Vinit Shetty
December 9, 2024: We bring you here the blogs of Mr Vinit Shetty, encapsulating his remarkable journey with sensorimotor neuropathy. Though he is no longer with us, his words are a testament to his great fighting spirit. It is hoped that his writings and experience with the disease inspire and resonate with all who read them and open a dialogue among patients, medical fraternity, caregivers, and public policymakers about coping mechanisms, research, accessibility, support, and therapy.
How it unraveled
Life is a journey filled with its share of trials and tribulations, and in my case, it includes living with sensorimotor neuropathy, which is a rare condition that affects my ability to walk and maintain balance. Navigating through the challenges of this condition—from diagnosis to various treatments—has taught me a lot about resilience, the importance of accessible hospital infrastructure, and the power of hope. I’d like to share my story with you.
Understanding neuropathy
Neuropathy is often a misunderstood condition, labelled as “idiopathic” by doctors, meaning its cause is unknown. The impact of neuropathy can vary widely, from mild symptoms to life-altering challenges. Managing the condition requires a combination of medication, rehabilitation, lifestyle adjustments, and various treatments.
The diagnosis
My journey with the disease began in 1990 when my uncle, a doctor, noticed issues with my walking. After visiting numerous doctors and undergoing extensive testing, I was diagnosed with sensorimotor neuropathy.
It was a daunting process, and the uncertainty was overwhelming. When my family first learned about my medical condition, they struggled to accept the reality. The symptoms initially seemed ordinary, like falling or experiencing occasional cramps. But as time went on, the reality of my condition became undeniable. It took effort and determination, both physically and mentally, for both me and my family to come to terms with it.
The first hospital visit
At the age of 13, I had my first hospital visit in Mumbai. The experience was intense, with a series of tests and examinations that felt repetitive but necessary. After the diagnosis was confirmed, my treatment journey began. It was a combination of various approaches such as modern medicine, Ayurveda, homeopathy, holistic, naturopathy, and even stem cell therapy.
Exploring various treatments
Each treatment I underwent had its unique experiences and outcomes:
– Ayurveda:
My experience at an Ayurvedic hospital in Worli included herbal remedies and enemas, which were challenging but provided some relief in terms of energy and symptom reduction.
Holistic, natural and stem cell:
I underwent holistic treatment, naturopathy, and even Stem Cell Therapy, all with varying results and outcomes. All brought some temporary relief.
Emotional challenges and support
The emotional rollercoaster during this journey was intense. Initially, fear and uncertainty overwhelmed me, but with time and understanding, I found a degree of comfort within the hospital walls. I was just a young teenager when I first entered the hospital, and it was a challenging experience. Needles and medical procedures gradually became less intimidating, though the treatments themselves varied in effectiveness. Some, like Ayurveda, had their charms but also challenges, such as dietary restrictions. Others, like the weight loss treatment, left me tired and weak due to strict diets and significant lifestyle changes.
Traveling to hospitals was often tedious, involving long journeys and crowded buses. Compensations were the landscapes and scenic views along the way. The disruption to my regular sleep patterns was another challenge, making it difficult to maintain a balance in my life.
As a young child, I didn’t fully grasp the gravity of my condition. It wasn’t until I overheard a doctor mention that sensorimotor neuropathy was incurable that the reality hit me hard. I felt a significant loss of motivation, but it wasn’t until recently—after 10-15 years of living with the diagnosis—that I began to embrace counselling. For many years, seeking counselling was viewed as a taboo, and I initially resisted it. However, once I started attending sessions, I found they offered a crucial space to express my emotions and release the bottled-up feelings. Despite my early reluctance, counselling has become a vital part of my emotional recovery.
The role of accessible facilities
Throughout my hospital journey, the lack of accessible infrastructure significantly impacted my experience. The absence of ramps, inaccessible restrooms, and navigation through hospital corridors makes it more difficult for the patient. This lack of accessibility not only heightened the physical challenges but also added to the emotional stress and anxiety associated with medical treatments.
Accessible facilities are crucial for patients with conditions like sensorimotor neuropathy, as they ensure that medical care is complemented by an environment that supports and respects the needs of individuals.
A journey of resilience
Living with sensory motor neuropathy has been a journey of resilience. Despite the challenges and emotional turmoil, my experiences with hospitals and treatments have shaped me into who I am today. I continue to face my condition with determination, regularly attending physiotherapy sessions and using an electric wheelchair for mobility. My journey is filled with both hardships and hope, and I’m grateful for the support of my family and the lessons I’ve learned along the way.
As Teresa I. Wright-Johnson said,
“Although you cannot see, it doesn’t cease to be.
Don’t make judgments or assumptions, for you are not me.
Invisible Illness you don’t understand and you probably never will.
Please don’t judge what you can’t comprehend, I am always climbing a hill.”
This blog was originally published in 369ochrestudio.com
(Editor: Vrinda Kumar)