“From the moment it begins beating until the moment it stops, the human heart works tirelessly. In an average lifetime, the heart beats more than two and a half billion times, without ever pausing to rest.“ -The Human Heart
“What did it feel like touching death?” Alisa Guthrie asks her husband, Dr. Christopher Cogle.
During his medical fellowship, Chris remembers walking quickly with other fellows from a lecture hall to the hospital. Chris had a pacemaker. “Being shocked by a pacemaker feels like Mike Tyson or Mohommad Ali coming up to you and punching you in the chest. It’s so powerful it drops you to your knees. It could happen at any time.”
“I felt like I was walking too fast for my body and suddenly, I got the boxers punch and fell to my knees.” Chris tried to play things off. He got back up and boom, he was shocked again. He fell to his knees. The other fellows asked if they could help, but Chris said no. “I was so embarrassed; embarrassed by my body and my inabilities.” Chris was shocked 23 times. Finally, someone took him to the emergency room. A week later Chris woke up in the hospital. “You died and you’re back,” said the doctor. They had turned off his pacemaker. That was beginning of the end of his old heart.
Chris has Emery-Dreifuss (pronounced: em-uh-ree dry-fuss) Muscular Dystrophy. Muscular Dystrophy (MD) is a genetic disorder that weakens the muscles that help the body move. As muscles weaken mobility is gradually compromised so that certain things we take for granted, sitting, walking, jumping, running, become increasingly more difficult for people suffering from MD.
“As a kid, I knew that I was different from other people,” says Chris. He is average height; handsome with big brown eyes and and a youthful voice. To me he looks and sounds like a typical 36 year old, perhaps even younger than his 36 years.
“I realized I couldn’t run as fast. I dreaded potato sack races,” explains Chris. “For the first ten years of my life, no one knew what it was. I was told, I had ‘contracted heel chords.’ I would come home from school and my parents made me stretch my ankles for 30 minutes.”
“Denial does have it’s benefits,” says Chris. “I overcompensated. I remember as a boy, trying to come to grips with muscular dystrophy, I would actually go outside in my backyard, out of eyeshot of my parents, and I would try to leap into the air and fly like Superman. There was a couple of times when I was in the air for more than a second and I actually felt that I could take off. I think there was a point in my life when I was given the option of succumbing to what I had or the choice was to fight this thing.”
In the hospital, Chris remembers when the doctors told him they had found a heart donor. “I was feeling very cold, very depressed, and I remember them telling me, ‘Good news we have a donor, but the donor is older.’” The donor was in his sixties and the doctors couldn’t guarantee how long the donor’s heart would last. They told Chris that he had two minutes to decide about taking the heart. “It was probably the hardest decision, and my answer was no. And the doctor said, ‘Well you do realize that you could die in the next couple of days?’ I still felt like I had to take this gamble.”
Two days later, the doctors came in and said that a young person had died in his twenties and this young person wanted his heart to go to someone who needed it. I was very sad because again someone had died.” But Chris accepted this new heart.
“How are you living your life differently?” asks Alisa.
“I think of the donor everyday. I feel a sense of urgency that I never felt before. I only have about 30 years with this heart. This is the challenge of being Superman again. I’ve got 30 years to fly. I work everyday of the week but we also take a month off for vacation. I have no apologies and I don’t ask my employer for permission. I am living for two.
“If you could say something to the donors family, what would you say?” asks Alisa.
“I would say thank you. From the deepest part of my heart, thank you.”