“Death is inevitable living a life you are proud of is something you can control” – CLAIRE WINELAND
So, Claire Wineland isn’t a name people are aware and totally familiar with. Claire Wineland was born on 10th April 1997 with a genetic disease called Cystic Fibrosis (CF). Cystic fibrosis is a life-threatening disease with no permanent cure. It affects the cells that produces mucus, sweat and digestive juices. CF causes this fluids to become thick and sticky. They then plug up tube, ducts and passageways. After, it gradually causes your organs to malfunction and they stop responding. Claire had all this and thus her routine included taking pills, treatments, working out, sleeping and eating. She was required to eat at least 500 calories otherwise she could become a skeleton and she had gone through around 35 surgeries. Growing up Claire never had any role model to look up to as the disease was rare.
She understood that living a life where are you give something to the world is possible with any circumstances even if it takes to have cystic fibrosis. During her birth doctors had given her 18 years of life expectancy. People around always pity sick people and view them as weak but that in turn make them feel low and demotivate them. Instead telling sick people that they can be happy and live a normal and proud life is something that is empowering. Claire’s father and mother couldn’t always be in the hospital so when other people visited her, they gave her this pity look like “oh poor girl”, “some people’s life are hard” but this wasn’t what Claire wanted to hear out. Sick people always go on imagining their life after being healthy, not only them but in life all of us think the scenario of once we are rich, we will do this, once we are in love, once we are healthy we will be able to live our dream life but what we have to get is that blaming circumstances isn’t of any help. We can start at the moment with so provided difficulties. Claire’s important message that helps inspire millions of people despite being sick or not is “living in the moment”. Asking a question, if you died today at the very present moment and look back at your life, will you be proud of what had you lived so far, had you given something to the world or will you have regrets and guilts? Yes, the moment when your answer will be that even if you die right now you will be happy and proud with what you have done in your life is the realisation of living a fulfilled life.
Claire died in 2018 but technically she had also died before. At the age of 13 during Claire’s routine checkup there came out a blood infection. She spiked a fever and her oxygen saturation level started to drop. After one hour she was not able to breathe, her lungs failed. For the first three hours she felt that she was dying but she was prepared for this. She wasn’t fully unconscious. She went into a coma, she was transferred from a ventilator to isolator. After two weeks, she came out of coma which was not expected, doctors had given her a 1% living chance. Claire remembered that while she was in coma, she could hear everything and felt that she was talking with everyone. She felt that she was in a camp sort of place with her family and was talking with them. Claire’s dream trip was Alaska, when ice packs were kept on her body she felt cold and imagined visiting Alaska. Then came the creation of “CLAIRE’S PLACE FOUNDATION“ for supporting families with CF as there is no government fund directed to the disease. The foundation has provided over 1 million dollar of support and is continuing doing the same. Claire denied lung transplant many times because after all, being sick was although an easy play for her. Sick people have an excuse for not giving anything to the world. As everyone chooses, a safeguard. In our lives also it is easier to blame our problems, given circumstances for not doing something but it is harder to confront ourselves saying it’s on us, we aren’t doing what we should do. Claire told how there are some people who are very eager to get lungs but does that mean they are being strong.
There’s a very fine line between wanting something to be able to give to the world or wanting something to make your own life better. That’s what the question arises, people who are eager to get lungs, do they want them to make their own life better and live so called normal life termed by society or do they want the lungs to give something to the world which wasn’t really possible for them earlier. You can spend your entire life running away because of circumstances. Claire became the person she herself would have been inspired by. We should stop getting rid of problems, stop getting invaded by them instead we should take them in our stride, then only one of the greatest things will happen. Innovation happens by suffering. Claire was a successful motivational speaker and a famous social media star. Claire had a successful YouTube channel where she talked about events of life and how she spent her days in the hospital. One of her videos included how she redecorated her hospital room. She coloured the bricks, pasted pictures and paintings upon the wall. She also had a piano and knew very well to play it and even sang some of the songs. She also put up fairy lights.
Now, talking about her speaking career which is pretty engrossing, Claire always wanted to take up public speaking. She told that when she was young, during family gatherings, she used to speak and made every one listen. Her first talk was at TEDx, when she was 14 of age, yes really young. In another TEDx talk, about 4 years later, she talks about how nervous and scared she was that she could have literally pissed her pants. Later on, she gave many talks while making people fall in love with her words. Not only Claire was inspirational or just used to give a speech but she made people laugh whilst during her talks, she was a person who could prove to be a driving force in people‘s life to get them what they want. Moreover she was funny and a walking slap in people’s faces for demotivating sick people. Claire wasn’t afraid of dying, she had always lived with the thought of it. Claire was living something, that we all work hard to never get in touch with, she was dying everyday. This wasn’t everything that constituted her life, she was also an author. She wrote books titled “Every breath I take”, “surviving” and “Thriving with cystic fibrosis”. On August 26, 2018 at 5:13 am, she got a call for new lungs. She recorded the moment and was very excited while smiling up to her eyes. Her surgery and checkup went great. Doctors said that her lungs were in great condition. Everyone’s hope were really high little were they aware that this will come out to be something else. Claire died after a week of lung transplant because of a stroke. Surgery got a complication which resulted in a stroke and she never came out of the unconscious state. Right after this her mother and father were still in hope as they knew that Claire was very strong and had returned in worst of the situations. Claire passed away peacefully on 2nd September 2018 at the age of 21 but this wasn’t really sad because as earlier told death is inevitable but she lived a life she was proud of and gave so much to the world, she had no regrets. Mellisa Wineland, Claire’s mother calls her “Beauty of the Odds”. Claire was successful in finding things in her life that made her happy in the moment.
As we all know Angels never die, Claire still continues to inspire people every single day. Her non-profitable organisation has helped many families with CF and remains active till the date. Her YouTube videos have been viewed over 200 million times. In 2019, a movie five feet apart directed by Justin Baldoni was released, which was high up in the charts. The movie was made from an inspiration through Claire Wineland. Claire Wineland was so much more than a sick girl, she was the reason of People’s inspiration, reason for families smiles, she through her words narrated the whole world on our relation with our fundamental self. Claire will always be alive in our hearts. “We will never really get what we want until we want what we have”.
By UDIPTI CHHIKARA, NEW DELHI
