Scar Tissue

There are times in life when we must find the strength we never knew we had, moments that test our resolve. These times of struggle almost always leave marks, some we can see and others that we can only feel in our minds. The year I was diagnosed with Muscular Dystrophy was some of the most difficult times I have ever lived through and it certainly left it's marks. That part of my past is not something I talk about often but it is always with me—it is my scar tissue. 

I was around the age of five when it all began, up till that point my childhood had been relatively typical. My gym teacher, one of the most lovely and caring people you will ever meet, first picked up the fact that something was different about me. She noticed that I was physically lagging behind my peers. My parents had never noticed that anything was out of the ordinary because I had never really shown much interest in physical activity. Spoiler alert, I was not just being lazy. 

When my parents attempted to get me to exercise more it started to become apparent after about a year that something was medically wrong; despite having killer calves, I was just simply not gaining muscle mass. What followed was a brutal and unrelenting year of testing, where I found out firsthand what it was like to be a lab rat. 

No matter what Grey's Anatomy may show, arriving at a diagnosis can take an extremely long time and doctors do not always have great hair. Much of this time in my life is somewhat of a blur, I do not think I entirely understood the gravity of the situation at the time. I do, however, remember little bits and pieces like fragments of broken glass. It is an odd thing, what we remember and what fades into darkness. I remember the smell of doctors offices, the pinch of needles, the stale boredom of waiting rooms and the ominous feeling that hung over everything.

I vividly recall a conversation I had with my father around this time, It has stuck with me all these years. While I was sitting on the floor playing, I remember asking him what he thought was wrong with my body. I was an extremely inquisitive child and my dad was always the person I looked to for all the answers. A sadness washed over his face as he explained to me that he simply did not know.

I do not think I will ever truly understand how difficult all of this was for my parents—feeling completely helpless. I could sense their fear but I always felt safe and loved regardless. I am so grateful for their incredible strength in a time of complete uncertainty. 

When one of the many doctors I had gone to see, suggested that I possibly could have muscular dystrophy my parents were terrified. The idea of their child having that "Jerry Lewis thing" was the worst case scenario. Hoping to rule it out the doctors decided to perform a muscle biopsy, a minor procedure to test the muscle tissue.

There is a rather funny story about the biopsy that my parents and I love to tell. The day of the preop appointment I happened to receive a very inexperienced med student from upstate university hospital. The students began to appear visibly worried when she was unable to find my heartbeat with her stethoscope. After a moment, my precocious six year old self subtly pointed out the fact that the rubber tubing on the stethoscope had become disconnected. She was quite red in the face at first but joined us in a good laugh about it.

The biopsy itself was fairly uneventful except for the scar and the very trippy anesthesia induced dreams(which were awesome by the way). The medical staff could could not have been any more kind and pleasant. Unfortunately, the results were inconclusive and we still did not have a diagnosis. At which point the doctors decided to run a blood test specifically looking for indicators of Muscular Dystrophy, one final test.

On May 2, 1998, we received the infamous phone call that would infinitely change our lives forever. That fateful day which also happened to be my Mom's birthday, we learned of the reality that I had Duchenne Muscular Dystrophy and judging by the symptoms, my brother Andrew did as well. This brutal news was made even more difficult by the fact my Mom was eight months pregnant for my brother Danny, we had no idea whether or not he would have the disease also(he did not). In one fell swoop our family's ideas of how the future would unfold, began to dissolve. 

At the time everything felt so dark, so unfair but we endured, we gave each other hope. We learned to adapt, evolve, survive. When my brother and I were diagnosed, we were not expected to live past our teenage years but we have made it to 20 and 23 years old respectively, and we are still going strong. I have learned to love my body, to love my life and to love who I am. We are not defined by the depths of our scars but they are pieces of a whole. All and all, we are but the sum of our parts and the depth of our hearts.