This short but powerful book was written with an Irish family whose middle child, Jen, suffers from a severe form of cerebral palsy. It was written over a two year period as I interviewed her mother and then Jen's two siblings. It was a tough book to write but they wanted to tell their story for other families to know they were not alone.
I called the book - The Gift - from the Dutch proverb what says that every disaster brings with it a gift.
This is a true story:
Chapter One - Prologue
Introduction
Jen cannot move. She cannot feed herself, wash herself or go to the toilet by herself. She has limited speech and involuntary spasms of her limbs. She can talk but is only understood by her family and those who look after her. She is defenceless in a world that does not tolerate disability, especially the crippling harsh disability that has devastated her life. Her only defence is to stop: stop eating, stop talking and stop laughing. When she was seventeen she went on hunger strike. For six months she stopped eating: her weight fell to less than two stone. Love brought her back, but love could have as easily let her go.
Jen has learnt to talk, to communicate and every day has new words for her own particular vocabulary. The first sixteen years she spent at home with her mother and her family, with little outside assistance. Reading eluded her but words and music she has absorbed into her being. Like a scholar, these words have consumed her. It is no easy matter to understand her now. It cannot be done in passing. Communication needs direct connection. It is necessary to sit with her, locked into her orbit, to understand her language. The learning practised by her family has become the undoing of her communication. Where once it was simple, now it is complex.
Today Jen is thirty-three years of age. She has the same life expectancy of you and me. Her early years of joy are now slipping away. Her cocoon, her world, her voyage around her mother, these are all in reverse. Jen does not understand consequence. She does not understand the future, but she can see her mother aging before her eyes. She can see her world aging before her eyes.
To have no movement is to live in a prison of her own limbs. Jen feels this terribly. All she wants is to be with her family, but that is not enough. She wants to do what her sister can do, what her brother can do. This brings on a rage that she does not understand. A motor accident some six years ago has reversed the early triumphs of her youth. Now incontinence is a regular feature, but as a woman who mastered the ability to control her bodily functions, the imposition of nappies is a further knock to her confidence.
In Hollywood, disability is portrayed as a gift: the early challenges, the beating of adversity, the triumph of learning and the acquisition of skills. In Hollywood, the film vacates at the mid-point, the triumph and the success. However, after a high must come a low; after success will come recession of some kind. With Jen, the recession of happiness is a terrible price to pay. Not yet half-way through her expected life, her physical capabilities are reversing significantly, from a point of such limitation that even small reversals can be catastrophic. Her life is passing its mid-point and she feels it terribly. Even as she grapples to hold her own, she knows she is going backwards. A terrible depression is falling on her.
It was said more than once in Jen’s family that possessing normal mental ability without corresponding physical motor skills was a positive. It meant that her parents could rest easy that Jen could tell them if anyone was mean to her or even abusing her. Today her mother is not too sure. What seemed like a blessing is now a torment. If Jen did not understand, then she might not fret, not feel, not rage. It is only the midway point through Jen’s life but things are getting worse. Jen is increasingly upset and hitting out at those who help her. A happy child once, she is turning into a depressed individual. This in an able-bodied adult would be tolerated after a fashion. In a severely disabled person, it is a double life sentence.
Jen’s parents and siblings love her to within an inch of her life. She is the nucleus of their family. She has made an impact on them as firmly as a farrier’s branding iron. To her dad, she is an angel. To her brother, she is his film buff fan. To her sister, she is the most vulnerable person worthy of protecting in the world. To her mother, she is the baby who died at birth, but she couldn’t grieve as she was handed Jen instead. Her baby and not her baby. They are all in the same prison that ties Jen. The same crippling life-choking prison. They are bound by love and die by love.
But this is not Jen’s story. This is her mother’s story; a story of a mother who loves her daughter. A story of a mother who has two other healthy children and a husband. This is the story of a mother who, if given the chance again to revisit Jen’s birth thirty-three years ago, would run in the opposite direction. This is the story of a mother who loves her daughter but who has lived a terrible life with her. Loving can no more stop than the days refuse to turn into night and back again. If Jen has a purpose on this earth, her mother believes it is to teach us about love, how no life can be perfect. Yet at her birth, love died and took away her life. How can this be? This is life with Jen. A mother’s story. This is Patricia’s story.