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 won’t 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. It’s 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 other’s 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, it’s 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
