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arkallen

Distinguished member
Joined
Mar 8, 2009
Messages
268
Reason
Other
Diagnosis
05/2009
Country
AU
State
VIC
City
Wodonga
A couple of years ago I watched a sharp and fresh sunrise over the red sand and mulga scrub of the Western Desert. On this particular morning I was surveying our campsite from a collapsible camping chair, looking at all our equipment and the pristine new 4WD we had for the trip. Camping in Central Australia is a superbly simple experience: just find a spot you like, roll out the swag and unfold your chair! Lighting a cooking fire is almost too easy with hard, dry firewood at hand and spinifex grass that ignites just before you strike your match. Sleeping in the open under a brilliant night sky might just change you forever! A friend and I were heading west to a remote desert community where we felt strongly called to offer our friendship. It was a mission with a degree of challenge, as any journey in the desert must have; but on this still, warm, glorious morning the thought had crossed my mind, ‘This is way too easy!’

Well, I never imagined that following the call would become quite this hard. This morning, two years on, I'm sitting on an entirely different style of collapsible chair; one as vastly changed as the scenery. White sand on a south coast beach has replaced the ochre dunes of central Australia (I'll never know which I prefer), and the collapsible chair has grown wheels. Yes ... it's Bugger. The new arrival, B4-the-beloved, has gone! The Delivery Room recalled her for adjustments that could take days, and in the meantime my Favourite Wife and I are visiting family on the coast. But no matter: give me the simplicity of a manual chair any day! Just Bugger and me and a beach! No fancy tricks, no hi-tech wizardry, no batteries. No whizzing along the water's edge, no exploring as far as the eye can see (I reckon it's about 15km!). No comfortable seating, no power, and no independence. What am I saying?! I am bereft!

The worst of it is I have to be pushed. Oh, how I dislike that! Regardless of the character, the kindness, or even the love of 'the pusher', the surrender of autonomy is very had to take. Powerlessness is acrid to my soul! I don't know which is worse: the awkward little questions about comfort and speed proffered by well-meaning and careful pushers; or the impersonal efficiency of hospital wardsmen and airport staff. There is something about the passivity of being pushed along which I find more than repugnant. It's an issue of control, no doubt, yet I don't think I fit the profile of a Control Freak. In all of us there is a sense of independence which is at the heart of human vitality. At one extreme the need to control encompasses dominance, manipulation and deep insecurity; at the other end of the spectrum lies sheer survival. Somewhere in the middle you might find dignity, self and conviction: the essence of life.

I had a most wonderful Collapsible Box amongst my childhood possessions. I think I may have found it in a roadside council clean up; back in that golden era when truly great treasures were regularly discarded by the gentry that populated the enormous old mansions of our harbourside suburb. About the size of a lunch-box, its polished aluminium sides folded neatly inwards until they nearly vanished beneath a shallow, square edged lid. I wonder if it wasn't some sort of specimen container used by a field biologist? At any rate, it fascinated and delighted my young, boyish eyes. There is, to me, something intriguing about anything designed to fold up, to cunningly change its shape and fit into a new environment. But I am drawn to examine another field of collapsibility altogether: my own.

A week without B4; a week in an unfamiliar setting away from the ordered routines of my home, is a challenge indeed. My erstwhile healthy appetite for a new vista, a new place to explore, or a new room in which to repose is increasingly in compromised by a panicky need to remain in control of my world. On a physical level I'm dependent on an array of props and devices: inflatable cushions, walking sticks, my several wheel chairs of course, a curious rubber tipped stick I have invented to reach and poke things with; a tangle of webbing and buckles that add stability to the inadequately small seat in our car. A boot load of equipment! And on an emotional level I battle to adapt to any change; fearful of an overwhelming loss of control. It's all too easy in these moments of stress to react selfishly; unmindful of those who make up my world and on whom I increasingly depend. I understand now what I have seen and misunderstood in others.

Courage comes easily to youth; bravado is simpler for the strong. But add a little age or limitation, and life is not so simple. The challenge in life's journey is to remain flexible within. So I am pursuing an elasticity of soul, an ability to live calmly in narrowing straits. Collapsibility is a useful attribute: fitting artfully into a changing environment. Trust might be the very same thing.

It's a challenge.
Rejoice!
 
In the demands and stress of caregiving I sometimes neglect to consider the world from the perspective of my PALS. Your post has reminded my what her kindness and patiences often allows me to forget. Thank you.
 
Roderick, what a great "voice" you have. There is so much in your post which resonates (and are you sure the desire for control isn't truly "sheer survival"?) I hate to think of you in the original Bugger because of the lack of comfort. It's very rare, but occasionally Phil asks if I would like to do something which would mean leaving behind my monster chair--to go somewhere without a ramp's accessibility would be the reason--and my heart absolutely drops at the thought of "sitting on elbows" in the hard manual seat. My sit bones, I am sure, have grown. As has my tailbone. They are all three poking out of me and everyone is too polite to tell me about the abnormality.

I can't imagine you as a control freak whatsoever... It would be easy to become irritable and selfish as the limitations continue to mount, but...as you said so well, becoming flexible and letting go of the "need" to have control, realizing that this is the new big thing to learn: How to trust while it may seem that nothing is going smoothly... is the battle being fought. And we're getting in some good practice, aren't we!

Thank you again for your post. It's always such a treat which I look forward to!
Ann
 
Roderick,

Yet again you offer such graceful insights. Not only to your own experience, but to life in general.

Liz was in fact a control freak, from the moment we married she took control and didn't truly relinquish it until the day she died. And I loved her for it. However, can you imagine having the reins of your life and those of your four kids suddenly handed back to you after twenty years? I have had to garner up courage and bravado I never knew I had, even as I grow older and less flexible of mind and body. I know my kids are seeing a side of their father they probably never knew existed. In fact, I don't think I really knew it existed. I miss Liz every day, much like you miss your independence I would imagine, yet I have learned so much since she passed that I have become a completely different person for the loss. It is still a bitter loss though.

Thank you,
Dick
 
Roderick,

Yet again you offer such graceful insights. Not only to your own experience, but to life in general.

Liz was in fact a control freak, from the moment we married she took control and didn't truly relinquish it until the day she died. And I loved her for it. However, can you imagine having the reins of your life and those of your four kids suddenly handed back to you after twenty years? I have had to garner up courage and bravado I never knew I had, even as I grow older and less flexible of mind and body. I know my kids are seeing a side of their father they probably never knew existed. In fact, I don't think I really knew it existed. I miss Liz every day, much like you miss your independence I would imagine, yet I have learned so much since she passed that I have become a completely different person for the loss. It is still a bitter loss though.

Thank you,
Dick
Dick, I love the way you frame change and growth within yourself and your family in the bigger picture of accute loss. I think that sounds both true and brave. Loss is so bitter, and yet it has its way of transforming. So well said, thank you.
 
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