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Former Bahrain resident Lana Murad Bataineh, who was diagnosed with a progressive nervous system disease 16 years ago, is sharing her journey in a tell-all memoir to inspire people to never give up or lose hope.
The Jordanian mother-of-three suffers from Amyotrophic lateral sclerosis (ALS) which affects nerve cells in the brain and spinal cord, causing loss of muscle control.
Lana lost the use of her limbs first and eventually her ability to speak ... but she didn’t lose her voice.
She started a blog called Loofy Online, based on a nickname given by her sons, using an eye gaze device to type out her thoughts. This resulted in tens of thousands of followers and became the inspiration for her book entitled Choosing Love.
“Never in my wildest dreams did I think that it would reach so many people from all over the world,” said Lana, 60, who worked and lived in Bahrain for 10 years. “It started as an idea put forward to me by my youngest son, Karim, to express my thoughts and feelings.
“The reaction was overwhelming and with each piece of writing, the readership kept growing. I started expressing myself and reconnecting with people after living in silence for so long.
“Being told that my blog has helped make someone feel less alone is so rewarding; it is a form of healing and cleansing of the soul.
“So the writing grew, along with the circle of healing, therapy, and inspiration between myself and the readers, into this book.”
The 82-page paperback and e-book, published by Austin Macauley Publishers, will share how Lana overcame obstacles of living with ALS and how she found her inner strength through the power of love.
“Love holds the transformative power to alter the situation - one just has to choose it,” she added.
“What I hope people take away from this book is inspiration. I hope people feel inspired to count their blessings and appreciate the power of love. Furthermore, I would like it to reach ALS patients around the world to give them hope that you can persevere and live with this disease.
“For me, it came out of nowhere. The doctors still don’t know the root cause which is a major reason why we still don’t have a cure.
“Statistics tell us that in 10 per cent of ALS patients, it is hereditary but, in my case, there is no one in my family that has had it.”
Lana first felt something was wrong in 2004, at the age of 44, while she was on a family trip in the US.
She was diagnosed by specialists in John Hopkins University Hospital in Baltimore and they also told her that she should get her affairs in order. Doctors also told her that she had two to five years left to live.
“This is not easy to talk about and I had to muster up the courage to open up about these moments in the book,” she explained. “The first most challenging moment was losing my ability to walk.
“Gradually, I started losing control over my extremities. Just like that, I lost my independence and my life would never be the same. I would have this frightening image of being confined to a wheelchair, and found myself praying night and day that the dreaded image would not come true. Unfortunately, it did.
“Sitting in my wheelchair for the first time was probably the second worst day of my life, after being told that I had ALS. It felt like I had been given a life sentence.
“I had to learn patience, tolerance, acceptance and perseverance like no other time in my life. Finally, was the most devastating attack – my voice.
“I was silenced; my ability to communicate was stolen away from me, leaving me trapped in a useless body with so many unspoken words in my mind.
“Despite digging deep into my faith, I could not find the strength to accept that I could not give advice, share a joke, discuss life, have a conversation, congratulate, or simply say ‘I love you’ to my children and husband.
“Frustration and bitterness were building up inside me, I was sinking, and, at that point, it felt like I had hit rock bottom.”
Her world changed when her husband, Marwan, and brother, Samir, found the eye-tracking technology device.
“With this new voice came immense happiness, new possibilities and new dreams,” said Lana who now lives in Jordan. “From the day it arrived – two years after I was diagnosed – nobody has been able to silence me.
“Remember, ALS is not a life sentence. Yes, it slowly takes away your physical ability to do anything really. But my mind, my spirit and my happiness - those belong to me.
“I choose to be happy and to love. For anyone reading this book, I hope you can see that no matter what is going on in life, ultimately you have a choice.”
A percentage of the book proceeds will be donated to ALS charities that support patients and their families and to fund research in finding a cure.
The book can be purchased by visiting www.austinmacauley.ae/books/choosing-love/ and it’s also available on Amazon as well as book stores.
For details, follow @Instaloofy on Instagram.
