Close-up of the front cover of Trapped. Photo: Photo courtesy of Fran Macilvey.
Trapped
Fran Macilvey, whose book Trapped: My Life With Cerebral Palsy has recently been published, reflects on some of the challenges of living with disability.
‘Why me?’ is, ultimately, a futile question, which dominated forty years of my life. I’m not quite fifty. The grief of being born into a body heavy with cerebral palsy offered plenty of scope for self-pity. Though the first alarming signs of suffocation at birth suggested I would need constant care, the physical realities resolved into a mere shuffling walk and an unbalanced gait that lurches awkwardly from side to side. Even so, it soon became apparent that, unless I fought very hard to stake my claim, these minor aberrations would be enough to exclude me from most everyday hopes of an ordinary life.
Why?
My search to answer ‘Why?’ was paralysing. Eventually, I muted that particular brand of despair and turned instead to pondering ‘What can I do about this?’ – to which the answer shone clearly: write. Write honestly about the sorrow and the challenges that I have faced, and largely overcome, to finally find peace.
Shortly after I first attended Meeting in 2007, the unfolding of my secret ambition from its cramped quarters in my ‘maybe sometime’ folder began. In Meeting I found space to listen to the Spirit. At last, with a profound sigh of relief, I gave myself permission to ask for help and listen for answers. A path was gradually revealed which would lead me gently, forcing my hand in the kindest way, asking: ‘Is it writing you would most like to do? Then, please, for the love of God, we invite you to do it.’
I took, as my first and most urgent subject, the vexed question of how to be happy, beginning a process of journaling and listening that would eventually become my second book, Happiness Matters. Quietness in Meeting finally convinced me that happiness is worth aiming for, and offered the space and precious permission I needed to experiment with lighter choices. In the process I found my voice and started writing Trapped.
Haunting the afternoon
I was born in the Congo in 1965, a younger twin and the fourth child of a new recruit to the Belgian diplomatic corps and his feisty Scottish wife. Pitched into his first post in the midst of a destructive civil war, father not only managed to protect us all, but lived to tell the tale and began his ascent up the career ladder. Having a disabled daughter was not part of the plan.
‘My siblings probably resented the attention I received, and I resented their freedom. It became clearer to me with each passing day that nothing I did would pass without correction and nothing I said went without a comment, a puzzled look, a frown. Singing was my salvation, as I sent out my voice to live for me. I read adventure and travel stories and, above all, I avoided attracting attention. I sat haunting the afternoon with my shadow.
‘At an age when youngsters are hard-wired to move and flit unceasingly, it was impossible for me not to want to do the same, no matter how clumsy I might have looked. But, as I had no wish to attract attention to my “oddities” or be the subject of yet more speculation and insults, I forced myself to sit still. That I was often derided as “lazy” as a consequence is one of the many “no win” situations I learned to tolerate.
‘Life was proving a difficult balancing act for us all, my mother and siblings particularly feeling the brunt of my frustration: damned if they tried to help me (“I can manage!”); damned if they didn’t (“How could you leave me here, lagging behind you?”). I brushed their hands aside so I fell behind. They went ahead and I yearned for company. It is this contradiction – not my physical compromising – which lies at the core of my immobility.’
My dreams
My dreams were those most of us cherish: to grow up, get a job, maybe get married and have kids; so I took on life’s challenges and made the best of them. Introverted, and unhappy about the unfairness of my situation, I found my path littered with physical complexities, with prejudices and careless, contradictory expectations: that I should manage fine, keep up, join in, not make a fuss, keep out of the way and be like everyone else. Yet, I was keen to participate, so I became resigned to my reputation as ‘that awkward nuisance who walks oddly’.
Being the only disabled child at boarding school was oppressive. By the age of fourteen, consumed by despair and self-hatred, I was a hardened self-abuser. I tore skin off my fingers, palms and feet, pulled out my hair and scratched my head until it bled. Two painful and unnecessary orthopaedic operations only increased my distress, and reinforced my belief that there was something in me to regret.
Exhausting and humiliating
The embarrassment of being the only disabled student in my year at university, the only disabled employee in my workplace, the only disabled person I saw anywhere, was exhausting and humiliating.
‘Because I have never felt “disabled”, when I was a child I believed that one glorious day I would get to do most of the ordinary things that you do. Instead, growing up became a slow, heart-breaking awakening to the understanding that choices which others seemed to take for granted were forever destined to remain one tiny inch beyond my reach. Try as I might, I could not bridge the teasingly small gap that split me away from the carefree choices others took in their stride. To cope with my disappointment, I learned to adjust the brightness of my expectations so that they would not always blind me with tears.’
I have spent most of my life trying, and failing, to please other people. Many times, I found myself in painful, barren or worrying circumstances as a result. Yet, despite travelling a lonely road in search of peace, I refused to surrender. I have always believed in the inherent beauty of Life. I held out for better things and, one magical day, someone looked at me and saw love.
Walking a lighter path
My husband’s love gives me courage to walk a lighter path. With him, I have found answers. I relish knowing that in finally choosing to do what I enjoy – in marrying, having a daughter and turning to writing as a possible career – I am rescued from isolation and premature death.
When people read my story I hope that they notice what we have in common: I hope that my story challenges public perceptions of what it takes simply to lead a ‘normal’ life; and helps to increase understanding of the myriad compromises that disabled and disadvantaged citizens live. In Trapped I tried to bring to the light of day many of the intensely personal and private struggles that we constantly battle with; and highlight the barriers that, often unconsciously, exclude people from contributing to society. Everyone, whatever their age or level of ability, has something precious to offer.
Trapped: My Life With Cerebral Palsy by Fran Macilvey. Skyhorse Publishing. ISBN: 9781628737615. £11.91. The audiobook, narrated by the author, is available from Audible.
