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Transcript:
Voice 1
Welcome to Spotlight. I’m Roger Basick.
Voice 2
And I’m Anne Muir. Spotlight uses a special English method of broadcasting. It is easier for people to understand, no matter where in the world they live.
Voice 1
Think about this question: What would you do if you knew you were going to die soon? Would that change how you lived? Would you stop working? Would you travel? Would you just give up?
Voice 2
Many people already must answer this question with the way they live. They have medical conditions that have no cure. Their lives could be long or short, but they cannot forget about death. However, this does not mean that they stop living. Today’s Spotlight is on people who are dying, but have not stopped living.
Voice 1
It is 2009. A theatre in London is full of people. They sit and wait for the music to begin. Then a thin young man walks out. He is only 19. He stands in front of the singers and musicians. He lifts his hands to lead the music. The performers begin to play and sing. J S Bach wrote this music almost 300 years ago. The music is very emotional, so it is also difficult to play and sing.
Voice 2
When it ends, the young man is happy. He has wanted to lead this piece of music for a long time. But he is also very tired. He is so tired that he needs to go to the hospital. He will stay in the hospital for the next three weeks.
Voice 1
The man’s name is Alex Stobbs. Alex lives in the south of England. He is very gifted in singing and playing music. But soon after Alex was born, doctors discovered that Alex had a disease called cystic fibrosis, or CF. In CF, organs in the body become blocked by a thick fluid called mucus. The mucus prevents the body from taking in food and air. Most people who have CF only live into their 30s. There is no cure.
Voice 2
But Alex did not let all this stop him from living the kind of life that he wanted to live. He told The Telegraph:
Voice 3
“Like a lot of people who live with sickness, I work very hard. I may say I am even stubborn — I want my way. I have always seen difficult things more as a challenge than something that will stop me. I just have to prove myself. Nothing makes me feel better than to say ‘I did it’ and prove people wrong. I am not the kind of person to wait or give in. I want to show people that having CF does not mean sitting around feeling sad for yourself. I get very tired but I like to be doing too much than too little.”
Voice 1
Claire Wineland is only 20 years old. Like Alex Stobbs, she has CF, cystic fibrosis. She writes on her website, The Clairity Project:
Voice 4
“I want to tell people about what it is like to be sick, and hopefully to change the way we see people living with sickness. I do not think that life is black and white. We cannot see everything different and strange as being bad. I have spent around 30 percent of my life in the hospital. I have had around 30 surgeries. I do up to four hours of breathing treatments a day. And I am not expected to live a long life. Yet I have had a wonderful life. I have had a life I am proud of.”
Voice 2
Claire tells people about being sick. During high school, she posted a series of videos on YouTube. She made videos about her times in hospital. She made videos that explained her medical equipment. She talked openly about death and dying. But she also made videos about her favorite music, how she loves coffee, and her family.
Voice 1
Claire tries to live a normal life. She tries to be a normal young woman. And sometimes she even forgets that she is dying. She will talk with friends about what they will do when they finish school. And then she remembers that she may not have much time to do those things. In one video she said,
Voice 4
“When I was born I was expected to live to five years old. And then it moved to 10 years old. And then it moved to 13 years old. Then it moved to 18 years old, now it is at 19. And every time I get close to that point where I am supposed to die, there is a new technology that comes out. Or a new medicine. Or new ways of treating cystic fibrosis. Then I live for another five years. But I cannot believe that it is all going to be ok. I cannot believe I am going to live forever.”
Voice 2
Claire and Alex do not let CF stop them from enjoying life. And they are both using their lives to try to make the world a better place. Alex has continued to study and perform music. And Claire has begun a foundation to provide support to families living with CF. Thinking about death has changed how they see life. They are making every second of their lives have value.
Voice 1
But CF is not the only sickness that can cause people to think about their life plans. Suleika Jaouad was only 24 when doctors told her that she had cancer. She wrote about it for the New York Times.
Voice 5
‘The news that I had cancer took away what I expected. I had thought of myself as a person with one kind of life. I used to think that looking at the “big picture” meant coming up with 1-year, 5-year and 10-year plans… I had spent a lifetime on the big picture. But cancer made me look at the small picture. I had no choice. So, for the first time in my life, I began to think more closely about the present.”
Voice 2
We are all going to die. We believe it will be a long time from now. But what would you change if you knew you only had a year to live? Or a month? Or just a week? And what is stopping you from changing right now? Tell us what you think on our website. Or email us at radio@radioenglish.net. You can also comment on Facebook at Facebook.com/spotlightradio.