The book that needed to written or surgically removed

HEDI LAMPERT

The character of Vi in my recently published debut novel, The Trouble With My Aunt, is based on my mother’s sister. Born in 1933, she grew up during a time when children like her were viewed in no uncertain terms as “retarded”. The prevailing educational system had no place for these individuals, and their families had little or no support. For many, institutionalisation in facilities for the mentally handicapped was viewed as the only viable option.

My aunt was fortunate. While my grandparents were alive, she lived with them. My grandmother did what she believed to be her very best by her daughter, and never gave up trying to teach her to read and write. She also ensured that my aunt was impeccably groomed, well-mannered, and generally socially presentable at all times.

It was only in the mid-80s that we were made aware of Fragile X syndrome, and I was tested for it, as were my mother, grandmother, and aunt, who was 53 at the time. Our blood was sent to a laboratory in Belgium, as at that time, no tests were available in South Africa. My grandmother was found to have a premutation (she was a carrier) and my aunt, a full mutation with all the symptoms of Fragile X syndrome. My mother and I both tested negative.

After my grandmother died, my aunt became my mother’s ward. Having devoted her entire life to ensuring that her intellectually challenged younger sister wanted for nothing, this was a natural progression for my mother, but it wasn’t, by any stretch of the imagination, easy.

What troubled my mother even more though, was the thought of not being around to care for her sister. She confided to me on more than one occasion that she was terrified to be the first of the sisters to die, lest someone else have to take on the burden of my aunt’s care.

“You know, when people pray at the Western Wall in Jerusalem, they write their secret prayers on slips of paper and roll them into tiny scrolls, or fold them up tightly, and push them into the cracks between the stones,” said my mother.

This worried me. How could you trust that the notes wouldn’t be plucked out and read by someone else?

“No one ever does that,” she said. “I suppose people just know that some things can only be shared with G-d”’

It was Friday night, and she lit the Shabbat candles. The match popped and hissed into a flare. I covered my eyes, and recited the Hebrew prayer I’d learned at school. As always, my mother remained silent, clearly invoking her right to secrecy, which was probably not such a bad thing, given that she was praying for her sister’s death.”

I first began writing The Trouble With My Aunt 15 years ago and the book has undergone any number of mutations resulting in rewrites too numerous to tally. However, one thing remained constant: I knew that the story had to come out on paper or be surgically removed!

While the story is inspired by actual events, I have written a novel in which the characters are fictional as are certain plot elements. In a nutshell, then, when an unplanned pregnancy threatens to turn the life of 32-year-old, single, careerwoman Leah Fine upside down, she fears her own child may be impaired, just like her aunt Vi.

But how do you test for a problem when you don’t know what the problem is? In a frantic search to discover the truth about her aunt’s condition, Leah learns she may be a carrier of Fragile X – a leading inherited cause of cognitive impairment, learning disabilities, and autism.

In her search for answers, she uncovers secrets which alter everything she has come to know and trust. Woven into the tapestry is a rollercoaster romance – here too Leah must make tough choices when suddenly faced with shocking revelations.

I’ve set The Trouble With My Aunt in the context of traditional Jewish family life during the past 30 years of the 20th century. I’ve drawn on personal insight, which results in a brutally frank account of the emotional and social dynamics of caring for an intellectually challenged relative, particularly during an era when little or nothing was known about the particular condition or its causes. Happily, though, the book isn’t without humour – well what did you expect? It’s a Jewish family!

• Hedi Lampert will participate in two sessions at the Jewish Literary Festival on 15 March: “Bringing fictional characters to life”, a panel discussion, as well as a conversation with Ilana Gerschlowitz, the co-author of ‘Saving my sons: A journey with autism’.
• ‘The Trouble With My Aunt’ will be available at the festival or available on Amazon, and is soon to be in major bookstores, or contact Hedi to arrange a copy. hedi.lampert@gmail.com