Hole in My Heart

It still plays in my mind, only now not quite as vividly. Now it’s more blurred, like a movie from a camera lens wet with rain. The scene is weighted with the same sense of significance and importance, but it’s somehow softened by the cloudiness of the images. The sounds still come with the same clarity as they did the day it happened. My grandmother’s voice on the phone and my cousin beginning to cry, first softly then louder and louder. The sound of denial in my head as I tried to escape the reality of what was happening around me.

I was 14 years old when my older brother died. He was 15. He died in a hospital elevator.

My older brother, Ryan, was born with a heart problem. When we were growing up, our parents explained it to my younger brother, Ross, and me as “a hole in his heart”. (I wonder if they realized my entire family would suffer from that condition after he died.) Ryan was small, couldn’t participate in sports, and was a bit purple in color.

Ryan didn’t have a hole in his heart. He was missing one of the chambers of the heart that brings oxygen to your blood, or that’s the simplistic way my father came to describe it when I got old enough to question the “hole in his heart” explanation.

Ryan’s death had a significant impact on my family. It was like going to a five star restaurant and being served an amazing meal, where the chef prepared everything without any spices or seasoning. Everything around us looked the same, but it was plain and bland. It was like a car with a blown head gasket. There was a loss of power and drive. It felt like we were moving forward, just slower.

Ryan’s death, the wake, and the funeral all changed me. They ripped and tore me like nothing I have experienced before. I didn’t cry until the end of the wake. After spending an entire day either staring at my brother’s lifeless body in a casket or watching everyone I’d ever known and a handful of strangers do the same, I decided to make a request of one of the funeral home employees. On the inside of the casket, above Ryan’s chest, a metal crucifix was hung. I went to explain that if they closed the casket, it would stab Ryan in the chest. While I was saying it, I realized it wouldn’t matter, since he was dead. I lost control and began crying uncontrollably. I grabbed the arm of the funeral home employee and pressed my face into his wool suit and cried till my cousin came and pulled me away. Nothing changed or shaped who I am more than my brother’s life.

Despite the differences in Ryan’s physical appearance, you would never know anything was wrong with him. He excelled in school, was warm and friendly to people, and had an amazing sense of humor. We would sit and watch Robin Williams, Billy Crystal or Tommy Davidson comedy specials and Ryan would do spot on imitations. He was exciting, like the anticipation of a child on a cool night on the 4th of July as that “swoosh” sound hits the air and the first fireworks climb to their colorful, explosive destination.

Ryan’s freedom permeates my life. From my work with juvenile delinquents in group homes as a mentor, to my work with inmates in the Massachusetts Department of Corrections, to my love for the theater, to my passion for connecting people through social media and marketing. Ryan’s strength to be himself and to fight stereotypes and people’s perception of him influences my life on a day to day basis. I am forever changed by the experience of watching him grow, excel, and live; despite the doctors who said he wouldn’t live past a year. He never accepted the label of disabled. He didn’t let the restrictions of his condition limit how he saw himself or what he was able to be, or achieve. The doctors told my parents he wouldn’t live, and regardless of that diagnosis, he lived to 15 years old. He wasn’t able to participate in sports or the other things my brother Ross and I were active in, and yet he became a commercial actor. He achieved success in commercials for toys like “Teddy Ruxpin”, and brands like Marine World and Great America.

Ryan’s work as a child actor brought a level of success to my childhood that my parents could not have achieved on their own. Through the success of Ryan’s acting career we were able to gain a financial freedom otherwise unattainable by the hard work of my two working parents. Our family would take trips to the “Toys R Us” and my Dad would say, “We’re celebrating Ryan today; pick out any toy you want.” From video games to Transformers to the latest GI Joe action figure, I was never without what I wanted as a child due to Ryan’s ability to overcome the challenges of his medical condition. I’m thankful every day for what Ryan’s work provided to our family. Ryan’s condition impacts how I view the world, and how I see the people around me. I am blessed and thankful to have had him as a role model of compassion. Ryan’s ability to live each moment, to see life where others might see hopelessness, has shaped me and challenges me every day. I am constantly trying to live up to the standard of selflessness my brother lived every day of his life.

Ryan’s ability to live and to experience life with abandon is my greatest gift. I miss that freedom every day. It burned an irreparable hole in my heart.