What is the purpose of living a life? Do you live to avoid death? Or are you planning to do something special with it?
I want you to keep these questions in mind, as you read this post. Because these questions will keep popping up, through out the story of an operatic soprano, that of which I am about to tell you.
Two years ago, Charity Tillemann-Dick woke up from a month long coma, following a double lung transplant. Six years before that, she started her career as an opera singer in Europe. She was diagnosed with idiopathic pulmonary hypertension, also known as PH. This disease is caused by the thickening of the pulmonary vein, which in turn cause the right side of the heart to work over time. Charity’s heart was 3.5 the size of an average healthy heart. Needless to say, physical activity is difficult for people with this condition, and according to research within 2 to 5 years, you die. Charity went to see this specialist who was supposedly top-of-the-field, and this doctor told her to stop singing. Though there were no medical evidence to back up her claim, the doctor emphasized that there was a relationship between operatic arias with PH. She said that Charity was singing her own obituary if she doesn’t quit.
The doctor said, Charity has to quit her dream to survive.
It’s easy to say, but harder to do. Charity loved singing, and she wasn’t going to let someone’s hunch make her give it up.
So as the altitude of Colorado (which is where she was living at the time) exacerbated her symptoms, she moved to Baltimore. There she worked with doctor Reda Girgis and his team at John Hopkins to fight for her survival.
After six months, her conditions were worse. She couldn’t walk. She couldn’t climb a flight of stairs, she couldn’t stand up without feeling like she’s about to faint. When they measured her internal arterial pulmonary pressure, hers was 146. A number far too large in comparison to the expected norm 15-20. Charity went on a treatment called Flolan- A catheter was inserted into her chest, and is attached to a pump that weights about four and a half pounds (That’s 2.04kg). Everyday, 24 hours, that pump is at her side, administering medicine directly to her heart, and it’s not a particularly preferable medicine in many sense. Let me give you some… precautions: if there is a bubble in your medicine-because you have to mix it every morning- and it stays there, you’ll probably die. If you go through a metal detector, you’ll probably die. If you run out of medicine, you’ll definitely die.
No one wants to go on Flolan, but the medicine was exactly what she needed. Within a few days, she made incredible recovery, and within a few months, she was performing again. And even though the pump complicated things, she was happy.
Then in Febuary 2008, her grand father passed away. Seven weeks later, she got another call from her family. Her father was in a car accident, and he died. “At 24, my death was entirely expected. But his, well the only way I could articulate how it felt was that it precipitated my medical decline,” Charity said in retrospect.
Her doctor wanted her to enlist for a lung transplant. But it took her a while to second his advice. She spent her whole life training her lungs, and it was understandably hard for her to be enthusiastic about giving them up. When they’d found a match for her lungs, she flew to Cleveland, and undertook a thirteen-and-a-half-hour surgery, in which she flat lined twice. And though her mom couldn’t say goodbye to her before the surgery, she didn’t leave her side in the months of recovery that followed. Two years ago, she woke up, and there were a dozen tubes coming in and out of her body. And when the first thing she saw was her mother, she couldn’t help but smile.
“Whether by a Mack truck or by heart failure or faulty lungs, death happens. But life isn’t really just about avoiding death, is it? It’s about living. Medical conditions don’t negate the human condition. And when people are allowed to pursue their passions, doctors will find they have better, happier and healthier patients. My parents were totally stressed out about me going and auditioning and traveling and performing all over the place, but they knew that it was much better for me to do that than be preoccupied with my own mortality all of the time. And I’m so grateful they did.
When I think about that doctor who told me that I couldn’t sing. I want to tell her, and I want to tell you, we need to stop letting disease divorce us from our dreams. When we do, we will find that patients don’t just survive; we thrive. And some of us might even sing.” Charity Tillemann Dick concluded her TED conference with those words.
And I, I walk away, with an unwavering will to keep trying, to never stop believing in my passion.