Reviewed by Jay Scott Kanes
How much medical and personal misfortune can a family endure? Perhaps more than anyone imagines. Great strength and positive results may emerge from even the most tragic circumstances, as Jonathan Chamberlain shows in an emotionally draining true story, Wordjazz For Stevie, How a Profoundly Handicapped Girl Gave Her Father the Gifts of Pain and Love (2010, Blacksmith Books, 188 pages, HK$108).
Addressing the spirit of a dead child, the author bares the rawest emotions in this love story like few others. He also struggles to accept an unfair burden of life's difficulties.
What kept him going? “It was the love and the pain. Both together... floating in a sea of pain and love, a pain that screams obscenities and a love that sings like birdsong.”
In 1986, Chamberlain, from Britain, and his Chinese wife Bernadette, then residents of Cheung Chau, an outlying island in Hong Kong, had their first child, a never-“normal” daughter named Stevie. The girl lived just eight years.
Doctors promptly diagnosed Stevie as having Down's syndrome. Already, that's wrenching for new parents.
“ ‘Is it something we have done?’ Bern asked.
‘No. Don’t blame yourself. It was nothing you did.’
‘How did this happen?’
‘It's not your fault. No one is to blame. It is something that happens at random. One in seven to eight hundred babies. Don't blame yourself.’
Mind blank. Stomach empty and sticky with shock. Stunned, vacant, annihilated. I wanted to comfort Bern who had gone through the pain of birth for this... this further pain.”
Soon more doctors detected that Stevie had a heart defect, requiring surgery, but that went wrong, leaving her brain-damaged, blind, epileptic and unable to sit, stand or walk. “Who knows? Fate had it in for you. Who can you blame?”
The author pondered an extreme reaction. “A pillow over the face?... Was that the right solution? I contemplated it, Stevie. I did. And I decided I could do it. But I would do it only on one condition. I would do it only if you could not live a life that was bearable to you.”
This tragic family memoir tells of Stevie's life, the author's affections for her and how, despite the girl's limitations and troubles, her short existence proved worthwhile. “She was always happy – except when she was annoyed that she didn't have her great pleasure in life – music. She loved her music.”
Stevie inspired her dad to form two charities, the Hong Kong Down Syndrome Association and the Mental Handicap Network China Ltd, both to help handicapped children and their parents, often with advice and moral support. “...the personal pain that is kept inside, dark and secret, hurts for longer. The pain that opens the heart to other people's pain, and leads to helping other people, is pain that heals itself and enriches awareness.”
“Wordjazz” is a term that Chamberlain invented. “I wanted a word to convey the sense of celebration – this book is a celebration of Stevie's life,” he said. “It's a story from the heart. I doubt if I'll ever write anything better.”
Small victories against huge odds can bring great joy. That's what Stevie delivered to people near her each time she smiled.
Sadly, fate insisted on kicking the Chamberlain family at the most inopportune times. As Stevie neared death, Bernadette struggled in a battle against cancer. Soon the author and his son Patrick, Stevie's younger brother, had to carry on by themselves.
Endless hospital visits and medical assessments, not always accurate, have given Chamberlain a dim view of doctors and their expertise. “The doctor informed us of these risks with a cassette player recording his words for legal posterity. When I asked about the risks, he dismissed them as being ‘only statistical’. What did that mean?” Although justified, the author's skepticism may leave readers feeling distinctly uneasy.
Raised in Ireland and Hong Kong, Chamberlain graduated from Sussex University before returning to Hong Kong and working as a teacher and writer. Now he's a prolific full-time author living in Brighton, England.
Blacksmith Books has published Chamberlain twice before: KIng Hui: The Man Who Owned All the Opium in Hong Kong (2007) and Chinese Gods (2009). His other work includes Cancer: The Complete Recovery Guide (available at www.fightingcancer.com).
In Wordjazz For Stevie, Chamberlain writes with such brutal honesty that readers can't avoid a sense of intruding on some intensely private family matters.
Yet there's also a mighty gratitude that he shares so much. The lessons he learned, the conclusions he reached, may help others to face their own big challenges.
To the best of my knowledge, I've never met this author, but reading Wordjazz For Stevie conjures an illusion that I've known him for decades. Surely, only a close pal would express so much from deep inside his heart.
At times, some readers may need to set aside the book, so powerful are its emotions. But no one should regret reading it – not for a moment.
Approval rating: 83 per cent.
For more information: www.blacksmithbooks.com
(May 15, 2010)
Jonathan Chamberlain: 'floating
in a sea of pain and love'.