Aug 26, 2009
The Light Hasn’t Gone Out
As a fragile four-month-old infant with a bleak medical prognosis, my drive to take charge during trying times first emerged. On the day I was diagnosed with Cystic Fibrosis, weighing not an ounce more than I had at birth, I astonished my nurses by pulling out my own feeding tube. According to family lore, my parents laughed for the first time in weeks, as it dawned on them that the future might not be as gloomy as anticipated.
When I went to nursery school, I remember my mother folding my pancreatic enzymes, mixed with raspberry jam, between soft slices of bread, sparing me from the seemingly long walk to the office for my medicine. I have always loved school and could not bear to miss even one second of it. But I also remember three-hour car rides with my parents to spend 15 minutes with the most innovative doctors, crowded waiting rooms and watching a frustrated receptionist search for a translator to explain to an immigrant father that his son’s pulmonary function test might not be covered by his minimal insurance policy. By the age of six, I had a sense for health care in America.
As a young woman, my childhood perceptions have turned into activism and thoughtful research on the political process. Over the last three years, I’ve spent many months working and interning in Washington, D.C. In the summer of 2007, I began an internship in Senator Ted Kennedy’s office. I was struck by the energy and enthusiasm he brought to his job; gleefully entertaining questions from interns one moment, thundering about the need for children’s health care on the Senate floor the next. However, by mid-summer, my lung function had faltered, and with great disappointment, but a determination to return, I left my internship and Washington to return home for a course of IV antibiotics.
Even when facing a situation that teeters on catastrophe, I remain a fervent optimist. From convincing my pulmonologist to let me participate fully at my college graduation despite a lung infection, to snipping the fake fur from my Halloween costume because it was giving me asthma, to my personal victories over insurance companies, I am excellent in a crisis. Despite the many pills, puffers, nebulizers, sterilizers and airway clearance devices that clutter both my apartment and my life, I have served as president of the largest political organization on the Stanford campus, rarely miss my ballet or yoga classes and worked on a congressional campaign while pursuing a master’s degree.
Last summer, I had been home from Washington for forty-eight hours when I received an unexpected phone call from Senator Kennedy, armed with a rousing pep talk and the promise that there was “a light on in the window” for me when I was ready to return. Today, watching Senator Kennedy fight for Medicaid dollars from his own bed as he battles brain cancer inspires me further as I prepare to begin my master’s in public policy. I am confident that I will return to politics, finding my way to the window with the brightest shining light.
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Written in the fall of 2008.