Struggling for decades with an undiagnosed disorder
Ilana Estelle lived for 46 years before finding out cerebral palsy was the cause of many of her struggles. She has written a book on her journey. Laura Reid reports.
FOR 46 years, Ilana Estelle was unaware she was living with cerebral palsy. Her constant physical and mental struggles made her feel misunderstood, frustrated and alone – and it took her four decades to find out why.
Months after she was finally diagnosed in 2009, Ilana, who lives in Leeds, set up a website – The CP Diary – to blog about her disability for the first time and share her experiences with others.
And now, she has written part memoir, part motivational guide Cerebral Palsy A Story: Finding the Calm After the Storm.
“The book is part memoir, part selfhelp,” she says. “It is a book of positivity and hope. Through my experiences and lessons, I create inspiring messages of positivity, mental and physical health, resilience and change.
“The book allows others to see that their lives are for them to take control. Through my experiences, I prove we can.”
The book is an open and honest documentation of Ilana’s journey from an angry and isolated child, knowing something was wrong but not knowing what, to a courageous woman who has learnt to understand her condition and advocates positivity and empathy.
At two-years-old, Ilana was diagnosed with spastic monoparesis, though it was unknown to her in her childhood and through most of her adult life. A child of the 1960s, she experienced her disability being brushed under the carpet, her struggles dismissed and rarely spoken about.
“Not knowing gave me hope, because each day was a new day and each new day gave me renewed hope that I would find out what was wrong and that I would get better,” she says.
“That thought never left me and got me through some very tough years. Sadly, not knowing about my disability remained a constant challenge, particularly in school where I continually struggled and didn’t know why. Not knowing about my disability over the years became my biggest struggle. I was angry that I knew I dealt with something, but I didn’t know what that something was.”
When Ilana was in her mid-forties, her mother, then terminally-ill told her that her birth had been a difficult one. “It must have been something I subconsciously held on to,” Ilana writes, “because when she passed, I decided to find out what had been wrong with me for all these years.”
Her diagnosis as a toddler had not been correct. After a visit to her GP and an MRI scan, it was confirmed to Ilana that she has a form of cerebral palsy – the name for a group of lifelong conditions that affect movement and co-ordination, caused by a problem with the brain before, during or soon after birth. It would be another ten years before she found out she also has autism.
“Finding out about the ‘real me’ has been a unique and life-changing experience that has forced me to stand back and look at my life anew,” Ilana writes.
“It fundamentally changed the way
I feel about what happened to me, and about myself.” Ilana decided to write the book to learn more about herself and her symptoms and make sense of the first four decades of her life.
“Initially, I wanted to know what was wrong with me and for me to able to piece my symptoms together for the first time,” she says. “I knew I struggled with certain elements of a disability.
“Having completed the book now, I understand my disability and myself so much better. Writing the book has been a cathartic experience, it has brought me understanding where I had none. I would like my readers to take away the overriding message of positivity and that we very much have the tools to change our lives where that change is necessary.”
Ilana’s book is out now.