Trent and I Were Supposed To Die
by Ken Yegan

Trent Sullivan in March 2006

I was supposed to die in l965. Trent was supposed to die in l994. We did not die. Chronologically, this story starts in my senior year in high school. I was captain of the varsity swim team. I wanted to go to the United States Air Force Academy but I could not pass the physical examination. Seems as though my heart waves are opposite of everyone else's heart waves. When the technician/nurse at Castle Air Force Base near Merced California saw the waves, he checked all the electrical leads on my chest remarking that he must have made a mistake in hooking me up. I wasn't worried. He ran it again with the same result. The next thing I knew, there were half dozen technicians/nurses and doctors hovering around me. They ran it several more times with the same results. That's when I started to worry. My mother was brought into the room. The chief doctor explained that I had flunked the physical, would not be going to the Air Force Academy and that I should immediately see a cardiologist. My life was about to change. My mother cried the entire trip back to Fresno. She was so distraught that I had to do the driving.

I spent the next several months in doctor's offices, lots of doctor's offices. My swim coach, who taught biology, accompanied me on one such trip and got into an argument with one doctor, protesting that no one who could swim like I could swim could have heart trouble. The doctor told him that he was awfully cavalier with my life. I can remember this like it was yesterday. The Doctor asked coach if he wanted to take personal responsibility for my having a heart attack while in a race and dying at the bottom of the pool. My coach did not appreciate this comment. This was the first time a doctor had expressly mentioned the word, death. My mother was still crying. This doctor told me that my swimming career was over and that I should lead a sedentary life. I was in denial and did not accept the notion that I was going to die of a heart attack. But I did not know how to explain the opinions of the doctors who thought that I was going to die. I could not just ignore their opinions.

For the next several months, I couldn't sleep. I thought if I stayed awake, I would not die of a heart attack in my sleep. I would lay in my bed looking at the ceiling and listening to my heart beat. Doctors had asked me if I was "aware" of my heart. I had no idea of what they meant but laying there looking at the ceiling, I became "aware" of my heart. If you think you have a heart defect, you become aware of it beating as you look at the ceiling.

This constant preoccupation with death was pretty scary for a teenager. All of my teachers were suddenly interested in my health as each had been warned that I was about to have a heart attack in class. Next to my name in the grade books were the letters, "HT", shorthand for heart. I figured out pretty quickly that that meant I was at risk for collapse in the classroom. Classmates were offering to carry my books and people looked at me as if they were going to witness my last breath. I felt so alone. No one seemed to understand that I was alive. They only understood that I was about to die.

Well, we finally went to a heart specialist in San Francisco. This was a somber trip and the whole way, I was waiting for the last shoe to drop, i.e. that he was going to tell me I had two weeks to live. The doctor gave me all of the standard tests. We talked for quite awhile about my activities. This was a long time ago but I distinctly remember him telling me that even if he gave me a clean bill of health, perhaps I should not risk a short life for the pursuit of athletics. Well, a couple of weeks later, he sent us a comprehensive report. In the intervening time, I don't think I slept at all. The bottom line of the report was that there were no guarantees in life and that in his best medical judgment, my heart was normal for me but compared to others, was abnormal. Even at age 17, I did a quick English to English translation: I was back on the swim team. I graduated from High School and went to the University of California at Santa Barbara where I enjoyed a successful three years on the varsity swim team.

A lot has transpired since I was supposed to die in 1965. I have had a pretty normal life. But, for several years I kept thinking about all of my doctors who predicted my death by heart attack. Maybe my doctors were wrong.

Instructor Trevor Hildebrand and Trent Sullivan in March 2006

I met Trent about two years ago. He was twelve years old and weighed about 45 pounds. The doctors were not wrong about him. He needed a heart transplant in the first year of his life and time was of the essence. I guess for a short while, he died when his old heart was removed and his new heart was not yet "hooked up". So even if he died in l994, he was reborn a few minutes later.

Trent was enrolled at ski school at Disabled Sports Eastern Sierra at Mammoth Mountain California. This is an incredibly worth-while non-profit organization which teaches skiing and snowboarding to disabled children and adults. I have been a volunteer for several years. I had seen Trent in the program but I had not taken him out on a lesson. One night while having dinner with a friend, I saw him and his family. I walked up to him as he was playing a game of pool. I asked him how he was doing. He was taken aback. Maybe his mother told him not to talk to strangers. Then he saw my Disabled Sports baseball cap and he lit up like a Christmas tree. I told him that I would like to go skiing with him sometime. He said that would be fine. He has a sweet disposition, a good attitude, and is quite intelligent.

Trent Sullivan in March 2006

The next day, I went out with Trent as a secondary instructor. We were on Sesame Street, an incredibly flat beginner run. Trent was on a leash, pretty much a rope which secured him to the primary instructor so that he could not get away. He viewed the leash as a lifeline, a security blanket. He was afraid that if he got going too fast and hit a tree, he would have a heart attack and die. I could identify with his feeling of vulnerability to heart attack. I watched him quietly for several runs as a he cautiously made his way down Sesame Street. I said to myself: I wonder if this kid lays awake at night thinking he is going to die if he falls asleep. I wonder if he is "aware" of his heart. I wonder if doctors were telling him that he was going to die. I did not put these questions to him.

I knew he could ski without that leash. He just needed some gentle persuasion. So on the next chair ride up, I told him that he didn't need the leash and that I could out-ski him and stop him if he got into trouble. He got real quiet. To say he was not persuaded would be an understatement. His look of quiet turned into a look of fear. I said, "Trent, I have not lost a student yet and you are not going to be my first." I could see that I had given him some confidence and perhaps he viewed me as his lifeline, security blanket.

Then, with the permission of the primary instructor, I explained that I would ski backwards in front of him while he would ski forwards. He could keep the leash on and the primary instructor could hold onto him from behind. I did not give him a chance to debate. I just got down, pulled on the tips of his skies, got him into a wedge, and kept telling him to keep his weight on the downhill ski. He was so light that I could shake his ski tip to show him which ski was the downhill ski. We soon developed a rhythm and before you know it we were riding up the chairlift again. I said, "Trent, you know that the leash is dragging behind and the other instructor is just letting it go limp on the ground." He looked at me in disbelief. When the primary instructor agreed, he agreed to remove the leash altogether. He actually threw it on the ground as if to say: "I no longer need you!" This was a major breakthrough for a young man who wanted to establish his skiing independence. This also was a significant in the bigger picture, he was establishing his independence in life.

We did several more runs in this mode and each time, I would remove my hands from the tips of his skis a little more and a little more until he was just skiing toward me while I was skiing backwards—nice slow controlled turns in a wedge. You should have seen his face. I will never forget his smile. He was so proud and I was proud of him too. We have been friends and ski buddies ever since. He is now out of his wedge and is on the verge of consistent parallel turns.

Trent and I did not die. That we found each other at Disabled Sports Eastern Sierra seems serendipitous: Two kids, one who was told that he would die if he continued to pursue competitive swimming. Trent was too young to be told anything, but was obviously in acute danger of death by heart failure. I may have taught Trent how to be an independent skier but, unknown to him, he has taught me and the other Disabled Sports volunteers a great deal about life. His disability is something that he lives with everyday. He is on a life-long regimen of medication for his heart and he has other health issues as well. He is about one half the size of a normal teenager and this has created some other issues which he has learned to conquer. Through it all, he is a wonderful young man with a sweet disposition. He has courage beyond description for which there should be a gold medal. That he is able to cope with these issues in a cheerful way makes me ashamed of myself when I complain about little problems in life that, at the time, seem overwhelming. Teaching Trent to ski, helping him to deal with his health issues, and helping him to be independent in life, puts my life in perspective. Volunteering in the Disabled Sports Program is therapeutic for the student as well as the instructor.

Trent and I just skied together for three days. We are now skiing off of Thunderbound Express, Broadway Express, and Stump Alley Express. These lifts lead to challenging intermediate level runs. Next year, he faces new challenges as he starts high school. All of the instructors at Disabled Sports, Eastern Sierra have a special place in their hearts for our little buddy. By the way, he is fond of chocolate milk, especially the chocolate milk from Starbucks. He has gained weight and stamina. Best of all, he has gained confidence in life. Trent and I are going skiing again in a couple of weeks.