One day I asked myself, "What's your greatest power?"
Without a second thought I replied, "Bethlem Myopathy." And after thinking about it later, I realized how true that is.
My family often tells me the story of my birth. Doctors warned my mother that I might die before birth. Even after my birth, I met my mother after three days. Everyone thought I would not survive. But at last, I survived. This inspires me a lot even now. Whenever life became unbearable for me in previous years, I consoled myself saying that my life is a present. I should not want it to end early and there must be a reason for living.
As a child who was just back from the doorstep of death, I got unconditional and immeasurable love. My family took care of me with deep love. Even though I had a genetic disorder, I was at least alive.
I think that I am one of the luckiest person of the world and I am thankful for that. No one makes me think that I am 'disable'. They have taught me to think that I am 'a person with some disabilities '. Specially I want to give thanks to my mother. She is the one from whom I have learned to be positive and think positive about my disabilities.
I have disabilities but that cannot stop me. After my family, I have to give thanks to my teachers. They have taken care of me during the school years just like family. My family and my teachers have done everything to give me a life like others. A beautiful life. My classmates always reached out their hands for me even if I refused. They never insulted or bullied me. Everyone made me realize that it’s alright to be imperfect and I have the right to live a normal life.
I never get disappointed for what I can't do. My way of thinking is like, "It’s not that 'I cannot walk on my own.' It’s actually, 'I can walk with other people’s support. ' " I am so lucky that I have received love from everywhere I went. Everyone accepted me with my disabilities. Without their support, I could not become the me who I am now.
I never blame my disease. Rather, I accept it just as a part of me. I am fine. Without my disabilities, I would be just like normal girl. But my disabilities have made me different from others. It makes me true me. It has made my outlook different that others. It makes me a special one. I never think of having a life without Bethlem Myopathy. I am happy with who I have become.
My disabilities cannot stop my journey. I keep walking and dreaming big dreams. It cannot wipe out my smile. I even went to a television programme once. My disabilities cannot stop me from spreading my thoughts far and wide.
I told earlier that everyone accepted me just the way I am, and I myself have done the same thing. It should happen to everyone. Because it’s our right to have and claim a life like others. No one has the right to insult us, stop us or bully us. We are a part of the beautiful diversities of this world. And we can contribute to make the world a better place in our own way. And the ones who have disabilities, l have a message : Let's start the acceptance with yourself. You are the one who have to accept yourself first. If you can accept and love yourself, no matter what the world says.
Claire Wineland, reflecting on her outlook on life. Direct quote published by online women's magazine Glamour three days after her 2018 passing.