Nighttime analysis

I often wake up at night just to stretch and readjust. I can’t really call it waking up either, because I’m only ever conscious enough to note darkness, light, silence, the sounds of birds and the sounds of the heating unit. All of these different sounds and sensations signify different times of night, so I know what time it is without an alarm clock. As the days get longer though, the periods of “light without a sound” are becoming longer by the week. I always want to get out of bed then, but I’ve been able to resist doing just that lately.

Faithful

For almost three years, I’ve had a very consistent schedule of faithful caring friends and family. My mother still comes over every Monday afternoon till Tuesday morning, now assisted by a professional caregiver. Every three weeks, my brother Anton stops by on a Wednesday. Regardless of the weather, we go outside for a walk. On Thursdays, it’s either my mother-in-law or my sister-in-law Lieke who takes care of me. My neighbour Lisette assists my mother-in-law when I have to use the bathroom. On Fridays my friends Marjolein and Tineke alternate caring duties. We go on outings whenever we can. For the past two and a half years, Inge has been my main carer on Monday, Wednesday and Friday mornings, helping not just with housekeeping but a lot of other stuff. Of course, there’s Hein, Floor and Ward who take care of me for the remaining time. At school, Floor was asked if she know what informal care is. She had no idea. Well, she does it, as well as all of the aforementioned friends and family. Besides International ALS Day, June 21st is the day of informal are, and I want to put my faithful helping hands in the spotlight for once. Thanks everyone, without you my life would be a lot more dull.

Terrible disease

Prompted by the International ALS Day, an letter was composed to raise awareness about ALS. In the letter there is mention of a terrible disease. You may find it odd, but I’m against that. It’s so negative. There are plenty of worse diseases. Most ALS patients live good lives. Not everyone is so lucky. Maybe thinking of ALS as a “terrible disease” just doesn’t fit into my optimistic worldview. Isn’t it terrible. Well, it’s not pleasant, at least.

Not really true

Previously, I wrote about the silence that surrounds you after an ALS diagnosis, but that’s not true. It’s human nature to not accept the incurability of one’s disease. The alternative circuit is bustling. I did visualisations, reiki and (used to) use many anti-oxidants. I chatted about that with many people. Apparently, talking about treatment is easier than talking about the diseases and its consequences.

New help

Today is my first day with my new caretaker. I need to get used to it. Having to explain everything again: no bent straws, don’t hold my straw, hold the cup upright, etc. When she hoisted me up she gripped me so tightly I almost completely disappeared in her bosoms. I gasped for air. We couldn’t find a way to use the bathroom we both felt comfortable with. I do think she’s nice. I’m a bit grumpy though, I don’t take to change very kindy. I’m frustrated because of my unintelligibility and the mutual confusion it causes. I’ll get used to it. She does understand me and makes relativising jokes.

Hein on tour

Hein went cycling in Limburg this weekend, putting some real miles on his bike. Some time to himself, but not for too long. I slept in my chair overnight. I was glad to be in my bed again last night. My sister-in-law Lieke took care of me. On Saturday evening we saw Bridget Jones’s Diary with mothers and daughters. I highly recommend it. A lovely night of laughter and relaxation. I entertained a lot of company too. I notice I called on Lieke a lot, I do rely on my caretakers an awful lot. The weekend went smoothly.

World ALS Day, June 21st 2001 in the metropolis of Uden

Right before we went to Uden, we got the news that the frontman for Mexico, Olav, had passed away. How did he deteriorate so quickly? He seemed fantastic on March 15th. I was bothered by it. On the ALS Day itself we commemorated Olav, too.
It was a great event with excellent food (for those who still eat it) and good service. The opening ceremony was a parachute jump of five parachutists. Two of them landed well, one got tangled in a street lamp and to of them landed out of sight. There was a humanist introduction and Maurits van Selms’ attorney, followed by an open space, a kind of structured coffee break. We were asked to think of conversation topics, from holidays to dating prospects. We didn’t participate, but we did talk to a fellow ALS patient from Leiden who was not looking forward to this day and confrontation. All in all, we had a good and casual time. There weren’t too many people (I only recognised a few people from prior gatherings), but the foundation still managed to make it a spirited occasion We left at half past five, feeling content.

June

June was a month of accepting changes, with which I am still coping. I’m working on it. It wasn’t all doom and gloom, though. The weather was nice, but not too hot, I enjoyed the time I spent sitting in the garden. The kids played in another tennis tournament, which I spectated. I met a lot of neighbours there. During a rainstorm, we sat under a tarp and watched the water rise up to ten centimetres. A wheelchair is infinitely useful for that. Ward found a chick on the street. It’s touching and adorable to see him grooming it. I would like to have a chicken. Floor was way too tired for exam week. She invited a bunch of her friends over to watch movies, unashamed of the commode or her ridiculous mother. Hein and I also celebrated our 12 and a half years of marriage, which we celebrated with the kids. Enjoyment of a month is more of an exercise of focus than anything else.

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

The new neighbourhood trend is finding and raising chickens. It started with Dropje, found at the hospital, allegedly without a mother. The next chick would be Ward’s. That was Tweety, an adorable brown/yellow chick. By day, they’re neighbourhood chicks. We made a big coop, which was installed next to our front door. At night, the chicks are brought inside. Most of the time, the two birds are at our house. Whenever anyone starts walking, they trot along: tip tap, tip tap. When we watch TV, they’re on the couch with us. There’s excrement everywhere. I do find it cozy, but as the chickens grow bigger, so do their droppings.

Because they constantly walk after people, Hein accidentally stood on one of the birds’ feet. The whole house was in panic mode. Tweety lost blood, limped and just sat around not doing anything. Dropje was obviously shaken up and wouldn’t stop walking circles around Tweety. Floor went to the vet with her. Tweety is on antibiotics now. Fortunately, things have gone back to normal and the chickens are tip-tapping after each other again. At night, when it gets dark, they sit down on heads and shoulders to roost. Every night, I use the computer with two chickens perched on my head and I’m powerless to stop them.

The new helps

There’s no rest for me. I used to have one help for Monday afternoon and Tuesday morning. I got two of them in return from the home care initiative. One didn’t make a great first impression. She introduced herself. When I nodded, she repeated herself, loudly and clearly. It immediately prompted me to respond: “I’m not deaf,” thinking to myself: “nor retarded.” It was an allergic reaction. It was patronizing. Inge was bombarded with questions about me, like I wasn’t there. When my mother told her she was deaf, the new help yelled everything in her ear. She meant well. She really was concerned about me. The other one didn’t show up the first day because of a misunderstanding. Things really went awry when my new Monday help suggested we get a patiet lift for the bathroom. It’s called shooting the messenger.

No, no, no

No, no, no, I don’t wanna
I don’t wanna shake hands
I don’t wanna say “hello ma’am, goodbye sir”

Paraphrased from a poem by Annie M.G. Schmidt

A patient lift, albeit one with standing assistance, but still: a lift. Look, machines are useful. What would we be without washing machines, cars and even wheelchairs? But a patient lift? It’s a huge contraption made just to put me on a toilet in the hallway. It’s like using a popemobile to get to the bathroom. Many ALS patients, me included, lose their temper when faced with a patient lift. I feel like crying.

But Jeanet, you’ll get used to it.
No, no, no, I don’t wanna.
But Jeanet, just try it sometime.
Imagine I really need to go, it would take hours.
But Jeanet, she’s not strong enough
Well, Inge isn’t that strong and she does just fine
But Jeanet, it’s hard on their backs.
No, no, no, I don’t wanna.

At last, I’m finally hooked up, a herculean task in itself. My legs spasmed. My whole posture screams of unwillingness. To make things worse, Floor has a friend over. I know my “mean side” is showing, my “rebellious child” side, my “argumentative side”. I know it’s wrong, but it’s part of who I am. I’ve always been like that and it’s often the source of my most creative ideas and solutions.

A welcome reprieve

In my mind, I was looking for alternatives. Maybe Inge wants to fill in for one of my other helps. She’s not going on holiday, maybe she needs a summer job. Most importantly, I trust her, and so do the kids. Especially during holidays, that gives me peace. I emailed her the same night. She’s in, what a relief. The summer suddenly looks a lot more sunny. I know it’s only a stay of execution, but what a stay it is. Before September, we want one caretaker for both Mondays and Tuesdays, for whom we’re searching right now. Goodbye, new helps. Goodbye, patient lift.

Hot

The start of July is sweltering. I don’t do well in the summer heat, but it’s been easy on me. We did cancel a homeopathic appointment because of the heat during car rides. We went to the beach on two nights to cool off. Thursday was the only day the heat got to me. Ward celebrated his birthday and the family had gathered in the garden, much too hot, even in the shade. My feet are swollen and my shoes are killing me. I’m having trouble losing heat.

The festival

On Sunday, we went to a festival in The Hague. The fairgrounds was full of tents and stages for theatre shows. The afternoon programme wasn’t a huge success with the kids, but at night we went to see a Loes Luca show, very funny, a sort of revue/variety show where even the waiters were part of the show. Loes Luca serenaded me with a hand on my shoulder for at least 30 seconds. Other than that, we saw a short show where the audience played the role of a housefly. The film on the screen featured Jim van der Woude trying to swat the fly. The ground shook along to the film. It was very primitive, a sort of parody of Disneyland.

My homepage

My homepage and the contacts I’ve accrued from it do me good. People who find support and inspiration from my diary feel especially rewarding. This month, the first message of “where is your June diary” already arrived at 8PM, July 1st. Or the bravery of a friend from way back who wanted to raise more ALS awareness. Or an old neighbour who remembered me. The following are a few special emails I’ve received.

During the World ALS Day, I was at a public speaking course in Nijmegen. There, I raised awareness for ALS, or at least I told my groupmates all I know about it, anyways. One of my fellow trainees was the head of a healthcare initiative and helped me fill in the gaps.

A quick message, just to tell you how good my food was. I had meat, fava beans with pork and potatoes, all blended together with a food processor and I ate like royalty. It was still warm and I was done in no time. What a relief, being able to eat at my old pace and… eating more than usual. I put it off for way too long because I was scared to start the next stage of my illness. If I had known it was this easy, maybe I wouldn’t have lost so much weight. All thanks to your email about blender food.

Your story in NRC on March 24th, 2001 is still interesting to us. An intense story, easily empathize with. Actually, I read and saved the article somewhere (but I lost it somewhere so I had to find an old copy). This morning I (Henk, also born in ‘55), together with Linda (8) and Paul (3,7) read your story again, with Linda and Paul listening intently. Linda was very taken with your story and Paul was most impressed. Linda would like to know if you were happy with your haircut (“the hairdresser asked if Hein was happy with the haircut”) and she understands that “the hairdresser should have asked you, not Hein” (her own words).
I read it to them, not just because I want them to know about you and your disease and how Hein, Floor and Ward treat you, but also to explain how a family friend feels who is battling a kidney disease.

I’ve been reading your diary for a while now… I thought it was a good idea to introduce my brother to your story and with the help of his wife, I did. It’s been very helpful to them.
When we talked about the need to get a PEG, his decision to get one was made easier by your diary. The sad part is that after he decided to get the operation (a few weeks ago) and was put in the OR (he had been mentally preparing himself for the installation of the tube), the doctor told him that operating would be too dangerous because of his breathing problems. He went home with empty hands.

The things one sees on a slow work day! Lacking anything else to do, I surfed the internet. Yes, I have to get used to the new jargon too. There, I stumbled upon a very familiar name. At first I was doubtful, but my (almost-) photographic memory proved me right (I thought you looked familiar in the picture with your husband), but when I saw your brother’s name, it clicked: you had to be the one who lived on the Erasmusweg in The Hague, under the Kortekaas family next to Aunt Tilly. Yours was the third door downstairs, mine was was the first one on the second floor.

My mother
While my mother is deaf, she understood me for a long time, mostly on intuition. Lately, it’s gotten harder to understand each other. She doesn’t hear the doorbell ring. I make lots of noise and gesture at the window. My mother looks at the window, doubtfully, is something wrong with the drapes? Or the phone rings, and I nod at it, right next to my cup of tea. Would I like some tea? We do have a lot of fun though. Whenever Floor walks into the room with jeans that are way too short, she says “don’t trip on your pants-legs”. She’s a neat freak too. Descaling the toilet for a bit. Beating the doormats. Gee, what a useful trinket she’s found this time. Before you know it, there’s a new “Swiffer” in the house only she uses, or an instrument to see how much water is left in a plant pot. Meanwhile, Hein gets tips on how to remove the laundry from the machine with as few creases as possible. Before, I would have despised this much meddling. Now, I tolerate it, unless it becomes too meddlesome. Oh well, to each their own.

Aunt Rie

Since I got sick, I’ve avoided my family. A reunion, my mother’s birthday parties and, by now, many funerals of aunts and uncles have gone without my presence. Why? Because I’m scared to face my family. I see it in their eyes; “gee, such an energetic girl, in such a bad state.” I can’t take it. Strangely enough, I see my in-laws often enough. Oh well, all of those aunts, uncles and cousins, they don’t know me anyway. Essentially, it’s about loss of face. Once the avoiding starts, it’s hard to snap out of it. I do email with a few family members. This month, I made an exception. Aunt Rie, my mother’s sister, paid me a visit. An aunt I’ve always been close with. It was fun, but I could see in her eyes that she found it difficult. My mother confirmed that suspicion later. Apparently, seeing is different than knowing or reading about me. My writing is a bit concealing. It reflects my psyche in all of its sharpness. The same can’t be said for my body.

Dreaming

I dream a lot. Because I wake up often, I remember them. In my dreams I’m usually normal, but I usually have the feeling that something is not quite right. I often dream about going to work again. I walk around, confused in vaguely familiar environment, looking for familiar faces, none of whom work at KPN anymore. Finally, I see my boss who tells me I have to try extra hard to go to work again. After all, I’m not normal. Last night was even crazier. Instead of a feeding tube, an electrical cable protruded from my body. After charging for a bit, I was back in action. If only.

Camp

Floor and Ward went to camp this week. Floor went for the fourth time, to Luxembourg. It’s Ward’s first time. Floor just left. She got up at 5 to catch the bus at 7. So did I. In a bit, we’ll be dropping Ward off. I’m concerned. He’s never been away from home for that long. To a foreign destination with only girls in his class. Still, he has to sleep in the boys’ tent. I hope he finds his place. We just got back from dropping him off. It’s emotional every time. There he was, behind the window, surrounded by girls. Have fun, my boy. Meanwhile, we’re stuck with… you guessed it, two chickens.

The chicks

By now, Hein has made a cage out of an upturned table. We were getting sick of the bird poop. The cage is in the garden, in front of the doors. The chicks run around in front of the window, squeaking loudly: “let us in!” At night, they’re allowed in the house. They’re excited. Around nine, thy roost on my shoulder. Like vacuum cleaners, they peck every biscuit crumb off of my t-shirt and sometimes they drink from my cup. They remind me of a budgie I used to own. It wanted to experience everything I did, too; drinking, reading the paper. We get so much pleasure out of our chicks.

Intelligibility

I’m harder to understand. Even my usual interpreters are struggling, but we’re usually fine. First, I look for a synonym or another way of putting it and when that doesn’t work, we spell it. But even spelling is becoming harder. The letters are barely discernible because the sounds I make sound so similar. I’ve already permanently replaced the Z with an S, which gets me reprimanded sometimes. The first letters are usually fine, but we usually get stuck on one letter. After the small hold-up, we usually figure it out. That’s when it happens. My interpreter has forgotten all of the preceding letters. Stupid, stupid, stupid. From the top. Sometimes, they get one letter wrong in a whole series of letters. Good luck explaining that one.

They’re back

On Saturday, they returned. We picked up Ward at 3 and Floor at 7. Ward was surprisingly spry, apparently he had napped every afternoon of camp. On Wednesday, we had already received two postcards. Apart from a cut from a guy rope, he were fine. Floor, on the other hand, was worn out and got off the bus feeling nauseous. She had been drinking from a stream and it was only on Wednesday when the police declared the water unsafe. Half of the camp was vomiting. Our week at home was fine. It was a bit quiet, but I had the computer all to myself. I bridged until I could bridge no more and the computer beat me relentlessly. My bids were always too high. I’m glad they’re back. Now, they’ll have to amuse themselves for another two and a half weeks before we go on holiday. On August 15th we’ll leave for France, first to Brittany and then on to Oleron.

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

For one and a half years, I’ve emailed with Roel van der Kley, a fellow ALS patient. I always enjoy our correspondence. He has a good sense of humor and a knack for relativisation. It’s odd, but I have no mental image of Roel because we’ve never met. Roel shys away from ALS Days, but that may be because he spends lots of time in Tuscany. Just when we had agreed to meet up, and Hein even spoke to him on the phone, we got a phone call early in the morning. Roel died peacefully in his sleep on the evening of August 5th. I reread all of his letters on Monday. They’re gems. Many tears were shed.

Cassette tapes

Before the holidays, I realised that “reading” books on cassettes would be a good holiday activity for me. On Friday afternoon, way too late of course, we called the library for the blind in Nijmegen. But libraries for the blind are closed on Friday afternoon. Same goes for the one in The Hague. My mother will stop by there on Monday and bring me two of them. I’ve picked A Year in the Provence by Peter Mayle and a book by Marjan Berk. It takes some getting used to listening to tapes in company, headphones slip off my head. A Year in the Provence is a particularly good book and very well-read. It leaves me wanting more. I solved the problem of not being able to skip boring pages by simply falling asleep. By now, we’ve received the catalog of the Nijmegen library. There’s a huge selection and excellent service.

New shoes

My left foot is currently very swollen. It’s because of my lack of exercise and constantly dangling legs. It gets worse when it’s warm. It got so bad that Hein could barely get my shoes on. On the day before we departed we bought a new pair of shoes. They’re the same as my old ones, but two sizes larger. Bigger shoes are more expensive, but at least I won’t have trouble putting them on again.

We depart

It feels weird to go on holiday while everyone else is arriving back home. On the other hand, we’ve been looking forward to it, while also prolonging our holiday spirit and the weather was very kind. The kids were able to keep busy after camp and they had plenty of friends who were still in the country to swim, play in the street or go to the beach with. That’s not always a sure thing.

I’ve made lists and it looks like all arrangements have been made. On Wednesday at 8:30 my mother- and sister-in-law will pick us up (but Lieke overslept, making it closer to 10 AM). For the past few years we’ve gone on holiday with them and my nephew Tim, a fellow ex-freshman. I was in Lieke’s car, which fortunately had air conditioning, because it’s going to be hot. We put the orphan chickens in the coop by the front door. The neighbourhood kids will take care of them. Hopefully, the cats will leave them alone.

The Atlantic coast

Prelude

When we booked this trip in January, I was full of doubts. Would I still be around? Would I need a nighttime breathing apparatus? In what condition would I be? Still, I persevered and now I’m here, with none of the aforementioned complications. It doesn’t mean that I’m taking departing lightly. I’m dreading the journey itself. Will it go alright? Can I still sit in a normal car? What will the hygienic faculties be like? Like that, I’m full of little fears. On the outward journey Floor was in the car with me. I can still sit in passenger seats, though I can’t move my right leg by myself. Once in a while, Floor does it for me, to adjust my posture. It wasn’t a big deal on the way there.

Brittany

We spent the first four nights in a chambre d’hotel, a farmhouse hotel, run by a Dutch couple in Brittany close to Mont St. Michel. We were hospitably greeted with a delicious meal in the kitchen, drinks and merriment. We immediately decided to have dinner with them for the rest of our stay. He is an artist and a great storyteller, she is very helpful. There are chickens (we exchanged chicken stories), a goat, horse, dog and two cats, of whom the three month old cat Zelia is our favourite. She likes to sleep on handicapped people’s laps, those don’t move as much. Thus, to Floor’s envy, she spent lots of time snoring on my lap. There was a pingpong table which was very popular with the kids. The invalid-accessible faculties are a bit primitive; the toilet is too tall and the house has a few thresholds. Still, I love that owners of privately-owned hotels are willing to make those adjustments. We weren’t idle. We visited St. Malo, Mont St. Michel, the beach, coastal towns, Dol de Bretagne and Mont Dol. The weather was good; not too hot, sun and clouds.

L’accolade

Our next destination is a wheelchair-accessible bungalow park. The brain behind the operation, Monique Schlieman, made her dream reality. 400 volunteers spent years building the park. Beds welded by hand, bed linens sewn by hand. The garden furniture was donated by Hartman, the tiles by Sphinx, the glass by Leerdam, etc. etc. and it looks very professional. The bungalows were constructed using a Southern French building style, including automatically irrigated gardens. The cottages are spacious and comfortable. There’s a public pool and a terrace. There are statues everywhere, made by a satisfied customer. The staff consists of volunteers who are always ready to help. There are original plays put on by (handicapped) kids in an open-air theatre. The whole thing is oozing with love and care. www.l-accolade.nl

There are only two downsides. The bungalows are meant to be private. My view is just the garden, a big contrast with the camping last year, where I could spend days looking at the view. I think invalids like having something to look at. Furthermore, the kids will have an easier time with less privacy. Secondly, the park is located on Ile d’Oleron, an island full of beaches best explored on a bicycle and inaccessible to invalids. Other than that, the island is fairly boring.

Ile d’Oleron

Like most postcards we received said, it was way too hot. The same goes on our end. For the first few days, it’s nice. We celebrated Floor’s birthday, went to the market in the morning and sat poolside. After that, Hein and the kids rented bikes and went on tours, while my mother- and sister-in-law Lieke and I stayed behind. After one o’clock we went inside. We opened two opposing doors and I spent the rest of the afternoon in the draft, listening to my book. I barely fit in my shorts, so I haven’t lost weight. At one point we gave into the temptation to go on a trip our own; a train tour. I sweated buckets. Not successful. At night we played Scrabble, a game I’m very good at (oh, the things I have to do to keep my ego sated), or went to open-air theatre shows. On Saturday my thighs started aching from all of the sitting I’d been doing. I also missed my newspapers. I was just sitting around, while the others were reading, swimming, writing postcards etc. We bought a newspaper and went out more; to the beach, and after four we visited some villages. I felt better. The others went sailing on an old ship and visited a fort surrounded by the sea, while Hein and I stayed behind. Still, I had a newspaper to dig through. We experienced a terrible thunderstorm, the lights went out and the reception flooded. All in all, I’m content.

The return journey

Before, I was optimistic. “It’ll be a cakewalk”, I thought. 1100 kilometres on one day is manageable. When push came to shove, I had my doubts. But we left early for us: 8:30 sharp. Ward is in charge of moving my right leg on the return journey. At three we were in Paris. We stopped for a bit. By then, I was already nauseous and my headache. At seven, we left Paris behind us. Four hours, and only 60 kilometres. With my constant fear of losing sight of each other. All of my equipment and Hein were in the other car, so I sat in the car, alert and tense, fully focused on following our white van. At 2AM we got back home. I was the only one the journey broke.

Retrospect

So that’s done. I’m thankful to my travelling companions for making this possible for me. When I see myself on video, I make myself a little upset. I look so unimpressive. Nonetheless, I feel completely accepted. While it wasn’t as spectacular as last year, it was a nice holiday and I was surrounded by love. I also greatly admire the people who made my accomodation possible.

Back home

How the chickens have grown. How beautiful the garden looks. How nice, receiving postage and emails. How fun, seeing our friends at an “end of holiday” get-together. How lovely, seeing my mother again. How unfortunate that it’s dark so early. How regrettable that my holiday spirit has truly faded now.

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

The chickens have gotten bigger and definitely lost some of their charm. They still cheep instead of clucking and still haven’t grown crests. I expect we’ll set them free this weekend. We’ll have to see how they do in the wild. Other than that, we harvested 1.5 kg of tomatoes, 2 apples and enough potatoes for dinner. Not bad, considering we’re beginners.

On Thursday, the four of us went to the forest to look for a good place to release them. Someone told us not to deposit them at a petting zoo, because they’re territorial. There are lots of wild chickens. We put them next to the fence of the petting zoo, so Floor can check on them on her way to school. After throwing them some food and taking a few pictures, we left the chickens behind, like Hansel and Gretel. A rooster and a hen were already present, so let’s call them their adoptive parents. Floor spotted them the following days and they were thriving.

Dealing with carers

Dealing with carers is delicate business. Both parties have to feel at ease. It’s great when we hit it off, so I try to invest in that relationship. Carers are few and far between, so it’s important to let them know what you want. You can’t be frivolous with those relationships. By the way, I have more respect for people in healthcare by the day. People who deal with dinks like me. (Floor read along and told me: “you’re not a dink”.) It has a more positive effect on society than selling phones. Having friends and family as carers is a whole different story. You want to pick up where you left off, but of course that’s not possible. Family has it the hardest. Sometimes they have to face my anger. With Hein, I often debate whether I should ask him something now or wait for later, but often I feel like I’m asking too much of him.

Whining doesn’t help, creates a toxic environment and pushes people away. I’ve never been a nag, but I do get angry and impatient. Complaining in writing is foreign to me and doesn’t make for a great read. One has to think of their readers. That’s why I probably sketch my life as better than it actually is. That’s also a way of coping.

A happy person

My father-in-law was concerned during our holiday; was I doing alright? Now that he’s read my diary and seen the relaxed atmosphere at home, he’s reassured. He told me he’s surprised and amazed that I call myself a happy person. I dwelled on that for a long time. Why wouldn’t I be happy? Happiness is impossible, only when you don’t use your current situation as a given, but constantly question everything and refuse to accept your illness. That’s just the way it is. In my situation, I go through fun and less fun things. In my situation, I can still be a happy person.

Prayer

I received an email from Singapore from a Dutch woman who married a Pakistani man and converted to Islam. She sent a host of research papers proving that prayer does help; people who pray are more resistant, heal faster and people praying for you is also beneficial. She told me to ask people to pray for me. I know there are people who pray for me. I like that thought.

Asking people to pray for me, though, is something I don’t see myself doing. It’s taboo to me. In Islam it’s a part of everyday life. And even in America it’s run of the mill. That’s obvious after an attack like that. However, in the Netherlands it’s never really addressed.

Floor is worried

It started during our holiday. Floor felt strange tremors in her arms and legs every now and then. She completely panicked. I realised quickly that it was because of me. After all, I often have involuntary muscle contractions (fasciculations). Would being the child of an ALS patient lead to a lifetime of being scared to get the same disease? How do the parents have to deal with that fear. We told her that it’s not hereditary when ALS manifests this late in life. It didn’t help much, the panic didn’t subside. We asked the GP. “Probably growth symptoms, happens a lot”, he told her. I hope that helped. I’m afraid that she’ll never completely get over that fear. This morning, Ward told me about muscular twitches in his arm. Is it just growth? I don’t want to do this to my kids.

The doctor tested her reflexed and took a good look at her. She hasn’t mentioned it since.

A new carer

For the whole month of September, care went as per usual. Despite her imminent departure, Marje worked on every Tuesday of September. Inge took care of Mondays, but in October she’ll have class on Mondays. In the meantime, we’ve been looking for someone else. On Monday, our new help Astrid came by. We tried using the toilet. We still have to get used to and start trusting each other, she’s rather petite. I immediately liked her during her preliminary interview. I liked seeing her beforehand. It’s drastically different than the last carer, who simply showed up to work. All there is left to do now is learning to trust her in the bathroom and we’ll be in the clear.

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

Mary Pickford

I found the abovementioned adage while making the new newsletter for the Lawrence LeShan Foundation, a spiritual organisation offering guidance to people with life-threatening diseases. It’s the third newsletter with me as the lead editor. I was very moved by this motto.

Watching the dog

Lieke is watching Buuf’s dog. Buuf [a shorthand for “neighbour” -Ed.] is one of her former, you guessed it, neighbours. Thus, when she cares of me every Thursday, she brings her dog along. She can watch us both. Nervously, the dog entered the room, jumped on me and licked my hands. Horrible. Defenseless, I accepted my fate. Now I remember why I don’t want a dog. This one constantly wants to sit on your lap. Lovely. Whenever Lieke feeds me sandwiches, she squeezed herself onto Lieke’s lap. How cozy, the three of us, huddled together eating a sammich. The dog and I, in a constant battle for our sitter’s attention. Ward came home and the dog bombarded him with love and affection. But of course, walking the dog is wonderful. Along with the neighbourhood kids, a proud Ward gallivanted around with the dog on a leash. She’s fairly obedient. And I, too, warmed up to the dog by the end of the day. Of course, the inevitable question was asked: “Can we get a dog?” Luckily, the idea was quickly nipped in the bud.

The aesthetics of a PEG

Applying a PEG (feeding tube) is no cakewalk. Many ALS patients dread it; because of practical, emotional and aesthetic reasons. Well, I’ve given up a lot of aesthetics already; no more make-up, wide elastic trousers, sweater vests instead of the smart jackets I used to wear to work, no shaving my legs or armpits. The only thing I did was dye my grey hair again. I’m a practical person. That’s easier for my loved ones. Aesthetically, getting a PEG wasn’t a huge hurdle. A dear correspondent of mine doesn’t find a PEG appealing at all. However, in the meantime she is losing a lot of weight, to the point that she’s become tired and lifeless. She’s wearing herself out. She has been admitted to hospital. First, they’re going to try to fatten her up with pureed food and such. If that doesn’t work, she will need a PEG. She’s expecting to remain hospitalized for 5 weeks. We visited her on Wednesday. Lots of sleep, eating for three and being spoiled a bit is her therapy.

After two weeks of hospital, she hasn’t gained an ounce, so she decided to get a PEG, which she pronounces PECH. Because she wasn’t looking forward to having an endoscope in her throat, the PE(CH)G will be installed with a radiographer. It’s an external operation with X-ray and only requires a small tube in the throat in order to make the knot. No gastroenterologist needed. Apparently, this method is frequently used in England on bulbar ALS sufferers, because their bulbar region is so sensitive.

Slightly nervous

Thursday was the first day with our new help, Astrid. I was a bit nervous all morning. Not because of eating or drinking. No, as long as I can sit on a chair, I’ll be fine. My nervousness is for the moment I have to use the bathroom. All morning, I debated “should I go now or should I wait?” Eventually, I decided to make the leap; we went to the toilet. It went well and I spent the rest of the morning feeling relieved. I’m like that with all of my carers who sporadically help me use the bathroom. Would they still be able to adhere to my old routine?

Nose

With ALS, the subject of respiration is unavoidable. Many neurologists are against artificial respiration for ALS patients; the disease is too progressive. Even nasal intubation is advised against (like a correspondent of mine heard from her neurologist), because if ALS is above the neck (bulbar), it won’t be possible to do it nasally, instead needing a tracheostomy (a hole and tube through the throat). It would be possible if the ALS is non-bulbar, but if it’s both, intubation is impossible. One’s facial muscles would be too rigid, or one’s mouth would gape too much to properly install a nasal tube.

I, a bulbar patient, have been going to the Centre for Home Respiration in Utrecht for three years and I have never heard about the impossibility of nasal intubation. Fortunately, a dear correspondent wrote to an American expert on the subject. What a nice fellow, writing back this quickly and elaborately. Last but not least; the answer is reassuring. There’s so much medical incompetence in the Netherlands, or at least there’s too many prejudices and aversions in the medical world.

His answer was as follows

Regarding your question: “…do bulbar patients skip the mask ‘trial’?”`A one word answer is: “No !” . To breathe or not to breathe…. That is the question! It is certainly not true that “a mask is never an option for a bulbar patient.” It is true, however, that tracheostomy needs to be considered as ALS progresses, particularly as bulbar impairment becomes more severe (that is, if long-term survival is desired).

The longer answer is that bulbar impairment with ALS is a continuum from mild to severe. Nasal mask Ventilation (noninvasive) is often successful for people with “mild”, or “mild to moderate” bulbar impairment. The pile up of secretions can become a problem with nasal ventilation, if secretions are pushed down into the back of the throat and airways, thus blocking air exchange and causing gagging or choking. However if one has an effective cough (using the assistive cough techniques) and secretions are not a big problem all the time, then nasal ventilation may work. It is very reasonable (unless bulbar impairment is severe) to arrange a trial of nasal ventilation. If it doesn’t work then go on to the next option (tracheostomy or palliative care).

Edward Anthony Oppenheimer, MD, FCCP
Pulmonary Medicine
Los Angeles, California – USA
Email: Eaopp@UCLA.edu

Trips

I’m glad we went on so many trips and enjoyed the nice October weather. Since we’ve had kids, we’ve participated in the morning and afternoon festivities on October 3rd (The anniversary of the end of the Siege of Leiden). After the parade, the festival became a drunken mess and the atmosphere turned hostile. Thus, we made our way back through Breestraat, watched the water show and watched another parade (like we always do). We’ve been doing it for years, but it looks like it’s coming to an end. Floor couldn’t come this year. She went out with her friends, returning at midnight. After the fireworks, we went to pick her up. Ward did come with us, but he had other plans with his friends at three, so we left early. We ate hotchpotch and that was it, the 3rd of October had passed.

The next night, we were supposed to go see the film Nynke, but seeing as it played on a screen in an upstairs area, we watched La Pianiste instead, not my preferred choice. It’s a hards ruthless story. It did make an impression in me, unlike Bridget Jones’s Diary, so at least it was intriguing. We had drinks afterwards, which was nice. Despite the fact that it was already October, we sat outside on a heated terrace. While I barely drink anymore (I used to drink a lot), I enjoyed a delicious Grand Marnier.

On Sunday, we visited Dordrecht with some friends. Every first Sunday of the month, a whole route of charity shops and art galleries open their doors. Gorgeous city, Dordrecht, it was a pleasant afternoon. Prince Willem Alexander and Maxima walked the exact same route the day after. The kids, however, are less and less likely to tag along. Floor’s excuse was that she had to do homework and Ward’s neighbourhood football tournament was finally happening. There weren’t as many people as we had hoped, but it was great fun nonetheless. I love the fact that they organise things like that.

Op school stonden ze op het bord geschreven,
het werkwoord hebben en het werkwoord zijn;
hiermee was tijd, was eeuwigheid gegeven,
de ene werkelijkheid, de andere schijn.

Hebben is niets. Is oorlog. Is niet leven.
Is van de wereld en haar goden zijn.
Zijn is, boven die dingen uitgeheven,
vervuld worden van goddelijke pijn.

Hebben is hard. Is lichaam. Is twee borsten.
Is naar de aarde hongeren en dorsten.
Is enkel zinnen, enkel botte plicht.

Zijn is de ziel, is luisteren, is wijken,
is kind worden en naar de sterren kijken,
en daarheen langzaam worden opgelicht.

Ed Hoornik

With this poem, Gerard said farewell to me. The last three lines were especially important to him. Gerard was my correspondent and friend for more than 6 months. He was like my father; he started every email with “Hello, girl”, and he encouraged me to keep publishing my diary. He was an enthusiastic reader. I got an email with this poem one day before he passed. I’m thankful that he thought of me, even in his last moments.

Toenail

Yesterday, my toenail was removed for the second time. My toe refused to heal and kept getting infected and growing fibromas. After half a year of messing with Biotex, silver nitrate and “open-air therapy”, my GP had had enough and referred me to a surgeon once more. Apparently, there is too much pressure on my toe. Yesterday was the day. The injection is the worst part, along with the fact that the bandages can’t be removed for two days. After moving me though, the bandage already unraveled after half a day. Thus, we put a normal bandaid on it and I’m already wearing shoes again because it takes away some of the pain. Let’s hope it heals this time.

Off day

Sunday was one of those off days. It happens every couple of months. I wake up with a headache. Immediately, the anxiety comes in: “I hope it’s not from nocturnal chest tightness that’s common in ALS patients”. I’m cold and I feel nauseous. We cancel on our afternoon guests. I don’t eat anything all day. To make things worse, I got a terrible email. I keep crying about it, which isn’t making my head ache any less. At night, we received the news that Gerard had died. What a day. Luckily, I slept well and woke up the next morning fresh and without a headache.

Passion

On Saturday evening we went to a Hester Macander show, a comedian. The theme of the show was focusing on looking for passion, instead of on the things we do to keep ourselves busy. It resonated with me. I’ve wondered before what I would like to be if reincarnation were real. My conclusion is that I would like to be passionate about one all-overshadowing thing. I would love to make music. I think music is one of our most primal emotions, a language that transcends culture. Making music together is energising. Another possibility is becoming a photographer, a very ambitious one of course, one does have to be unique. Or I’d start a shelter for homeless children in a third-world country. Everyone probably has dreams like that. That deep down, there is a great person within you. The reality is, you’re already doing the best you can, which is a monumental task in itself.

October

October was a good month. Pleasant weather that made going on trips possible, even during autumn break. The new help is doing fine and that’s calming. The renovation of the bathroom and shower is taking forever, but we’re not really working on it that hard. Getting into the one square metre shower stall is still manageable. And I’ve warmed up to the commode. I do miss having a project, like my book last year, or the musical the year before. I’m looking for something new, but I don’t know what. For now, I have plenty of work to do before Sinterklaas.

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