We love hearing the inspiring personal stories of our clients and supporters. Luce Hanley is a wonderful contributor to the community, offering her humour, wisdom and compassion to all she crosses paths with. Her remarkable capacity to articulate the experience of living with chronic illness makes this a truly insightful read. If you'd like to share your story please get in touch via [email protected]
WALKING THE BRIDGE
Shall we go...?
First up: You are my reader, yes? I love that. Writing ideas to be interpreted by others, no matter we are unknown to each other, feels warming, as if we're connecting. Sharing somehow.
Neuroscience researchers, with the aid of modern technology able to explore our brains in detail, believe there is a connection. While writing, the thinking process influences learning/emotional neurons in the author's brain. Likewise, as their eyes follow the print and interpret it, the reader's neurons make responsive changes in their brains. A silent interaction. The neuro people call it 'shadow activity'.
As a result of the above, our bodies can be notably affected too. While researching in a library many years ago I began sweating and trembling because of what I was learning. (Trust me: Make a point of not looking up crocodile behavior!)
Here's another more subtle example of mind effecting body: What if exercising is part of our pledge to help heal ourselves? Perhaps too weak to do much, you and I sit down to watch a yoga class, focusing on the movements of the teacher. If we maintain a clear image of the movements, our brains will send messages which enable our bodies, at a very subtle level, to repeat the movements. We might feel a slight twitch or two in a muscle yet no one watching us could tell. With this muscle reinforcement, our weak bodies over time will gather enough strength to join in the class - to increasingly 'act out' the movements with the rest of them.
An example, well proven. Interesting, don't you think?
Want to prove it for yourself? Lie down, relax your body as much as you can. Slowly, without moving your limbs, imagine softening your toes, feet, ankles, and so on up to the crown of your head. With practice you are likely to feel a vague sensation - a slight prickling, or subtle buzzing coming through the limb you are guiding.
Got it? That's it! Encouraging...
Those of us with intense fatigue, from whatever cause, might feel sometimes that going on living is no longer tolerable - for ourselves or for the sake of our families. A reader of the above title might think the subtitle of this discussion should be 'Or Jumping Off.' You and I may know of people with chronic and debilitating illnesses who have done just that.
Day after day trying to live a frightening half-life (for some it is less than half), many of us experience, or have experienced, the fear of the physical/mental/emotional feeling that drains our whole being; the fear of where it will lead; the fear of dying without ever again walking the earth breathing in the companionable air of work, social and family life as other people do.
Yes, well...high bridges...suicide...tempting sometimes, even for those whose illnesses or life problems are temporary. I like the Roman philosopher Seneca's idea: Begin at once to live, and count each day as a separate life.
The stories below are about walking over the bridge. Today. Let's walk together, eh?
Do you recall what you learned most from in childhood? We learn lots of stuff at primary school, don't we? Not just reading and writing. The other kids are what really matters I remember.
In my first school year, during one long, dry summer, an Aboriginal girl with two bunches of her hair tied up with string, came in from the lonely parched wheat belt of Western Australia to start her new life with us. Her name was Gabby. One nasty boy called out 'Grubby' when he heard the principal introduce her - and got a swipe over the head with the principal's open hand.
One of Gabby's legs was wonky. The rest of us stopped our play her first day to watch as she dragged it along, coming towards us along a track emerging from the bush over the wooden bridge - the loose planks echoing with her awkward gait - toward our one-room school. It was soon obvious that she couldn't play in our games. She was always behind. Too slow. Back then, I still remember, I could see the sadness in her dark brown eyes.
It must have been a month or so later that Gabby was late for school. I heard her leg scraping the timbers of the bridge. Through the schoolroom window I watched her as she stopped and then struggled to climb the railings of the bridge. She paused, hands free, right at the top and looked over. There was something about the stoop of her shoulders and her stillness that scared me. I stood up to tell the teacher but at that moment Gabby backed down, half fell onto the cracking timbers and came on.
I never asked him, but I think Matt saw her on the bridge that day too although he was sitting over the other side of the classroom. Spikey red hair, skinny, he was taller than the rest of us, and he noticed things. He could always see where a lost ball had hidden itself in the bush. He walked over to Gabby at morning play time, ignoring the scoffing of his mates, and started teaching her that she could join in. He drew a hop-scotch outline in the dirt with a twig. By holding her arm as she hopped, he taught her how to balance. After a week she could hop on her own.
She could play!
Not long after, another boy joined in with Matt and Gabby. Shy, wearing crooked glasses which kept falling off, he didn't mind when the other two laughed at his balancing efforts. Then another girl, curly blonde-haired, called Bossy Betty, said she wanted a try. Matt re-created the game so that each player had to invent some handicap. A leg like Gabby's; a blindfold over one eye; both arms tied
behind their back... A younger kid who joined in bound his legs together and fell over more often than not!
Thanks to Betty bossing the principal the new team was allowed to have competing hop-scotch teams on sports day. As the saying goes, there is more than one path up the mountain. Sports day, with parents and two far-flung schools coming to compete, was an awesome mountain then and Gabby made it to the top.
As we grew bigger, the principal suggested that Gabby teach us all bush-lore: To rub sticks together to light fires; which berries were safe to eat; how to follow animal tracks that the rest of us could barely see; which grubs we could swallow. Urgh!
Long after we had left school behind, I met Betty by chance in a coffee shop. She told me that Gabby was a high-school teacher - one of the first Aboriginal teachers in the West. And Matt was out in the bush again. A qualified naturalist.
Someone like me, who has lived with chronic fatigue syndrome for some time, might be considered experienced, don't you think? Well maybe... What I can tell you is why I haven't jumped off a bridge.
If, as you read on, thoughts of despair:/ haven't got the energy/I'm too depressed, bank up in your head, that's understandable. All the same, read on when you can. There might be something in it for you.
My first 'secret' to help with healing, while not a cure, was finding what rose to the surface of my mind above the losses of 'normal' hoped-for experiences.
Above all the grief, fear, anger, guilt, and the resentment that medical specialists couldn't find solutions.
My intuitive search for help resulted in mentally exploring in more energy-alert moments what one thing I could feel good about while being or doing it. What passion could I get back into my dismal life? Seneca helped me again: Hang on to your youthful enthusiasms - you'll be able to use them better when you're older.
So, much older, I began writing again. Not writing better perhaps but never more needed. After the desolation I had felt for so long about having to give up writing full-length works, and then even daily diary writing, I was triggered into a 'what if 1...7' by a friend who told me the following from Robert Dessaix's book What Days Are For.
Robert was lying in an ambulance one late afternoon, in and out of consciousness, while paramedics determined on saving his life after a heart attack. Out of the blue, a disembodied voice working over him asked gently, So, tell me Robert.
Have you had a good day? What?!! Robert could hardly believe his ears. Then,
as images simmered through his fogginess, he croaked, you know, I have. I've had a very good day. And he began visualizing the good things that had been part of his day: walking his dog in the morning by sparkling waves on a beach in Tasmania, reading the script of his first play in the sun...Well that's wonderful, said the paramedic. That's what matters.
Dessaix does a lot of thinking and writing about what days are for from that experience with the paramedic. He concludes his book with the thought, pertinent for we who live with chronic fatigue or depression, that happiness is learning to desire only what we can have. It's knowing what to do with the mental, emotional, physical, spiritual freedom that we do have. That isn't necessarily our idea of what bliss is, of course, but it is happiness.
I know of a man with devastating fatigue, a former dedicated athlete. He spent most of his time in a propped-up lying position until one day he found another passion: He began drawing cartoons on a raised book-rest. Simple line drawings. He has said that when he wakes up in the morning he feels excited about what he will draw next. And during the day when he needs to doze he thinks about what he has drawn already that day.
How did Norm get to that space in his head? He was given one of Michael Leunig's early collection of cartoons. You may have seen some of them. They are simple and clever. The once athlete was inspired. Inspiration led to aspiration.
Aspiration led to self-discipline. Self-discipline led to dedication. Eventually he developed his own style and made topical collections of his drawings to give to
friends who passed them on to their friends and families. He found his passion. Norm still has some chronic fatigue, I am told, but he feels good, he says. Really good.
The important thing for me was re-kindling my former passion in writing with a whole new attitude. An attitude it took me a long time to grow. I had to learn how to surrender re-living my past involvements with publication. Let go entirely what was once a draining ambition and the pushing myself on to reach distant goals. I learned to move one calm (but often invigorating) step at a time. Most days jotting a few notes, writing a paragraph, enjoying times of renewed ability for creative thought... replacing the agony of living a stunted life as I saw it, with the sheer joy of writing on top of my diary, So Luce, have you had a good day?
And writing underneath: Yes, I have had a good day. I spent time with my passion. And adding a few notes about what I had created.
I look after my physical health- good nutrition, gentle exercise, frequent rests, and I have said goodbye to making my bed and toiling in the kitchen until they look 'just right' as I once thought they must. I have said goodbye to social commitments that fritter away my energy. I keep my living style simple to free up more vitality. I treasure beyond all material price, all conditioned cultural commitment, my precious time being me, doing what I love.
Got energy-time for one more story? This is about another friend. Sally has Irritable Bowel Syndrome and its accompanying chronic fatigue. She makes, at her own pace, short patchwork bed spreads which she gives to a charity for children. Sally beautifully illustrates how we who limp along can contribute to the world in ways that we never hear feedback about. Happily Sally heard comment about this one.
In one children's home to which the charity gives help, there is a young boy who, protecting himself from the pain of his situation, acts out in bolshie ways what he says and what he does. When one of the care staff came to him and handed out a gaily coloured rug for his bed that Sally had made, he asked, belligerently: Is that for ME? Yes, he was told. A lady made it and brought it in for you. Silence. Then: Well!! Said the boy, in a tone now more gruff than aggressive: She sure must love
me/ And he took the rug and hugged it to him. Sally has heard reports that he frequently carries it around while occupied with organized activities.
There is hope for all of us. In my case, though I still have fatigue problems they are much less because I no longer dwell in a former inner place of despair. I no longer beat myself up about what I can't do, or as bad, push myself through fatigue into exhaustion. My body is responding. I can feel the stir, again - not of cure necessarily - but of healing and slowly increasing energy. When depleting thoughts bring me down now I give them only a few minutes of recognition before I deliberately begin to think about what creative ideas might be ahead of me.
What do you think? Is there a life worth living with chronic fatigue? Can we begin, if we haven't already, to explore our experiences, past or present, to find an inner pulse of imagination? What profundity of thought or nonsense can we concoct and wiggle around until we come up with our passion? Model animals out of clay and paint them with funny faces to amuse our neighbour's kids? Why not? Get into maps of other countries, think about their culture and plan in detail a long holiday for when we are able?
Let's alter our sense of defeat to 'one day I will be able to travel or take on more of the life I want'. Fantasy? Remember how clever neurans are? Remember what we have learned about the influence of our neurons, our minds, on our bodies? Go for it, I reckon. One more interesting Seneca Day after another...
Some family members and others may think we are malingerers or hypochondriacs when they see us lying about. Probably only another person with chronic fatigue will understand that in this conversation we need not spare a moment's thought on the critics. They are suggesting 'Get off your bottom and DO something'. What we are talking about, I believe, is 'go gently, gently, and be our creative selves in this moment and perhaps the next.' 'Being' before doing, until doing does itself.
I think it was Charles Darwin who said that it's not the strongest and fittest that survive, and survive well, but the most adaptable. Pursuing a passion can help us do that.
Here's an inviting quote: Do what makes your heart sing. Sound good? Let's do it! 'Ave a go, as Aussies say. Far too many people have healed their lives from all kinds of disabilities and disasters for you and I to dare dismiss hope as fruitless.
And the extraordinary thing is - take Twentieth Century deaf-blind humanitarian Helen Keller, or even a member of your own family as examples - the fruit we grow is frequently picked by others to sustain themselves, and so on down generations.
Thank you, Reader, for your part in our conversation. The best of good wishes as you journey up your mountain.