{"id":1607,"date":"2000-05-30T19:26:07","date_gmt":"2000-05-30T17:26:07","guid":{"rendered":"http:\/\/levenmetals.nl\/dagboek-mei-2000\/"},"modified":"2017-12-28T17:18:28","modified_gmt":"2017-12-28T16:18:28","slug":"diary-may-2000","status":"publish","type":"post","link":"https:\/\/levenmetals.nl\/en\/diary-may-2000\/","title":{"rendered":"Diary May 2000"},"content":{"rendered":"

When I wake each morning I decide…<\/em>
\n This can be a good day or a bad day – my choice.<\/em>
\n I can be happy or sad – my choice.<\/em>
\n I can complain or I can cope – my choice.<\/em>
\n Life can be a chore or a challenge – my choice.<\/em>
\n I can take from life or give to life – my choice.<\/em>
\n If all things are possible,<\/em>
\n How I deal with those possibilities is – my choice.<\/em>
\nSteve Shackel April 2000
\n——————————————————————————–<\/p>\n

Renesse<\/h2>\n

I spent my May holiday in Renesse, alongside some friends with kids of the same age as mine, so things went smoothly. Our number one activity was hiking, through both cities and nature. I even went for a ride on a Sand Rider, one of those beach wheelchairs. It looked ridiculous, but it\u2019s the price you pay for functionality. We\u2019d seen them used before, in Zeeland last year. It was a tall wheelchair on thick yellow tyres, a white plastic frame and had a bright blue seat. I remember thinking then: \u201cI wouldn\u2019t want to be caught dead on one of those.\u201d Apparently, things change. I felt like a celebrity, being wheeled around on it while being photographed from all sides. Despite that, I still felt a bit debilitated sitting in it. I don\u2019t know why, but I felt like a bit of a simpleton.
\nThe weather wasn\u2019t on our side, it was cold all week. As if to spite us, the cold spell finally broke on the day we left. We took our last breakfast in the beach tent where we had drank coffee every afternoon that week. I had a good time. <\/p>\n

How are we going to tell the kids?<\/h2>\n

The kids know about my illness and the fact that I\u2019m deteriorating hasn\u2019t eluded them either. We use the term ALS, too. The ultimate result of the disease, death, is never discussed. I think they know more than they let on. Especially since I cry whenever anything sad is on TV. Despite all that, we never explicitly discuss dying. After all, life is not just about making goodbyes. I\u2019m essentially burying my head in the sand, all while having the gnawing notion that the kids are already distancing themselves from me. I\u2019m not looking forward to talking about it in the slightest. Too much emotion to handle. <\/p>\n

What we did talk about at length was my PEG operation. During dinner yesterday, one week before I\u2019m supposed to go into the OR, we told them. Hein did the talking. He had barely started before I started bawling like the crybaby I am. Floor immediately tried to shut down the discussion, but we didn\u2019t let her. Eventually, we got to talking about technical stuff, a lighter part of the topic. The kids were in disbelief. \u201cDo we have to puree your apple slices before we feed them to you?\u201d \u201cIs the tube detachable?\u201d It was high time for the kids to go outside and play, to let the news sink in. In bed, Ward wanted to know more about the PEG. It troubles him. He slept in the guest room, on the same floor as Hein and I. To be continued. <\/p>\n

Coughing<\/h2>\n

Every single human lung contains mucus. One swallow and it\u2019s gone. When your lung capacity is diminished, however, coughing it up is the only way to evacuate your airways, meaning I have to cough a lot. At first, most people would fall silent whenever I did, thinking I was going to speak. By now, most people are used to it. Nobody pays it any mind, unless it turns into a coughing fit. Even then, people aren\u2019t as alarmed by it as they would have been last year. I went to the hairdresser today. Having to hock up phlegm in public is still embarrassing in public, mostly because of the sounds that accompany it. An American PAL once wrote: \u201cI keep making those embarrassing funny noises.\u201d I couldn\u2019t have put it better. <\/p>\n

Squeaking (read: screaming)<\/h2>\n

Whenever I panic, I shut down. Doing things that are routine prevents panic. Routines are fairly unattainable, sadly, because I have too many different caretakers for that. Using the bathroom is an especially stressful affair. Turning while using the rollator is a delicate process, as are standing up in the bathroom and using the toilet. If there\u2019s even a remote chance that things might go awry, I start gesticulating. When people don\u2019t understand the directions I\u2019m giving them, I start squeaking. That\u2019s usually when the routine breaks down completely. The caretaker doesn\u2019t know what to do, meaning that the thing I was trying so hard to avoid is the only way forward, with me screaming all the way. Often, they\u2019ll hold me tighter, thinking my distress is because I\u2019m afraid I\u2019ll fall, while all I really want is to find my own balance. When I don\u2019t have foothold, I might as well be a sack of oats. Nobody does it with bad intentions and whenever I snap at people I feel like an ungrateful brat. I can\u2019t help screaming when things go wrong. Sorry, carers.
\nWhenever Hein and I are put in a new situation, the same happens. For the first few days of holidays it\u2019s screaming galore. It\u2019s the price we pay when creating new routines. Help, help!<\/p>\n

Self-amusement<\/h2>\n

The ability to amuse oneself is one of the most important to ALS patients, even better if it doesn\u2019t have too many moving parts. A quirk about ALS is that one doesn\u2019t feel sick at all (at least, I don\u2019t). Granted, my muscles don\u2019t cooperate too well and comfort is few and far between, but I don\u2019t feel nauseous, there\u2019s no pain and my mind and senses are sharp as ever. It\u2019s those senses and that mind that need stimulation. This is what one of my days might look like:<\/p>\n

Around 8 o\u2019clock, Hein gets me out of bed and puts me in the shower. After drying off, my shoes come on and I use my toiletries while standing in front of a mirror. Afterwards, I\u2019m put in my chair while Hein brings Ward to school. After he returns I fully dress and we go downstairs. Around this time, our primary carer Inge arrives. Hein leaves for work. After breakfast with a newspaper, I turn on my PC.<\/p>\n

Writing is my most important pastime: my diary, my homepage, answering email, compiling newsletters for the kids and some other things here and there. I often spend three hours of my morning on writing. Twice a week, writing is superseded by a morning stroll and a visit to the tea parlour. After that it\u2019s time for lunch (which can take ages, because eating sandwiches is a Herculean task), followed by a brief period of tranquility before the kids get home. I spend most afternoons sitting in the garden, doing grocery shopping or doing other communal activities. Two afternoons a week are spent doing physical therapy. Overall, I spend the bulk of my time sitting in a chair. I don\u2019t mind terribly; I make plans, I daydream or I fantasise stories in my head. I\u2019ve been doing that since I was little. I like to think that I\u2019ve become quite good at fantasising. It\u2019s very relaxing. By the time dinner is ready, I\u2019ll usually be on my PC, playing dumb games. At night I watch TV, write some more or play games of bridge on the computer (it\u2019s good training). I\u2019ve got to say, I\u2019m rarely bored. I think I owe that to my family. I don\u2019t want to be too much of a nuisance. The PC and the internet are the perfect tools for my plight. <\/p>\n

My biggest fear<\/h2>\n

Before I was admitted to the hospital, I had one huge fear: if my heart gave out or I stopped breathing during the operation, I hadn\u2019t said goodbye to my kids. The thought alone was crushing. The day before my surgery, I told Hein that I wanted to be resuscitated if anything went wrong. It was a huge conflict of my rationality and my emotions. My rationality told me: \u201cwouldn\u2019t it be fitting to go while I still have some of my faculties?\u201d while my emotional side fiercely protested this sentiment. It\u2019s irreconcilable. Still, saying goodbye is inevitable. <\/p>\n

Day one after the operation<\/h2>\n

I\u2019m home again, feeling weak. My stomach hurts and hocking up mucus is more painful than ever. I wasn\u2019t put under during the operation because of my weak lungs, so I had the pleasure of being awake during the operation. It wasn\u2019t fun. Having a tube inserted in my throat was accompanied by constant dry-heaving. My whole body was screaming in protest. I was given a mouthguard so I wouldn\u2019t do any lasting damage to myself while trying to vent the full-body protests, but when I got home my bottom lip looked like it\u2019d been hit by a boxer. The operation only took 10 minutes. I couldn\u2019t eat or drink anything on the first day. The pain wasn\u2019t as bad then. The following day, however, we decided to have cauliflower for dinner. Awful, my stomach completely cramped up. I immediately took a suppository. I\u2019m far from a superhero when it comes to hospital business. The constant inspections and useless reflex checks, awful. I\u2019m glad to be home. What a mess. Two days of hospital and my world has turned upside-down. I\u2019ll probably keep eating normally for the time being, only using the PEG for emergency reasons, like when we\u2019re on holiday. I\u2019m still eating normally, if a bit messily. What\u2019s next? Only time will tell. <\/p>\n

Hein<\/h2>\n

Hein stayed with me the entire time I was in hospital. I felt completely safe, because I didn\u2019t have to explain a thing to anyone. Hospital staff are glad he\u2019s here too, because he is essentially doing their job for them. I admire his patience, something in which I\u2019m lacking. He was a huge beacon of support. I\u2019m glad he was there for me. <\/p>\n

I\u2019m alright<\/h2>\n

I\u2019ve been home for three days now. I haven\u2019t needed paracetamol since last night. I\u2019m home alone, in front of my PC with my favourite CD on. Showering is a no-go for the coming week, my stomach is still bandaged. Thus, every morning Hein has to get a bucket and hand-wash me. The feeding tube has to be flushed once a day. I\u2019m bad at this stuff, a wave of self-pity is rolling over me. <\/p>\n

What do the kids think?<\/h2>\n

Floor is a bit standoffish, while Ward only voices his concerns to Hein. When I got back home, Ward gave me a framed drawing he\u2019d made. When I was in hospital we called each other on the phone. They were happily surprised when I was already back home when they got back from school on Friday. Despite the fact that I feel lousy, I\u2019ve settled back into my old ways quite nicely. Grandma Lia, who watched the kids while Hein and I were away, sewed a leather skirt for Floor\u2019s musical. The kids are apprehensive to ask about the operation. Neither of them is very keen to see what\u2019s under my bandage, let alone my feeding tube. I don\u2019t have the urge to show it to anyone either. During dinner Floor was visibly relieved that I was still eating normally. She was under the impression that everything would go through a tube from now on. To her surprise, I\u2019m still chewing. After dinner I watched TV with Ward. Home, sweet home. They still look at me out of concern whenever I cough or hock. On Sunday, the kids made 220 euros selling cookies for the tragedy in Enschede (a fireworks disaster that killed 23 and injured over a thousand<\/a>).<\/p>\n

Showering again<\/h2>\n

Today, I used the shower for the first time in two weeks. Lovely. Hein and I did have to come up with a new routine; cleaning the tube and tucking it away in a specially made bra. As of now, it\u2019s working perfectly. I still feel the tube when I\u2019m lying in bed, but maybe I\u2019ll stop noticing it eventually. A doctor removed my bandage yesterday, which Floor found idiotic. She offered to pry it off herself, but we decided against it. Life has become kind of normal again. With the new addition of a tube, of course. <\/p>\n

My book<\/h2>\n

Somewhere in the Netherlands, someone is working on my book. I like that thought. Right before my hospitalization, two benefactors from Legacy Holland paid me a visit. I was afraid that there was already a book like mine. This week, I read a book from a fellow ALS patient. It shocked me how much she went through. The chapter about CPR was particularly harrowing. Even half of what she\u2019s gone through is enough for a lifetime. Luckily, my booklet is vastly different. I\u2019ve been looking for outlooks that ALS patients have on their illness and how to deal with the disease in everyday life. They\u2019ll be featured in my book. I\u2019m also emailing friends, asking them to write one for themselves. I\u2019m excited to see what they come up with.<\/p>\n","protected":false},"excerpt":{"rendered":"

When I wake each morning I decide… This can be a good day or a bad day – my choice. I can be happy or sad – my choice. I can complain or I can cope – my choice. Life can be a chore or a challenge – my choice. I can take from life … <\/p>\n

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