Last week was relaxing. Bad weather, so most of it was spent inside. My mother is sick and because of her absence on Monday and Tuesday, we had to improvise with our carer schedule. It’s a delicate system and we really ought to have hired a new carer by now. My mother feels like she’s doing me a disservice by falling ill, so she was glad to hear that we had found a replacement.
After three weeks my mother got better. My primary carer Inge and my mother-in-law took her shifts. Hein has found a new carer for Tuesday morning who is also open to filling other gaps in the schedule.

Female discomfort

I asked my neurologist about the possibility of a pill that stops the menstrual cycle but he advised me not to use them. Hormonal shifts may negatively influence the development of ALS. There are women who deteriorate even faster after taking pills. I wouldn’t fancy that. I guess I’ll just struggle through this useless discomfort.

Flu shot

ALS patients are advised to get flu shots to reduce their chance of contracting pneumonia. It goes against every single alternative healing method. I decided to get one anyway. To my delight, a fellow ALS patient told me that his homeopath had actually recommended getting a flu shot. I wouldn’t be able to forgive myself if I died of the flu after refusing to get the vaccine. It was the first time I’d gotten a vaccine since I got diagnosed, but it didn’t have any side effects, luckily.

Head mouse

Typing using my mouse is becoming more difficult by the day. I will have to switch to typing using my head. It’s another big step and it saddens me to lose another trusted faculty. Handling a mouse is becoming impossible because of my tilting hand, my drooping head and the neck ache my posture gives me. I think typing with my head will be more relaxing. I’ll get to sit in a more comfortable chair, for one. I practised for the first time yesterday. It looks like a bindi, but I’m actually equipped with a silver dot between my head, which reflects infrared light to the screen, moving my cursor. It created a lot of curiosity from others. It does look peculiar. The strange thing is, I completely forget about the silver dot between my eyes. I guess others have to get used to it more than I do.
Help! Help! The cursor is flying across the screen. Even when it’s stationary, it trembly. I accidentally click all over the place. Programs start up and shut down, scrolling is impossible and I can’t type a single word. Luckily my hand still works, so when things go awry I can fall back on the old method. It’s all so fiddly my head hurts.
I would like some more explanation on head typing and some alternatives couldn’t hurt either. It’s urgent. I communicate by typing, after all. I’m getting a bit panicky. For now, I’ll just keep using my hand.

Kids Ward and Floor’s age

I’ve always been a bit envious of ALS patients with older kids. “At least they got to see their children grow up”, I’ll think, forgetting that Ward and Floor are my greatest sources of happiness. Afternoons are my favourite time of day. I eagerly await their return home. Like an old-fashioned stay-at-home mom I’ll wait for them (often joined by dad and grandma) with a cup of tea at the ready. Listening to their stories, singing songs, doing homework, going outside, sports, quizzing, having friends over, I’m involved in all of it. I’m in good hands. No reason for envy.
I recently heard Floor say that being a good mother is staying at home for the kids. Before, I would have given her a stern emancipatory talking-to, but not this time. Both because of my lacking communication ability (and maybe because I enjoy being at home with the kids).

One and a half-year-olds

Some friends of ours and Hein’s brother have one and a half year old sons. We went on lots of trips with those friends. Little Thomas and I are both carted around. It gives us a certain bond, even though our developments are essentially opposite. While the boy is becoming more and more self-sufficient, I’m becoming more dependent on others. The little tyke knows that, too. Often he looks at me in wonder. “Why do you still have to be fed?” Even one-year-olds are aware of what is normal and what is not.

Nodding off

My head is getting heavier and heavier and sometimes just rolls to the side. A kiss that is too firm can do the trick. It usually happens when I’m in a chair with a straight headrest. If I can’t keep my head straight, it can droop forward. Ever since Hein adjusted my chair headrest to a backwards position, there has been less stress on my neck and my head tends to stay upright. We’ve been looking for a neck brace for some time. Most of the ones I’ve tried were too tall at the front, making my head tilt back a bit. That’s unfortunate, because I always keep my head slightly skewed forward to prevent aspiration. The braces were just stifling to me. Yesterday we visited a company that makes tailored neck braces. I wasn’t looking forward to having my neck moulded in plaster, but luckily one of the ones they had in storage was a perfect fit for my neck. Content with our purchase, we went home.

6 months of PEG

I got my PEG on May 18th. It’s six months later and I’m glad that using it hasn’t become a necessity yet. I only use it for water. That’s because having to bow forward to drink from a straw is strenuous for my neck. I ask people to hold my cup up to my face when I want to drink. It’s not a fun task for my carers. Hein doesn’t like it much, but Ward and Floor hate it the most. The PEG is a good way to circumvent that.

Sitting in November

I’ve been sitting a lot more lately. I only use the PC in the morning, after which my hand and head are tired out. Afternoons are spent in my comfy chair. I usually listen to music. I’m a huge fan of U2’s latest album. My range is getting smaller and smaller. I don’t think there has been a month in my post-diagnosis life in which I’ve been outside less. The weather has been foul. I’m seeing fewer people in daily life, too. I realize that it’s winter, of course. Fewer people about. Because of my limited daily energy reserves, writing Sinterklaas poems and keeping up with my diary have become my number one priorities. I have completely neglected my email inbox. Oh well, I’ll have time for that some other day.

Het bericht Diary November 2000 verscheen eerst op Living with ALS.

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.

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.

It’s been a busy week. On Wednesday I had a homeopathy appointment and on Thursday I attended ALS Day in Uden. Ineke, a fellow ALS patient from Leiden and her boyfriend carpooled with us, which was nice, despite the fact that I fell asleep in the car. Uden is not closeby; two and a half hours there and two hours back. All of that for an event lasting only four hours. We were late and had already missed a lecture. The good news: they’re building a national ALS centre, a central point for information about ALS. After that, it was a pleasant, laid-back day with only a light programme. We sat at a table, surrounded by familiar faces. I had my ever first reflex zone massage too. While I didn’t have my feet massaged, my hands did get treated. According to my masseuse I shed a lot of toxins. I’ll feel much better tomorrow. It was a love-filled day. People who knew me from my homepage came up to me and some of them hugged me. They politely asked if they could beforehand, mind you. I’ve learned to appreciate days like these.

The day after

The day after ALS Day was not pleasant. My head and stomach ached, I felt hot one moment and cold the other and I felt like I needed to vomit. I spent the entire day napping under a blanket. I didn’t eat anything and vomited once. Exasperated, I took some preemptive antibiotics. Maybe ALS Day had been more strenuous than I previously thought. Maybe I was just shedding toxins. Either way, I felt pretty damn awful. The following day I felt a lot better and I answered all of my email prompted by ALS Day, because we always write each other after one of these gatherings to exchange stories and experiences.

TV show

I’ve had a VHS tape of a TV programme about life with ALS for over 6 months, but I never had the courage to actually watch it. Two weeks before ALS day I received an email from Loes Claermont, one of the people featured in the TV show. I had corresponded with her before, but I didn’t put two and two together then. This year would be her first ALS day ever. She was warmly greeted, despite the fact that she was very upset about the things she saw and heard. Loes has a very slow-acting form of ALS. Meeting her made me curious and I watched the videotape. I cried a lot, but I also saw a lot of myself in her. I was touched by the other featured patient’s reflections on being curious about death and wondering if he could still be with them after passing away. I often wonder the very same thing.

Football

Saturday has become football day. Ward played with his team for the very first time today. He had been training with them since September. His team is comprised of a lot of his classmates. Floor played her second match today. And thus, slowly but surely, Saturday turned into a day of football. When the weather is fair and the match isn’t too early, we’ll come watch the match too. I wonder what they’re like on the field. I have never seen Floor play. Seeing as I used to play as well, I’m curious. We went to see Ward play on Saturday. He’s quite the acquisition, according to his teammates.

Traditional food

My childhood dinners were often just potatoes, greens and some meat. Student housing was a culinary revolution for me. No more hotchpotch. But with young kids, simple Dutch dinner has its advantages. Intricate dishes just lead to more pickiness and digging out unwanted ingredients. Just as the kids are learning to like more exotic cuisines, their mother has become wholly dependent on easily mashable food. In that regard, there is nothing better than vegetables and potatoes (meat is a bit trickier). Thus, we have a very traditional menu; beetroots on Monday, green beans on Tuesday, leek or spinach on Wednesday, spaghetti on Thursday, hotchpotch on Friday, the kids get to pick on Saturday and we eat takeaway on Sunday. It’s horribly predictable. Sometimes, we even willingly eat Brussels sprouts, until Floor got horrible stomach cramps for which she had to see a doctor, an intestinal colic. We’re hesitant about eating sprouts again. The kids don’t like this traditional cuisine. They’ll start to appreciate it once they grow older.

Teenage daughter

I had a row with Floor this morning. She wanted an allowance and I asked her why. She saw that as a provocation (turns out, she wanted money to buy a rose to give out on Valentine’s day and hoped I would finance it). It’s hard, only being able to speak if the other party is patient enough to listen. Good luck finding patience in an angry teenage daughter. She left for school, still upset. I hate that, but at least the fight is over. Actually, I’m left feeling angry. She’s quick to start yelling, something I don’t really have an answer to. Usually, we make up. We calmly talk about it. Sometimes, I write her an email. Still, it’s rough.

Holiday

On Friday we’ll be leaving for Tubbergen in Twente. Like every year, we’ll be accompanied by Hein’s family and hope for fair weather. We used to go skiing. Surprisingly, the kids don’t complain about that at all. In May, we’ll be visiting Westerbork with family friends. We made some half-hearted attempts to plan a holiday to England, but the country is not really suited for the disabled. In that regard, The Netherlands is still a frontrunner. This summer we’ll be going to Zeeland. We’ll stay a bit closer to home this year. The kids hate it. It’s the fact that they have to tell their friends “We’re going to Zeeland”. The camping ground has surfing and sailing, plenty of entertainment. It’s an image problem. Snobs.

Dexterity

One of my feet bends inward while the other goes outward. That’s why I have special shoes. They allow me to stand for over 5 minutes. Without my shoes, I’m helpless. They’re elongated on either side to prevent me rolling my ankle. I think my shoes are some of my most helpful tools. Thanks to them, I was able to keep walking and using the bathroom on my own. I noticed that nobody at the ALS Day wore them, while most of them probably have painful feet.
Another great invention is the contraceptive injection. No more fuss. After a small buildup, I only need the injection every 3 months. My GP treats me at home. I remember asking my neurologist about stopping menstruation, but he just scratched his head. Most neurologists are men. Luckily, one of my fellow female ALS patients put me onto it.
And then, of course, there’s the head mouse, a marvel of technology to the uninitiated. How could it be possible to guide the mouse with only your reflection? Currently, the two builders we hired to repair our roof are gazing at me in fascination, watching me work. Everytime someone comes to visit, I give them a demonstration. Mouths fall open in amazement. And indeed, it is a marvel. The world has become a lot more pleasant for ALS patients because of inventions like these.
Okay, I’ll also admit, last but not least, my standing patient lift is useful. I’ve gotten used to it and I’m very content with the ease and the speed with which it allows me to use the toilet.

Corrie online

My mother is improving. She doesn’t write long paragraphs anymore, now knowing that the return key skips a line, and the random capitalization has become less abundant after she found out what the CAPS key does. My previous entry gained me a number of responses. Liesbeth Koenen (a journalist and one of my readers) sent my mother a copy of her booklet Email Etiquette, a book for beginners, as a helping hand. Another reader wrote:

I liked reading about how your mother, too, has started using the computer instead of calling. My parents have also bought a used PC and are doing their utmost to learn, but they also run into some strange problems. The other day, my mother complained about the screen not turning on while the computer was running. When I came to look at it, it turned out they had forgotten to turn on the monitor. But I do like the fact that they’re trying to stay up-to-date.

And like that, many other parents are working hard to catch up to their kids.

What do you say after you said hello?

That was the title of a popular book for shy people: how do you keep a conversation going? A pertinent question, now that I’m only intelligible to a select few people. The answer is: you can’t really. Without an interpreter at my side, I’m helpless. Conversation is a one-way street. It’s something not many people are good at. People like a response. If Hein isn’t with me, I’m in for a world of awkwardness. People want to talk with me, but they can’t. After their first question to me, the convo ends. Eye contact becomes uncomfortable. That’s how it goes for the rest of the night. That’s why I like to avoid large crowds. Intimate contact is impossible, partly because of the noise. I concentrate on the card game. In smaller groups, I’m always terrified of my translator going to the kitchen to put the kettle on. There we are, awkwardness mounting. Luckily, my interpreter makes a swift return. I do admire people who are courageous enough to attempt talking to me.

And how are your toes?

They’re great, thanks! Because of the fluid retention in my leg I’ve started wearing a tube grip, a kind of stretchy bandage that keeps the fluids at bay. Because of that, my toes are less swollen, less prone to friction and have an easier time healing. In addition, my shoes aren’t as tight as before. In short, a welcome change.

Spring break

I feel more uncomfortable when I’m away from home. My routine is broken. I don’t sleep well, which is not an issue at home. I sleep my days away. The toilet is too far removed from the wall, making me slump like a sack of potatoes. We’re with a large group and I feel like a spectator, except for the time we spend playing games (we played a lot of Settlers of Catan). The family is helpful. I was stupid not to take my laptop with me, I would feel a lot more self-sufficient if I had. The weather was not cooperative; cold winds, rain, with a small amount of sunlight in between (when we got back home, the sky was blue again). Still, we saw a lot of the surrounding countryside. I especially enjoyed our visits to Ootmarsum and its galleries and Elsloo House. In Oldenzaal we visited what’s supposed to be the most modern shopping mall in The Netherlands (not) where I bought some new clothes. The windmills there looked straight out of a painting. If only the weather had been as kind to us.

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