Fighting Blindness is hosting its annual Retina Public Engagement Day on
November 5. To mark the occasion, psychotherapist John Delaney shares his
experience of living with retinitis pigmentosa.
If I was asked to identify what has propelled me forward in life, it would
have to be my innate curiosity and desire to make sense of whatever is
happening to me, no matter how absurd or unprecedented the situation might
seem.
Perhaps this attitude to life is the result of my diagnosis with retinitis
pigmentosa (RP) when I was six-years-old. RP is an inherited retinal
condition that gradually leads to visual field loss and retinal
degeneration.
My parents had consulted an ophthalmologist having noticed that I was not
just exhibiting signs of short-sightedness but 'tunnel-vision and
night-blindness as well. While there has been tremendous progress in
treating some sight loss conditions, there is no treatment available for my
type of RP which is both progressive and aggressive. Blindness would be the
inevitable outcome.
It was only when I became a parent myself that I began to appreciate how
helpless and frightened these two kind and loving people must have been on
hearing this prognosis for their young son.
Since there were no medical avenues to be pursued, we fell into the trap of
not talking about RP and it is one of my few regrets that we never got to
break the silence that seemed to surround the taboo subject of blindness
before they passed away.
Life has taught me the valuable lesson that it is only when we find the
courage and the words to talk about those things that most frighten or pain
us that they diminish in their power. We can then begin to experience the
healing balm of authentic self-expression.
We all yearn to be heard in a world where the act of talking seems to be
prioritised over that of listening, yet the latter is arguably the greatest
gift we can give to each other, since every aspect of communal human
endeavour benefits from deeper connection. As Kay Lindahl put it so
poetically, being truly heard is close to the experience of being loved.
Growing up, my sight progressively deteriorated through the phases of low
vision, partial sight, and ultimately to my current stage of having light
perception only. Consequently, I encountered many problems along the way,
both practical and psychological, in school, at work, and socially, chiefly
because I lacked a full understanding of what was happening to me and how to
communicate that to others.
Fortunately, it was a combination of nurturing relationships and the wise
counsel of others that were my salvation. Perhaps it was these positive
influences that led to my decision to ultimately train as a psychotherapist,
something that literally changed the direction of my life.
Some years ago, I had the good fortune to meet Michael Griffith, someone
whom I can only describe as a true visionary. Michael more or less
single-handedly created the organisation known today as Fighting Blindness
which has dedicated itself to empowering people affected by sight loss and
to pursuing treatments and cures through cutting-edge research programmes.
I think of Michael as a kind of prototype social entrepreneur. He is someone
who identified an apparently insurmountable problem and breathed into it the
oxygen of hope. He has been an inspiration to me in my life and it was a
real privilege to be given the opportunity to work for that organisation
overseeing its Insight Counselling service for a number of years.
I lucked-out when I met and fell in love with my wife Georgina whose
compassion and generosity of spirit knows no bounds. She offered me a
relationship in which the entirety of who I was, and could potentially
become, mattered more than my sensory deficit. In this ever-changing world,
she is my touch of certainty.
The birth of our daughter, Gillian, provided me with further impetus to live
my best life as I wanted to show her that whilst life can often seem unfair,
even cruel, it is not so much what happens to us that is important but
rather how we respond to those events. It is something I re-commit myself to
daily.
I accept that sight loss necessarily informs my life but I remain determined
that it wont define it. I have come to understand that vision exists on a
spectrum from gross sight at one end to the subtleties of insight at the
other, the latter being where the deepest perception of what matters occurs.
To be understood by another is a blessing, and to be accepted for who you
are, an even greater one.
I find my work as a psychotherapist and supervisor deeply rewarding and
enriching. I owe so much to those clients who have sat with me searching for
the words that might finally liberate their untold stories of suffering and,
in the process, sow the seeds of hope and healing in their lives. I am
constantly reminded of the power of empathy, patience and humility in the
act of listening for those moments of revelation that often prove
transformational.
As I look back over the last six decades of my life, I find that I am less
inclined to focus on specific events but rather view things through a
collage of relationships that have both formed, and informed, who I have
become. Its an exercise I like to do recalling in the words of Søren
Kierkegaard that life, while it can only be understood backwards, it must be
lived forwards.
I spoke on the phone recently with an old friend who observed that I seemed
a little stressed. I explained that I was facing into a busy week with a
packed schedule. She listened patiently before gently reminding me that it
is the peace we find in each others company that is so important and that,
while the world places many demands upon us, it is the beautiful presence in
our lives of the people we love, and who love us, that enables us to be who
we truly are.
William Faulkner observed that the past is never dead, its not even passed.
I understand this to mean that every moment of our past, including the
relationships we gained and lost along the way, makes up who we are, so in
that sense the past lives on within each one of us.
As the old Irish saying goes: it takes a village to raise a child and, if
allowed the licence, I would add that it takes a few good allies to make a
man.
Fighting Blindness Retina public engagement day, for people with sight loss
and their families, takes place in Dublin on Saturday November 5. The event
will also be streamed live and is free of charge. Registration is at:
www.fightingblindness.ie <http://www.fightingblindness.ie>
RTÉ Lifestyle.
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