The planned book you’re reading about here—and can learn more about in this video—is my story. It is also the story of many in the community of people who have chosen to join me on a journey filled with fear, hope, sorrow, creativity, great frustration, and equally tremendous joy.
I was born on August 30, 1970. Six weeks later, my parents learned I would never see well. (I was totally blind by age 8). When I was one year old, my mother (who isn’t a doctor) diagnosed my type I diabetes. Even with great care and personal discipline, my blindness makes managing my diabetes very difficult. In confirming my parents’ fears about the diabetes, our doctors told us that the severe seizures it sometimes caused gave me a 50% chance of seeing my fifth birthday and that I was unlikely to live past age 21.
In 1970, diabetics often died young; insulin came from slaughtered animals; we had no at home blood glucose testing and few appliances adapted for people with disabilities; less than 1% of books were recorded in audio form; and disabled children didn’t have the right to go to school.
And yet, by age 30, I had graduated from Yale, Princeton and Harvard, co-created technology that made printed materials accessible to people with reading challenges, (in so doing helping take an early step toward e-books), and won a national fellowship. I had also learned how to ski, become Colorado’s third ranked tenor in 1989, completed a rollerblading marathon (finishing absolutely last!), traveled to 25 states, visited Europe five times, survived three Christmases in the hospital in diabetic coma, and attended my father’s funeral when I was 19.
By 40, I had completed my PhD in Genetics at Yale, earned another national fellowship, advised an acting director of the National Institutes of Health on international science policy, become the Interim Associate Director of the University of Wisconsin-Madison’s $150 million Wisconsin Institute for Discovery, begun research (published in 2012) that showed students planning for healthcare careers often don’t know how America’s 145 million chronic health needs patients manage our health in daily life, and started talking with others about launching a program that now helps 200 students do weekly service with older and disabled patients in Madison, WI.
I had also traveled around the world and kept building connections to hundreds of people who helped me in many parts of my life. Some helped with my often-frustrating search for stable employment—a life-long struggle many of the 56.7 million Americans with disabilities also face.
Others helped with the glucose monitoring and insulin dosage measurements I do as often as possible—a protocol that I can’t do independently because there still aren’t accessible tools that will let people who are blind and diabetic do these essential things safely. Many helped with my teaching, research, and program building work, or joined me in my activities and travel.
This book is about me, my choices and the hundreds of heroes who chose to help me live fully and impactfully. My choice not to let my disabilities keep me from living, growing, learning and contributing was the first step on our journey. By helping me have a full and impactful life, the 110 people in every walk of life who have been interviewed for this book journeyed far themselves. They will say why they came to know me, and how doing so changed their lives. They represent the hundreds of people for whom there can’t be room in a single book, but as is true for all of us, just because someone is “invisible” doesn’t make them unimportant in our lives.
The community of family, friends, health professionals, mentors, supervisors, teachers, students, and many more you will hear from if this book is published, found fear, hope, frustration, and lots of joy with me. Those who choose to help me give me an opportunity to touch their lives, too. As they tell parts of their stories—and help me tell mine—they prove the transformative power of living impactful lives, often in ways we can’t imagine before deciding to do so.