Today I’m on the book tour for Cerebral Palsy A Story and I have an extract for you, if you’ve been with me a while you’ll know that I read and reviewed this book a couple of years ago. Thank you to Zoé at Zooloos Book Tours for organising it and inviting me to take part.
Before I post my extract.. let me tell you about the book and the author 🙂
Synopsis: Living with cerebral palsy is enormously difficult. But what if you never knew you had it?
This is the incredible story of Ilana Estelle.
Born the second of premature twins, an hour apart, 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, at the time, so often brushed under the carpet, 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: My story is Ilana’s open and honest journey from an angry, confused child, knowing something was wrong, not knowing what was wrong, what her disability was, or that there was a diagnosis – to the ‘real’ her – a courageous woman using her experiences and lessons to create inspiring messages about mental and physical health, resilience and change.
About the Author:
Ilana was born with a disability she didn’t know she had until the age of 46, when through her medical notes she discovered 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 experiences differently. On her late 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 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 to 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.
And now for the extract.
Cerebral Palsy: ‘A Story’
Conclusion to the book…
If I had known about my cerebral palsy when it was initially diagnosed at the age of two, I would never have gone down the diagnosis route at the age of forty-six and I would never have started The CP Diary and my personal cerebral palsy journey.
Although I wouldn’t want others to have gone through my experiences, I do recognise the positives in having them. I also know that had my parents acted on my disability, and found out about all my symptoms, I would have had very little to think or write about. My thoughts and feelings, everything I have had to work through, have come about because I was never told of my diagnosis and then finding out the initial diagnosis was wrong. The correct diagnosis is ‘mild hemiparesis cerebral palsy’. I could never have known without the further research into my symptoms.
I know now that I also have autism. Although when I was born, there was little known about autism, it is clear my case had nothing to do with that. Due to family circumstances,I slipped through the net. Also, what happened to me, and the fact that I only got to find out about this as an adult, would be unlikely to happen again because children are now routinely diagnosed.
Although my parents have inadvertently paved the way for me to find out about my disability, there is no doubt that my journey down this path started the day I was born.
Decisions were made around my disability that didn’t allow me to grow mentally, emotionally, or spiritually, for me to be comfortable in my own skin. Fundamentally, human beings get things wrong, but I believe we have the power in us to find understanding.
Mistakes are made and the human condition is inevitably flawed, but it’s up to us as individuals to find ways to make things better. As ‘my story’ shows, it can be done.
Working through my experiences has made for my deeper understanding and that allows for the jigsaw to be completed. I cannot change my experiences, what I went through, but I can continue to look for acceptance on the things I still struggle with. I’m not angry or bitter at what I’ve been through, that’s not my way and there would be no point. Instead, I draw strength from my writing and use my experiences to bring understanding to why my life had to be this way.
Without my experiences to draw upon for inspiration, I couldn’t have done and achieved what I have with my life, or with my blog. Trauma, or anything else you want to call it, is never okay: but I understand. I know that without my experiences, I would never have become an author, a writer and blogger. And whilst I cannot change my experiences, my blogs act as a reminder that there is always a message, a silver lining, and a way through our experiences.
Every child should know what they deal with, it is their entitlement. No child should have to live in the dark. Not knowing about my cerebral palsy or autism meant I needed to take the initiative, to learn about my diagnoses and to understand all of my symptoms. My symptoms needed to fit my experiences.
Over the years although my brain had already compensated, I did have an inkling of how I presented. It was important to me that others understood ‘me’. I wanted to know: I needed to understand myself.
I’m not sure how old I was when it began to dawn on me that I might never know about my disability, or what I was dealing with, and that I might have to go to the grave not knowing. I could never have foreseen then how my life was going to change, but I go back to hope. I also know that without writing this book, I could never have achieved this level of understanding.
I find it difficult to comprehend that while others knew my symptoms would not improve, I continued to believe that tomorrow was another day and that eventually I would get better. I always believed that what I had was temporary because I didn’t know, and that gave me the hope. Then finding out at forty-six that I had cerebral palsy and knowing I would never get better, dashed the hopes I’d been living with as a child. Difficult to hear, and difficult to work through, I felt I had no choice but to pick myself back up.
Now having overcome so many difficulties and having come through to tell ‘a tale’, I am proud of myself and my achievements, and the opportunities and the people I have come into contact with along the way. I am thankful.
If this book sounds like something you’ll enjoy it can be found here!