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.
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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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