HYDERABAD: Driven by the passion to create awareness about the lesser-known issues, Farida Raj, a mainstream teacher, remedial educator–turned–author, and an executive committee member of the Multiple Sclerosis Society of India-Hyderabad Chapter (MSSI), penned a book titled “Unbreakable Spirit” that focuses on a disease called Multiple Sclerosis. Farida Raj, a Mumbaikar relocated to Hyderabad (after marriage with Vijay Mohan Raj, a Ranji cricketer and contemporary of Kapil Dev) and made Hyderabad her home for the past 41 years.
Farida has done a lot of work in the area of Specific Learning Difficulties (SLDs). In the past, she authored three insightful books, Breaking Through, Understanding Learning Difficulties and Struggling Minds, on the subject, aiming to empower both teachers and parents in supporting their children’s learning journeys. She has contributed extensively to the B Ed Special conducted by IGNOU and RCI. Noticing a gap in information for women who primarily read Urdu, Farida turned her attention to the reproductive and mental health of women. She penned articles and authored three books in the Urdu language, Hamari Sehat Ki Zamin, Zaviye Zindagi Ke and Iztrab-e-Zindagi, addressing crucial aspects of women’s well-being. Farida Raj has been recognised for her impactful work and honoured with a Lifetime Achievement Award from the Urdu Academy, Government of the State of Telangana. Beyond her literary contributions, Farida is a certified RE & CBT and NLP practitioner, offering psychological counselling to children, adolescents, and parents. She is an active life member of the Craft Council of Telangana, and an advocate for child protection as a member of the NGO “Break the Silence.” On the occasion of her upcoming book release, CE interacts with Farida Raj to know more about her journey with the book.
Tell us more about the book and inspiration behind writing it?
This book is about a disease called Multiple Sclerosis (MS). It is an autoimmune disease. The immune system, which is supposed to protect us against all viruses and bacteria, starts attacking our own system. The nerve fiber which has a covering called myelin. The immune system starts attacking the myelin sheath. So when that covering gets damaged, the nerve fiber, or the nerve cell, is not able to carry the information in a correct manner to the brain. The interpretation of what message is coming doesn’t happen, leading to many different issues. My focus in this book is on invisible signs, like a heat issue, balance problems, and difficulty with swallowing. This disease attacks young people at the age of 20 to 23 onwards, disrupting their peak of youth. When the doctor says there is no cure for it, their dreams are shattered, and fears arise. This book addresses those fears and provides guidance on how to cope.
Why did you name the book “Unbreakable spirit”?
Because when I see these people, they are so full of life despite having this disease. They suffer quietly and carry on with their duties. There are young mothers, homemakers, professionals — all of them carry on without letting the disease define them. They say, ‘We have this, but we will try and do our best.’ So that is what it is, an unbreakable spirit.
Can you mention any significant challenges that you have faced?
The main challenge was that people don’t open up, especially about their personal life. Some professionals working for big firms keep their condition hidden due to the attached stigma. Sometimes its not the stigma, people don’t understand what is MS. Writing this book aims to create awareness about these symptoms. So those who are suffering, showing these symptoms, they will go to the doctor, to a neurologist and get them self tested, because it is in the MRI, or they take a the lumbar puncture, they collect the fluid, and then also it can show that you may have MS.
What inspired your approach in writing this book?
When I embarked on the journey of penning books addressing learning difficulties in children considered normal but struggling with classroom learning, my motivation was rooted in the desire to raise awareness. Having authored three books and numerous articles on the subject, my passion is fuelled by the need to shed light on lesser-known areas. Having moved from Bombay to my current location 40 years ago, I noticed a stark contrast in awareness levels, particularly regarding dyslexia. This realisation prompted me to write, despite lacking a journalistic background, with the aim of creating awareness. Similarly, my latest book on multiple sclerosis serves as another endeavour to illuminate a lesser-known issue.
Can you provide insight into the current state of multiple sclerosis in India in comparison to western countries?
While multiple sclerosis has long been recognised in western countries, awareness in India has only gained momentum in the past 30-40 years. Presently, the registered cases in India amount to a relatively small number, with 2.5 to 3 lakh people reported to have MS. In Hyderabad, the MS Society has 223 registered individuals, but there are likely more undiagnosed cases due to a lack of awareness. The objective of my book is to encourage more people to undergo testing, as there seems to be a disconnect between the symptoms people experience and the association with the disease.
What crucial message or information do you hope your readers take away from your book?
The primary message I aim to convey is the importance of seeking testing and obtaining a diagnosis. Once diagnosed, individuals should make every effort to not let the disease define them. Emphasising the significance of maintaining a normal daily routine and living life to the fullest, I believe that with timely treatment, care, and support, many individuals can lead long, meaningful, and active lives despite their MS diagnosis.
Throughout the writing process, what personal insights have you gained about the disease and the individuals you’ve encountered?
The most impactful realisation throughout the writing process has been the indomitable spirit exhibited by individuals grappling with multiple sclerosis. Despite facing a life-challenging disease, their resilience and determination to live meaningfully have been profound sources of inspiration for me.
This perspective has served as a poignant reminder to not be overwhelmed by trivial disappointments. The title of my book, “Unbreakable Spirit,” captures the essence of this resilience. I’ve also recognised the pivotal role played by care givers, often overlooked in our culture. Whether it’s a spouse, children, or others, the support they provide is crucial. I delve into the importance of caregivers and address the need for them to prioritise their own mental well-being in a dedicated chapter.