Doing Good Work in the World
Fall, for me, has always been an invigorating month—one I pine for after the intense heat and the humidity of summer have sapped my physical energy if not occasionally my spirit. However, fall now has a new meaning for me. It was this time last year my son had his first seizure and was subsequently diagnosed with epilepsy.
And while the falling leaves and crisp air continue to inspire me, I cannot help but go back to last fall—to October 11, 2011—a day that, in the words of Mitch Albom, “ben[t] my life.”
Tonight I had the distinct honor to be asked to speak at the University of Rhode Island in honor of The Matty Fund’s 2012 Epilepsy Awareness Campaign in conjunction with the College of Business and the Feinstein Center for Service Learning. The audience tonight consisted of 400 “URI 101” business students (freshmen) who will be working in groups to market and sell epilepsy awareness T-shirts on campus (and beyond) from tonight’s kick-off until early November.
With permission of The Matty Fund, I am sharing with you the speech I gave tonight. Please share this blog post with others to spread awareness of the good work of The Matty Fund and to help all people living with epilepsy.
If you go out into the parking lot, you’ll see my car. You can’t miss it. Friends of mine have termed it the “advocacy-mobile,” and they would be right. As an English teacher, I can say my bumper sticker that reads “A thesaurus is not a giant lizard,” tends to garner substantial attention. As an adoptive parent, I have a decal encouraging adoption. And as the parent of a child with epilepsy, I most certainly display a sticker promoting the good work of The Matty Fund. However, there is a sticker on my car that catches my eye every morning as I drop my school bag into the passenger seat of my car. It’s a quote from bestselling American author Mitch Albom, and it reads, “One day can bend your life.”
We know this to be true—no matter where we are on our journey in this life. People are born; they die. Our lives are changed; they are bent in a new and often unanticipated direction. For me, that day was October 11, 2011. I was at work. My children were at their babysitter’s—a babysitter who, in seven years of caring for my children, had never once called me at work. It was 12:30 PM. I was cleaning up my classroom when the front office called and said our babysitter was on the phone. My heart sank. And as I walked down the corridor of the high school where I teach, toward the telephone where she was waiting, I felt as though I were heading toward something irrevocable, toward something profound.
I picked up the receiver and listened as she described what she just saw: Our then six-year-old energetic and exuberant son Edgar had been sitting at the table, uneventfully working on an activity, when all of a sudden his limbs became stiff; his eyes rolled back. He was unresponsive—unconscious. As I listened to my babysitter’s words, nothing was registering. Nothing. I asked, now in a stupor and completely dumbfounded, “What do you think this means?” And she said, “I think he had a seizure.”
At this moment, on this day, my life was bent. If you are sitting in the audience today knowing very little about epilepsy and how it affects the people who have it, the people who love them, the people who are charged with teaching them, I would have been among you. On October 10, 2011, I did not know my son had epilepsy and knew even less about the condition itself. And on October 11, he did, and I had to learn.
We would like to believe that the stigma that surrounds epilepsy is abating. But it’s not. It remains shrouded in mystery and mystique, and there is simply only one way through the mire—education. To say that the work of The Matty Fund is invaluable is an understatement—and a vast one at that. They have helped our family negotiate our path—they are our guides, our mentors, or teachers, our advocates and friends. And they are doing good work in the world—helping to lift the veil that regularly and, I would argue tragically, obscures our society’s understanding and acceptance of epilepsy.
And they need your help.
I often tell my children that the greatest gift you can give someone else is to teach them what you know. As you educate yourself about what epilepsy is—and is not—please share your knowledge with others. Teach them what you know to be true. And know that as you spread awareness, you are helping to eradicate the blight that is placed on those who must contend with this condition. You, like The Matty Fund, are doing good work in the world. And as the parent of a child with epilepsy, as Edgar’s mother, my gratitude is immeasurable.