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Friday, August 5, 2011

A door that opens when another shuts

They say when one door closes, another opens. That may be close to the truth, but it doesn’t always happen quite that way. Sometimes you have to find the door and push it open yourself.

  It was a bit of both for me. When the brain tumour damaged the motor centre for my right side, I found that what had been a consuming passion for me was at a sudden end. My powerful and much loved video camera was now impossible for me to use. My damaged motor skills couldn't now cope with the delicate fingertip controls I'd used to film so many productions for the ADMS and the Armidale Playhouse, and in our filming business.

My first ever poster for the Musical Society
  Even the editing of the film on the computer, and the still graphics I was making constantly were suddenly beyond my physical powers, because most operations required both hands, one on the mouse and the other with keyboard controls. Getting out, carrying equipment, setting up a heavy tripod for a shoot... all those were no longer possible.

  I didn’t really think of these things when the effects of the tumour first hit. For many months, we were too engaged in the battle to put the brakes on it even to think of our former existence. But when we came home from Melbourne where I had had radiotherapy and chemo treatment, it slowly dawned on me what I had lost. 

  That was one of the biggest slaps in the face, apart, of course, from realising that the remainder of my life was going to be devoted to coping with the battle against the tumour and the vast change to lifestyle it meant for us all. For Tracey, it meant the loss of her performing and choreography for the stage productions we were part of, and the fun and fellowship of rehearsals and performance. We were both part of that team, and we devoted much of our lives to it. Then my constant seizures made it impossible, and my present medical condition still does.

Still from shooting A Night at the Opera Armidale August 2008

  BUT... what I could still do was write. Type, to be more precise, though I became restricted increasingly to the one hand I use today.

  It took some time to realise that this was an opportunity. The hours daily I had spent in graphics production or movie editing could be spent doing the other thing I always wanted to do, and that was write down stories from my past.

  I wanted to tell childhood stories, in particular. The mood changes when you write about adulthood, or the present. There’s a wonderful innocence about childhood scrapes and silliness that is much more attractive than the follies of adults.

  I discovered this when reading Clive James’s Unreliable Memoirs. They were funny and charming when he was talking about childhood, but the going got heavy as the innocence disappeared. I remember only the childhood stories.

  So the fact that I couldn’t do filming and everything associated with it opened that door which, almost certainly, I would have left closed until it was too late. In its way, it has turned out to be as satisfying (and time-consuming!) as filming, film editing and graphics creation.

  Who knows what’s good or bad? Everything is relative. Everything in this mortal existence, anyway.

  "The Taoists realized that no single concept or value could be considered absolute or superior. If being useful is beneficial, the being useless is also beneficial. The ease with which such opposites may change places is depicted in a Taoist story about a farmer whose horse ran away.

  His neighbor commiserated only to be told, "Who knows what's good or bad?" It was true. The next day the horse returned, bringing with it a drove of wild horses it had befriended in its wanderings. The neighbor came over again, this time to congratulate the farmer on his windfall. He was met with the same observation: "Who knows what is good or bad?" True this time too; the next day the farmer's son tried to mount one of the wild horses and fell off, breaking his leg. Back came the neighbor, this time with more commiserations, only to encounter for the third time the same response, "Who knows what is good or bad?" And once again the farmer's point was well taken, for the following day soldiers came by commandeering for the army and because of his injury, the son was not drafted.
  According to the Taoists, yang and yin, light and shadow, useful and useless are all different aspects of the whole, and the minute we choose one side and block out the other, we upset nature's balance. If we are to be whole and follow the way of nature, we must pursue the difficult process of embracing the opposites."
  — Connie Zweig (Meeting the Shadow)


  1. If typing ever becomes too much like hard work, you might want to try voice recognition - it's what I use for my grandfather's diary. The technology gets used to your voice so it doesn't matter what your speech is like - it learns to recognise and understand it (although mine still can't cope with my pronunciation of my 'ou' vowel sounds eg house, which I have discovered through using it are embarrassingly close to those I have always considered ridiculous when they've emerged from the mouth of Prince Charles.)

  2. I'm with zmkc, as I said in an email I wrote to you recently, Denis. So this is a double reminder to consider this technology alongside of your no doubt prodigious skills in single hand typing.

    I know Connie Zweig -- an internet friend. I have all her books, too. I met her on the Discussion List for the International Association of Jungian Studies, to which she no longer subscribes, and we discovered we had a shared past in a particular meditation movement. She went through a difficult period and found relief in Jungian analysis, later becoming a Jungian analyst herself, specialising in shadow work. Hence her reference to embracing the opposites - a Jungian goal.

    She led me to what's now become the wild and wooly place of At one point, she was working on a series of interviews about spiritual experiences, but dropped it for some reason. Rick Archer picked up the idea and really ran with it, and is becoming a very skilled interviewer, although I have my doubts about some of his subjects. It's a site worth having a look at for those who are interested in non-ordinary experiences. So that's my experience of Connie Zweig. I'm forever grateful to her.

  3. Thanks for these comments. Are you on a PC or Mac, Zoe? My most powerful computer by far, the one I use for graphics and film editing, is a Mac, but that doesn't rule out other options. (I can run Windows on the Mac simultaneously, and there's always the laptop!) What is the name of the VR program you use?
    I understand the principle well, though I have some problems. One is that I find composing by voice very difficult, as I have always been a literal person. I am still in awe of people who can dictate a letter into a Dictaphone or to another person. If you’re old enough, I’m sure you remember the difficulty of the transition from composing with a pen and paper to on-screen.
    Nowadays of course, I’d hate to go back to pen and paper. So dictation may be simply a matter of practice.
    My other problem is that as the tumour progresses, I am finding speech itself to be more difficult. No-one can yet notice the difference, but I am starting to have to make an effort to mouth the words intelligibly. If that bails up on me, or my speech changes continuously, the VR software may not be able to adapt fast enough.
    (I’d love to hear you being Bonnie Prince Charlie, Zoe!)
    Yes, Joan, I can still perform creditably with one hand. If the left goes as well, I am in very serious trouble, as that will mean the tumour has invaded the other brain hemisphere, and I don’t have to spell out the consequences of that.
    I was interested to discover you knew Connie. My reference to her was fortuitous, as I knew the ‘good or bad’ story so well – and it has always guided my life as an adult. I just wanted to find someone online who had written the story down, to save my typing. There were a few, but her additional commentary was a bonus, for which I thank her. The link to her site is in the name.
    Jung was so much influenced by the Indian and Chinese philosophies based on the unity of opposites. You know much more about him than I do, and we have discussed him several times. I guess I like to take that one step further back that gives us a straight dose of the mysticism of Hinduism, Buddhism and Daoism. The modern commentators such as those you mention on the batgap site are all windows on this form of experience. In the end though, it’s very much DIY.

  4. I might as well post here what I just said to you in an email, Denis.

    You are obviously a creative soul, and when one avenue becomes blocked for you, you simply switch to another street. Well, maybe not simply, but it happens of itself. You cannot stem the natural flow of creativity as it bubbles up in the soul. Given your situation, it's a wonderful mercy that you have something you are able to do that you love and that you are very very good at.

    However, I am distressed that you are beginning to sense difficulty with speech and are worried that the tumour might be escaping its cage.

    I have recently learned about a woman named Jill Bolte Taylor. She was a brain anatomist at Harvard until she had a severe stroke in her left hemisphere which left her with no speech, sense of ego or self boundaries, and totally at the mercy of the right hemisphere, which gave her the experience of boundless joy, loss of ego, loss of worry of past and future, total absorbtion in the "now", and an oceanic feeling of oneness with everything. Sound familiar :)?

    She spent the next 8 years recovering her speech, ability to read and communicate, but alas to the detriment of her sense of "nirvana", which was still there for her, but only if she switched off her thinking part of her brain.

    She's written a book, My Stroke of Insight, and there are several interviews with her available on YouTube, etc. I have set the wheels in motion for her to be interviewed on the Batgap site. Yes, to some extent it is a DYI project, but without others to illumine the path, we stumble in the dark; that is, if we are cognisant enough to know that there is a path. I am amazed at how others' experiences can inspire one's own DYI project, give clues as to what to do next or understand what has already happened, and give one hope that it's not open only to a very few perfect souls. As the name of the site indicates, you could have a Buddha serving at your local Gas Pump (Batgap).

    PS, I learned to use a dictaphone in one job I had. It's easy once you get the hang of it, and with voice recognition, you can edit out what you don't want.

  5. I am on a windows computer but the box says my prog works with Macs - and I think the person who first told me about it was on a Mac. It is called Dragon Naturally. The VR is learning all the time, adapting to your voice whenever you use it - at the end of each go, it asks if it can save the changes it has made. Therefore, it ought to be able to deal with your changing speech. That said, I still get cross with it a lot, especially its insulting insistence that I sound like a Sloane Ranger, which I refuse to believe in the face of all evidence (even though I know it's true). It is usually very accurate so I don't know what I don't love about it, but somehow I don't love it, even though I use it and can't deny it's good. So I'm recommending it to you, while at the same time warning you that, while using it, you may not be in transports of joy. I don't know why I'm not a total fan, given how much time it saves me - perhaps it's just that I don't like wearing a headset.

  6. Thanks, Joan – there seems to be much I want to do and too little time to do it in.

    I don’t know about being so good at it, but it is enjoyable. I re-read the last couple of stories I wrote and was amazed at how awkward to language was and how poorly a lot of it flowed. It made me realise how much stricter the discipline I would have to impose if I were trying to do it professionally. Lucky that’s not so, for it would change everything. I found that when filming. Once it became work where the client dictated the play, then it wasn’t nearly so enjoyable. (Rather like your Dead White Men sculptures - pay well, but not very inspiring!)

    The Avastin we’ve always known would simply extend life, though we do everything we can to assist the agents that limit the expansion. It has filaments that travel neural pathways and though it won’t be evident for some time, we can expect a sudden surge of tumour activity at some time. No-one knows when that will be. Thus the first warnings about speech are ominous as that’s the next motor centre on. Unfortunately the cage analogy doesn’t hold except for where the main tumour-remains and necrotic tissue left over from radiation are located. Avastin has done well to keep control for this long.

    A stroke has similarities in its effect though not in the cause or the progression. The case of JBT is fascinating, though I wonder what impact her ‘release’ from all boundaries had on those caring for her. I realise this isn’t the same as dementia but the parallels are there. As a friend said about his father:
    “….a ‘golden dementia’ in which he was having an absolutely lovely time; everything around him was utter chaos, but, hey, things were great for him.”
    I’d be happy with that, if it wasn’t so hard on family, and it would be. But with JBT, she had the opportunity to recover, very well, as a stroke can be one-off, and she obviously did. She had to exchange the pure freedom for responsibility, and clearly she recognised the value of the tradeoff if she were going to be a socially functioning human being again.

    When I said about the DYI project, I was referring to everyone’s life, as you’ve seen – that’s each person’s DIY! But others’ role in explaining how they view things through their windows make a huge difference, like reading every available version of a Daodejing translation if you don’t understand the Chinese characters.

    I think you’re right about the Dictaphone but you know me – I only do these things when I have to!

    Zoe: thanks very much for the information about Dragon Naturally. I’ve checked it out. Looks like about $250 worth, which is too much for me to consider now, though depending on how things go I might be willing to come back to that. I think you’re right that it could deal with changing speech as long as the change wasn’t dramatic. Sometimes we have negative reactions to things that are not very rational, but I understand exactly what you’re saying. It’s like that for me skyping. Headphones are best for the sound, but I look like a berk.

    Like most things, you adjust. I suppose always in the back of my mind is that a dramatic change could happen at any time – with a clot getting to the wrong place to further complicate seizures, e.g., and that thinking can easily eat away at the positivity. It’s tough when you work to improve bodily coordination and find that a 2 min seizure undoes most of the advances you’ve made.

  7. If I'm ever up your way, I'll bring the Dragon disk and headset along and see if it can be set up on your computer, so that you can have a try. Hateful, vile disease. But you seem to be doing a brilliant job, beating its dirty game by continuing to live your life as much as you possibly can despite its best efforts to spoil everything. Go away horrible tumour, you're not wanted. Shove off.

  8. I've been away and haven't caught up with some of your most recent postings, Denis, but I have read a bit of it and sense no deterioration. You are probaby improving and hence getting fussier. I know this feeling.

    I am about to find out about Jill Bolte Taylor's carers, as a friend of mine in the US has just mailed me her book. It's worth listening to her interview as it might give you some hope that not all is lost if the tumour invades your language centre

    I don't know how to make a live link on this blog, but it's easy to find the interview and download it or listen to it online.

    I know you're not going to get better, but Jill's interview provides another dimension of possibilities to the life of the mind even after a debilitating brain injury.

    Battery going flat. Must send now.

  9. Thanks, Zoe. You are welcome at any time. If it weren't for Tracey I couldn't possibly have survived this long. Some friends have been extraordinarily supportive. We deal with it with as much intelligence and positivity as we can.
    Thanks Joan also. The deterioration that we know about doesn't show up in writing too much as this is one thing that I can tailor to the time available. But the cost of both physical and mental activity on my system increases day by day, with energy also drawn away to fight the tumour growth and its wastes. I take longer and longer to recover from any form of activity. If I sleep longer, then what I want to do is compacted into less time. In fact, there isn't enough. Still, all activity is a matter of priority, though that gets interfered with by the short-term memory loss. Tracey is becoming my memory as well as everything else she does, except for blog writing!
    I want to write with more clarity about the effects of all this as a blog piece, as it is easy to get the wrong impression from my writing at times. Tracey's picture, if she were to write it candidly, would provide some other insights. I wonder if family and friends are as ready to face these as we are.

  10. The face you have always presented to me is of unutterable strength. You always appear and sound so well, that I always have to remind myself that you have this growing tumour. It doesn't show, and I know it's going to be a shock if and when I get to see what is actually going on.

  11. I don't know about strength, but I do know how much of a team effort it is. When I'm just sitting comfortably, you wouldn't see much difference, apart from the chipmunk cheeks. It's when I have to move that you will notice it most. Visibly, and when I talk, you shouldn't see a lot that looks strange to you, in my present condition. Strength is something I draw from those around me, especially Tracey.

  12. A thousand cheers for Tracey and all good wishes to you.


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