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Woman gave herself to the world

Claire Wineland (left) and Kate Thurston are pictured at theAARC Respiratory Patient Advocacy Summit in Indianapolis.

By KATE THURSTON - kthurston@newsexaminer.com

What I learned from Claire Wineland I won’t learn from anyone else.

For those who don’t know who Claire Wineland was, no one word can describe her. I have tried to use words to explain her to others: a hero, amazing, life-changing, brave, and so on. But, I have realized, Claire was so many words to me.

Claire, who was 21, fought a terminal disease called Cystic Fibrosis since she was a young child. Cystic Fibrosis is a genetic disease that causes excessive amounts of mucus to collect in one’s body, especially in the lungs. She fought the disease for years and had surpassed each year she had been told she would lose the fight.

But Claire knew that her days were numbered.

I met Claire at the 3rd Annual AARC Respiratory Patient Advocacy Summit in Indianapolis. She was a small-framed, tiny young woman, but you shouldn’t let her looks fool you. She was a spitfire, a girl who had the world by the tail. She was blunt, animated, over the top. To watch and listen to her talk was quite the experience. Go look for yourself on Youtube.

Somehow, I related to Claire on many levels. That sparked my interest in meeting Claire, hearing her story and being present at a convention where she was the keynote speaker. Claire was an old soul, like myself. She was fearless, she wanted to see the world, she wanted to have a voice that rang loud and clear.

Could I relate to her disease? Not on her level, but my uncle passed from CF, I have had friends lose family members. I was familiar with her disease, but I never once thought any different of her. If anything, it made me admire her even more.

I watched Claire speak to a room full of people who probably had never heard her story. I listened intently, and took a few words of wisdom away from Claire. I have tucked them away and kept them in my heart. They will stay there for the remainder of my days and will come out when I need to share them.

Claire once said, “When I was young, I mean between six and ten years old, a concept starting formulating in my brain, and that maybe, just maybe we have been wrong and health isn’t the defining factor in what makes someone satisfied and happy with their life. Maybe it is a part of it, but not the deciding factor, whether or not this statement is true I have held onto it. I needed to tell myself that my life was going to be beautiful no matter if I was sick or not. A life is just a life and you can do what you want with it and make it what you want it to be regardless how the rest of the world sees your life.”

After I heard her say those words, my heart fluttered. She was right. At the time, Claire was 20. How did she become so wise? How did she realize this at such a young age? I don’t have the answer to that, I just know that was Claire. She had words that most couldn’t find, she grasped concepts that many go a lifetime without obtaining.

Claire followed that statement with something else that will stick with me.

“I want to die knowing I have given myself to the world. We are all going to lose this battle but it’s true; the battle of life will be lost and that is the whole point. We all have to get up and contribute to the world knowing that it is going to end.”

Claire did just that.

Claire said a double lung transplant was never in the cards for her. In an interview with CNN, she told them, “It’s not for me, it never has been.” She was more comfortable dealing with the illness she dealt with her entire life, than dealing with a double lung transplant that could make or break her.

Just a few months ago, Claire decided she wanted to live longer. She knew that the transplant would allow her to have a longer life, maybe not as long as others but longer than her prognosis. I watched her cry in a video, she was aching to live. She wanted to get better. It broke my heart to see the hunger in her eyes as she talked about a transplant and hoping to become well.

At 5:30 a.m. Aug. 26 in San Diego, Claire received the call. The call that would change her life, forever.

She scrambled around her apartment that morning, so excited to know a transplant would be happening that same afternoon. I won’t forget the excitement she had on her face.

For a week, we all kept up to date on Claire’s status through Facebook. I sent her mother a message a couple times, but didn’t want to bombard her during this exciting time.

Then, I saw a devastating update. After the transplant, the lungs were perfect, but, Claire suffered a massive stroke. She stayed in a medically induced coma while doctors worked hours and hours to help her.

I waited and waited for an update. I checked every hour on the hour.

Sunday evening, I saw the message. It was the message that I thought I would never see, the message that made me stop dead in my tracks and break down.

On Sept. 2, Claire had passed away. She was with her parents, John and Melissa; they were there when she took her first breath and there when she took her last.

Claire was an organ donor. After her passing, other families that were waiting on calls that the organ they had long been waiting for (just like Claire had been) were available for transplant.

A final quote I will always remember that Claire said is, “Death is inevitable. Living a life we can be proud of is something we can control.”

I guess that is the whole point of this soapbox sermon, live a life you are proud of. Don’t take a single day for granted, life has been and always will be the biggest unknown. Be thankful for what you have, even if it isn’t much. Always be kind. Live a life that you will look back on and be beaming with pride. Be the change you want to see, be that light like Claire was to me.

Sometimes we find ourselves questioning why things happen the way they do. Am I angry with the outcome of Claire? Confused? Of course. But that is where faith plays in. Faith is what brings us out of the darkness, when we can’t see and don’t know the way, faith will always reach its hand out.

Kate Thurston is a reporter at the Connersville News-Examiner. Contact her at kthurston@newsexaminer.com or 765-825-0588 ext. 222.