Keep traveling, Dennis. The world SHOULD be yours.
Carole H.
--- Dennis Greene <[log in to unmask]> wrote:
> Nothing prepares you for the shock. No amount of
> intellectualising can get
> you ready for that first moment when your view of
> the world, and the world's
> view of you, changes because now you are in a
> wheelchair.
>
> For me this moment occurred early one morning at
> Perth Airport as I began
> the long journey that would take me half way round
> the world in just over a
> day. I had been invited by my friend Joan Snyder to
> visit her in the small
> central Illinois town of Chillicothe to work with
> her on an anthology of PD
> related writings. The invitation was one I found
> hard to resist. Not only
> was I excited by the project but I was also eager to
> meet 'in real life' a
> woman I had come to think of as a friend since first
> meeting her on the
> Parkinson's Information Exchange some two years ago.
> But there were
> compelling reasons not to make the trip - not least
> of all that for a
> variety of reasons my wife Jo would be unable to
> accompany me at that time.
>
> Just a few years ago that would only have been a
> problem because we like to
> do things together - these days however the thought
> of travelling across the
> globe, and managing for two weeks without her
> unobtrusive care and support,
> was daunting. But one by one the problems solved
> themselves until only
> two facts remained; I really wanted to go - and both
> Jo and I were worried
> about me travelling alone. Eventually we
> compromised - I would go, but as a
> wheelchair assisted passenger.
>
> Which is why early one morning a few weeks ago I
> found myself looking up at
> the suddenly tall young woman who moments earlier I
> had towered over. For
> an instant I felt small, childlike, almost
> insignificant - and then a
> cheerful voice said "off we go" and the 'tall' woman
> behind her imposing
> counter disappeared and I was able to regain my
> sense of being a 49 year old
> adult as we moved through the wider spaces of the
> concourse. Clutching my
> cabin baggage as if it contained my life (it did -
> my passport and a months
> supply of meds), I was wheeled to security, relieved
> of my bag, wheeled
> through, reunited with my bag and wheeled straight
> on to the aircraft and
> to my seat.
>
> 'Piece of cake' I thought - little did I know.
>
> Little did I know that the next 30 hours would be a
> learning experience as
> intense as any I have ever had. The first thing I
> had to learn was that
> unless you establish yourself as a human being as
> you meet them many of the
> people assigned to help you will treat you like a
> piece of luggage. They
> will push you face first into elevators and leave
> you facing the back wall.
> They will leave you in empty rooms with minimal
> explanation ("back soon" or
> "wait here"). They will push you uncomfortably
> close to corners, potted
> plants and a wide selection of hard, sharp edged
> objects. They will leave
> you for long periods in places with no access to
> toilets or refreshments.
> They will even ignore your presence and discuss with
> a third party the
> inconvenience of allowing you to wait in 'their'
> wheelchair until the
> arrival of the wheelchair which is to take you on
> the next stage of the
> journey. To put that in perspective there were no
> seats in the area and my
> uncaring friend was proposing seating me on the edge
> of a low brick
> flower-box. As it is hard for an 'off' PWP to assert
> himself I experienced
> all of the above, some of them several times.
>
> On the flip side I did meet some helpers who took
> the time and trouble to
> treat me with respect and care. One cheerfully made
> two trips on my behalf,
> the second to bring my luggage from the carousel
> when no-one turned up to
> help him. Another, on discovering that my flight
> wasn't boarding for
> another hour and that in the meantime he was needed
> elsewhere, inquired
> where I would prefer to be left. At my request he
> left me at a coffee shop
> after first explained why he was leaving me and
> telling me what time he
> would be back for me (he honoured it to the minute).
> It being a
> self-service coffee shop, his last act before
> leaving was to bring a member
> of the coffee shop staff to my table to take my
> order. Strange to say,
> against the stereotypes and with one exception, I
> found that the men who
> assisted me were more aware of my needs than the
> women. I have speculated
> that this is because I am a big man and take some
> pushing. The women who
> pushed me found it very hard going, and I suspect
> that all of their
> resources were concentrated on simply keeping me
> moving, leaving nothing for
> the niceties.
>
> I found being in a wheelchair curiously liberating
> in one respect.. I am a
> PWP of long standing with, depending on my
> medication status, either a slow
> shuffling walk or a wildly erratic dyskinetic
> stumble as my usual mode of
> travel. I am used to drawing looks in public
> places. Compared to the looks
> I usually get, the looks I got in the wheelchair
> were friendly, concerned,
> dare I say caring. It was an unexpected bonus.
>
> The experience of travelling as a wheelchair
> assisted passenger has left me
> with mixed feelings but there is no doubt in my
> mind that without the
> service I would not have been able to make the
> journey or my contribution to
> the book. I have no way of knowing what success
> awaits "Beyond the Pause"
> but I do know that my life is already richer for
> having met the talented
> group of people working to make it a reality. I am
> also richer for being
> able to see the originals of Jane Scott's and Mark
> Esser's extraordinary and
> moving exhibition "The Letting Go - A Parkinson's
> Story". The book will
> feature many of the pieces. Not least of all I am
> richer for having met
> many of the people I have 'chatted' with for so long
> on the internet.
>
> I am home now, back in my familiar surroundings. A
> year ago I thought my
> travelling days were done. The last few weeks has
> shown me this is not so.
> I doubt I will travel alone again but I will travel.
> For all its faults
> 'wheelchair assisted' has given me back the world.
>
> +++++++++++++++++++++++++++
> Dennis Greene 49/dx 37/ onset 32
> There's nothing wrong with me that a cure for PD
> won't fix!
> [log in to unmask]
> http://members.networx.net.au/~dennisg/
> +++++++++++++++++++++++++++
>
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