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Saturday, June 18, 2011

An hour in the life...

It’s Saturday, 7.30 AM, and it feels to me like some people must do on a Monday as they lie in bed, not wanting to get up and face the work-week. The bed is deliciously warm and cosy.

    I don’t want to get up either, but I must. I have medications that need to be taken. I’m reminded of this by a not-so-dull pain, right where as much as possible of the tumour was excised from my brain on 17 December 2009. That’s not good. Some days it's there and others not.

    That’s right. 563 days have gone since everything changed. I waken to each one not knowing what challenge may be ahead. There’s a more general ache across my whole brain. I know that if I exercise a little and eat something, this ache will probably disappear, for a while at least. The toxins will be dispersed by physical activity. For now.

    Two days ago, a friend of ours died from stomach cancer, after a long fight. She had been cared for with great self-sacrifice by another friend, herself a kidney cancer survivor who had just looked after two other cancer patients one after the other till their deaths. One of them had ovarian cancer; the other, prostate cancer. Coming out of Oncology at the hospital after my treatment, we bumped into a young friend. She told us that her boyfriend’s father had just been diagnosed with pancreatic cancer. She looked shell-shocked. I didn't know it at the time, but my brother-in-law Jimi was at the bedside of a former band member and great entertainer Josie Jason. She succumbed to throat cancer on Wednesday. Three friends visited within days of each other; the brother of one is in chemotherapy, the brother-in-law of another as well, and the third, his wife, a survivor. I had just been communicating with another friend, also a breast cancer survivor.

    Happily, there are long-term survivors. We tend not to hear of them because recovery fades quickly into ‘normalcy’ for just about everyone else. They don’t go round shouting it to the rooftops, though I think they have a right to. But as I write this, I learn of another friend who’s just had surgery and is awaiting the results of a biopsy.

    Still unwilling to leave my warm bed, I am pleased that this time I got through the night with no seizure. At one stage my arm had that discomfort that often signals an attack, but I got up, stretched and moved, drank water, and the feeling went away.

    So now I start a mini-exercise routine as the hands of the clock swing up towards 8 am. I do things in 20s, though I gradually built up to that number. It starts right in the bed. I stretch upwards with my hands and do 20 sit-ups, but I weaken progressively as I do each one. If it’s not good enough, it has to be repeated.

    I stretch and twist arms and hands. I do leg-raising alternately, in 20s. Never stop before 20. It’s weakness.

    There’s a method in my madness. By then I feel warm enough and awake enough to go to the bathroom for ablutions. The bathroom is cold, as the laundry it adjoins is poorly sealed and there’s a nasty wing forcing sub-zero temperature air into the bathroom.

    I need to be warm before going in there or my tremulous right arm will start shaking violently and I’ll hardly be able to wash. The hot-tap water is barely above freezing until the hot water finally gets there, but the cold water feels good on my face, and I’m secure in the knowledge that warm water will follow.

    I stand back from the doorframe and do 20 long slow pushups against it, my feet about 3/4 of a metre back from the frame. I get a very good feel for how much work each arm is doing and whether or not the right arm is cheating. The scapulae almost touch, as they should, as I do each. Triceps are re-emerging in my right arm.

    I am smarter than my right arm, see. It doesn’t get away with slacking, as it used to.

    Now I stand in the lounge room. I drag my right arm into position behind me, left hand clasping the right. My body is as much in symmetry as it can be. I stand flat on my feet; not a mean feat (hah!) these days. I slowly raise my heels as high as I can, 20 times, as balanced as possible.

    I stretch my arms upward, still clasped, 20 times, taking care to make the right one work as hard or harder than the left. I am continually remapping this activity in a part of my brain that isn’t damaged. That way I recover from seizures more quickly. At least, that’s my theory....

    I stand on the left foot and raise the ankle 10 times. That’s not hard. I then stand on the right foot and repeat the exercise. That’s a good deal harder as the ankle doesn’t get the signals as clearly from the brain – but it works. Well, if it fails, I add another lift – each failed one doesn’t count. 10 times. The ankle feels weak, but with willpower it does what it’s told.

    I stretch the right arm hard across my body and twist at the hips. 20 times. I keep the stretch of the arm, 20 deep breaths. Good for the lungs, which sometimes get wheezy.

    Nearly there. Just two more things to do. I do alternate ankle-raises making sure the knees are well involved with the process, 100 of them this time. I need this action to improve walking. It demands concentration.

    Finally, I stand balanced flat footed, and knee-bend down almost to a squat, 20 times. Good for flexibility.

    Then a mini-cool down recovery period. I stand on tiptoe as still as possible for 20 deep breaths. For me, this is very hard and I need to concentrate in order not to lose balance. I surely need that bodily balance.

    By end of this, my hips feel rubbery, as do my knees. I have to lock them into position consciously or I’ll sink. Some days are worse than others. After the seizure the night before last, I have lost about 20% of the strength and freedom I had the day before. How quickly I get it back depends on what happens in the next few days.

    This exercise routine is very important to me in every way. I do more exercise later in the day, but if there’s one thing I have learned from a chronic debilitating disease, it is how vital it is to retain as much physical strength as I can, even if it’s only in areas of the body where it’s possible and where others have to be ignored.

    And so to breakfast. But you have had enough of the first hour of my day, if you’re healthy and don’t even have to contemplate these things. I am thinking that this very simple stuff may be useful for others where their lives have suddenly and radically changed, or for those who care for them. Of course, it’s different for everyone, so check with your doctor first!


  1. Everyone has to contemplate these things, even if they don't realise that. And if they are strong now,they won't be, without paying the sort of attention you are to keeping your body functioning at its best. As the present painful twinge in my shouderblade reminds me, and the sore muscles where the physio worked on it yesterday, I have once again taken my body for granted not moved, stretched and strengthened it in the optimum way each day. (though pushing a combi van uphill in a soggy paddock may have had something to do with it too!) Your perseverence is inspirational, and the very reason you have managed that 563 (spooky, that's a weird year) days so comparatively well.

  2. Geez, move over Arnold Schwartzeneggar. And I thought I was exemplary in daily exercise. I should try the pushups against the door frame. I could use a few triceps.

    I keep wondering if Qigong would help, too, but you probably couldn't squeeze in another regime of body movement. I have a good gigong DVD. Just say the word and I'll make a copy for you.

  3. Ii the circumstances, classical Qigong would be frustrating, but what I do overall is fitting the bill. I'm waiting for nicer, non-windy days to go walking outside, but when you think about it, there are so many things that can be done indoors, adapted to what's possible for me and the damage to brain function. I do believe that I'm applying principles that work. When the problem is fundamentally neural and not something a physiotherapist can deal with purely by manipulation, the other elements need to be added by me. I think I'm fortunate to have a half century of Asian philosophy behind me to deal with some aspects of this.

  4. You're doing far better than I am. After over 40 years of involvement with this stuff -- yoga, meditation, Tai Chi, and study of Hindu, Buddhist, and Chinese texts, I am having to face up to the reality that I know very very little, and the little I feel I have grasped, is a few specks of dust on the wind.

  5. I suspect the moment we think we're doing better than average, we'll get some sort of jolt to remind us it isn't always the case. A friend of mine who occasionally reads this blog said that her experience was that when the pressure is really on (i.e., in a personal crisis) it didn't really matter what their religious or philosophical background - they still fell apart - or ended up coping - in pretty much the same way. Too big a generalisation for me to make, but I suspect there's truth in it. Some things in human programming go deeper than rational thought or even of irrational ideas.

  6. It's my understanding that it's not uncommon for people facing a major life crisis to experience an altered state of consciousness in which the situation is understood quite differently than we normally understand it. I haven't tested this on my own experience except in minor ways, and yes, I found myself in quite an altered state in which I was able to perform what seem to me now to be miracles.

    Surely, Denis, you have been tested many times over the last 560+ days.

    As for religious beliefs and philosopical approaches, I wonder if it depends on how deep the convictions or experiences go, or how deep the understand is. Perhaps sometimes these things sit on the level of the conscious mind as concepts, and they can be blown away by fairly minor events.

  7. Rather like medical conditions, things can seem very alike but simultaneously unique. I really can't imagine being able to explain much of this to anyone else. I was pleased to be able to come across the very excerpt from Arthur Koestler's autobiography _The Invisible Writing_ which puts into words exactly what you are commenting on. It's here

    though you may need to copy and paste that URL. The excerpt is short.

    I better go to bed as I can feel all the signs that I must now sleep. One way or another I will come back to this if I can.

  8. C'mon Google, I haven't finished yet.

    To start again, Koester's description is delightful. When writers talk about such experiences, they can nearly create them in the reader. When ordinary people talk or write about them, they can be muddled and vague, making it hard for the listener/reader to find the common thread amongst them all.

    The accounts I like the best usually come from heavily edited accounts, such as those in The Three Pillars of Zen, from poets such as Wordsworth, and from highly educated and articulate people such as John Wren-Lewis.

    However, I've listened and read so many accounts, that I am beginning to appreciate the uniqueness of each one and how tangled up with each personality such experiences can be. This has led some philosophers to conclude that the experiences are all different and are culturally determined and conditioned. I find two commonalities in all accounts, the main one being the loss of the sense of a limited, separate self and ego, and the other the loss of the fear of death.

  9. Koestler's description is all the more interesting as he's not a religious person, but is describing a mystical experience that religious people would describe in their terms The same experience would be looked on as different but it's only the words that would be. And yes, Wordsworth's Tintern Abbey has a beautiful description of the same thing. So I am certain that it's the philosophers who have the problem, and purely with the terminology, if the mystical state isn't confused by sensory additions, such as Joan of Arc may have added.

    Yes, all this is on my To Do list! All in good time.....

  10. That's exactly what I've always said to people about John Wren-Lewis. One of the reasons I find him so inspiring is that he was a "Richard Dawkins type" before his experience, so he didn't come with all the mystical/religious terminology. He described his state in his own words, and since he was a scientist himself, a mathematical physicist, he had a very good command of very precise language and was very eloquent.

    I hope you've had the opportunity to listen to the interview, as if you like Koestler for the reasons you say, you will like JWL.

    I believe one of the problems with the philosophers, specifically Stephen Katz, is that they have never had a non-ordinary experience themselves, have never done the necessary research into mystical experience, and know no one whom they respect who has had one, and hence they are left with pure logic alone to construct their theories.

    Certainly, in today's zietgeist when we think that consciousness is tied up with language and experience, the concept of pure consciousness makes no sense at all. This basically was Katz's position, and he was a major mover and shaker in the philosophy of mysticism. I see him lurking behind so many discussions on consciousness and mysticism.

    Enough. Enjoy JWL.


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