‘My Motivation, My Strength and My Courage’

Young patient inspires med student, marathon runner

marc-dadiosBy Marc Dadios

Many people ask marathon runners the question “Why would you put your body through 26.2 miles of hell?” The very thought of a marathon can make even the most avid distance runner question their ability to complete a marathon. Most marathon runners tend to have a very strong reason to commit to the training and dedication required to cross the finish line. My motivation for running the 2014 Chicago Marathon was to fulfill a promise I made to a brave teenage boy who lost his battle against Duchenne muscular dystrophy during my third year inpatient pediatrics rotation.

Duchenne muscular dystrophy (DMD) is an X-linked genetic disease meaning that it primarily affects young boys. A good analogy for how this disease works is to think of a bridge that is built with inherently weak, easily breakable supports. The more that the bridge is used, the more that the supports break, and the weaker that bridge gets until it eventually collapses. DMD is a disease of the muscles where the proteins necessary to provide tensile support for their function as they expand and contract during movement are inherently weak or absent. When a child with DMD uses his or her muscles to move around or even breathe, they tear and eventually become unusable. The average life expectancy for someone with active DMD is 17 years because of heart and lung problems associated with prolonged use.

Unable to walk

For the sake of patient privacy and HIPAA, I will refer to my patient, good friend and inspiration as “Jay.” I first met Jay at the beginning of my inpatient pediatric rotation at Rush University Medical Center. Before meeting Jay I had only heard about DMD from my studies during my first and second year of medical school. Jay was only 15 years old but he had an extensive medication list that would make even the most seasoned health care practitioner cringe as well as a medical chart that could have been mistaken for a lengthy Harry Potter book. Although I was initially overwhelmed by the complexity of his case, as I got to know him better, I became much more passionate about learning as much as I could about DMD.

The first time I met Jay, he was very quiet and reserved, lying in his hospital bed surrounded by a variety of stuffed animals (including a great white shark) and covered in a tiger print blanket. His mom did the majority of the talking, stating that Jay was feeling more progressively short of breath. I learned that he lost his ability to walk as a young teenager because of pain and weakness in his legs from his disease. I also learned that he had a younger 7-year-old brother with the same condition, that his mom was their full time caregiver and guardian, and that his dad worked two full-time jobs to support their family.

Dreams of running

Over the next two weeks, Jay opened up to me. I learned that Jay was a very smart kid with grand, sometimes outlandish dreams. His most striking dream was being able to run around like all the other kids do. I told him that I was thinking about running a marathon and he asked: “What’s a marathon?” I told him: “It’s where you run for a really long time!” I remember feeling overwhelmingly sad that day after I left his room because I knew that it was highly unlikely, if not impossible, for him to achieve his dream. Jay’s condition deteriorated throughout his hospital stay, and eventually the mutual decision was made by the family and the medical team to withdraw his medications and provide the best possible comfort care at home.

The day that Jay left the hospital I spent half of my day on service talking to him and his family. I asked him how he was feeling and what he was looking forward to when he got home. He said: “I’m excited to see my friends and to be with my family.” During the conversation, we again talked about how he dreamed of running around with his friends when he got home. It was at this point that I promised Jay that I would run a marathon and carry him with me during the race.

Jay peacefully passed away a few days after leaving the hospital. I found out when one of the attending physicians who was following his case pulled me aside and told me the news. I remember feeling numb with an overwhelming sense of sadness at the news. I had the privilege of speaking to his mom shortly after he passed away and she thanked me for being so present and caring toward their family during their time of sorrow.

Jay inspired me in more ways than I could count. He could easily have looked at all of the negatives about his condition and let it consume him. Instead, he chose to dream as big as he could, as all teenagers should be able to dream. Remembering my promise, I resolved to train for the 2014 Chicago Marathon.

Training challenges

Some challenges that I faced to keep my promise to Jay were daunting. First, I had surgery to reconstruct both of my ankles due to a genetic defect where some bones in my feet did not form correctly. Second, the majority of my training would occur during my busy third and fourth year of medical school. Third, I decided to travel to the Philippines for a month for medical mission work which left me only six short weeks to fully condition for the marathon. Even with these challenges, however, I began training for the marathon. I also decided to run for Parent Project Muscular Dystrophy, a nonprofit organization dedicated to raising money toward research for a cure for DMD.

At the starting line of the Chicago Marathon, I reflected on how the year had gone. I trained hard throughout the year, taking a break in August to go to the Philippines. I raised over $2,000 for Parent Project Muscular Dystrophy, which showed me that others supported the cause that I believed in. I was really happy that my family flew out from California to come support me during my marathon. I also unfortunately sustained a minor hip injury during the six-week lead-up to the marathon. With all these things on my mind, I began running.

I remember getting swept up by the electric, exciting atmosphere of the Chicago Marathon. With 40,000 runners and thousands of viewers along the streets of Chicago, I felt unstoppable. At that point, I felt that nothing would stop me from fulfilling my promise to Jay. By mile 7, however, my left hip began to tighten up from my previous injury. By mile 14, the hip tightness spread to my right hip and went from a dull to a sharp pain. I began to question whether I would be able to finish the race. By mile 20, my quadriceps muscle began to tighten up. When I briefly stopped to try to stretch my calf, my legs began to quiver with pain. I realized that if I stopped at any other point from mile 20 onward, I would not complete the race because of muscle cramping.

Crossing the line

To this day I will never forget the pain, doubt, and borderline despair that I experienced during the last six miles of this marathon. At any other time, I would have stopped. My motivation to continue running that last hour came from my determination to keep my promise to Jay. One of the proudest moments of my life was crossing the finish line of the Chicago Marathon.

Shortly after crossing the finish line, my entire lower body tensed up and I went down with total lower body cramps. Regardless of how much pain I was in, however, all I could think of was how thankful I was to Jay. I strongly believe to this day that Jay’s spirit was with me, particularly during the final six miles of the race. Thanks to the amazing medical staff and an awesome first year medical student, I was able to get back to my feet and limp home.

As I mentioned at the beginning, most marathon runners tend to have a very strong reason to commit to the training and dedication required to cross the finish line. Jay was my motivation, my strength, and my courage during the race. I strongly believe that I would not have made it to the finish line without Jay’s support. I will never forget him.

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