Parents kept my disability a secret – even from me
Growing up, ILANA ESTELLE knew she was different but her parents never admitted it, until her mother’s dying words set her on a path to discover the truth
AS ILANA Estelle sat in a hospital consulting room, she struggled to process what she’d just learned.At the age of 46, she’d been told she had cerebral palsy – a condition her parents knew about and had kept secret from her for her entire life.
“It was enormously difficult for me. There was a lot I needed to come to terms with,” Ilana says.
“I’d always known there was something different about me but I didn’t know what.”
Ilana grew up in Leeds in the 1960s as the third youngest of four children in a respectable family.
But while her three siblings had no health problems, Ilana had underdeveloped muscles in her left arm and leg, meaning her left leg was almost an inch shorter than her right, and her left hand was weaker and smaller.As a child she had to wear special shoes to correct her leg length, but was never told why.
“I was made to wear a quarter-inch heel lift on the outside of my shoe,” she says. “Not being able to fit into normal shoes meant they had to be specially made making my foot look even more deformed.
“I walked with a limp, occasionally tripping when
I got tired. I remember children staring at me in school.
“I knew I was different but I had no idea why,” she adds. “I think my father found it very difficult that I had a disability. I was born at a time when it was brushed under the carpet and he was embarrassed.”
Once a year her father took her to the local hospital to have her leg measured, but the reason was never discussed with Ilana or her siblings. “It wasn’t talked about. It was just a day out of school and we used to go to the sweet shop first,” she says.
In the evenings, Ilana had to do exercises to strengthen her leg.
“My mum told me I couldn’t have a pretty face without having a pretty leg. That’s all I was told.”
As well as struggling to run and play with other children, Ilana found it difficult to keep up with her peers academically.
“I struggled with learning and had problems with my handwriting,” she says. “My neurologist later explained my handwriting was affected because the part of my brain that controls motor skills function is damaged.”
What’s more, Ilana found it tough to make friends. Cerebral palsy affected her emotions, meaning she could come across as immature and have a poor attention span. She was also diagnosed with autism aged 56, which further explained her difficulty in relating to others.
“I didn’t understand why I couldn’t communicate as easily as other children,” says Ilana. “When I tried to talk to my classmates, I could never find the right words. It didn’t make sense to me how other children were just moving towards other children – laughing, dancing, having fun.” As she grew older, Ilana became frustrated at feeling different to everyone else. She started to act differently at home and at school. “Every time somebody spoke to me or if they looked at me the wrong way, I was angry,” she says.
Looking back, Ilana can see now she was struggling to come to terms with her disability, because she was always being told she was the same as other children when it was clear that she wasn’t.
After leaving school, Ilana trained as a PA and in her 20s met her husband Brad in a pub. Ilana gave up work a few years later to look after their two children.
Then, when Ilana was 46, her mum was diagnosed with terminal lung cancer and she finally revealed the truth.
“S“She told me that I was a difficult birth and although I didn’t know anything about my disability at the time, I later learned cerebral palsy is usually caused by an injury to the brain shortly before, during or shortly after birth.”
Shortly afterwards, Ilana’s mum passed away and Ilana decided to investigate her condition. After a visit to her GP, she was referred for an MRI scan and saw a neurologist. It was then she was told she had cerebral palsy. “For the first time everything started to make sense,” she says. “It took me another 10 years to work through everything, but at least it gave me a diagnosis. It gave me hope and I had something that described what I had been living with for the first time.”
WHILE she was saddened to learn about her condition, Ilana was relieved to finally have an answer to the question that had hung over her for her entire life.
“I have always seen my life as a jigsaw puzzle, knowing there was something wrong, physically, mentally and emotionally, but never knowing what. Because I didn’t know what was wrong with me, I hoped I would get better.”
After her diagnosis, Ilana began looking back in her medical notes.
It was then that she discovered a letter from a consultant to her GP when she was two, explaining that she had cerebral palsy. Her parents had known all along.
Although her father was still alive at the time, Ilana didn’t feel able to confront him. She felt he would struggle to come to terms with the discussion. However, she did tell her three siblings about the diagnosis.
“We didn’t discuss it in a lot of detail but they know about my diagnosis,” says Ilana. “I think my siblings find it incredibly hard.As a child I was living in the depths of despair, not knowing what was wrong with me.”
Now, finally knowing about her condition, Ilana finally feels able to be herself. “I started living when I began to piece my disability together and was able to make head and tail of my childhood. That’s when my life really began.”
● To order a copy of Cerebral Palsy: A Story by Ilana Estelle (Red Door, £9.99 + £2.95pp), call the Express Bookshop on 01872 562 310 or visit expressbookshop.co.uk