Wednesday, May 4, 2022

Book Blitz - Cerebral Palsy: A Story: Finding the Calm After the Storm by Ilana Estelle

Cerebral Palsy: A Story tour banner
Welcome to my stop on the book blitz for Cerebral Palsy: A Story by Ilana Estelle. This book blitz was organized by Lola's Blog Tours. On my stop, I have an excerpt from the book as well as an interesting interview with the author. Be sure to visit the other stops on the blitz for more content. Enjoy!
Cerebral Palsy: A Story
Title: Cerebral Palsy: A Story: Finding the Calm After the Storm
Author: Ilana Estelle
Publisher: RedDoor Press
Publication Date: December 29th 2019
Print Length: 204 pages
Genre: Motivational Self-Help Memoir

Living with cerebral palsy is enormously difficult. But what if you never knew you had it? This is the incredible story of Ilana Stankler.

Born the second of premature twins, from a young age Ilana knew she was different, but for all the wrong reasons. A child of the 60s, Ilana experienced first-hand the way that disability was so often brushed under the carpet and not spoken about. Her constant physical and mental struggles made her feel isolated, alone, frustrated, and misunderstood… it took 46 years for her to find out why.

Part memoir, part motivational guide, Cerebral Palsy: A Story is Ilana’s open and honest journey from an angry, confused child, knowing something was wrong, but not knowing what, to the ‘real’ her – a courageous woman using her experiences and lessons to create inspiring messages about mental and physical health, positivity, resilience and change.

What is it like living with cerebral palsy? I cannot answer that question, as for 46 years of my life I never knew that’s what I had. It was only in March 2009 that I was finally diagnosed with cerebral palsy. I was born the second of premature twins.

My formative years were enormously difficult for me. I was an angry child. Some days I felt isolated, angry and misunderstood. Other days I felt frustrated and alone because I had no idea what I was dealing with. I was also out of touch with my own thoughts, because I had no understanding about my physical, mental and emotional issues. My issues were never brought up unless I talked about them, then they were quickly dismissed as if the condition didn’t exist.

When my twin was beginning to crawl, I would fall, try to get up, then fall again. It was never something I could control. Mum noticed more or less straight away. My dad, on the other hand, was not unduly concerned, and said everything would be fine.

Growing up, I felt different for all the wrong reasons. I knew there were things I struggled with. Although I didn’t not like myself, I didn’t like being so angry, although every now and again my kind side would appear, and I would somehow be able to separate the two issues.

Although I spent a lot of my formative years being angry, it would go on to take 49 years for my father to say that I was the most kind, caring and considerate of his children. In order to earn his acceptance on a disability I didn’t know I had, I found myself conforming more than any of my other siblings.

Mum tried to deal with me but couldn’t cope. She was always singling me out to do exercises, at a time when my siblings were doing something they wanted to do. I became irritated with this, and nine times out of ten I would fight and become angry at the injustice of it all.

Through research I have since found out the original diagnosis of Spastic Monoparesis at the age of two wasn’t correct, because I have two limbs affected not one, and my leg isn’t spastic. This diagnosis was unknown to me at the time and was hidden.

Over the years I have had to work everything out for myself, to bring my symptoms and the right diagnosis together. I have little muscle tone from the hip to the ankle on my left side. I have a ‘foot drop’ and my leg on my left side is ¾” shorter than my right side. I also have a bunion because of my ‘foot drop’. This all explains why as a child I would drag my leg and walk toe-heel all the time.

I hated looking at myself in the mirror. When I was standing straight, I was lopsided because of a leg length difference and I couldn’t bear to look. When I spoke to mum about my being lopsided, she would often say ‘I couldn’t have a pretty face without a pretty leg.’ With hindsight without her realising, she confirmed she was also aware of my diagnosis.

When I wore skirts, the lack of muscle tone in my left leg was visible so people stared. I limped and tripped when I got tired. I hated that. I also hated that I walked toe-heel that I dragged my leg and I couldn’t pick my foot up. I hated that I struggled to fit into shoes and that when I did manage to get shoes to fit, they wore differently. I was also upset at having to wear a heel lift on the outside of my shoe to compensate for my leg length difference, and that eventually I had to have shoes made for me that made my foot look even more deformed.

I struggled with my handwriting and I hated not being able to write spontaneously in front of anyone. Writing a cheque at a till was difficult, writing anything, in fact. Since my cerebral palsy diagnosis, my neurologist has explained that the part of the brain that controls my motor skills functions is also affected, so that now explains the problem with my handwriting.

As a consequence of my parents wanting me to be the same as my siblings, my issues lay dormant for many years. I lacked mental and emotional support. It didn’t help that I was born in the 1960s, when disability was brushed under the carpet. That can be no excuse.

I was told by the specialist who confirmed my diagnosis, that I was lucky, because of my disability, I would have been considered a spastic and would have had to attend a special needs school. He also said I would have had to have worn callipers, and that having my issues ignored was probably a better option.

Until the age of 15, I went to physiotherapy once a week, and the Athletic Institute for exercises once a year and the hospital once a year for a check-up. All those visits seemed to eat into my childhood.

But not knowing what my condition was gave me a quiet confidence that tomorrow was another day, things would change, and I would get better. To this day I believe it was because I had no idea of what I was dealing with; it was the not knowing that gave me hope.
Ilana Estelle
Ilana Estelle was born with a disability she didn’t know she had until the age of 46, when something her mum said caused her to look further into her disability and sight of her medical notes revealed that she had been diagnosed with cerebral palsy at the age of 2.

That discovery turned out to be a unique and life-changing experience that has forced Ilana to stand back and look at her life’s experiences differently. On receipt of her diagnosis, Ilana set up her website, The CP Diary, and uses her experiences to explore her emotional and physical health, with an inspiring message advocating positivity, resilience and change.

Ilana likes to spend her days writing and blogging about anything that contributes to her health and wellbeing. She is an animal advocate and is passionate about environmental issues. When she is not writing or tending to her blog, Ilana enjoys days out exploring the Yorkshire countryside.

Ilana lives with her husband and their much-loved cat, in Yorkshire. Her grown up son and daughter both live in London.

- How long have you been using your intuition for?

The honest answer is I don’t know for sure, but it feels as though it’s been with me my whole life. Even as a child I was naturally intuitive, but I didn’t know how to use my intuition, or what it was. It’s one of the reasons I remained stuck, unable to move on with my life for many years.

I would say I have been using my intuition fully since my mid early 30’s and I am now in my fifties. Living with autism, it has become my eyes and ears to being able to live my life comfortably, in an able-bodied world.

- Is there anything you would change with your writing?

I can honestly say I am happy with how and what I write. My writing has brought clarity into what was a confusing life around a disability I didn’t know I had. Where I didn’t understand I now understand, where I once struggled to find clarity, I now have it.

My writing has brought about a sense of calm and reasoning in a life that I had no answers for. My writing and the way I write has allowed me to bring a certain acceptance that I didn’t have before. If I had my time again, there is nothing I would change with my writing, but I would change some of my life's experiences.

- Is your book original and unique?

I have been told that my writing is totally original and unique because I write about my individual experiences from a universal perspective, to help others. I have come across many self-help books, but I have never come across a book where the author, writes from a universal standpoint to produce a combined memoir and self-help book.

- Which part of the book was emotionally the most difficult to write?

I found the whole of the writing process very emotional, as it was the first time that I had confronted and come to terms with my life's experiences, but I would say that writing ‘My Story’ was emotionally the most difficult.

When you write about your own experiences and you recall situations and things that have happened to you and how those experiences made you feel at the time, it can bring back memories, and strong feelings that can be difficult to re-live and shift.

As long as you write from the heart and tell your truth in a way that is appropriate to those close to you, it is easier to let go. Through my spiritual beliefs, I believe it is important to tell your truth. For me experiencing those emotions and finding a place for those feelings was a key part of the healing process.

- How important is social media nowadays to the writing and publishing process?

Social media has become the most significant marketing tool and is essential to both the writing and publishing processes and to getting your 'brand' out there. But it’s not just a case of putting your brand on social media and expecting others to pick it up, it is important to be proactive, to manage social media to your advantage. I spend a lot of time on social media, sharing, liking, and retweeting other people’s posts and generally interacting with others who share similar interests.

Social media accounts allow you to showcase your work, share posts and content that allows you to highlight you and your brand. It is important for your brand to get coverage, for others to notice you, for you to notice other people and their brands and for us to support one another.

Through social media, you can target and attract an audience, whether you’re trying to target a specific audience, that would value learning about your brand, reaching out to an audience through social media has never been easier.

It helps with the writing and publishing process, but the key to one’s success is how much time and effort you put into advertising your brand once you’re through the writing and publishing process.

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