Thirty-eight years ago, I was born three months premature, weighing one and a half pounds. In the left image above, I’m inside an incubator in the ICU—what would become my home for the next few months—weighing in at two pounds. Though she’s not pictured, my twin sister was right next to me, also fighting for survival. Over the next several months, I remained in the ICU, struggling to learn to breathe, with alarms going off as often as 30 times an hour alerting nurses that I was in trouble. I flatlined and came back to life several times. Each minute was a fight to survive.
I consider myself lucky. I had strong parents to hold my tiny hands through it all. And I was surrounded by some of the best doctors in the field who made sure I had the best chance to survive. And I did. After months of fighting, I was finally able to go home. I went on to live a very healthy childhood with one side effect: at two and a half years old, I was diagnosed with severe hearing loss. The diagnosis would have a serious impact on my life’s journey over the next 38 years.
Can you hear me now?
With my hearing loss, I had to learn how to adapt to a noise-driven world by learning how to read lips to communicate and connect with others. It was a frustrating and challenging process for me, one which took many years to perfect. I constantly felt left out and wasn’t able to participate in social activities with my peers because I couldn’t hear properly. I worked hard to become aware of my environment and learned to be patient with myself and others.
But unlike many other people with hearing loss, I was fortunate to have access to hearing aid technology that helped me to hear better and communicate with others, both personally and professionally. My hearing aids instantly became my lifeline to the world, and I depended on them to connect with people. However, they came at a hefty price: $5,000 each. For ten years, I suffered from wearing one hearing aid because I couldn’t afford a second pair. At one point, I was forced to decide between paying my rent or buying new hearing aids. That experience set me back financially three years.
Turning my hearing loss into a strength
The challenges I’ve faced, along with the skills I’ve learned in response to those experiences, have inspired me to help others with hearing loss and to change the perception of what living with hearing loss means. Over the past 20 years, I’ve worked to increase opportunities and reduce barriers for people with hearing loss at every stage of their lives. From advocating on Capitol Hill and working with innovative technology companies in Silicon Valley, to helping people access more affordable and socially acceptable options, my desire to push for accessible technology has become a part of who I am.
Something as essential as hearing aids—which can cost more than five thousand dollars for a basic model—should be as accessible as a smartphone. People in the hearing health community deserve to hear better without worrying about the social stigma associated with assistive hearing devices. The personal and heartbreaking stories they’ve shared with me about their struggles accessing affordable technology fuel my passion for change.
Whether it’s to save a premature baby in a hospital, or to connect people who otherwise wouldn’t have the necessary tools to embrace the world around them, technology can save and change lives. As that featherweight baby in the ICU, who has gone on to lead a successful career and enriching life—in spite of my severe hearing loss—I’m the living proof. Thirty-eight years ago, with the help of my community, I won my fight to survive. Today, I continue to fight. And each day, I’m more hopeful that we’re closer to creating new opportunities that will empower people in my community to live a better life. Because when that happens, everyone benefits.
[originally published 10.7.2016 on LinkedIn]