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Against All Odds

Courage In Adversity

October 2016, ലക്കം 21 ജനുവരി 2015

Childhood and youth are often described as the most beautiful and idyllic phases of our lives; free of worry and care and suffused with dreams. Yet, for a few of us, life does not pan out as planned. Malayali profiles two amazing young people who overcome great challenges and come out on top- every single day. Their sheer grit, persistence and indefatigable spirit are an inspiration to us all.

 “Happiness Is a Choice and I Choose to Be Happy”

Dhanya Ravi (Bangalore, India)

51-60-8How  would you feel if someone shakes hands with you and the bones in your palm break? Wouldn’t it be strange if your teeth fell off while munching on your favorite candy? If even a tiny bump would lead to severe fractures resulting in shattered bones, accompanied by extreme jolts of trauma? It is as terrible as it sounds, my dear friends. I was born with a disease called Brittle Bone Disease, scientifically termed Osteogenesis Imperfecta.  This is a genetic disorder. People with this disease tend to have twisted limbs and dwarfism, that is, they never grow taller. Think about how it would feel, if you had to be bound to your wheelchairs or beds, like us. Wouldn’t you be saddened?

Unfortunately, it’s my life, it defines the condition in which I always will be. Unlike most people’s idyllic memories of their childhoods, I had to pay the price for growing up. Constantly afraid of fracturing my bones, noticeably short in height, bowed legs, teeth in braces, painfully conscious and embarrassed about how I looked- that is how I spent my childhood and teen years. I could never run, let alone walk in comfort. While you were choosing new toys and pretty dresses, I was out there, trying to make up my mind about which wheelchair would serve me best;  afraid to break myself, but mostly, afraid that the disease would break my spirit. This utterly ruthless condition is known to do just that for it doesn’t let go once it has you in its viselike  grip- it is a life sentence. Apart from systematically destroying your body, it even deprives you of your dreams; your soul.

   People like myself are afraid to dream, for we fear letting ourselves down; we are deathly afraid to spend a lifetime lamenting over shattered dreams..as if our shattered bones weren’t enough!

   Over the years, though, I have learnt to accept whatever comes my way quite stoically. I try not to get carried away by joy or sorrow, success or failures..I have learnt to steel myself against disappointments and disenchantment. I believe God only gives me burdens that He knows I can bear- I must be a heavyweight champion in His eyes-  and I must always make the best of the situation. So, no, I have never had wild dreams of wealth, status or fame and despite all my limitations, I am quite  proud of the person that I have evolved into.

   A native of Palakkad but settled in Bangalore, I was home-schooled until year 10 and thereafter, managed to educate myself in jewelry making, basic content editing and graphic designing. It was at this juncture that I met the woman who would change my life forever- Mrs. Latha Nair- my personal messiah and that of many, many others like me who suffer from my condition. This selfless woman, who 51-60-9has dedicated her whole life to caring for sufferers of Brittle Bone Disease and making our lives a little easier, invited me to be part of a project that would help create a roof for individuals affected by this disease.  Together, we founded the Amrithavarshini Charitable Society which aims to provide a helping hand to victims across India. Amrithavarshini motto is to assist and support the sufferers, to make them abandon their tears, forget all their fears and to retain their smiles forever. Today we have nearly 90 members in and out India. Being a part of Amrithavarshini has helped me grow into a confident individual with an optimistic attitude. It has taught me that ‘disability’ is only a word and that every single person has in them, talents that need to be discovered an explored.

   Through Amrithavarshini, I even made a few television appearances on popular Malayalam programs like Idea Star Singer, Kodeeshwaran and Ashwamedham. I am a motivational speaker and also give talks around the state to spread awareness about Brittle Bone Disease. I address diverse audiences like students, IT professionals, government employees and just about anybody that is willing to listen and learn.51-60-10

   All these opportunities make me feel lucky to be who I am, where I am. But the true reason I consider myself extremely lucky is for having the incredible parents that I do. Not a day goes by that I don’t thank God for giving me a father and mother who never gave up on me, not even in the worst circumstances. Then and my group of loyal friends who have stood by me through all these years. It was they who encouraged me to persevere against every challenge life threw at me; it was them that cheered the loudest at my smallest victories. Their unshakeable faith in me has made my physical weakness my greatest strength, encouraging me every day to break barriers and surge forward. They have and will always be my guides and my greatest support system.

   In parting, let me tell you a few things that I think you would benefit from knowing. Always be grateful to God for blessing you with a normal life devoid of disabilities. Never take your health for granted- there truly is no greater gift than a healthy body and mind. Your parents will always be your strongest pillar and greatest support. Thank them for always being there for you, no matter what. To children- when you spend all your free time immersed in your games and gadgets, you miss out on all the beauty of the world around you. There is so much to see and be inspired by! Pray often- not for an easy life, but, for the strength to endure a difficult one. Education is the most amazing thing- if you have it, share it with others who haven’t been as fortunate.

   I believe with all my heart, like the popular Disney song goes, ‘Somewhere over the rainbow, the dreams that you dared to dream, really do come true’. I dream that there will be a cure for my disease and other genetic disorders like it in my lifetime.

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“No two days are the same, it keeps things exciting!”

Meera Nair (Boston, MA)

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Hi, I’m Meera. I’m 8 years old and live in Boston, Massachusetts with my little family that is made up of my dad, mom and twin brother, Madhav. I love flowers, butterflies, singing and dancing and I also sometimes write poetry. Everybody says I have a big imagination; thy must be right because I’m constantly making up stories in my head! I am loved very much by my family and friends and  you would say I’m a pretty lucky little girl, right? You are right. Except for one little thing. I have Cerebral Palsy. I get around from place to place on a wheelchair or my parents carry me around, because you see, my body isn’t very strong, particularly my left side. The disease has greatly affected my motor skills and I have difficulty feeding myself- unless it is finger food- and writing clearly. The latter is especially hard for me to handle because I like to express myself through words and my inability to put my thoughts down as quickly as I think them, makes me have to remember them and dictate them to my mom, who then transcribes them- just like she is doing now. So you see, my world is quite unlike yours. When I am in the house, I can accomplish little tasks by crawling on the floor, but I still need considerable help because I cannot even stand unassisted. My wheelchair is awesome though and i love it, because it gets me from place to place. Earlier, I used to have a manual wheelchair, but now, I use a power chair, which allows me greater independence. But I know one day, I will be able to walk on my own. I know so because I see it in my dreams.

    51-60-12My parents and brother love me a lot; they make me feel like a very special little girl every single day.  My dad has to be the best and funniest dad in the world. I am the center of his universe. He plays with me, encourages me and does everything he can to see me happy. Mom is my greatest cheerleader. She cooks me my favorite foods, teaches me dances (yes!), encourages me to to write down my thoughts and perform on stage so that I realize that I am no less than other children my age. She is also my personal chauffeur, taking me everywhere I want or need to go. My brother, although little like me, is also very supportive of me and loves me very much. When we are at home, he always plays with me, watches all my favorite shows (although they may not be his favorites) and helps me get things I cannot reach. He accompanies me to all my therapies and never complains. My grandparents are pretty awesome too and I love vacationing in India every summer because I get to meet them, my cousins and other extended family, all of who have never let me feel like I have a disability.

  For all my joy and bravado, I do sometimes feel different and sad when I see other children my age running around. Since I am on the wheel chair or on the floor most of the time, it is hard to get their attention. Sometimes, really hard. But my parents have taught me to always try and think positively and to never give up. And it is helping; I can be pretty determined when i make up my mind.

  Despite not being able to walk, I feel awesome when I think about all those things that I CAN do.  I have won several prizes for short story writing competitions and even one for elocution- in Malayalam, no less. I take lessons in art, vocal music, piano and chess. I even sing and dance (in my own way) with my friends on stage and it gives me the greatest high! Other things I enjoy are reading and history. So you see, I have never let the Cerebral Palsy get in the way of all that I want to do. It has only made me more determined to follow my dreams.

     When you go through challenges in life, it always helps when you have a friend that understands. I have a wonderful best friend that patiently listens to everything I have to say, follows me around, helps me out and enjoys being around me. It makes me feel so wonderful to have a friend like her! My school and teachers are awesome cool too. They are so funny, loving and caring. At school, I once got nominated for the quality of Perseverance which means to never give up. One day I met this visitor at my school, who was in a wheelchair just like mine, but had a completely different condition. His spine was broken and he couldn’t move his arms and legs; only his head and toes. He used a straw to blow and and move his wheelchair. He was doing a presentation at school and I thought he was pretty cool. Seeing him and talking to him made me thankful and happy for all that I have. It made me realize that there are people in this world who are worse off than I am and that I should be grateful for how beautiful my life is.

      When I grow up, I want to start an orphanage for little children that have no parents to take care of them. I have heard stories about orphans in India and it always makes me sad to think of them growing up without a mommy or daddy looking out for them. I would like to help those kids out in some way or other. That is my dream. I also would like to help people with cerebral palsy because I have experience with it and know how it feels.

 What keeps me feeling hopeful and positive is that, everyday in my life, something new happens. No two days are ever the same. It keeps things exciting. My message to my all my dear friends reading this, is to be happy and thankful for what you have, and to those with CP or similar conditions, is to never ever lose hope. There are good things coming your way and walking will just be one of them, I promise.

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