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Is Amit different ?

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On 13th January, 1978, a healthy baby boy, weighing 2.8 kgs was born, much to the joy of his proud parents and siblings, who names him Amit.

What followed for the next 13 years was picture perfect for him. Abundance of love from family and friends, inculcation of strong family values, army discipline, life full of mischiefs, and a dream of following his father’s footsteps and joining the Indian Army. Life was hunky dory.
The earliest memory Amit has is from the time he spent at Srinagar when he was 5 years old, watching his father practice the march past, while he tried to emulate him. He was always in love with his father’s Uniform and wanted to wear his own one day.
Like most the Army kids, Amit too studied at Kendriya Vidyalaya. Back in those days kids had the choice of taking up BS&G (Bharat Scouts and Guides) post primary classes and NCC (National Cadet Corps) in high school. When in 6th standard, the mere thought of wearing that beige colored, ‘BS&G uniform’, once a week to school was motivation enough for him to take up the activity. He also started going to the Army platoons with his Dad to observe the life there. Extra-curricular activities like parading in the army grounds and playing cricket/football in school and home kept him busy. Amit was enjoying life like other kids around, climbing trees to pluck Mangoes, Guavas and Jamuns. Was he different than other kids? He surely wasn’t.

In the winters of 1991, Amit stepped into Teenage, a transitional stage of life where a kid develops physically and psychologically. For Amit, however, another thing was developing in his body – Ankylosing Spondylitis and sadly no one knew. Before he could experience what teenage was and could start enjoying the journey from puberty to adulthood, Amit was experiencing excruciating lower back pain and loss of movement in his hip joint. The pain flared up during winters and subsided in the summer months. Doctors were trying to find out what was causing this undesirable pain, but had little luck. With each passing day, week, month and year, the hunky dory life that he had lived for the last 13 years was turning into a nightmare; not only the dream of joining the Indian Army was going away but the days of cycling, playing cricket/ football and other physical activities were numbered, excruciating pain confined him to bed and resulted in long absence from school. The kid who was good at studies was finding it difficult to complete his syllabus and appear for exams, the kid who use to proudly wear the BS&G uniform and was happy doing outdoor activities- now couldn’t even bend down to tie his shoe laces or attend the PT period in school .That kid who was happy, dancing on his and his friends birthdays was celebrating his own birthday on bed…Was Amit different ? I don’t think so.

What followed for the next 8-9 years were multiple visits to Doctors and hospitalization but an incorrectly diagnosed disease (Bone TB) and its consequent treatment. The ill effects of having Bone TB medicines (multiple injections and heavy dosages of NSAIDs – Non Steroidal Anti Inflammatory Drugs) for all those years and not getting treated for the disease he had, had an impact on his physical and mental health. Amit started to develop a bamboo spine and had an almost fused right hip joint with limited movement.

He completed his school and wanted to go to a regular college like his brothers but couldn’t, as travelling in bus and on bike was getting difficult. He somehow completed his graduation in 1999 and wanted to work like any other guy his age however, the mere thought of stepping out of home and watching people turn their head and look at him with pity in their eyes (due to a limp because of restricted hip movement and had a fused and forward bent spine too) played with his mind and Amit confined himself to his home. The disease not only impacted him physically but mentally and emotionally too. His self-confidence took a beating, he was grumpy most of the time and started to hate his life. In 2000, he was finally diagnosed with Ankylosing Spondylitis but sadly it was little too late, the disease had worn itself out in his body. Doctor who diagnosed him, not only suggested a hip replacement surgery on the right hip joint but also said that the left hip joint was getting impacted too as it was bearing the weight of the whole body. Amit and his family met a couple of more doctors who advised against the surgery as it wasn’t common in India at that point and had greater risks. As the popular medical opinion suggested, he and his family decided not to go for the surgery. He spent the next 3 years at home because walking independently or travelling in buses was next to impossible. Moving inside the house, using the Indian style toilet, taking a shower and putting clothes on – were all big tasks and required a lot of time and energy. Climbing stairs of his first floor house would take him 8-10 minutes, getting in and out of his brother’s car was not only painful but also drained him out. The fact that most of his friends were now working or had moved out made him feel alone…The cheerful kid of 1980s had now cut a sorry figure and turned into a frustrated adult…was Amit different? Most definitely not. But the world that surrounded him, made him feel so.

Finally in 2003, Amit decided that his condition would not determine his life and started working at an advertisement booking agency. It was a small set-up and there wasn’t much work but he made it a point to go to work every day and spend at least 6-7 hours daily. He worked there for 6-7 months and this gave him confidence. Amit then gave an interview for a BPO job and was selected. Although the 25+ km’s of travel in a cab and climbing stairs to 4th floor of the office building was painful, but now nothing could stop him. Amit worked hard and earned accolades for his work, for once he felt that people were not looking at how he walks but how he works. This gave him a lot of confidence and Amit started to go out with friends and looked happy and guess what, He made a girlfriend too!

By 2006, Amit was a specialist in his work type and wanted to take up new challenges, he joined Vertex. This company and his colleagues were wonderful and became a part of his life (and are with him till date), he liked the place and was enjoying every moment, until, his girlfriend, who he had been with for 2 years, abandoned him because her parents found out about and weren’t comfortable with his physical condition. He was sad but he didn’t let that impact him mentally and focused on his work. Amit performed exceptionally well and his hard work paid off as he was nominated for company’s annual awards. What a night that was, Amit was selected as an exceptional performer and was part of a group which was rewarded with a week-long trip to Dubai and Egypt. That was one of the best days of his life and damn did he enjoy that trip. Despite all the achievements and happiness, the daily travel of almost 90 km’s a day was taking a toll on Amit but he wasn’t one to bow down. He was taking NSAIDs and controlling pain but gradually his right hip joint got totally fused with no movement and left hip joint also got impacted with restricted movement

2007 brought with it a turning point in Amit’s life when his sister-in-laws consulted one of India’s renowned orthopedic surgeon, with years of experience in hip replacement surgeries. This surgeon was nothing less than God for Amit and operated his right hip joint in 2007 (a normal surgery gets completed in 2.5 hours but Amit was in the Operation theatre for close to 9 hrs.) and left hip joint in 2008. Both the surgeries were followed with months of bed rest and intensive physiotherapy. Amit first started walking with a walker and later-on used an arm crutch. Within months, he was able to walk on his own…Oh boy! That was the beginning of a new life for Amit at the age of 30. The guy who was almost confined to bed few years ago and was finding it difficult to walk on his own, walked down from Mata Vaishno devi bhawan till Katra (approx. 12 km’s.), on his own. That was some achievement for Amit and he was loving his life now. Luckily, he also got transferred to an office closer to his house so the travel time to office cut down to 10-15 minutes only. After work parties, movies, clubbing, getting sloshed, overnight trips to nearby places, Amit was living life king size and our boy fell in love too. Soon the weekends were spent watching movies, having lunch/ dinner with her. His family liked the girl too and was happy for both of them. Life seemed to be getting back on track but Amit was still a bit sad as he couldn’t ride a cycle, motorbike…so what, he bought a Car…What an eventful day that was, 10th Oct 2010, mom’s birthday, met girlfriend’s elder sisters in the day and got the delivery of car in afternoon. Fairytale continued for few months and then he was dumped by his girl as her family was reluctant in getting her married to him and got her married somewhere else. Why? Because Amit had Ankylosing Spondylitis and had bilateral hip replacement surgeries so her future wasn’t secured with him. Amit was heartbroken but wasn’t going to go down, what followed was a conference call to 2 of his besties and a plan to go Goa but then they thought “why not spend some more money and go to Thailand”…the hunky dory life was back again…trips with family and friends, joy rides in car, visits to water/amusement parks, water sports, you name it and Amit was up for the challenge. Though his doctor had advised him neither to bend his hip joint more than 90 degrees and nor to take up any activity which can lead to a sudden jerk in his hip joints but he was doing Paragliding off the hills in Solang valley and Parasailing in Goa.

Amit was around 36 by now and was thinking of settling down, he liked this girl at work and after some initial hesitation, asked her out. They both were an instant hit and started spending a lot of time together. After dating for almost an year, they both decided to get married. They both met each other’s families; after loads of discussions and convincing, her parents agreed for the marriage but refused when it was the time to plan the wedding. Amit thought that he will be 3rd time lucky but he was labelled a “physically handicapped” again with the same logics as ever. What a heartbreak that was but thank god, Amit’s family and friends were there again to help him out, his colleagues and his team was there to cheer him up, spend time with him after work. Our boy was knocked down but you couldn’t keep him down for long and he got up again, back to party days, driving with his bestie all night long, drinking beer, dropping her home, watching movies, eating out…doing everything an average “normal” person does.

Do you really think Amit was or is different than the “normal” people? They all tell him that “you are good looking, have a good nature, an amazing family, you earn good, have your own car and house and are independent but then you have Ankylosing Spondylitis and we can’t put our daughter’s future at risk”. Is physical appearance more important than your personality, cultural values, how you behave in person and public? Does education really help and expand one’s thinking capabilities and ways to perceive the world around them? Does expansion of knowledge really lead to progressive, more accepting and equal minds? Doesn’t seem so as all those parents were well ‘educated’ and knew that Amit wasn’t carrying a fatal disease. Yes, he has to go for a hip replacement revision surgery in 10-12 years, due to the wear and tear in artificial joints but he knows what to expect in future health wise and how to plan his life.
It has been 11 years now since Amit had his 1st hip replacement done and now requires a revision surgery. It’s going to be another complex surgery which will again require months of rest, physiotherapy before he starts to walk again and fight with the social norms to prove that he is like other ‘normal’ people and not physically handicap, and as he goes for the surgery he is humming “I get knocked down, but I get up again…You are never going to keep me down“.

 

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Now as an MH Fellow with YKA, she’s expanding her impressive scope of work further by launching a campaign to facilitate the process of ensuring better menstrual health and SRH services for women residing in correctional homes in West Bengal. The campaign will entail an independent study to take stalk of the present conditions of MHM in correctional homes across the state and use its findings to build public support and political will to take the necessary action.

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Harshita is a psychologist and works to support people with mental health issues, particularly adolescents who are survivors of violence. Associated with the Azadi Foundation in UP, Harshita became an MHM Fellow with YKA, with the aim of promoting better menstrual health.

Her campaign #MeriMarzi aims to promote menstrual health and wellness, hygiene and facilities for female sex workers in UP. She says, “Knowledge about natural body processes is a very basic human right. And for individuals whose occupation is providing sexual services, it becomes even more important.”

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MH Fellow Sabna comes with significant experience working with a range of development issues. A co-founder of Project Sakhi Saheli, which aims to combat period poverty and break menstrual taboos, Sabna has, in the past, worked on the issue of menstruation in urban slums of Delhi with women and adolescent girls. She and her team also released MenstraBook, with menstrastories and organised Menstra Tlk in the Delhi School of Social Work to create more conversations on menstruation.

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A student from Delhi School of Social work, Vineet is a part of Project Sakhi Saheli, an initiative by the students of Delhi school of Social Work to create awareness on Menstrual Health and combat Period Poverty. Along with MHM Action Fellow Sabna, Vineet launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society.

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As a Youth Ki Awaaz Menstrual Health Fellow, Nitisha has started Let’s Talk Period, a campaign to mobilise young people to switch to sustainable period products. She says, “80 lakh women in Delhi use non-biodegradable sanitary products, generate 3000 tonnes of menstrual waste, that takes 500-800 years to decompose; which in turn contributes to the health issues of all menstruators, increased burden of waste management on the city and harmful living environment for all citizens.

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Find out more about her campaign here.

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A former Assistant Secretary with the Ministry of Women and Child Development in West Bengal for three months, Lakshmi Bhavya has been championing the cause of menstrual hygiene in her district. By associating herself with the Lalana Campaign, a holistic menstrual hygiene awareness campaign which is conducted by the Anahat NGO, Lakshmi has been slowly breaking taboos when it comes to periods and menstrual hygiene.

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