Polio, which caused the asymmetrical freezing of my muscles, not only shaped my body, but also moulded my personality. A virus — something that itself exists on the border between being alive and dead — had the power to write the manuscript of my life.
I got polio at the age of three. I don’t have too many memories of the initial period of the infection except for the pain caused by lumber puncture, a procedure to collect and examine cerebrospinal fluid, for which a needle used to be inserted into my spinal canal.
Then started the long and tiring journey of life with a permanent disability. I was different from other children because I had to wear orthotic devices and could not be part of my peer group. The hospital ward, where I had to spend long months for various corrective surgeries, became my school. I literally grew up in a medical environment.
I was much too young to understand what was happening, but I could sense that my parents were putting in relentless effort to rehabilitate me, using what meagre resources they had. I could also sense their anxiety and panic for me. All I knew for sure was that I had to be ‘a good girl’, and that I was not to ‘make trouble.’
And so I did everything I was told. I never threw tantrums while undergoing painful treatments, which included hot packs, splinting, bracing, stretching, and exercises. I fully cooperated, while enduring pain and exhaustion — and I was praised for being a brave and obedient girl who always listened to what the doctors and my parents said.
All this made me believe that survival depended on restraint, that I should disregard my personal desires and emotions. I developed the habit of unquestioning compliance, and became used to denying my own physical and emotional pain. As I gradually became a ‘polio survivor’, I never forgot this ‘proper’ behaviour that I had been prescribed.
When I returned home, I became my parents’ lifetime ‘project.’ We all know that homes in middle class Indian families are mostly inaccessible. My daily activities were impossible to carry out without assistance. It was my father who used to help me put on and take off my leg braces. My parents strove to reincorporate me into the family routine. Despite the crutches and braces that I had to use, they wanted me to learn to ‘keep up’ with others.
I had strong family support — and because I had it, I developed a strong personality and a rock solid belief system centered around the thoughts ‘I can’ and ‘I will.’ I became a ‘doer’. In order to compensate for my so-called physical ‘deficit’ I aimed to out-perform my peers academically. These goals reinforced my precocious behaviour. I studied and simultaneously earned a living. I am the proud possessor of three masters’ degrees.
All my life, I have spent a lot of time taking care of other people — family and friends. The need to do so perhaps came from guilt that I have felt over the years for having relied on others so much. I am now an activist, working relentlessly for the rights of persons with disabilities.
The experience of polio led in this way into me developing a Type A personality. I became a self-denying perfectionist, an overachiever who was always conscious of time going by — since I figured that these were the qualities that would help me to survive this society, which is so full of barriers. Let me explain how this happened.
Because of physical limitations, I used to take much more time than a non-disabled person would take to complete even the simplest tasks. This caused me to become sensitive to time. Now, I always have a ‘to do’ list ready on my cell phone. I have a strong need to be in control of my time, and various alarm clocks constantly run on my system. I have difficulty falling asleep because my mind is always racing. I feel that if I slow down, I’ll never get started again. I refuse to delegate responsibilities, or allow others to assist me even if physical symptoms may prevent me from continuing something.
Unconsciously, I have developed a type of personal radar that is always active. Anything that happens — even the slightest noise — draws my attention.
In order to confront social prejudice, and in order to be accepted, I turned into a hard driving overachiever. This has brought me recognition, including a recent National Award presented by the President of India, which I was given for being a role model.
However, the flip side of this is that I am always scared to express emotion or admit to having physical pain lest the world think of me as being weak. I can’t talk about my pains and problems because I want to defy the assumption that the disabled always complain.
Ironically, I judge my own behaviour on the basis of unachievable ideals of perfection. I fear that if I fail at anything, I will be harshly judged. So I use every ounce of my energy to lead a ‘normal’, ‘successful’ life.
Exhausted, anxious, and fearful of criticism, I have spent my entire life pushing to keep going, and I still push myself even though I know I shouldn’t.
Now is the time when my personality is shaping my disability. My Type A behaviour has been instrumental in causing symptoms of Post-polio Syndrome.This is a condition characterised by new weakening in one’s muscles.
My body is telling me to slow down, but my conditioning, my insecurities and fear keep telling me to run.
Over-achievement does not come for free. Type A people are subject to tremendous amounts of stress. I remain locked in a constant race against the clock. I quickly become impatient with delays and unproductive time, schedule commitments too tightly, and try to do more than one thing at a time. The result is that I have become hypertensive.
Whatever the cause, the result is a cruel return of symptoms of polio. My withered limbs, because of heavy leg braces made of iron and built-up shoes that I have worn for the whole of my life, now face the possibility of further weakening. Physical over-exertion and emotional stress are further disabling me.
Life has come a full circle. I now have to re-establish my relationship with the medical fraternity — physicians, physiologists, and occupational and physical therapists so that I can manage my current physical condition. I am told to keep a daily log of activities, perceived exertion, fatigue, muscle weakness, pain, emotional stress, thoughts and emotions in order to document symptoms and to modify my behavioural patterns.
But unfortunately there are now compliance problems. I have difficulty keeping the log because it hinders the compulsive performance of my tasks. I even have trouble in complying with the behavioural plan. I am unable to change my schedules and refuse to alter my lifestyle, as such changes would directly conflict with my Type A behaviour.
Now I have to deal with unpredictable symptoms which are extremely unsettling. Sometimes there are mixed feelings of being helpless, of being out of control, of being vulnerable. I won’t deny the fact that I experience denial, anger, and frustration quite often.
There is a paradoxical situation. I was once praised and recognised for confronting obstacles, and for my productivity. Now suddenly I find myself unable to do much.
I am starting to learn how to value myself outside my accomplishments. I want people to recognise and love me for who I am, and not for what I do. I am trying to focus on what I can get done, not what I can’t get done.
I am trying not to evaluate myself based on what I was able to do ten or fifteen years ago. I realise that now, I have to monitor myself and have realistic expectations from my body as my strength decreases.
Abha Khetarpal is a writer, counsellor, teacher, social worker, motivational speaker and activist. She is a National Awardee, one of the 100 Women Achievers in India, and has been honoured with a Woman of Substance Award. Being a woman with disability, her major focus remains on women with disabilities, for whom she has authored manuals on health and hygiene.
Featured image credit: Alia Sinha