NICHE Advocacy Foundation: the story behind

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Author: Dr. Poornima, Neurologist, Director, NICHE Advocacy Foundation

Why this had to be done….

As a neurologist I see patients with many acute and chronic disorders. As I sit in my clinic and patients walk in, my mind is multitasking through 3 zones:  The first zone is the Neurologist, engrossed in the history and examination of the patient in front of me. The other is fathoming the ‘person’ beyond the patient state, intrigued by this new person who trusts me with all the secrets and worries. And the third is looking at the care giver accompanying the patient, who is also going through an experience for which he/she has not been trained, and whose hospital file will not be made. Not yet. 

Let us glimpse into a regular day in my neurology clinic. 

The first patient walks in. He is a young college student who is unable to sleep and keeps getting bouts of vertigo and headaches. And he flings his old files on my table, frustrated, urging me to save him from himself. Driven by peer pressure into a lifestyle of mild to moderate substance abuse, he is forced to stay awake at night because nobody sleeps (koi nahi sotaa isliye koi nahi sotaa: nobody sleeps because nobody sleeps – that’s peer pressure for you). ……I give an additional reference to a psychiatric colleague, to help me manage him in a holistic manner. Due to target driven lifestyle of the world and especially in India, where we glorify achievements and marks, rather than attitude and persona, I see an increasing number of stress and life style induced Sleep Disorders, Panic Attacks, Migraine, Psychosomatic disorders and related states starting from the age of 14-15 years, when the race officially starts. 

One in 6 patients in a neurology OPD have what is called, a Functional Neurological Disorder. This is a condition where cause is not found in any tests. Very often psychological issues seem to be at the root of it. The root of psychological issues is in the parenting, grooming, life style, stress levels, personality traits and other factors.

The next patient is a young lady with epilepsy, about to get married. She has been my patient for the past 8 years, since she was in school. She is well controlled and is now working in a good company. Since that past 2 years, she usually comes to my clinic alone. But, her parents have come along today as they want to discuss about her marriage. I know this is not about her epilepsy this time. It’s way beyond that. A fifteen minute discussion follows about whether to disclose her epilepsy to the ‘in-laws’ or not. Actually, 80 % people with epilepsy are able to live fairly normal lives. Yet, even in 2020, there is still a lot of stigma linked with epilepsy, especially in India. My work in the Indian Epilepsy Association, Nagpur Chapter, as the secretary and later President, led me to understand that it is not people with epilepsy, but the rest of the society that needs to be taught empathy, tolerance and compassion along with creating awareness and understanding of the disease. 

Then comes in a 70 year old gentleman with a failing memory and behaviour changes over the past 2 years. He is accompanied by his worried daughter, who has her own family and household to look after.  On examining him I realise he has dementia. While giving him a list of tests to be done, I think about ways to retain his functionality. As I call up my Neuropsychology colleague to discuss his case, the other part of my mind wonders how much functionality he had achieved before dementia started. Had this individual reached the optimum level of emotional and mental development that his brain could allow? Did the world provide him with the opportunities and guidance to be the best version of himself? While I think of ‘RE-habilitation’ I wonder is there anything called ‘HABILITATION’? Has the college student, my first patient of the day, been exposed to the opportunities to  habilitate himself? 

I also wonder how and for how long the daughter will manage. I wonder what will happen to her health, will she ever ask for help for herself as she struggles between managing her fathers chronic illness and grooming her own kids and looking after her own household and struggling to retain her own identity and individuality. I wonder when her hospital file will be made? 

I also have a visit to the ICU scheduled, where currently an 85 year old woman is admitted with a bad stroke. She has been signalling to us to remove her ventilator and allow her to go. Her two son’s are, however, caught up in a parallel family drama. And it has been 40 days, they are arguing that everything should be done for her. It hurts me that people loose their dignity and autonomy in their last days and they are stripped of all control as they lie waiting for the ultimate common truth of us all: death! Despite the medical advances, death still is our common destination. However, we as a species have not been able to convert death into good death. India is one of the worst countries to die in. Our misplaced compassion and emotional adolescence become large hurdles. Shouldn’t we change the way we in India see death through our emotional perspective? 

How can the concept of Neuroplasticity be used for personal growth? Can age old paradigms of behaviour be changed? Can a person be stimulated to want to change? As humans, we have not yet standardised a definite method for personal growth in the emotional realm. Many avenues are open for everyone. There is the path of intellect, that of spirituality and meditation, the path of organised religion and the path of work and action. However, how many of us opt to grow up as against just growing old? 

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Questions bother me as I work through my days. 

And so my days work goes on and on. And with every patient I see, every question that arises in my mind, the urge to step beyond prescriptions grows in me till it becomes a driving force for my passion project, NICHE Advocacy Foundation. 

I had a rough childhood, with a non-working father and a single mother raising three children through her focused hard work. I was blessed to be wired in a positive manner and I instinctively developed strategies to deal with the negativities around me. Some were adequate and took me to my goals, while some were inadequate, and left emotional scars. I have always wanted to share my personal positive strategies with others in need. 

I suffer from an Incurable creative streak. I am an EMPATH. I have empowered myself through personal skill building.

With my inherent love for people and their minds, the choice of a medical career was a natural course of action. As I became a professional, I also walked the path of self discovery. Parenting my unique son has been a process of personal growth. I have met many mentors along the way who left their mark on me. I am an observational learner and I still meet people from whom I constantly learn. The meditation retreat of Vipassana has been a transformational turning point for me, along with Chinmay mission classes on Vedanta. I have learnt to listen to my inner self. I have listened to my calling and have taken up this passion project. 

An aware and empowered EMPATH, I have the passion, I have the talent and the society needs this mission. There is no reason not  to do this. This has to be done, In all fairness to the cause and the dream! And. It is. Being done. And this is my exclusive NICHE.