Some things other people might consider small gestures mean the world to me, like adjusting my headrest to support my neck, putting my right arm over my left one instead of the other way around when I’m in the shower so it doesn’t slip off. I know how important it is (my right arm is stronger than my left so it has a better chance of keeping my left in place), even if other don’t. My bedtime rituals are especially intricate. I sleep on my side, with my left arm extended with two pillows underneath me, to prevent any pain. My right arm is more curled and is supported by a rolled-up towel. The whole ritual is the result of years of trial and error. Despite all of that effort, it goes to waste if my head is badly positioned. Sometimes, I’ll wake up in the middle of the night to find that my ear is folded up under my head or the blanket slipped off of my shoulder. And once I’m awake, it’s difficult to get back to sleep. I can’t do anything to fix it. There are so many inconceivably small things that nonetheless mean the world to me.

Shower lady (2)

I’ve been getting lots of feedback on the thing I wrote about my shower lady. Apparently, it was very relatable.

”When I was reading your December 2005 diary entry, I was reminded of my father, who also had ALS. Sometimes it was almost indescribable how clueless some assisted living workers are about ALS. I remember one of them trying to use the patient lift to put my father on a chair. She had no idea what she was doing, my mother and I are usually there to help but we weren’t that time. One moment without supervision and, before you know it, my father fell from the lift into the chair with a loud BANG. Nobody was more shocked than my dad. But that’s what happens when speed is valued above quality of care. He’s as annoyed as you are when his carers completely ignore him and strike up a conversation with me or my mother.”

There is a flipside. One morning, my shower lady told me she’d have to bathe another 7 people that morning. Good luck taking your time with each one. She told me she didn’t mind, though, because she’s a quick worker. Yeah, tell me about it. A system that expects carers to bathe 8 patients in one morning can’t be a good one.

I’ve started watching a show about four elderly people and their two nurses in a retirement home. One of the nurses is a weathered veteran while the other only started recently. Immediately, I sympathised with the young trainee, who took the time to talk to every one of her patients even though it made her a slow worker. The veteran, on the other hand, had devised all kinds of (sometimes crude) ways to get the job done as quickly as possible. Granted, she was a speedy worker, but she broke all kinds of personal barriers that didn’t need breaking.

Another thing the show illustrated beautifully is how the approval of the employer is more important than customer satisfaction in these cases. The shower lady is perfect example of this very point. She told me that the only way she’d use the shower lift was if my sister-in-law trusted her to do it right. Why does that matter? Hello? I’m still here and very much able to decide who does and doesn’t get to put me in the patient lift. I think this mentality is prevalent in larger institutions like nursing homes.

She is rather good at showering me, though. She even blow-dries my hair.

24

I spent a lot of the first week of January watching the TV series 24 with Ward. It’s about the life of a counter-terrorism operative whose family gets kidnapped. I got the boxset for Christmas and it’s very good. I scoured the internet for DVD copies of the other seasons, which I’ve bought by now. I love watching TV with my children.

Idioms

If there’s one thing I miss about vernacular these days, it’s the lack of proverbs and expressions we had back in the day. Sometimes, my mother uses one and asks the kids if they know what she meant. They usually don’t. It’s a shame and I think, if I were able to talk, I’d teach them a thing or two about proverbs. For now, I’ll just write about it in my diary. Idioms make language so much more colourful and rich, but I suppose it’s just too slow for the SMS/MSN generation.

Lion King

We went to the Lion King musical. The costumes were gorgeous and we could see every little detail from the front row. It’s too bad my neck went numb during the show. I had a headache the following day. We went to see Narnia the following weekend, which was an old-fashioned fantasy film. I think I’m done with talking animals for now.

Break-ins

We’ve had a lot of break-ins in the neighbourhood recently. The police issued a warning and one of the burglary victims did the same. It just so happens that I sleep in the living room downstairs a lot, so I was extra vigilant. Fortunately, our back garden isn’t connected to an alleyway, but one of the neighbour’s kids spotted two suspicious men in our front yard. This morning, our locksmith quoted a whopping 400 euros for new locks. The kids check the locks every night.

Misery

How much misery can a person be put through? I checked my mail. An email from someone with ALS who, after being breast cancer free for five years, found out the cancer has metastasised in her bone marrow and lungs. ALS and cancer, what are the chances? The following email was one from a woman whose mother died of ALS. Her father committed suicide after his wife was diagnosed, he couldn’t deal with her pain. Short messages containing indescribable misery. I get a lot of those.

Peeing

It’d been going well for seven years; I never have to pee at night. I didn’t have to wake Hein up to go to the bathroom. I even changed my drinking patterns to combat it, I don’t drink anything after half past seven. All of those years without as much as a hitch, but then, suddenly, I started waking up at 5:30 with a full bladder. No more sleep. Hein gets me out of bed, bathes me, dresses me and helps me into my chair downstairs, where I continue sleeping. I haven’t changed anything in my diet/drinking habits. By day, I still pee as much as I used to. I just don’t get it.

Het bericht Diary January 2006 verscheen eerst op Living with ALS.

Ward’s school has this bizarre tradition of planning outings in the middle of winter, including an actual night of camping. Two days of walking 30 kilometres using nothing but a compass, sleeping in a tent of three and heating up cans of pea soup. I don’t know what’s the point of all of it, but apparently it’s the fashionable thing to do these days. Ward was lukewarm on the whole thing. His whole outfit was borrowed, the only clothing he actually owned were his gloves. Luckily, his shoes had been broken in already, because Ward’s only preparation was going on a two-hour walk around the woods close to our house, although he did take some supplies with him. What was the trip like, you ask? A lot of walking. It was nice to try something new, but it wasn’t something he’d do again anytime soon.

Ward did winter sports during his spring break. I missed him terribly. He got back on Saturday and had the time of his life. On March 10th, Floor and Hein will go skiing for a weekend.

Scared

This morning I had a nasty accident with the stair lift, probably because my legs were badly positioned. I was still shaking minutes later. I’m always scared of it happening again. Afraid of being afraid. Some of my days are dictated by anxiety. Most normal people can’t fathom what that feels like. “Why wouldn’t you sleep in your arm chair?” Because it impedes my movement and I don’t like lying flat on my back. Nobody seems to think of the little issues. “Just try it for one night.” No thanks. I can’t adjust anything and that powerlessness is accompanied by fear, especially since I can’t talk. All I can hope for is for someone to help me. I prefer writing my fears down beforehand so there’s an emergency plan in case something goes wrong, but even then, I hate being completely dependent on someone else. It’s a matter of trust, something I don’t think normal people fully comprehend.

A good friend and ALS patient described it like this:

”Fear: probably one of the worst parts of having a disease like ALS. I suffer from it too. Fortunately, I don’t have to bother with the patient lift anymore, but when I did, my biggest fear was them leaving me hanging. I used it because my legs couldn’t support my weight anymore. The lift put pressure on my chest, because of which I had trouble breathing.
By now, my greatest fear is my life support. Sometimes, the fluids in the machine have to be replenished, so for a short while, I’m resigned to gasping, fighting for air. It has to be done quickly and efficiently. Last week, one of my nurses managed to put the water through the wrong filter and all I could do was yell incoherently, because I can’t talk without my artificial respiration, my lungs just don’t get enough air.”

My mother

My mother isn’t doing well. She’s in a lot of pain, even with her morphine patches. Last week, she stopped by our place while she was on her way to the hospital. It was the first time I’d seen in a wheelchair. I was shocked. I tried to distract her by talking about the kids, but she just wasn’t all there, slumped in her wheelchair from the pain. She also made a strange mix-up, like she was disoriented. Today, she’ll find out if she can have a back operation to reduce the pain somewhat.

Three weeks on and one hospital stay later. My mother trusts doctors more than anyone, while I try to see as few of them as possible. I select my doctors based on their behaviour and bedside manner (I’ve already got a different GP and, per my request, I always see a doctor I like during my lung inspections in Utrecht). My mother visits several. Of course, that’s easy for me to say. After all, I’m not constantly in pain.

She turned 80 on March 3rd. She’d been admitted to her nursing home the Wednesday prior. A short stay. She left the following day. She hated it there. She celebrated her 80th birthday feeling more chipper than usual in her own home.

Teeth

I’ve completely neglected my teeth since getting ALS. I always thought: “they’ll last longer than I will.” Not so, so now I’m screwed. Last week I had a terrible toothache, I couldn’t eat a sandwich because the crumbs hurt my gums. On Friday they pulled another tooth so I spent the day with bleeding gums. Whatever, the tooth itself had all but broken off completely, so I wasn’t complaining. Almost immediately, something else started hurting again. I’m meeting with my dentist soon to make a full plan. ALS patients, be warned: take good care of your teeth!

Holiday

I’ve been hinting for months that we need to start planning our summer holiday. By now, it’s too late, all of the wheelchair-accessible housing are already taken. Scandinavia didn’t look promising, except for one cottage 400 km deep inside the Arctic Circle. I found something in Ireland but nobody was too excited about it. The trouble is, we’ve seen a lot of handicapped-accessible housing over the years and it’s getting old to go on holiday in Europe.

Time for a family meeting. We had the choice between a cottage in Oxford or one in Zeeland, two places we’d already been once. The kids picked Zeeland because of the sea, the amusement and the possibility of having friends over. We decided to have a few trips to Belgian cities. Oh well, holidays close to home have their charms.

Kneeling on a bed of violets

I read the book with baited breath, despite not understanding the protagonist’s religious convictions at all. It’s a beautifully written book, penned by the oldest son of a family. He was in a unique position as the oldest. He was his parents’ mediator, did not take sides and had a lot of responsibilities, maybe more than a child should have. He reminded of Floor, but maybe that’s the position a lot of older siblings are in. Floor is a great mediator too and always acts as a buffer whenever Hein and I are at odds because of my illness. She’s got a great sense of responsibility too.

Het bericht Diary February 2006 verscheen eerst op Living with ALS.

It was my birthday present to Hein and, when it was still far away, it seemed like a good idea, but as the date drew nearer, I started to get worried. They were supposed to leave on Thursday afternoon for a long weekend of skiing in La Plagne, to return on Monday morning. I was dreading having to defecate on the commode, bathing and having to sleep in my chair downstairs for four nights. Lieke would fill in for Hein, alternating with my other carers. Once they were actually gone, my worries were gone. Especially when, on Friday, my carer Roeline offered to shower me with Lieke’s help. When she, in the nick of time (the chemist’s closes at six) offered to go get me a laxative, the weekend was looking brighter than ever. Not being worried about my bowel habits in particular really relieved some tension. It’ll make Hein’s free weekends in the future a lot easier. I’m sorry about talking about bowel movements this much, but I’m just glad I managed for a weekend without Hein.

I had enough amusement while Hein and Floor were abroad. Bridge on Friday, where I threw a bit of a tantrum when my friends, who usually bring their own snacks and drinks, decided to let Lieke go to the shops for them. I felt bad for Lieke. On Saturday, I went for a walk, had my father-in-law Kees over and watched the finale of Idol. On Sunday I played Scrabble with Lia and watched series three of 24 with Ward. Before you knew it, our two skiers were back home. It’s too bad they didn’t get that much sun while they were there.

The end

There were certain times in my life that seemed like ends of chapters. I haven’t had that feeling in a while now, I’ve had the same routines for years now. But, suddenly, it seems like two of my remaining routines are coming to an end.

Firstly, being able to sleep in my chair downstairs alone. I do it twice a week, with the backrest tilted backwards and my head resting on my chest. A few times a night, I move my head to give my neck a break. Over the years, my head developed a tendency to bend to the left. It’s gotten to the point where my back does the same. Head are heavy, let me tell you. For the past few nights, I’ve find it impossible to move my head of my own accord. I panicked. I can’t talk or make any noise with my chin on my chest, so I was left to my own devices. I was able to free myself after 15 minutes of wriggling, but I’d positioned myself in a way that would make sleeping impossible. I needed help. My anxiety doesn’t do my sleeping any good either. When Hein was abroad, I discovered that wearing a scarf helps when I’m in my chair. It has to be tied in such a way that my chin is resting on the scarf. It makes it impossible for my head to tilt forward completely so I can lift my head without any help. I’ve had to change the routine, but at least I haven’t lost it completely. I’m afraid it won’t be a permanent solution, however. (At the time of writing, I’ve already given up on it. I couldn’t sleep in my chair anymore, as opposed to my bed, where I can at least get seven hours of decent sleep, provided that I don’t drink anything after 19:30.)

Secondly, and more importantly: I’m losing the ability to stand. It’s most apparent when I try to use the bathroom. I barely manage with the help of my patient lift, which requires very specific instructions to work properly, but without the help of a lift, it’s a struggle for Hein. Our last resort would be buying a passive lift, which doesn’t even require the user to sit anymore. The patient is in a sort of bag, which would require me to change up all of my routines. I’d have to sleep in a bed downstairs, on my own in the sunroom. I probably wouldn’t be able to use the bathroom as often as I do now. It would mean bedlam for my current routines and that freaks me out.

The Cobra Museum of Modern Art

There aren’t too many activities suitable for me, especially when the weather’s bad or when it’s cold outside. Besides that, I’m critical; I don’t want to travel halfway across the country and prefer to only go do things I’ve never done before. I don’t like to visit places that don’t have a disableds bathroom either. The Cobra Museum of Modern Art fit all of my requirements. It’s a bright, logical building. The bathroom was a disaster, way too cramped. By the way, what idiot came up with the idea to put the toilet bowl 20cm from the wall? I didn’t have anything to support my back. My legs gave out and Hein yelled: “can’t you just cooperate for once?” I was upset. I didn’t contribute anything to conversations. In fact, I think I uttered about one sentence. It made me ask myself: Why do people still put up with me? Am I any fun anymore?

Am I any fun anymore?

Having been ill as long as I have, it’s hard not to become at least a bit self-centred. One’s world becomes smaller by the day, despite attempts to keep up with family and friends. My focus is wholly on getting through the day, I’m completely concerned with my own well-being. Typing is tiresome, which further limits the amount of contact I’m able to maintain with the outside world. Reading is fun, but it’s not exactly sociable. Company is great, but not for too long. After a few hours, all I want is to be alone again. No, I don’t think I’m as much fun to be around as I used to be.

51

Another year done. I’m 51. I had a pleasant birthday party, even my mother showed up. A lot of family came by in the afternoon and the following day, I played bridge with my friends. My birthday bouquets make the house looks so cosy.

June 21st: World ALS Day

I want to promote the cycling charity drive that’s taking place on the afternoon of June 21st in Zoetermeer (starting at SnowWorld). There’s a provincial contest for who gets the most people to participate in the drive. The winners get to meet professional cyclist Leontien van Moorsel. My in-laws are already hard at work to make it happen. So come one, come all!

Het bericht Diary March 2006 verscheen eerst op Living with ALS.

Goodbye

I parted ways with my carer Carlien, who cooked us an Indonesian dish called Soto as a parting gift. She had been with me for a year and eight months, two days a week at first, later reduced to once a week. She knew everything there was to know about movies, watched the same shows I did, taught me how to download things and helped me read. She is a physical therapist who specialises in breathing and relaxation techniques, a field in which she’d found a job. Saying goodbye to an old carer also means we have to train a new one, which is always a challenge. The new carer started on Monday, May 1st. She was home alone with me. I’d hoped Ward would be home, but he was gone for the day. Thus, we had to manage together, I was nervous and she was unsure. When we gave her instructions we had focused on helping me use the bathroom and omitted the communication part, which proved to be a bottleneck. I was getting more and more frustrated until she decided to call Hein. That was probably the moment she decided to quit. She left that very same day at 12 o’clock.

Cycling for ALS

My in-laws, along with the ALS Foundation, have been busy planning out the World ALS Day charity drive on June 21st. I’ll be watching the cyclists go from the sideline. It’s also possible to do indoor skiing for charity.

Of course, the big question is: will this make ALS more high-profile? The passing of Sylvia de Leur has lead to an increase in internet searches about ALS. The traffic on my website suddenly skyrocketed. Celebrities don’t often die of ALS, but whenever one does, ALS gets a big boost in publicity.

Other than that…

There’s not too much else to write about April. My mother has been temporarily (?) admitted to a nursing home, about 100 metres away from her house. Both times we came to visit, we took a walk back to her old house. Roel, Floor’s boyfriend, turned out to be a great easter egg hunter. Tineke, who takes care of my Friday lunches, departed on a five-month journey through Southern and Eastern Europe. And Floor isn’t too worried about her finals, which are inching closer.

Het bericht Diary April 2006 verscheen eerst op Living with ALS.

Things are going well between my shower lady and I. We’ve finally figured each other out. She’s still a bit rough when she’s dressing me, but she takes the time to shower me and blow-dry my hair. She heats up my towel on the heater, which I think is on way too much. I actually like showering now, which became even more clear when she went on holiday in May and I was stuck with a substitute.

Hans Warren

I got a copy of Hans Warren’s final diary for my birthday. I specifically asked for it because I wanted to know what the writing of a professional diarist looks like. Besides, I wanted to know what was going through his head when he and his boyfriend Mario went through a rough patch in his last year. It was rough. I know writing must have been therapeutic for him, but it doesn’t take long for the reader to spot certain repetitions in the text, like him being lukewarm on the trips Mario took him on, not liking eating out, buying African art and having difficulty sleeping and pooping, but also Mario’s suspicions that Hans Warren was being difficult for the sake of being difficult. I skipped a lot of pages while I was reading it. I immediately bought the book written by Mario Molengraaf as a homage to Hans. I also did something I’d never done before, and had the book thrown in the bin. Obviously, that struck a chord with Hein, who immediately took it out of the trash.

Family holiday

In early May, we had a family holiday in Steenwijk. There were a trampoline and a ping pong table. I’d gladly visit it again. It had a sunroom, a huge living room, a big hearth, a verandah connected to a private lawn, a great handicapped bathroom and a giant kitchen. We loved it from day one. The weather was great too. We only spent the nights inside, the rest of the time we were outside. There were more kids than there were adults, but we did just fine. The trampoline was used by old and young people alike and we had plenty of table tennis competitions over the weekend. Lieke won in the end, beating her own son, Tim. It’s too bad that I felt sick on Saturday, so I spent most of that day inside. On Sunday we went on a boat ride through Giethoorn and hiked in Kalenberg, the exact same thing we did seven years ago.

Finals

We’re not too concerned about Floor’s final exams. She’s been drinking a lot of cola so she doesn’t fall asleep on top of her books. She gave us a list of rules so we know what we can and can’t say during her exams. At least we’re still allowed to pick what we’re having for dinner. We’ve been corresponding with a lot of people who are in the same situation. Tips on foods that give you a lot of energy, for instance. It turns out that bananas and glucose tablets seem to be the best options, so we’ve bought a lot of those. She’ll get the results on June 15th.
After she finished her last exam, Floor wasn’t as sure of herself as she was at the start. One week of Greece with her friends will surely calm her down.

24

I got the first season of 24 for christmas. I bought series 2, 3 and 4 online. I downloaded the final series, the fifth one, online. That’s it for 24 for now. 5 x 24 x 45 minutes = 90 hours of watching TV with Ward. I’ll miss it. I downloaded and watched Prison Break and Lost with Floor. There are only three episodes left, then we’ll have to wait for the series to start again. It’s one of the few things we’re able to do together.
Just when I’d decided to download a few more films, I discovered that the Swedish police shut down The Pirate Bay.

Eight years since my diagnosis

I was diagnosed with ALS eight years ago, which means I’ve had it for nine years. It’s become the new normal, even to the people close to me. I’ve had a PEG (stomach tube) for six years now, too, but I still eat regular food. Yeah, I’d say May has been an important month in my life.

Emailing

Writing emails has become difficult, more so than writing in my diary. Roeline and Lieke have been helping me get through my emails, diligently typing out the letters that are coming out of my nigh-unintelligible mouth. It’s such a great help. I was starting to dread email correspondence for a while.

P.S. I hope I don’t have to remind you about June 21st, World ALS Day.

Het bericht Diary May 2006 verscheen eerst op Living with ALS.

Floor got back from her holiday to Crete on June 11th. Hein was on holiday as well that weekend, so we couldn’t pick Floor up from the airport. I’ve never gone anywhere in our van without Hein, because getting me into the thing requires a lot of muscle. When Roel proposed we go pick her up together, I didn’t hesitate, because Roel is a strong guy. Thus, I had my first van ride without Hein in six years, a milestone. Waiting for people at Schiphol Airport isn’t as fun as it used to be, by the way. No more glances at each other through the windows until the person being picked up collected their luggage. All there’s left now is an anonymous exit and texting back and forth to find each other. We came home to the smell of pie and the anticipation of the first match of the World Cup.

Oh, and Floor? She had a good time. She barely went anywhere on the island and the only differences between the pictures of her on Crete and her in Zeeland were the views.

Air conditioning

Our room has had air conditioning since last August. The salesman told us that having an AC in a bad idea because it dehumidifies the air. A better idea would be to turn it on before going to bed and turning it off when we actually did. So we did, but before you knew it, it was sweltering again and I could wave goodbye to my good night’s rest. I remedied it last year by sleeping downstairs. I can’t do that this year. As a last resort, we just turned the AC on while we were trying to sleep. It was fantastic. While the rest of the Netherlands was melting, we were sleeping in an 18°C bedroom. I’m such a pansy.

Pain

Since September of last year, I’ve had a painful big toe, probably because of my shoes. I didn’t think there was an easy way to solve it. Whenever I’m in my wheelchair, my legs have to absorb most of the bumps in the road. I try to use my footrests as little as possible. Standing up in the patient lift wasn’t a picnic either, I was in a lot of pain. The shower lady concluded that I had a clavus in my big toe. Even then, I didn’t think there would be an easy solution. After all, my shoes would always keep chafing and putting pressure on my big toe. I decided to just live with it, until I had a pedicure two weeks ago. The corn was removed and my foot hasn’t hurt since. I have no idea why I waited for so long to have it fixed. Not a clue. Floor said it was typical, just like me.

Graduation

Thursday, June 15th was the day we’d all been waiting for. Floor was expecting a phone call around three. It came at 15:15 and it bore good news. While that historic moment played out, I was on the toilet, so I missed most of it. I made up for it later. Tim, Lieke’s son and fellow graduate, came by to celebrate, along with grandma, grandpa and Lieke. We celebrated and toasted for hours. On June 30th Floor got her diploma, her high school days are over. Only then did we put up the flag, with her old school backpack on the pole.

Let’s kill ALS

We kicked June off with a photoshoot for an article for a local magazine. Monieke, Hein’s sister, set it up. The whole family gathered on the bridge and waited for our elusive photographer. We saw lots of familiar faces while we were up there, but no photographer. After waiting for a little while longer, the writer of the article decided to take the picture. Lia had brought her bright red handbag, which would look good on a picture, even one in black and white. I’d expected it to be more about the cycling charity drive, but it was more about me. It turned out great. Read it here [it’s in Dutch].

While we were celebrating Floor’s graduation, we talked about the charity tour. It wasn’t looking good, it was planned on a regular work day and a rainy one at that. Lottery ticket sales were good though. Four out of sixteen people who celebrated with us won prizes.

The charity drive was on Wednesday. It rained all morning and we left a bit late. We dropped the kids off at SnowWorld and made our way too the farm where we’d be spectating the tour. We were just in time to wish some of our cycling friends good luck. There were about 60 participants, most of them family and friends. We generated about 1800 for ALS, not as much as I’d hoped, considering how much effort everyone put in. Planning it was fun though and it created a lot of buzz. A big thank you to both my family and the others who helped organize the event.

Ward has had a busy month: exams, a tennis tournament and celebrating his birthday. Fortunately, he passed his exams and he won’t have to do anything until we go on holiday in August. I won’t be writing an entry for July, so the next time you’ll hear from me will be in September. Happy holidays, everyone!

Het bericht Diary June 2006 verscheen eerst op Living with ALS.

Margriet and I started corresponding two and a half years ago, when her illness was still in its infancy. I had a lot of fun emailing with her, even during rough patches. I feel like a coward for not responding to her final email to me. It was about struggling through life and her doubtful future. I didn’t know what to write. I didn’t want to think about those things. Two years ago, she took a train all the way over here. I thought she was so brave for doing that. To my surprise, her funeral notice included the very same Steve Shackel quote as the one on my website. Apparently, a lot of people who google Shackel get redirected to me. His name had twelve hits this month. I have a lot of fond memories of Margriet.

July

I tried to do as little as possible in July, which is a pretty easy task for me. I cancelled appointments with the respiration lab and my homeopath because of the extreme heat. I’ve never spent as much of my summer inside as this one, not even in the garden. Even the AC was overheating. In July, we thanked God when the heatwave was finally over, while in August we prayed for just a bit of sunshine.

Zeeland

We spent the first half of August in rainy Zeeland. The sun did shine intermittently. We did a lot of stuff: the kids had a motor boat and Hein and Lieke had a foldable canoe, which they spent two days trying to assemble. We visited Ghent and Antwerp, as well as lots of little villages in Zeeland itself, of course. We had a constantly rotating cast of guests, boyfriends and school friends. We had a great time.

Nasal respiration

I’ve decided not to get nasotracheal intubation. I’ve always stuck to the idea that I’ll get artificial respiration when I’m ready. The thought of having to spend more than two weeks in hospital didn’t sound too appealing to me either. I have more objections. What starts with just a nose tube could turn into 24/7 dependence on machinery. I’ve heard two first-hand accounts of nasotracheal intubation, neither of which sounded very pleasant. Being nervous about getting from A to B (like from my chair to my bed), needing more meds, 24 hours of total dependence on machinery and looking like an alien (like I don’t already look weird enough). And I haven’t even mentioned what it would do to my inner discussion of pros and cons when it all becomes too much. I could just pull the plug at that point.

How is my breathing, you may ask. Last August, my blood gases were still steady. I don’t have trouble breathing in my sleep and I’m not feeling stuffy. I do sometimes feel like I’m not breathing when I’m sleeping in my chair, after which I’ll jolt awake, panting. Sometimes, my mouth opens involuntarily, like I”m fighting for air, but that only happens sporadically.

Carers

Before summer break, Carlien notified us that she’s be quitting in September. After some thorough searching, we found a pensioned lady. The day we returned from holiday, we got the message that she’d been admitted into hospital and couldn’t make it. Bummer. With Carlien’s help, I scouted all around the country, which turned up not one, but two candidates for the position. That meant we had to choose. One of them was independent, the other was part of an organisation. I contemplated for a long time. Both interviews were great. I’ve never been great at choosing and this one was particularly hard. Meanwhile, Brenda (one of my former carers) got back from Australia and was able to fill in. I was surprised at how well she understood me after all that time and who quickly she got back into the swing of things. I’m so grateful for her help in these difficult times.

Back to normal

By now, we’ve celebrated Floor’s birthday too. She turned 18 and has started at university in Amsterdam. Fresher week started very late this year. She found a place to stay for the week and even found herself a dorm. She decided to stay home for now. I’m glad she won’t move out just yet. Last week, Ward’s school year started too. I’ve had the kids to myself for the past three months. This will take some getting used to.

Het bericht Diary July/August 2006 verscheen eerst op Living with ALS.

Because I shower more than I used to, we decided to hire a second shower lady. The showering itself is going well, but again, her patronising annoys me. Loud and simple sentences, using words like ‘sweetheart’ and ‘missy’. I despise it. I’m about her age, I just happen to be paralysed. Apparently it’s hard not to adopt that tone when you work with the elderly. Should it be, though? Would I warm up to the idea of being called ‘sweetheart’ in my 80s?

Sober

I haven’t drank any alcohol for almost nine years. I used to like to drink back in the day. Staying sober has been a piece of cake, most people I’m around don’t drink much either. I only get annoyed at other people’s alcohol consumption when I play bridge. Cards and booze don’t mix well, especially for new players. Usually, we won’t start playing until there is a bottle of some kind on the table. It doesn’t improve the game. Alcohol makes things that were already difficult much more challenging, be it the bidding order, colors and, oh yeah, what was the contract again? All the while I’m just sitting there, sober as a judge, practically hearing the gears in their heads grinding to a halt. I feel left out.

Left out

I’ve been to a few social gatherings this month, a birthday, a goodbye party and a friend’s tennis tournament. Granted, they do break the monotony, but I always find myself dreading them a bit. After all, I’m always a spectator, not being able to conversate and all. No fun for anyone. That’s why I usually don’t linger for too long. It takes courage to approach me. I always hope there’s someone who can understand me so Hein can have some fun of his own, but usually he has to step in and translate, which isn’t an easy task considering the usual noise at social events. I prefer it when my conversation partners have a lot to say, but I usually throw the towel in the ring when they start asking me questions. Praise to Alma, Fransje and the other friends who help me get through conversations.

Mucus

From time to time I suffer from excess phlegm when I’m eating. It’s usually not much and I don’t find it too difficult to cough it back up. Well, it does take an hour. I’m so envious of normal people’s ability to just clear their throats. I sometimes panic when there’s too much mucus for me to clear and I’ll spend the remainder of the day coughing, feeling hot, slumped in my chair. The other night I was playing bridge with some people who had never seen me in such a state. They were apprehensive and didn’t know what to do. They panicked a bit. I became completely oblivious to my surroundings and they played the game without me. It’s not fun when it happens, not for me nor for the people around me.

Student life

Floor has completely immersed herself in student life. She’s barely ever home. Last Sunday she was initiated into Unitas, a student union, with parents present. Hein went, while I stayed home. Now she has to pick a dispute and get to know her fellow members. She’s spent the past few weeks doing just that. Next weekend she would be going to an introductory event for her study association, but she decided against it. She was worn out. It made me think about my own time at university, how different things were back then. No hazings, no bullying pledges, no chest-thumping and no obligations. We were the flower power youth of the 70s, the time of democratisation and fighting against inequality. It’s unbelievable that our children are happily accepting the things we fought against back then. The other day I heard Floor talking on the phone, talking about a party, saying that Pledge Vos and Pledge What’s-his-face would be present too. Floor’s name is Pledge Kroft now. Bizarre. Fortunately, it’s not all bad. Some of the things they do are pretty hilarious. One time, Floor, alongside a group of other pledges, were shipped off to Texel without money on them, clad in odd costumes. They had fend for themselves for the night and they managed quite well. They found a place to sleep, above a discotheque. One time they were ordered to be in the swimming pool at 7 in the morning as punishment. After swimming for a bit under strict upperclassman supervision, they were told to tread water until the supervisors got back. While the upperclassmen snuck out, Floor and her group spent a long while treading water, waiting for them to get back. What a strange world she’s found herself in.

Het bericht Diary September 2006 verscheen eerst op Living with ALS.

October went by uneventfully. I can’t use my PC properly anymore. I can’t play more than one game of FreeCell, check my email or watch a TV series. I answer my emails with a carer’s assistance. I’m having trouble writing my diary. I can’t keep up with it anymore. I’ve downgraded to an older PC so I can use my old word prediction program, which I hope will allow me to type more autonomously again. Especially with Sinterklaas around the corner, I think a bit of autonomy would go a long way. I wouldn’t like to dictate entire Sinterklaas poems to someone.
I sometimes spend whole days doing nothing. I’ll have a morning nap, wake up just in time for my afternoon nap and fall asleep in the evening while I’m watching TV. Thrilling. Even though they’re called ‘power naps’ now, I still feel groggy whenever I have one.

Other than that, we have a new carer. Especially when they’re starting off, I like having someone else around in case something goes wrong. After five mornings I started to become a bit doubtful when she forgot to pull down my trousers for the umpteenth time we were using the bathroom, but things are getting better now.

My neck is becoming more and more achy. Whenever I go for a walk, my head lolls to the side whenever the sidewalk is even slightly tilted to the right. It just so happens that most sidewalks are slightly sloped, so every time we go for a walk, we have to stay to the right side of the street to prevent further lolling. I sometimes wake up with a painful neck too, which sometimes makes its way to my head, making me nauseous and throw up on a few occasions. I had two days of nausea and vomiting this month. On those days, I sat as still as I could, with a big bucket next to me.

I watched two movies in October, Zwartboek and Ober, and I also finished a 750 page book.

Loes

On Friday, November 3rd Loes Claerhoudt’s new book was first unveiled and presented. Hein, Lia, Floor and I were there. We were a bit late so we’d missed a bit of Cees Grimbergen interviewing Loes. A lot of people moved out of the way to let me and my wheelchair past so we could find a spot from which I could see the stage. To my surprise, Loes acknowledged my and my companions when we were seated. The whole audience spun round to look at me. I tried not to cry, but I couldn’t help it. Such a warm welcome. After the interview, Loes signed a lot of books, as did her son, the ghost writer. Loes’s signature was a stamp. We talked for a bit. I especially enjoyed seeing and talking to her sons for once. We left a bit early so we could be home by 7:30. We spent four hours driving, but they were worth it. I want one of those stamps.

Holiday

A friend of mine went to Lisbon during her autumn break. She’ll be going to London with her family over Christmas, followed by a journey through the Czech Republic during spring break. I’m envious. Holidaying like that is not in the cards for me. Lieke suggested we should start booking our own holiday relatively soon. Our biggest option is Germany. I’d like to visit Dresden. Still, I’m having a hard time getting myself to actually start booking and preparing.

Because of the lateness of this entry, I won’t be writing a November entry. I’ll be back early next year. I wish you a good Sinterklaas, merry Christmas and a happy new year!

Het bericht Diary October 2006 verscheen eerst op Living with ALS.

One would think that my dreams would have caught on to the fact that I have ALS. The truth is the complete opposite. In my dreams, I ski, hike up and down mountains, go to work (knowing I’m ill, but apparently I’ve recovered in those dreams) and generally act like a normal person. In some dreams I’m unable to talk, although eating is never a problem. Dream-me likes thick chips with mayonnaise. People are strange like that. I often have lucid dreams, where I know I’m dreaming but I don’t wake up. Sometimes, when I’m sleeping in my chair downstairs, I dream of standing on the edge of a ravine. After that, I’ll jolt awake and feverishly check my surroundings to confirm that I’m, indeed, just in a chair in my living room. I’ve heard so many other people with ALS talk about how their dreams adjusted to their condition. I guess I just haven’t caught up yet.

Splint

Last summer, I was afraid I wouldn’t be able to stand upright in the patient lift anymore. I’d often sprain my ankle, making me fall to the right. I tried wearing one of Ward’s football ankle guards, but it couldn’t bear the load. Hein made an appointment at the rehabilitation centre to find a solution, a small sturdy ankle device, which I can wear on top of my shoe. I’d forgotten about how big and crude those things look. They have to, otherwise they wouldn’t be able to support my load. What I ended up getting was a splint, not a convenient little device but something that requires a lot of effort to put on. When I’m wearing it, I feel like I have no control left over my leg. It’s in the bathroom at the moment. I’m hoping I won’t need it anytime soon.
My physical therapist works with the mentally handicapped and often complains about his clients throwing away or simply not using their splints and other appliances. I can relate to my fellow clients.

Instruments like this one are never fashionable or easy to use. I write with a woman whose sister has ALS, which often makes her slump forward. Her sister has a little harness to prevent that, but whenever it’s used, she puts up a real fight. She can’t talk at all anymore. Imagine, still having your full mental capabilities, all while having no way to explain your discomfort or take off the harness. Horrible. I get the intention of such tools, but they often defeat their own purpose: making the user feel as normal as possible. Sometimes, the means are worse than the ends.

Efficient

We’ve never celebrated Sinterklaas as efficiently as we did this year. We celebrated it early, on the 2nd of December, a Saturday. We’d already bought the presents a week prior, most of them on my weekly Saturday walk. I’d started writing the poems a week before, two to four of them a day. I dictated them, because writing proved too tiresome. It wasn’t that bad, whenever I’d come up with a few lines, I’d call someone over the write them down. Once you’ve picked a theme, writing a poem is a piece of cake. I finished the last one on Thursday, so I had plenty of time to help the others write theirs. Christmas preparations were just as efficient. Long before Sinterklaas, I’d already bought Christmas presents for my carers, Christmas wreaths and the book written by Loes. Piece of cake. It only took half an hour to find a suitable Christmas tree, and another two for Hein and Floor to decorate it, before we cleaned everything up. The tree turned out so symmetrical and well-decorated that it almost looks artificial. Moreover, Nordmann firs don’t have that usual pine smell, which only made it seem more like plastic.

Spur-of-the-moment

I think it’s because I rarely ever go into shops, but I never make spur-of-the-moment purchases. I make shopping lists and keep stock of things we need in my head. They usually contain things like food and toilet paper. But on some Saturdays I go to the supermarket with Netty or Marjolein, and whenever I do, I have them wheel me around the sweets and baked goods isles. I buy as much as I can: pancakes, tiramisu, fish, candles, croissants and other delicacies. I can’t eat any of the food, but Hein and the kids can. Their appreciation is enough for me.

Christmas

I can’t eat around other people anymore. I get restless, I choke on my food more often and have coughing fits. I tend to give up at that point. That’s why I’m not looking forward to Christmas as much as before. It’s a whole holiday that’s essentially centred around eating. On Christmas Eve, we had dinner with our friends and their kids like we always do. Fortunately, I’d had something to eat beforehand so I didn’t feel pressured to eat more during family dinner. No questions about me eating enough, although I did get spoonfed some mashed potatoes a few times. On Christmas Day, our mothers came over for dinner, which was more of a pain. I choked on a piece of fruit, which took an hour to hawk up. One hour I could have spent with my family, I spent alone, coughing. Only afterwards was I able to enjoy the party. On Boxing Day, we were supposed to have dinner with my in-laws. I proposed to go for a walk instead of dinner, which I enjoyed. I’m glad almost the whole family decided to join us for our stroll.

Distant

In her Christmas post, Loes wrote that she’s feeling more and more distant from the people in her life. I feel like that too, although I can easily say that the root of my problem is my inability to talk. Loes still has that ability, so there must be other factors at play in her case. Whether I’m feeling distant is often the deciding factor for my enjoyment of a conversation. I’m happy as long as I have even the smallest sway over the conversation, I’m content. That’s why I despise being in larger crowds. There were six of us at our New Year’s Eve party, six of which were children. That’s a lot of people. Most conversations went over my head, although playing Party & Co was fun. At twelve, we went outside to watch the fireworks. They were a bit of a letdown, so went inside to have drinks. It’s become a staple of New Year’s Eve. I always go in with the highest expectations, but always feel a bit let down by the end of it.

I wish you all a very happy 2007!

Het bericht Diary December 2006 verscheen eerst op Living with ALS.