Cerebral Palsy A Story Finding the Calm after the Storm by Ilana Estelle - A Story of Hope

Ilana’s book is an extension of her blog - The CP Diary which chronicles her life as a Cerebral Palsy patient. It has also become a community for people who are also diagnosed with Cerebral Palsy. Her blog is more expansive as it dates back to 2010.

However, her book is an intimate look at a woman’s life with Cerebral Palsy. This book makes me confront my own view and perception on how to deal with people who have medical conditions that outwardly affect their appearance and their cognitive, emotional, and social struggles.

In this book, it gave Cerebral Palsy a name, a face, and a life. It tells me that Ilana is more than a checklist of symptoms. She is human, just like you and I, she also feels pain – both physical and emotional, depression, anger, love, and the most important of all, hope.

The physical symptoms of cerebral palsy are made real because it is being experienced by someone who lives and breathes. The book makes me aware that people experience these difficult physical symptoms. The symptoms are no longer just a checklist to confirm a diagnosis – but a painful reality that some people live with every day.

I usually look away from people with Cerebral Palsy not because I’m unkind, but I feel pain for them. I also feel pity. It’s difficult for me to see how they live with their disability. 20 years ago, during my internship at a special school, I assisted in the therapy of a child with cerebral palsy. Although I was physically present at the child’s session, my mind was elsewhere because I didn’t want to see or feel the child’s difficulties. After my internship, I tried to erase all the memories of that child so I wouldn’t experience profound sadness.

This book makes me realize that patients don’t need pity. What they need is understanding and a support system that can make them function in their pace without making them feel like burdens. We have to understand that people diagnosed with Cerebral Palsy may be a bit slower in their thought processes, so we must not hurry them or get impatient. If they ask for our help, we should extend our hand not because we don’t want them to go on their way, but we want to show them that this world is not full of insensitive people.

Ilana’s childhood was marred with difficulties in physical and emotional milestones as her illness made the usual things impossible for her to do. She was even misdiagnosed at first with spastic monoparesis in her childhood. Reading this story makes me confront my emotions – it forces me to feel the pain and sadness and hope for Ilana.

Despite the anger and frustration, Ilana is hopeful. The hope comes from not knowing what might happen. To some, this might scary, but the unknown makes her think that there was something else left to be uncovered.

The physical disability also takes a toll on Ilana. We tend to forget that aside from the physical pain that these patients experience, they also have to cope with the stress, anxiety, and depression caused by the disability. It’s an eye-opener that we cannot just dismiss their feelings – expecting them to be hopeful day in and day out is something that we shouldn’t demand from them because we never really know what they go through.

This book also highlights the importance of intuition and listening to your needs and putting them first. The more she became aware of her limitations, the more she used those to her advantage to succeed in her career and education.

It gives hope to the reader that your weakness can be your guide to know what you can do best. Her diary, allowed her to put her feelings and thoughts into context. Despite her diagnosis of cerebral palsy at the age of 46, and autism at 56, Ilana has survived the struggles with grace.

This book tells us that we are not victims of circumstances, but we have a choice on how we live. I’m diagnosed with Bipolar Mood Disorder. Although our conditions are completely different. We share emotional struggles like depression. I have mood swings that are hard to control without therapy. It is sometimes challenging to see the positive side of life when things so south for me.

Ilana could have become bitter and chose to blame everyone in her life, but she consciously chooses to be realistic and hopeful about her condition. She still chooses to achieve greater goals in life. She refuses to resign to her fate. She teaches us that there are things that we all cannot and can control. We can work with those things that we can control.

In the process, we can inspire to change the system the worked against us so other people can live a better life. This book empowers people with disabilities and illness – we are more than our diagnosis. Ilana refused to be defined by her Cerebral Palsy alone. That is inspiring.

Ilana also offers sound advice – “Other disabled people can concentrate on things their disability doesn’t prevent them from doing well, and don’t regret the things it interferes with. Don’t be disabled in spirit as well as physically.” These words are powerful, inspiring, and most importantly – doable.

The description of how the brain works is very easy to understand. There are no complicated scientific terms. The parts of the brain’s structures are easy to understand, thus it’s easy for the reader to comprehend the difficulties of a person living with cerebral palsy.

Her letter to Cerebral Palsy is full of acceptance, but she refuses to resign to her fate. Instead, in the letter, Ilana addressed Cerebral Palsy as a companion that she learned to work with as she live her life with grace.

Ilana also highlights the importance of mental health. The body and the mind are interlinked intimately that it can never be broken. Cerebral Palsy’s physical symptoms can take a toll on the mind. We should never dismiss anyone’s emotional pain – especially those who are suffering from a disability. Ilana describes that it’s OK to sometimes feel down and even angry at what she was dealt with, but the most important thing is to rise back up.

The message of hope in this book is rooted in reality. It doesn’t portray the false sweet promises of positivity. It’s anchored on real human experiences of someone who is physically disabled – that some days are difficult to deal with. That sometimes, the disability can overwhelm everyone.

She also acknowledges that with her condition, the complications will get worse as the brain continues to deteriorate. The knowledge of that fact is frightening. But instead of giving up, she chooses to maintain a healthy lifestyle.

Some people experience more difficulties with disabilities because their own family members, to a certain degree resent them. Ilana states that if we want society’s perception and treatment with people with disabilities to change, it must start with the home. Family members should be the first ones to show kindness and compassion, and the rest will follow.

Her argument that disability should be considered normal to achieve inclusivity may raise some eyebrows. How can someone who is different from the rest of the population be considered normal? They are two separate concepts – but when you think about it, inclusivity means accepting that everyone who is differently-abled can also contribute something positive to society.

Ilana wrote that we as a society, still view them with pity. That we are still awkward around them, though it’s a normal human reaction. Ilana offers a helpful guide on how we should treat family members with disabilities. The book uses actionable terms in place of abstract concepts. She explains compassion is asking what the individual needs. She explains acceptance is engaging with conversation.

This book is not your typical self-help or inspirational book. It offers more than positive thinking that other writers peddle as life-changing. Ilana struggles and triumphs are raw because she doesn’t try to portray herself as someone who has overcome every challenge in one fell swoop. She is able to balance her emotional experiences, without the dramatic flair. The book is effective in its portrayal of her struggles and successes because they are rooted in her truth.

She still lives with her medical reality though it is filled with trips to doctors, countless tests, physical and emotional struggles, and her emotional struggles. Despite all the stacks being against her, she doesn’t lose hope and inspires people who are differently-abled to embrace their condition with grace.