Living by the water
Ken started out in engineering before he became an OT, but after chronic fatigue syndrome derailed his life he became a counsellor. He now works with people on the fringe of society and lives in the Illawarra region of Australia.
I grew up in a place called Gorokan, nestled on the western shore of Budgewoi Lake on the NSW Central Coast. At the time it was a sleepy, slowly growing suburbia, with dirt roads, trees and bush tracks for wild hearts to explore.
The lake at the end of the street was a place for solitude and reflection, away from a home that was more troubled than I understood at the time. It was far removed from the hot, dry tar sealed roads of Lalor Park in western Sydney where we lived before my father died shortly after my 6th birthday.
The Central Coast was full of wonders for a teenage boy and was the beginning of a lifelong love affair with ocean and bush. It was a typical ‘wasted youth” full of fishing, surfing, bike riding, pool rooms and Suzi Quatro on the juke-box.
Perhaps it is no coincidence that I sit typing this, looking out over the placid waters of Lake Illawarra – on the western shore of Lake Illawarra. Once again the lake is at the end of my street and a place for refuge and solitude.
Trained as an Occupational Therapist, I now work as a counsellor, in a surgery on the other side of the lake. I work with the disadvantaged and troubled. Those recovering from lives of trauma, abuse, poverty, mental illness and pain.
In the midst of oceans of suffering, I discover beautiful people, doing their best against all the odds. I feel deeply honoured to share in their lives and their stories. It makes me angry that our government and society as a whole often portray these wounded people as dole bludgers, addicts and scum, undeserving of the “generous” welfare payments they receive.
It grieves me that such a prosperous land has neither the political will, economic generosity nor intellectual capacity to grasp the true nature of the “problem” and work towards real solutions.
Feet in the water
Although I started in Electrical Engineering, I remember being interested in psychology at school, but rejected it as ‘unmanly’ – which is peculiar given the number of male pioneers in the field. I quickly learned that following a culturally endorsed but unfulfilling path is well, unfulfilling.
I was aware of a desire to 'help people' and after 3 years chose Occupational Therapy for its focus on 'meaningful activity'. My 25 years since then has been making subtle and sometimes dramatic job changes, getting ever closer to an ‘ideal job’. My passion is helping people discover who they truly are, and working out how to live that as fully as they can whatever obstacles stand in the way.
One thing I have learned from counselling is that even when there are defining moments, our life circumstances arise from an intricate web of genetic inheritance, upbringing and fate. Small things can make huge differences.
For me there are several moments of clarity. When my abusive, alcoholic stepfather reacted to my plans to study in Sydney by saying, “How will you survive?” it was more than just another narcissistic put down. It steeled a determination to get away and be independent – just like my father before me – who lived a life of adventure after emigrating to Australia in the 1920’s (yes the numbers are right).
At 15 I discovered an authentic and satisfying Christian faith which, with teaching myself guitar, has shaped almost everything since then.
Caught in the rip
Another ‘moment’ stands out. In my early 30’s I was struck down with what is unsatisfyingly labelled Chronic Fatigue Syndrome. After seven years of searching for a diagnosis and obeying doctors (and my own) edicts to exercise and get fit again, I reached the point of total collapse.It was the only time apart from a brief period in my teenage years when I felt frankly suicidal. For a month or so a sticky black fog of depression enshrouded me. Fortunately CFS dulls the mind so the best plan I could muster was wandering into the black sludge of Lake Illawarra mud. I knew that wouldn’t work. I also knew the signs of depression and decided I’d better try once more to get a diagnosis and some barely competent medical help.
This time I found a doctor who believed that CFS was real and after 12 months of trial and error, antidepressants helped my dark mood, although they did nothing for the myriad of other symptoms.
How do you cope with that? The good Christian answer is, ‘I trusted Jesus and he pulled me through’. Sadly my once vital Christian faith no longer offered any experiential comfort or hope. I did not doubt it intellectually (any more than normal) but my sense of God’s presence and comfort was gone. Although I blamed myself at the time, I now suspect it was just one more devastating impact of CFS on my brain. The truth is it left me feeling distant and cut off in all my relationships.
Getting a label for my experience helped a little although it also earned the scepticism and derision of so-called friends. Even recently in church, a lady scolded me for not standing during an energetic song saying, “Don’t be lazy”.
The attitude of the ignorant towards sufferers of CFS and other invisible illnesses infuriates me. They drive me to prayer, that God may offer them an experience that brings them wisdom, understanding and compassion. Humour and comedy helped. The Chaser saved my life.
I’d like to say my Christian friends and church were a great help, but honestly, they were hopeless. The exception was Ros’ family. Sometimes Mothers-in-law can be a godsend. Especially when they do the dishes. Music too – especially minor keys and classic rock from the 70’s brought glimmers of light into dark places.
Swimming with the current
My CFS 'defining moment' came quietly on the breeze. One spring day I lay crumpled on the sofa on our front veranda, looking out over Lake Illawarra. The water was as blue as I felt. Having been unable to work for a year or two, every attempt to increase my capacity led to a new round of pain, exhaustion, mental fog and less capacity.
In the midst of my fog a thought drifted from left field whispering, “What if this is as good as it gets”. It was as if a light came on. I finally trusted my experience instead of what the “experts” told me. I realised that rehabilitation was pointless. It just made things worse.
It dawned on me that I needed to build a satisfying life inside the boundaries that were there, right now. I had to abandon hope. I could give up the struggle with this illness and simply accept what it offered me. I needed to make the 6 hours a week where I was vaguely functional count. Interestingly ‘giving up the struggle’ has led to a significant improvement over the years. I am now at 50 per cent rather than the 10 per cent I was then.
It’s like the advice of the lifeguards. If you get caught in a rip, don’t swim against it. Even if you’re Kieran Perkins, you can’t beat it. That way leads to exhaustion and drowning. Rather, let it carry you and when you reach quiet waters, then find your way back to shore. My journey since then has been to accept pain, exhaustion, loss and regret, while doing what I love with gratitude. It’s taken a while to find out what that is but I’m close.
My own personal lifeguards
I couldn’t have done it without the support of my lovely wife Roslyn. She has known her own pain which I will leave her to tell another time. The biggest loss for her was the energetic, playful man she married – all the while struggling with her own depression and anxiety. She stood by me, tolerated my foul moods and withdrawal and when I began to regain a small amount of lost ground encouraged me to follow my heart in terms of work and study – leading to my current work as a counsellor. It helps that our two sons are wonderful young men who have mostly forgiven us for the mistakes we have made.
A few people truly inspire me. I see in Jesus a sense of wisdom, compassion, grace and challenge that is compelling. It is little wonder that my aim is to follow his footsteps in my own inadequate way. Christian philosopher Francis Schaeffer was a lighthouse, revealing the ‘wisdom of the world’ for the folly that it is. He too lived a life of humble, practical service. Christian renegade Larry Norman for all his brokenness and blind spots was a hero. He spoke and sang the truth, even when it made the whole world uncomfortable.
The next wave
Like the first inhabitants of this land, I feel a strong sense of place. For me that place is ‘beside the water’. Whether it is Lake Illawarra, Soldiers Beach or the Franklin River – to be close to the water is to be alive. It is there that my spirit soars and I once again feel a sense that this is God’s place and he is close.
My journey of faith continues to be a journey. I have rejected the perfectionism and legalism that marked my 20’s and I regret my own harshness towards others who struggled. I believe that God works in his own way, in his own sweet time.
I don’t know if the experiential side of my faith will return, or whether that part is sealed off by some quirk of neurological fate. Neuroscientists claim to have discovered the “God spot” in the brain – and maybe mine (like my short-term memory) has been short-circuited by CFS?
In some ways it matters little – for I know that God understands and accepts. He knows my heart in all it glory and all its failings. I am comforted by the words of a woman to her priest who was also struck by this illness. The gracious old man despaired having lost the mental endurance and concentration to pray. His friend reminded him, “Father, all these years you have prayed for me. Now it is my turn to pray for you.”
I also know that my acceptance with God does not rest on my now even more limited performance of any Christian duties or spiritual disciplines. It rests solely on God’s loving kindness and forgiveness. Even if I don’t stand for the energetic songs, I can serve and love in my own small ways – even if that is to sit and talk or share silence with those who sit on the margins of our churches.
So what advice would I give? Love with dirt on your hands. Get involved in supporting those who struggle in real, practical ways. Mow lawns, clean cupboards, mind ill-mannered children, live in a small house and give generously in any way you can. If your abilities are limited compared to others, that’s OK. Before you judge the less-fortunate, sit down with them and let them tell you their story. If you listen closely, the tune will come to you at last, and it will touch your heart. My only real wish is that more people would do that.