Letter from India: Happy Feet

I was born with a physical deformity in both legs. Gradually, at age 2,  I began to walk with deformed feet, but with great difficulty. My childhood was full of incidents of falling down on the village road, especially during the rainy season on my way to school. The road was so slippery that I could not balance myself. Every day I used to carry extra clothes so I could change before class started and be clean and dry. I could never wear normal shoes.

 

I went to college in a nearby town. It too was a very tough experience, as I had to walk barefoot on hot, blacktop roads in the summer. The uneven, stony approach to the college was very difficult to navigate. It was a depressing period in my life.

 

One day in 1993, as I entered the chemistry department, a lecturer, Panda Sir, called me and suggested that I refrain from entering the department barefoot—I  now had to wear shoes or slippers. Panda Sir suggested that I meet a cobbler who made shoes for deformed feet like mine. I met the cobbler who made a pair of sandals for me that helped alleviate the pain. Gradually, my feet bent into a shape that enabled me to walk using only my toes. Now, in college, I could walk quickly, ride a bicycle, play cricket, and more with the specially-made shoes. Over the course of eight years the shoes were modified from time to time. By 2001 I had begun my professional work, which involved visiting tribal areas in the hilly, interior regions of Central India. But, all was not great: falling down and getting hurt, fatigue, and physical pain were constants in my life.

 

Life went on this way for thirty years until I visited the United States on a fellowship for the “Human Rights Advocacy Programme.” On August 15, 2007, I arrived at New York’s Columbia University. I was enjoying the classes, making friends with people from all over the world, visiting places, experiencing new foods. I was amazed with the immense cultural diversity compacted there. New York is truly a potpourri, a melting pot. And then there was snow…  Nothing the night before when we went to sleep… and the next morning, when we opened our windows, there was this huge expanse of powdery, soft, pristine snow. Whiteness everywhere… It was just so beautiful. So my friends and I rushed out to enjoy the snowfall. It was a morning in December. We all went to Central Park and had great fun feeling the snow, falling in the snow, hitting each other with snowballs, running and laughing like kids.

 

I got tired and sat down to rest. I must have been sitting for about an hour. Then it was time to go. I started to stand, but due to the severe cold my feet were totally stiff. I couldn’t stand and I panicked. My friends got a taxi to take me home. In my room I sat before the heater and slowly my feet thawed to regain movement. But the incident terrified me. I was afraid of even going out of my room, let alone walking around. But I hid my fear from everyone. My loving colleagues insisted that I consult an orthopedic surgeon. They said that the best  medical advice in the world was available in the city, so what was the harm in getting an opinion?

 

At the hospital a couple of doctors made me walk a few rounds. After observing me, the Indian-American doctor there asked me how soon I would like to be confined to a wheelchair. They gave me 1-2 years in a cold climate like New York and 5-7 years in a warmer climate like India before I needed one to move around. That was all the time I had unless I received corrective surgery immediately. They said the cost of such a surgery in the US would be $30,000 (approximately 15 lakhs in Indian Rupees) excluding other expenses. When I told them that it was impossible for me to arrange for this kind of money, the doctor suggested I undergo surgery in India, as the doctors are less expensive there.

 

I returned to India on December 16 of that same year. On January 1, 2008, I was admitted to Swami Vivekananda National Institute of Rehabilitation, Training and Research (S.V. NIRTAR) at Olatpur village in the Cuttack district of Orissa, India. After diagnosis, the doctor said my deformity was a result of “Neglected CETV,” (Congenital talipes equinovarus, or “clubfoot”) which, in simple words, meant that I had delayed the surgery for at least thirty years.

 

On January 17, the Orthopedic Specialist, Dr. R.N. Mohanty, began surgery on the left foot. Going into the surgery I had a mixed bag of feelings—nervous yet hopeful. I firmed up my heavily positive attitude towards this massive process. At the time of operation, I couldn’t feel any pain due to local anesthesia, but by evening, I was suffering unbearably. This continued for the next six months, as each foot took three months and multiple surgeries to come into proper shape. The procedures also involved the use of an aluminum frame where six pins are fitted around the affected leg. The pins are inserted into the leg and pierce through the bone, emerging on the other side. Every day the frame was tightened, forcing the bone into a straighter position. I experienced sleepless nights and chronic pain for six months.

 

This was the most difficult period of my life. Irrespective of my conscious resolve, I got irritated, and sometimes behaved rudely toward the very people who were kindly tending to all my needs. To distract myself from the continuous, excruciating pain, I listened to music, watched movies with other fellow patients, and read novels and newspapers. The only way to overcome my suffering was to keep an extremely high morale (which wasn’t easy)—thinking positively, being confident and mutually sharing love and affection with fellow patients, hospital staff and friends. I kept myself productively engaged by learning  about hospital management and services, and extending my help to counsel or give advice to patients when required.

 

On July 2008, I left the hospital with two plastered legs. I was happy to be back in my village to meet people and share the experiences. I was also glad to have reformed legs. However, it was still very painful to stand up and walk. With time, I was relieved to get mild mobility in my feet. In September 2008, I again went to the hospital to have both the plasters removed. For the first time after the surgery—nine months—I was made to walk wearing specially prepared shoes. I cannot explain my joy in taking those hesitant, wobbling steps. It was that defining moment when I forgot all the past suffering.

 

 

In October 2008, I returned to the hospital for physiotherapy. My therapist, Ms. Sucharita, has done a remarkable job. She took utmost care and was an absolute professional. I got some mobility but improvement even after two months was not as  I expected. It was difficult to walk with the right foot as it became stiff and angular. The doctors said that the bones were too old to be fully reformed. In February 2009, I underwent another surgery in the left foot to expand the vein. But the pain was not as severe as the last time. Again I was bedridden for a month. Although it was only a month this time, I was totally bored ,and the surgery was not as successful as the previous ones. In March 2009, I started to walk again, this time with a high sense of determination.

 

By mid-March, I returned to my village to continued physiotherapy on my own. This was one of the happiest times of my life. I would ride a bicycle to different villages and surprise my old friends living there. I tried to identify people with the same disability, especially children in the adjacent villages, and started to convince their parents to send their children to S.V. NIRTAR. They were afraid of going  there, thinking that it would be too expensive for treatment. I told them that the hospital was run by the Ministry of Social Justice and Empowerment. The total cost of  my surgery in S.V. NIRTAR was around 1 lakh ($2000) whereas in the U.S. the cost for the same procedure was around Rs. 15 Lakh ($30,000). The expenses are minimal enough to afford for most. Moreover, there is a provision for total exemption of fees for very poor patients. Eventually eight patients from our area consulted the doctors at NIRTAR.

 

On May 2009, I moved from my village to Puri to be able to walk along the beach. Daily I walked 4-5 hours along the ocean. Though it was tough, I had a lively experience; the exercise brought strength and mild mobility to both legs. This was also the period of starting an independent life after one and half years of correctional procedures. In Puri I regained the confidence to live my life without anyone else’s assistance. Self help was the mantra for that period.

 

In the last week of June, I started on my journey back to Puri with the hope of resuming work at the National Centre for Advocacy Studies (NCAS) office, to restart my professional life, revive old relationships, and give more time for therapy and have even better mobility. Now I am doing all of the above. My feet are gradually getting stronger, though I still cannot walk as fast and the movement is not yet perfect. I need to continue rigorous exercises to improve mobility in the coming days.

 

Throughout the long process, the contribution of my family, relatives, and friends was indescribably comforting, helpful and sustaining. I am particularly grateful to Santosh, who was with me throughout the days in hospital and tended to me with lots of love, patience and deep care. I am also thankful to the nursing staff (particularly Mr. Ramesh Mohanty) and the social worker (Ms. Sasmita Samal) for their continuous support and cooperation. In the end I can say that it has been a once in a lifetime experience giving me the chance to live a new life.