Out of all the human values known to mankind, probably the one most honoured is ‘courage’. Our history holds numerous stories of courage to tell: some from the battlefields and some from our very own lives. These stories love to portray courage as a value that’s robust, out there, or demands a vigorous blood supply to the cells of one’s body. The subtle actions of courage however go unnoticed and blend with the everyday lives of people in the world. We at Let’s Help Some1 want to take this initiative to acknowledge and appreciate the courage shown by numerous thalassemics in various aspects of their lives. With the same objective in mind, we wish to dedicate a segment of our website to some thalassemics and their success stories despite all odds they had to fight in life.
The story of Ms. Shivika Garodia is the first in this segment.
At merely five years of age, Ms. Shivika had started to realise that her life was not like other children of her age. Other children in Guwahati were not travelling to Kolkata every month for blood transfusions; they did not have to take painful Desferal injections; they were not falling ill and missing school as frequently as her; they were not as fatigued and weak as her. She often wondered what was wrong with her and whether she’d ever fit with the others. However, she made a lot of good friends who became the silver lining to the rather gloomy clouds of her illness. In circumstances where one like her could conveniently be left to the margins, her friends became her support system and always made sure that she belonged. Her life was enough of a struggle for her physically, mentally and emotionally. But it was even more of a struggle for her family. She remembers her elder brother often holding her protectively and comforting her in times of her distress. As she grew up, she did not fail to notice her parents working hard and sometimes even beyond their capacity to sustain the ‘extra’ expenditures required for her good health and to take care of her. A lady travelling alone with a little kid by railways back in the 90s was not safe and by airways, not cheap. The family still made sure that she was taken to Kolkata (when settled in Guwahati) and Lucknow (when settled in Bahraich) regularly for the transfusions and check-ups. Coming from humble beginnings, her father worked hard to afford it. Shivika would sometimes catch her mother teary eyed and struggling emotionally, but never did she catch any of her parents or the sibling break down in front of her. They all stayed strong in front of her, never exposing their vulnerabilities so that Shivika does not feel responsible for any of it. She was always pampered, protected and given the best possible care and treatment.
Although she struggled with academics because of her health, she knocked down the years of her schooling one year after the other. By the time she completed her schooling from Bahraich, she had nurtured this dream of attending a regular college, becoming a business graduate and a powerful business woman thereafter. She pictured herself sitting straight on a chair as the CEO of a multinational company. She knew that for this dream to come true, she must take charge of her own life and move out. Although her parents were reluctant initially, she could eventually enrol herself in the BBA course in Amity Lucknow. But unfortunately, destiny had other plans for her. In the first year of college itself, she suffered severe side effects of a new medicine which confined her to the hospital bed for almost a month. As a consequence, she had to leave college and come back to Bahraich. This, she considers the worst thing that happened in her life because of Thalassemia. The illness caused by the side effects affected her health, but leaving college destroyed her emotionally. She blamed it all on her destiny then. She spent an year after that at home under her parents’ care but she refused to give up on her dream. The next academic year she took up the same business course but in correspondence this time from ICFAI, Hyderabad which is one of the most reputed business colleges in India. Hailing from a small town like Bahraich, she says she struggled to match the rather high standard of the curriculum prescribed by the institute. Despite being all on her own without the guidance of any good teacher, and solely through self-study, she managed to pass the three year course with good grades. However, her dream of attending a regular college and working in an MNC was still a dream. Her parents, too afraid to let go off their ‘delicate’ girl were not convinced to send her away to live on her own. To make something out of her degree and to keep herself busy, she joined her father’s agri-business while still knowing that this was not how she wanted her life to be.
During this time in her life, two important realisations had struck her heart. First, photography had become a stress reliever for her. She would passionately enjoy taking pictures of her kitchen garden at home and find unusual ecstasy in it. Second, she wanted to help others like her and their families. During all her visits to the hospitals for blood transfusions, she’d observe and talk to several other thalassemics and their family members roaming around clueless, looking out for any assistance possible. She felt this urge to reach out to them and provide them any help whether physical or emotional. With utmost selflessness, she took this up not as a profession but as a responsibility. She’d provide personal counselling to the patients and relatives that needed it. She’d even travel with or for them to other places. She’d keep herself and others updated about the new medicines, equipment or technology coming up to assist in the treatment. While most people often yield to a difficult disease like Thalassemia, she not only fought for herself but for others like her too. How commendable is this courage in her!
Serving others had brought a lot of positivity in her life. She had nurtured a new dream now: to become one of the best wildlife photographer in the world. But this dream had its own set of difficulties too. Pursuing a photography course would again mean convincing parents to let her move out and live on her own. But it would also mean fulfilment of two of her most desired goals: having a regular college life and becoming a photographer. This time she refused to give up again and decided to rebel until she won. It was not until she finally cracked the interview of Delhi School of Photography in 2018 that her parents took her seriously. Her mother was easy to convince but her father still wished to keep her protected under their direct love and care. However, it was his love for his daughter itself that now convinced him to let her chase her dreams.
She is now happily pursuing the diploma course in Delhi, living life as she wanted it to be. Apart from a few faculty members, she hasn’t told anyone of her condition because that would mean her exclusion from a lot of photography projects that are physically challenging. She wants to experience it all. She admits that wildlife photography can be very exhausting because of her condition, but she finds that worth it. She derives her strength to conquer all difficulties from her parents and also from the teachings of Sri Sri Ravi Shankar. She was awarded the title of the ‘Best Visualizer, 2018’ by her college and her work is always received with a lot of praise and appreciation. Her parents are now relieved to see her doing well on her own and are proud of her. She loves to party with friends and is living an absolutely ‘normal’ life. She’s only ready to marry another thalassemic so that they can sail “on the same boat” and look after each other.
What is most courageous of Ms. Shivika is that rather than seeing this disorder as a curse, she perceives it as a blessing. She believes that this condition has made her a much better version of herself. She has been exposed to the worst of the vulnerabilities which has provided her with a closer perspective at life and a better, deeper understanding of human values. She says that lives of even the healthiest people are fragile, so why make a health disorder an excuse to miss out on life!
To her fellow thalassemics Ms. Shivika wants to convey that one must get over the notions that a thalassemic cannot have a normal life. Thalassemics are as human as others and can do whatever they want. Having this disorder doesn’t mean they should miss out on companionship or feel inferior in front of someone. They can get married, plan a family and live happily. People could tell otherwise, but they should never let the opinion of others define them. It demands strong willpower of course, but one must never give up. One must believe in oneself when no one else does and always help others.
Kudos to such a ‘Wonder Woman’ from all of us at Let’s Help Some1! She inspires us all.