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.

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.

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

Broken appliances

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

Good news

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

Bad news

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

School’s out

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

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