Welcome to the blog of Suchita Vanessa Smith!

I was inspired to share my rich journey of living with the challenges and blessings of Pseudoachondroplasia (a condition with malformed joints afflicted by arthritis and dwarfism) when Ben, the son of a good friend, was diagnosed with a debilitating condition at the age of twenty. Immediately I felt a strong urge to share with him the vital insights I have learnt that have helped me find inner peace, good health and to live a full life.  And the chapters of a book came to me.  So I am writing my book “Little Body Huge Life” and while I continue editing, it is time to share some of it with the world.

Everyone I know has issues with their bodies, mine are just more obvious. Most people do not have a positive relationship with their body, whether it is weight issues, illness, disability or injury. Many who are blessed with a ‘normal’ healthy body just don’t like it or parts of it and they treat it accordingly. Many abuse their body by not taking proper care of it; by not eating well, not exercising enough and imbibing too many toxic substances and then are prone to illnesses, pain or decreased capacity in later life. This has bigger ramifications; as we treat our bodies so we treat mother earth.

With a degenerative condition hanging over me all my life I have had a strong motivation to take good care of my body, keeping it fit and healthy, to stave off the deterioration and a frightening future. What has helped the most has been a profound journey of coming to love and accept myself and the body I was born with, and a deeper journey of the spirit, of getting in touch with that vast part of me which is not the body. Living with the paradox ‘I am not the body but I am’ sums up my journey of taking good care of my body as well as connecting with my inner divine spirit that is untouched by any of my body issues. If I can learn to love and accept my less than perfect body, and myself, then you can too.

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Hit a Brick Wall, Turn Left

When my speech first started deteriorating in early 2005, I hoped it was a temporary glitch and I had no idea that within four years I would lose most of my voice and clear speech. While I was managing to live a full life despite my bad joints, the growth of a bone spur in my neck impinging on the nerves of my tongue and vocal cords came out of left field. It meant that I could no longer continue with the career I loved, producing and presenting my radio show, Full Circle on RTRFM, exploring consciousness, spirituality and wellbeing. For fifteen years I felt like I was doing what I was born to do, and so I thought I would be continuing for a very long time.  But it was not to be.


Then my voice suddenly got much worse in all the stress of my fracture sagas and I was left with just a whisper.  During my long rehabilitation I was asking the same question I asked when I leapt off the cliff from my environmental science career. “What now? What work could I be doing next? What else could I be doing with my life?”  Writing this book was part of the answer but I needed to create an income in a new way somehow, within my new set of limitations of a reduced voice and little mobility.  I was basically unemployable, but I didn’t want to ‘retire’ at age fifty, defeated by my new limitations. I wanted to continue to contribute to my community and make an income through my own enterprise.  There is nothing limited in my mind, my awareness or technical skills, and so I kept with the question of “What else can I do?”

Then my ninety one year old father died suddenly, and I offered to make a slideshow for the funeral. I found that all the skills I had learnt from fifteen years in the media – audio editing and mixing, Photoshop and video editing – all came together to produce a tribute to my father. It was such a powerful thing to do, to channel my grief into doing something sacred that honoured him, and do justice to the man he was. We chose Beethoven’s Pastoral Symphony to go with the photos and video, given he loved classical music and nature, which lifted the slideshow into a touching, moving experience. It added a whole other dimension to the funeral service, and brought to life the eulogy my sister gave, and conveyed what words could not.  It also gave space for reflection and remembering at such an important time.

I showed the slideshow to my friend Gitika who said “You know, you could make a business out of this.  When my mother died I would have loved to have had someone make something special like this for her.” I was dismissive of the idea at first, uncomfortable about making money from people’s grief. But when I kept asking “What can I do to make a living?” the idea wouldn’t go away, especially when I realized slideshows can be used for any special occasion (birthdays, weddings, anniversaries) and events and business promotion on websites and Facebook.

The more I thought about it, the more it seemed perfect for me. I could do it from the comfort of home, sitting at my computer, and it is sacred and creative work, which is what I like to do the most. There is a sense of rightness, that it is a culmination of many of the skills I learnt over the past fifteen years, so it has some poetic justice about it, and it feels like the idea was blessed by my father.


So I developed a business called Celebrate a Life on DVD.  It doesn’t take long for people to get used to my speech, which is improving with the help of Speech Pathologists, and they are mostly able to understand me.  Even though I lose a few customers from our first phone call, I have many happy customers both from Perth Western Australia where I live, and around the world. The slideshows unfailingly add a moving experience to any occasion, where people laugh and cry, and share the life story of someone they care about.  It is rewarding work.

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Hitting a brick wall of an obstacle doesn’t mean a dead end, it means we just have to think laterally and we may be surprised at what new direction will unfold.



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Blessings from Obstacles and Challenges – Discovering My Own Hydro-Yoga

In the midst of hard times unexpected blessings often appear, and they are all the sweeter because they bring light into the difficulties.  After my fractured knee, its replacement and then fractured femur saga, resulting in ten weeks in hospital, I had to learn to walk again.  It was months before I could return to swimming, so my only option was hydrotherapy, with Kevin my long time Orthopaedic Physiotherapist.  I worked on my overall fitness after being immobile for so long, coercing my stiff knee to bend, building up the faded leg muscles that had been diminished from weeks of no use and learning how to walk as normally as possible.  For the first few months, until I could drive myself, I was reliant on a community transport service and my three times a week didn’t feel enough. I made the most of those visits and worked hard in my one hour with plenty of walking, kicking and toning exercises.

One day after a couple of months when I entered the pool I realized I was deeply weary.  While a sign of improvement, of becoming stronger, because I was able to be more active, I easily overdid it.  I felt aches all over with many of tight spots, especially in my neck.  Too tired to launch into my usual vigorous walking, instead I listened to what was needed, to stop.  With my shoulders supported by the railing in my favourite corner at the shallow end, I closed my eyes and let my body hang.  Ahhhh!  I let out a big sigh.  It felt so good just to rest and be suspended in the warm water, when everything felt like such an effort. After a while of blissful hanging, the sore bits were crying out, needing some relief.  As I tuned into them, I responded with small twists of my torso, while stretching a leg, one way and then the other, gently and slowly.  After so much physical hardship suddenly my body felt really good.  The experience felt like a wonderful tonic, nourishing and revitalizing of both body and spirit, but at the same time difficult as I came face to face with uncomfortable spots which were not easily silenced.  I was pleased later when I felt some relief in my recalcitrant neck, it wasn’t so sore. What a revelation, not only did it feel wonderful, it had already had a powerful effect.  Here was a whole new level of self care.

I was excited when next in the pool, to explore further, and I took time to hang, twist, stretch, breathe and experiment with the possibilities before I progressed into the more serious exercising.  As I slowly twisted my hips, there came a gentle satisfying clunk in my neck, and a little tension relieved, but not from any pressure pushing my neck, but as a by-product of the stretch of the hips. Then an extended stretch from my hips to my toes, awakening muscles long unnoticed, in my buttocks and down my legs, allowing new options for how I stand and move. It felt sensual and deeply respectful of the innate wisdom of my body to do these new movements.


What came out of this is what I call my own personal ‘hydro-yoga’, a slow release of tight spots that has had long term benefits.  Prior to this, I was beginning to think that I was just going to have to get used to discomfort in my neck and more headaches.  It was probably an aging thing.  But after a few months of regular hydro-yoga, the ‘aging thing’ reversed and the pain eased.  My neck is still tight, but I have been able to stave off most of the intense stuff, headaches are now rare, and so live more comfortably.  I love that my hydro-yoga is not something I am reliant on anyone else to help me with.  It is my own intimate exploration with my body, of subtle moves that have a big effect.  It adds to my reservoir of engendering feeling positive about my body, loving it, tuning in.   I continue to this day, and I have added more fun and joy with a waterproof mp3 player, so now I dance, groove and stretch to music.  I would not have discovered this wonderful new therapy if I hadn’t had all the misfortune that landed me back at hydrotherapy, and it is a blessing in my life.

I call it a kind of yoga, with its long slow stretching and breathing, which reminds me of the yoga I attempted in my twenties.  I was keen to try because it is a body-based spiritual path, to see if it could be helpful.  My first attempts didn’t go well, I wasn’t able to do the positions properly and it felt too hard.  I came out feeling excluded and frustrated at yet another limitation and mightily discouraged, so gave up.

I tried again about a year later with the encouragement of American Sandesh, who was teaching yoga in Fremantle.  It was quite a different experience, which is a credit to his skill as a teacher.  Instead of leaving me to try to work out how to do a position, and feeling like I was an extra burden, as the first teacher had, Sandesh said “Let me first see to the others and then I will come to you.”  Then we worked out together how I could best adapt the posture for my capabilities, then he would keep checking back in.  So the whole time he included me, and never made me feel I was a hassle, in fact he seemed happy to have me in the class.  That inclusion made all the difference, encouraging me to persevere.


Mostly I could only manage a poor adaptation of a pose.  I wondered if I was getting any benefit from only doing half the posture.  Often I pushed too much trying to achieve a semblance of what everyone else was doing, and ended up in pain.  I came out of the class keenly feeling the lesser ability of my body, and my issues of differentness and exclusion arose. I also felt some resentment at these fellow students taking for granted their flexibility, being able to do so easily what I could not. It upset me to confront again and again what I couldn’t do, and I often ended up feeling dejected and discouraged. One day I got to the stage of again feeling frustration at only being able to do a fraction of a posture, and how wrong it felt to try to push my body into positions it didn’t like, and compromise a pose so much there seemed little point doing it. I decided, despite Sandesh’s patient and sensitive teaching, that yoga was not my path.  I didn’t need all the negatives associated with it. I gave it my best shot with a really good teacher, and if couldn’t do it with him, I couldn’t full stop, so was able to leave it with no regrets.

Twenty five years later I’ve evolved my own personal yoga in water that works for me.  It’s not complicated or extensive in range, just simple slow twisting and stretching that helps loosen my tight muscles and tissues, and this has meant less pain and greater ease. It feels like a miracle, helping me reverse some effects of aging on my joints.

EXTRA NOTE  I decided it was a good time to post this latest addition to my blog because on January 24 2018, Sandesh, now Sam Weinstein, passed away suddenly.  After my classes with him he went on to run the Home of Yoga School and the Family Nurturing Centre with his wife Sydel.  The profound effects they have had were obvious at his death celebration when hundreds of his community gathered to grieve his loss, and honour and celebrate him.  One person can make a huge positive difference.


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Wheelchair for Travelling – Acceptance is the Path to Inner Peace

By the time I was at the end of my ten month trip around Asia, when I was thirty one, having to walk distances with luggage at airports and stand for long periods in customs and check in queues, were making travelling an ordeal.  I’d end up in agony and devastatingly exhausted, and I still had to get transport, sort out my accommodation and eat, while dealing with the challenges of being in a strange new place.  The alternative however was to go ‘wheelchair assist’ and I resisted this as long as I could. Similar to how I saw getting a walking stick, having to use a wheelchair was crossing another line towards an outward acknowledgement of my disability I did not want to cross (see Taman ). Even if it was only in airports, I did not want to be seen in a wheelchair.  I felt there was a stigma to it in others’ eyes, and my pride would not let me go there.  I couldn’t accept what felt like an unacceptable option.

Three months later I had resigned from my Environmental Science job and was about to head off to the Poona ashram again.  I began dreading the journey, I couldn’t bear to go through the hardships of so much standing and walking. I had to face the fact that I couldn’t travel as I had, in fact I could not keep travelling if I did not use a wheelchair.  I saw I had no choice. Coming to the point of no choice often helps us move through our denial and pride. Oh the relief when I finally accepted this was what I needed to do and I gave it a go.  A whole new world of easy airport travel opened up, and as a bonus it was wonderful to be met by a lovely helpful person.  They wheeled me past all the queues, presented my documents and money if needed, they hauled my luggage off the conveyor belts, and onto a trolley and then took me out to my transport. I was through in thirty minutes.  No stress, no pain and no ordeal.

It was weird the first time being in a wheelchair in a very public place. I didn’t feel I belonged because I could still walk, like I was an impostor. As we zipped along I felt more stares than usual, though that could have been my imagination.  But then I thought “These are not people I know. What does it matter what they think?” Especially when I was experiencing the benefits of breezing through the airport effortlessly, to get caught up with what strangers thought, seemed silly and irrelevant.  Dented pride was a small price to pay for the liberation in the ease of travelling.

And I discovered there are some advantages to having a disability.  All those travellers stuck in queues for hours at an airport, and I sailed past them and was out into my transport before they had reached the front of their first queue. “Ha ha! Take that all you able bodied people, I’m cruising here.” I thought to myself.

This was an important breakthrough because it opened the door to being able to continue to travel, even on my own. If only I had accepted the reality earlier I would have saved myself much suffering.  Like many of us, my stubbornness, denial and pride have cost me a lot in my life, whereas acceptance has given me everything.


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State of Mind – Attitudes and Choices

The Power of Persistence

I’ve learnt valuable lessons about the power of persistence. If we want to fulfill our goals and make changes in our life we need persistence.

I was driving to interview a meditation teacher from New Zealand for my radio program Full Circle, feeling tired after ten years struggling to produce a weekly two hour radio show on my own with no money.  Listening to an interview on the radio, with an author of a book about the secrets of success, the question was “What is the single most important ingredient for success?”. I was thinking “A great idea, passion, vision etc.” and was surprised when he answered “Persistence”.  The best idea or talent in the world is not much use if we don’t persist in developing them, whatever the challenges. Because of one thing we can be certain, there will be obstacles in the way. Often we hear speakers extolling the virtues of following our dreams, yet I rarely hear mentioned the need for determination and hard work to overcome the barriers that will inevitably arise.  It felt like a message for me at just the right time, and it gave me the impetus to continue with my crazy life of following my bliss despite the challenges.

About a year after my knee and femur fractures I tried walking to the beach, and by the time I reached the water I was tired and in pain, and in no fit state to have much of a swim.  With disappointment I figured that my days of ocean swimming were probably over.  I was deeply saddened, given that the sea has been one of the joys of my life, all my life.



Meanwhile I continued to swim at the local pool four times a week, plus hydrotherapy and working on my walking technique and changing habits with Julie my Feldenkrais practitioner.  One of my main focuses was building up the strength of my legs.  I kicked many miles of the pool, working the injured leg with its wasted muscles, with the aim of achieving the best my body could be, whatever that might be. During summer a few years later I gave going to the beach a go, at the encouragement of my two regular beach and coffee buddies Nirmala and Niyati.  To my delight I was able to manage it all, even the walk up hill on sand, without needing assistance.  There were no ill effects, no pain, no fatigue and so many positives from swimming in the ocean and enjoying coffee and catching up with my wise, fun friends.  I was amazed at how far I’d come.  My persistent effort over four years enabled me to wind back my degeneration clock and, rather than keeping going downhill physically as would be expected as I age, I improved.  It is about persisting every day, whether we see results or not, but just keeping going.


More recently, since having my second knee replacement and hip revision surgeries, I have been working on changing my twenty year habit of bending over from the hips, after my surgeon freed up tight groin tissue. I am able now to stand straight with some effort, but if I am tired or not paying attention, I regress to my old posture.  Every time I’m in the pool I am practising standing straight and that transfers to remembering during my day. I know it will take time to make this change, so I just keep at it, encouraged by my lessons in persistence.

Then I had another breakthrough at hydrotherapy when several different exercises I’ve been doing for months came together to create something new.  Tina Turner was playing on the sound system, louder than the usual background level, and when an old favourite ‘Nutbush City Limits’ came on.  I just had to dance in the freedom of the water.  I was in heaven, as all the years of not being free to dance disappeared.  While I couldn’t get too carried away in the class, I found a rhythm in a kind of walking/dancing/twisting.  Somehow I started using the muscles on the back of my legs in a new way. I kept going for the whole song, exploring this novel way of moving.  While I’ve been using my back thigh muscles for kicking for many years, I didn’t know I wasn’t engaging them in walking.  But when I experimented out of the water, suddenly I had at least double more power in my propulsion.  It has made a huge difference in my life, I am able to walk further, freeing me from some limitations.  It is a miracle as a result of a brilliant surgeon, persistence and Tina Turner. I am overjoyed.  Persistence is a great power


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Our Spirit Can Soar Wherever We Are

A major turning point, at age twenty four, in my journey of dealing with my deteriorating physical capacity brought me to experience a significant realization.  I don’t need to go anywhere, do anything and I can feel my essence. I can come home to myself and feel contented just sitting and being anywhere.  Our spirit can soar wherever we are, and doesn’t need to be dependent on anything on the outside.  Of course if we happen to be in a beautiful natural landscape, then coming home is all the easier.  When you can no longer go anywhere you want, this is an important realization.  It changed how I dealt with being able to do less and less.

I was in the jarrah forest for the weekend, outside the small timber town of Dwellingup, with a few friends having a reunion of sorts.  Ray, Dave and I had met one memorable night at The Loaded Dog tavern in Northbridge close to Perth city, a few years previously.  The Loaded Dog was a small intimate venue with live music and a dynamic Sunday session which attracted an interesting mix of alternative types of people.  My university friend Sue and I were regulars. Ray was a good looking man with long dark hair, warm wise blue eyes, a gorgeous smile and a look of a native American about him.  Dave was a funny, crazy New Zealander, with long curly blond hair and beard with bright blue sparkling eyes that would often bulge in humour.  Sue and Ray were seated on bar stools next to each other and starting chatting, and we all hit it off.  We laughed and laughed together as we progressed to the local food hall for some tasty Indian food for dinner.  Things might have ended there but Sue’s attraction to Ray meant she was keen to accept their invitation to come and stay with them at the modest riverside home they shared near Mandurah.  From that meeting came lasting, life changing friendships.  We joked these are our only friendships that ever came from meeting at a bar.

A few years later Dave had moved to a bush block with a Nissan hut converted into a small cosy home.  Ray and I, and his new partner Naveena, had been seeing each other in Fremantle, but none of us had seen Dave for about a year.


We arrived late Friday afternoon and after a night full of partying, laughter and fun, the next morning after a leisurely breakfast, Dave was keen to show us his land.  We all loved being in nature and sharing it with each other so we were keen to explore the surrounding forest.  It was a beautiful, balmy spring day.  I started out in high spirits, happy to be hanging out with good friends in the forest.  But it turned out to be difficult terrain.   We went up and down paths on quite steep slopes, often covered in gravel, which made it slippery and hazardous as we wove out way through trees and wildflowers.  From the time we headed off, I had to keep watching the ground, so I didn’t slip on the gravel slopes, or trip over the many possible hazards, and navigate safely.  I was given a hand up and down the slopes but they were still a real stretch.  In natural areas I am always navigating my way with a keen eye on the easiest route, up this step or smaller slope or around this tree and also watching out for any logs or rocks of the right height for stopping for a sit.  This time I only found one sitting spot, a wobbly bank of gravel.  I started feeling pain in my hips and legs about four hundred metres in, and then came the tiredness.  All of my attention after half an hour was on my aches, and then my focus became making it back to the house as best I could, step by step.  I wearily slumped into a chair when we arrived back, feeling a deep pain in my hips, legs and lower back.  I kept it all to myself, I didn’t share with my friends how tough it had been but Ray years later told me they could see.

When finally the pain had subsided some, I realized I hadn’t been able to appreciate or imbibe the forest.  In fact I had missed it, because all of my focus was on looking at the ground, and the aches and just getting through the walk.  This was another of those times when I pushed myself beyond my new limits, and suffered the consequence of pain and terrible fatigue.  These were at a level that grabbed my attention.  They jolted me into realizing ’Ah, I can’t do that kind of walking anymore, it is too much for me, it’s too hard, this is a new limit”.  In what became a repeating experience when I dramatically hit my limits over the proceeding years, I realized I would have to be more careful what I got myself into and not go blindly into terrain that was now beyond me (see also Misadventure in Gilli Nanguu).  Then came sadness at what this new limit meant, that more wild places were now impossible for me to access.

The next day when everyone else was heading out for another walk, I opted to stay on Dave’s verandah.  No more physical endurance battles for me that weekend.  I decided I would sit instead in comfort, on a big old lounge chair on the wooden verandah with my feet up, and enjoy the view of the forest from there, and that would have to be enough. For a while I felt keenly this new limitation that meant I had to stay behind, missing out on whatever adventures my friends were having together. Like most of us, I hate missing out.  All the feelings I felt as a teenager came back, frustration at my limitation, anger at the injustice of it and I had some resentment at the ease with which my friends could do whatever they wanted.  At the centre of it all was grief at this new loss merging with all my other losses. But I was also pleased that I was looking after myself, and choosing to be gentle rather than pushing myself again.


Then the power of nature started weaving its magic within me, with the sounds of the birds and wind in the trees.  After about half an hour the turning point came. I discovered the well of plenty lying in what could appear to be misfortune. I began to see more of what was around me, and so my attention was diverted from ‘poor me’. There was so much to look at and enjoy.  The forest, along with other five acre properties, had been logged many times but it was still rich with many jarrah and marri trees, birds, reptiles, insects and kangaroos amongst the forest and the undergrowth of shrubs. I started observing more detail in each of the trees, how they were shaped, the line of the branches, the variations of greens of the leaves and the changing sky behind them.  I watched the myriad of birds and what exactly they were doing, what they were eating, how they flitted from branch and bush, and so I became more immersed in the world around me. I relaxed more into the comfort of the chair and the experience, and I was just floating, observing, feeling my sadness and enjoying the peace, thinking about the fun I was having with my friends.  Then came a great relief that I wasn’t out walking, that I was in no pain, I was comfortable, and I was still able to enjoy communing with nature around me. The relief from not feeling any more pain was so strong I think it heightened my joy. I was so happy with my choice to stay back.

Previous to this I would have felt like I was missing the wildness the others would be imbibing.  I was a bit of a purist and it felt like a consolation prize to only be in the tamed nature. But I realized the contentment I was feeling from being surrounded by forest, even though it had been altered, was the same that I experienced when I was out in the wilds.  I had always thought that the effect on me was more powerful in pure wild nature, but I discovered it wasn’t so.  In fact I was feeling much more connection with my surrounds than I had the day before when all I could experience was the aches.

I felt the joy of simply sitting and being somewhere beautiful, without needing to be walking in the forest with my friends, without needing to do anything else, and feeling at peace and at home in myself.  That’s when I realised I didn’t have to go anywhere to feel that.  The contrast was very clear.  I felt so relieved not to be pushing myself with walking and feeling pain.  Instead I was in bliss just sitting doing nothing, enjoying the view.  It helped that I’d been learning meditation.  It came more easily being able just to sit and be, content being where I was, without needing to do or say anything.

When Dave, Ray and Naveena came back after a couple of hours I could give them a big happy smile, for I hadn’t missed out.  I had had a wonderful sojourn on my own, going nowhere but soaring nonetheless.

I didn’t know it at the time, but this realization was to change the quality of my life.  It has allowed me to more easily find contentment, wherever I am or whatever I am able to do.  I’m not dependent on feeling at peace by what I can do and where I can go.  This is a great liberation.  As I have been able to do less, finding contentment just sitting and being, has meant that rather than a diminishing of my life from not being able to walk far or stand for long, and not being able to interact with the world as much, I have found a richness in whatever is in front of me.  Now when I go away on holidays I am a happy woman with a verandah with a view, I have no need to go adventuring.  Time and again I have experienced the truth that our spirit can soar wherever we are.


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Going For The Ride

Going for the Ride – State of Mind- Attitudes and Choices

I realized how far I had come in my attitude of making the most of what I have, rather than focusing on what I don’t, when encountering my eighty nine year old father. He was becoming more limited in his walking from his bad knees, and a dicky heart valve.  I was discussing with my parents a possible oldies bus trip down south for them.   My mother really needed a break from her relentless routine of taking care of the house and my father.  We weren’t sure whether my father would be up for the walks to the attractions from the bus.  I said “Well you could stay behind and enjoy the view from the bus, or outdoor seating. You can still be enjoying the whole journey and wonderful scenery along the way, and you, and especially mum, have a change, a break, an adventure.” And my father replied “Oh but I would hate to be left behind on the bus”.  As a consequence they didn’t go away on a holiday. So he would rather forgo the whole adventure through country Western Australia, which yes, would not be all that everyone else gets to experience, but it is a sizable percentage of that, and miss all the other wonderful things, because he would feel left out and alone sometimes. I was surprised by his response, comparing it with my own.  Because I would be happy to go on a trip for some of the adventure, especially if it meant my worn out, caring partner could have a well-deserved holiday.  I would share it with them, and enjoy hearing of where they had gone and what they had seen.

When I discovered our spirit can soar wherever we are (another chapter) it enabled me to be content with just being in my own company. I make the most of wherever I am sitting to imbibe, observe, watch, explore with my eyes, and reflect, in the country and the city.  I’ve sat on many beaches and national park car parks or at picnic tables or perhaps a bench seat enjoying the view, the birds, the vista, the plants, the fresh smell of eucalypt forest, while whoever I am with is off on a big or small trek.  I’ve invariably had a wonderful time as my spirit expands to meet the full force of nature, allowing the one to infiltrate my being and merge, letting it recharge me with space, sweeping out the inner cobwebs and grungy stuff. In fact on my own it is more deeply meditative because I am in silence and not chatting to my companions.

Not long after this surprising conversation with my father, I travelled to the deep southern forests with my good friends Satrup and Prabuhta, staying at Northcliffe.  We drove through the magnificent wild karri forests to the rugged remote coastline, and everywhere we went I found somewhere nice to sit, while they went off for a walk along the beach or up the rocks or into the forest. I was really happy enjoying where I was. They came back shining, faces softer, more radiant, and I loved to hear of their adventure and of what they saw and what it was like.  I didn’t feel I was missing much at all, because I had an enriching experience on my own.  Yes I would love to be able to go for that bush or beach walk too, and have that freedom to imbibe these special often beautiful and magnificent places, but hey I can’t, so I don’t want to give that any more energy. Nor do I want to miss an amazing experience, or to be a drag of a friend, and make my friends feel guilty for enjoying themselves and having an ability I don’t.


My father’s attitude kept him living in a limited and restricted way, and it was not just him who was affected, my mother didn’t get her much needed holiday. To be fair to him, I’ve had forty years to gradually get used to restrictions and adapt around them.  For my father all he had known was fitness and capability to do anything he needed to do, and so when disability came upon him he was ill prepared, and not used to adapting or looking for the bright side.

This has all been really helpful so I don’t have much of a sense of missing out in my life. Yet actually if most of you reading this were to walk in my shoes a mile (except I can’t actually walk a mile), you would probably have a hard time with the restrictions. To some it would appear on first glance that I must have a very limited life.  But I have found not being able to walk everywhere, and all the other things most people take for granted, doesn’t mean I don’t have a huge, fulfilling life.

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Living with Deterioration – Coming to Terms with Loss and Limitation


When I was on my ten month trip overseas in 1991, five months of it was spent tropical island hopping through South East Asia, looking for my ideal tropical paradise. I was at the start of my big adventure and had been having a wonderful time in Bali and the Gilli Islands off northern Lombok for several weeks with family and friends, when I met up with Sue, my best friend during University. We travelled first to the mountains of Lombok, where life was pretty much as it has been for centuries, and where people were especially poor and we were warned by the bungalow manager not to leave our washing unattended or it would be stolen. Then for an island experience we stayed on Gill Nanggu, not far off Lombok’s south coast. It is a tiny, flat island of sand with sparse, scrubby vegetation and it didn’t fulfill my dream of a lush ‘tropical paradise island’. Gili Nanggu had no inhabitants as such, just a budget tourist place with about ten thatched, two storey huts looking out over the clear blue sea. It is so small we could watch the sunrise from our huts and then walk about 500 metres up the beach to see the sunset.


We loved the island’s peacefulness, away from the bustle, and for a couple of nights we were the only guests. It may not have been lush but the views across the iridescent waters and the nearby coastline and mountains of Lombok were magnificent. We were content to relax there for a few days; reading, swimming, snorkelling the fascinating waters abounding with coral and bright fish, walking on the beaches, eating well, talking with the friendly staff. One day Sue came back with a big smile from walking around the perimeter of the island saying “What a great day I’ve had exploring the island and all the beautiful views.” I hadn’t gone with her, given I had now learnt not to go into unknown territory blindly. She said “It isn’t so far, and I think you’d be able to do it”. So my adventurous spirit was set afire and I headed off myself the next day. By nature I am quite intrepid, but I had had to curb it with my increasing physical limitations, and this misadventure was another lesson in taking heed of those limitations.

The beach is deserted and I am loving being on my own away from everyone else, which is a rare thing in crowded Asia. I am in heaven; beachcombing, seeing what is washed up on the shore, observing and enjoying the micro as well as the macro scenes around me. I am engrossed in taking photos with the backdrop of Lombok not so far away, it is stunning scenery. Except for the lapping of the water it is peaceful and quiet and I love having the freedom to follow my whims of what interests me.


I am about half way round the island when I realize I have bitten off more than I can chew. I am starting to get tired and I figure I have about the same distance to go back again. There are no places where I can sit, until I finally arrive at rocks extending into the water. It is a relief to be able to have a rest. I think about my choices, to keep going forward to new territory or to turn back the way I had come. I end up keeping going forward, the attraction of new territory is too great for my adventurous spirit, and the rocks look so interesting. The trouble is the beach ends and it becomes all rocks jutting into the water. They are black, volcanic-looking that rise in large rough boulders up to about 5 metres high, and extend inland as far as I can see. Sue had warned me of this, and had said “I walked around them in the water.” But she is good deal taller than me, and perhaps the tide is higher. With Taman (my walking stick) to steady me, I start trying climbing over the rocks but find that is impossible. When I try wading through the clear water to go around them, it becomes too deep and I am worried about getting my camera wet. I am starting to feel isolated, and stuck in a place I have to get myself out of on my own, with just Taman to help me.

So I can’t go forward, and I still have an aversion to going back because it feels so far now, but which, in hindsight, is probably the sensible option. I opt for a third way which is to strike out inland and cut across the middle of the island, figuring it may be more direct and hence shorter than going around the perimeter. I am thinking if I keep heading across the middle I have to hit the bungalows on the other side sometime. It is such a small island it can’t be far across the middle. Through the centre seems to be the shortest option and that is my priority with fatigue setting in.

But it isn’t a short distance and it isn’t as flat as I had thought it would be. There seems to be many sand dunes I have to climb over, which are not easy in the soft sand. They feel quite steep as I become more tired and sore in hips and legs, especially the effort of trudging uphill. It is very quiet, there are no birds, no sounds in the centre of the island and no people; it is deserted and lifeless. Now the peace and quiet I had felt walking along the beach earlier is starting to feel a little eerie. I feel more uneasy when I come upon an old, dilapidated bamboo hut, which is hidden down in a gully, as though someone didn’t want it known it is there. I feel very alone in a foreign place. I am tired and in pain. I am worried about my ability to make it back to the bungalows. But I don’t let myself wallow in feeling all this too long, I decide my pessimistic thoughts aren’t helping the situation. I have to draw on a reserve of inner strength to deal with this, and not give into my fears and just keep going.

If it is not already a challenging situation, it suddenly becomes more so. My intrepid spirit does not match the ability of my body, and this is where I come face to face with this new reality. I trip over a branch and fall on the soft sand, down in a gully. I suddenly feel vulnerable and very stuck, and I am shaken up from the shock of the fall. For the last couple of years it has been increasingly difficult to get myself up and down from the ground, and I have avoided it, or I use a chair or get a hand from someone else. There is nothing around me now to help hoist me up, just sand and sparse vegetation; all I have is Taman. I don’t know if I can do it, I haven’t ever just used Taman. So I am stuck on the ground, on my hands and knees all alone, in what feels like a deserted, hostile, unfriendly place. I feel scared and helpless and I whimper at my predicament. But that isn’t going to get me out of the situation, I realize I have to pull myself together and not collapse into helplessness. I have to find a determination that I can do this, I have no choice. I have to somehow get myself up off the ground on my own with only Taman. My first couple of attempts I don’t manage it, I don’t have enough physical strength. I fall back down on my hands and knees, feeling hopeless and defeated. I rest a bit and I work on psyching myself into being able to do it, telling myself I can do it, feeling really determined. Finally on the third attempt I draw on strength I don’t know I have, and straining all my muscles I manage to haul myself to my feet. There is nothing like necessity to find new strength. It showed me what is possible if we are determined enough.

Once I catch my breath and recover a little from the surge of adrenalin, I stagger on, shaken but relieved I can keep going. But I am increasingly concerned, as the shadows are getting longer and sunset is upon me, as I take extra care watching out for any potential tripping hazards. I am feeling more and more fatigued and sore in my legs and hips. With nothing to sit on to have a rest, I just have to keep going, step by step. It feels like I am going for a long while, with no sight of the sea or the bungalows, just scrub and small dunes. This route certainly doesn’t feel any shorter and I am regretting getting myself into this perilous situation. I start to worry that maybe I won’t make it, perhaps I am lost. I figure though that eventually I will be missed and that someone will come searching. Sue will surely be starting to worry and will alert the staff and they will send out a search party. The fact the island is so small gives me comfort that I will be found eventually.


It is such a relief, as darkness is upon me, when I climb up yet another dune, to find the beach below. As I struggle down the last steep slope onto the beach I see the lights of the camp perhaps 500 metres away – what a wonderful sight! I am so relieved the way is clear and much easier on the hard sand of the shoreline; I have made it to safety. But I am exhausted and that 500 metres feels like miles, as I lean more and more on Taman, and hobble more slowly. Once again it is necessity and sheer determination that get me there, step by step. Necessity is a powerful motivator. It is now dark as I stagger back to my bungalow. When I call out to Sue, she comes out from her bungalow all chirpy, “Hello are you just getting back? I thought you were already back and having a rest”. She hadn’t noticed I was missing (so much for the rescue). I sit on the chair on my verandah, having some tea from the flask, sharing with her my harrowing time, utterly exhausted and aching all over, but so relieved the ordeal is over. We have a good laugh about what a great friend she is in a crisis; when I could have really needed her, she was blissfully unaware, enjoying a good book.

With a sad heart I realized I needed to further curb my intrepid spirit, particularly as I travelled through Asia. I was reminded again that I would have to be more careful what I got myself into. I could no longer just head off into the unknown like that on my own and leave myself so vulnerable and potentially in danger. I had to make more enquiries of a well-meaning friend’s judgment. I had learnt my lesson the hard way. I grieved this loss of what I loved to do, I had to let go of something important to me, which gave me such great pleasure and fed my spirit. I felt like it meant I had to deny part of my nature, and instead of being wild and impulsive taking off into the wilderness on my own, I had to be more sensible (ie boring). It felt like a big price to pay, but it was such a strong, scary experience, I had no desire to go through something like that again.

I later found ways of getting around my limitations, it wasn’t the end of my adventures in the wilds altogether, I just had to adapt, and keep trying.

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