An Evening in Mallory’s Garden — speech 2014
I’m going to tell you a happy story, but first, I have to tell you the not-so-happy background.
As many of you know, cystic fibrosis is a progressive genetic illness that affects primarily the lungs and digestive system of some 70,000 people worldwide. In my lifetime, terrific advancements have been made, improving quality of life for CF patients and stretching the median life span from 5 years to 37 years.
My case is an unusual one. I look healthy from the outside, even as my insides fight a mighty beast. I’ve been fortunate enough to be able to play sports, go to college, engage socially with my peers, and travel. I’ve played water polo in Hungary alongside girls who now play at the Division I level. I’ve spent months surfing the south shore of Oahu. I’ve climbed Yosemite Falls, and gazed up at the tallest redwoods in the world at Sequoia National Park. I’ve done headstands in yoga studios and celebrated when I could move away from using the support of the wall. I’ve played hours of beach volleyball, explaining to many concerned opponents along the way that they won’t catch pneumonia from my hacking cough. I’ve danced in clubs in San Francisco, and had late night conversations under the stars in LA and on dorm-room floors at Stanford. I’ve cultivated meaningful and close relationships with college faculty members I can look up to and peers I see eye-to-eye with. I’ve learned about environmental and human health issues around the world and made it my mission to help fight environmental degradation in whatever small way I can. I’ve discovered a passion for scientific storytelling through writing, radio, photography and documentary film.
But the last three years of college were some of the hardest times of my life. Those years forced me to accept the increasing demands of a disease accelerating faster than it ever had before.
My sophomore year, I was hospitalized 56 days, and did home IVs from my Stanford dorm room for 16 weeks. Every night I’d stay up late to infuse my nighttime dose of IVs, wake up to my alarm at 6 am for my morning dose, and start my afternoon dose from lecture or discussion section. I lost 20 pounds, and couldn’t seem to eat anything without feeling pain or nausea. The complications of that year were unusual, unpredictable, and difficult to treat: beyond my normal pulmonary exacerbations, I experienced a fungal cavitation, allergic bronchopulmonary aspergillosis, pulmonary embolism, fatty liver, gallstones.
Junior year brought more hospitalizations, an episode of massive hemoptysis (or coughing up blood), bacterial pneumonia, and more pulmonary embolisms.
Waking up each day, it became harder and harder to stumble over to the coffee machine because just walking around before my morning treatment was very hard. I adapted to the constant struggle to breathe, let it become my new normal. I let go of many of my expectations and goals for the future, because too many times I dreamed unabashedly and was disappointed, put in my place by a disease that will make itself heard if you ever try to forget it.
I didn’t recognize it at the time, but I was having an identity crisis — many of the interests and characteristics that I thought defined me were ripped away by illness, reducing me to a sickly person. A skeleton just struggling to get through each day.
But then, my senior year, I finally figured out how to live a happy life no matter how sick I get. That winter, when I was hospitalized for 21 days, there were 5 days that I remember being miserable, recovering from surgery; from the rest of the three weeks, what I remember most is laughter. Friends visiting. Conversations and relationships with doctors, nurse practitioners and nurses, respiratory therapists, housekeepers, hospital transporters. Flowers by the bedside, pictures on the wall, good food cooked by my mom. Going outside in the rain with my IV pole in tow and doing lunges by the fountain to keep up my strength, braving the stares of onlookers. That hospitalization is representative of the way my perspective changed throughout my senior year, leading me up to this point, the happiest time of my life I can remember in years.
And here’s the kicker — just as I came to terms with living with CF at any stage of the progression, I got a second chance at stability. In my family, we always used to say that when you have CF you don’t get second chances, and that that’s why every single decision is so important. Once you lose lung function, we would say, it’s probably permanent. My lung function was around 40 or 45% at the end of my senior year, and that’s where it would stay. Or so we thought.
Then we found out about a clinical trial for a drug called Ataluren, happening in Long Beach. The drug is the only one that acts on a type of genetic mutation called the nonsense mutation, which causes a nonfunctional CFTR protein due to a premature stop codon in the DNA. My family fought hard for months so that I could be the very first patient enrolled there, and I started taking the drug a few days after graduation.
This summer, I felt healthier than I have in years. Now, my lung function is in the mid to high 50s, at a level I never thought I would see again. I attribute a small part of that to hard work, but the majority of it to this miraculous drug.
This drug would not have been possible without the dedicated efforts of the Cystic Fibrosis Foundation. CFF does incredible work pushing drugs through the pipeline so that people like me can benefit. But their work is not done. There are thousands of mutations affecting people with CF, and different drugs work for different types of mutations. So on behalf of all the CF patients out there who have benefitted from new drugs, or who are still waiting for the right one for their mutation, I want to thank you all again, for being here, and for contributing to the fight against cystic fibrosis.
So that one day, our median life span can match that of the average American. So that one day, we can all breathe easy.