Survivor’s Story: Abha Khetarpal’s Journey [Polio]
Polio, or poliomyelitis, is a highly contagious viral infection which can damage the nervous system leading to paralysis or even death in some unfortunate cases. The virus enters through the mouth, spreading to all parts of the body. Preventable by immunization, polio can be categorized as either symptomatic or asymptomatic. It can also spread through contaminated water or food. Today, we have Abha Khetarpal, a Delhi-based polio survivor who has been dealing with polio for the last 39 years. Deriving a personal meaning from Darwin’s Theory of Evolution, she says, "If only the fittest member of the species can survive, then I have managed to survive under such acute and intense condition, proving that I am the fittest." In a heart-to-heart conversation with us she took us through her struggle, survival, passion and survival mantras.
Here are the excerpts of the interview.
How old were you when you were told you have polio?
I was three years old when I contracted polio.
How did your family support and encourage you to fight this condition? What were your set of beliefs that helped you through this tough phase?
My family has been my lifeline from the beginning. My parents brought me up like any other child. I was provided with the best possible treatments. They encouraged me, inspired me and taught me to fight. They gave me the best possible education which, I think, is my strength and my most valuable treasure. Apart from my parents I have an inventory of quality relationships with my friends who have always stood by me in all thick and thin. My loving support has always been instrumental in my rehabilitation.
As far as my own set of beliefs is concerned, I developed resilience. Like a rubber ball I bounced back from all the adversities of physical, mental and emotional pains. You may call it my obstinacy or strong desire to LIVE. For me life is very precious and I want to live it fully. I never wanted to drown in the quagmire of helplessness. I prepare myself as a soldier with the only weapon of will power. Since my childhood my father used to compare me with Rana Sanga who got 80 wounds and still continued to fight bravely till he dropped down. Consciously or unconsciously, all those stories of bravery got embedded in my psyche and I tried to fight not with my physical strength but with my mental and spiritual strength. The first thing, which I thought, I needed for that, was to control my mind and my desires. Conditioning of my mind has helped me to come out of the whirlpool of undue and unrealistic expectations from life. And as a result contentment has trickled down itself as the by-product of a conditioned mind. Now I only focus on practical feasibilities rather than roaming around in a dream world of unrealities. Acceptance to the situation and condition has been the key thing in my life. Here acceptance does not mean resignation, but it means acknowledgement of the given situation and working out things in order to adapt accordingly.
How did you manage treatment alongside your regular life?
Getting treated was a kind of regular life for me because it was a matter of survival. Doctors, OPDs, rehab centers, regular physical therapies, massages etc formed a part of my daily routine. I could not attend a regular school. But my studies never took a back seat. I was taught at home by my parents. Friends, games, parties, movies, picnics, hobbies...all these were alien terms for me. The only focus was either on “padhaayi” or on “dawaayi” (studies and medical interventions). I managed to get all my higher education through distance education. It has been a journey from ‘callipers to computers’!
What re-constructive surgeries and procedures did you go through?
You call them re-constructive surgeries...I call them corrective surgeries because re-construction was not all possible at places. Only a few corrections could be done. To straighten the spinal hump from being developed (known as scoliosis in medical language), a 7 inch rod was put in my body with two screws. Then a hip correction was done. In another surgery tendons were transferred in the fingers of my right hand. In yet another surgery a nail was inserted in the smallest finger of my left leg.
What reactions did you get from friends and extended family with regard to your condition? Did you face a lot of unawareness in their behaviour toward you?
Onomatopoeic reactions! A whole lot of “ohhs”, “aahs” and “ufffs”...”ek to ladki upar se aisi beemari! Bechari!!”(A girl, and that too a disabled one...poor girl!) Words of pity and sympathy filled our hearts upto the brim. Uninvited and unwanted suggestions became regular features. Some suggested going to Jhhaad phoonk wale babas and some wanted us to get blessings from those self styled swamis etc.
Definitely yes, there was a lot of unawareness at that time i.e. around 40 years back. And unfortunately, till now only very little has changed. Sitting on a wheelchair still means that you are in a great need of help. A wheelchair user is not an independent being, with no opinions and desires of his or her own. People get conscious while establishing relations with you. Every now and then you are told not to have any expectations from anybody and from any relationship. But on the contrary a whole lot of things are expected from your behaviour. You are expected to be emotionless and a saint like creature. A disabled person is either worthless or wonderful! Abnormal bodies ought not behave as average human beings!
What do you still need to observe to maintain a healthy lifestyle?
Yeah I still need to maintain a healthy lifestyle. Rather, this has become more important now with the age. Weak muscles are prone to get weaker with age and time and so I need to maintain a healthy diet and muscle strengthening exercises. Apart from that I lay more stress on breathing exercises due to the lack of physical activities, the lung functions can get weaker. I am very careful or you may even say fussy about the timings of my food. Discipline is the key word for me.
What advice would you give to someone in a similar situation as yours?
What I would suggest is to keep their mental health intact. Never forget the Mantra that ‘Self Knowledge is the Power’. Know your weaknesses, try to work on them, accept them if they cannot be corrected but try to build up your strengths as much as you can!
But I know every individual is unique. Even if two people have the same disease or problem, their situations can never be 100% same. Their own coping skills, their reactions to their environment and vice versa, their perceptions towards life...all make them different from each other.
Presently working as a Counselor for students with disabilities at UCMS, University College of Medical Sciences & GTB Hospital, New Delhi, Abha also runs a website - www.crossthehurdles.org, where she strive to remove the ever-prevalent mental blocks towards handicap people.
*Image courtesy: © Abha Khetarpal