By Sarah Geissler
I watched as the cement beneath my feet appeared unceasingly like the perpetual roll of ocean waves. I thought about how clean it had once been, and how in the matter of a day it had an entirely new appearance. The surface stared back at me unrelentingly, until I was suddenly jerked from my planet and stuck back in to reality by a man who appeared to be late for his big city job. My mother walked beside me, it was warm for late September and I had to take off my jacket. It had only been a few minutes since we had stepped through the doors of Mass General Hospital, and already we appeared as zombies in a sea of people who always seemed to be late for something. It’s strange how when you learn something about yourself that should be a dramatic change, it doesn’t feel like it at first. I found myself feeling like I should be more upset, but I just couldn’t get myself to feel that reaction. This was the day I was diagnosed with FSH muscular dystrophy.
Facioscapulohumeral dystrophy (FSHD) is a progressive type of muscular dystrophy that atrophies the skeletal muscles of the body. This disease had already affected my life before I even knew it existed. I no longer had the ability to run and my right arm was dramatically weaker than my left. So I guess I was not too surprised that something was wrong with me. However it was hard to wrap my head around the fact that after years of puzzled doctors and negative tests we had finally found the answer. This is what was circling my mind when my mother and I were walking down the hectic streets of Boston, Massachusetts. I don’t know where we were walking to, but I think it was probably to get our car out of the garage when a red and white piece of paper found its way into my cement watching gaze. I still do not know what divine force made me think to pick up that slip of paper that so many people had overlooked and stepped on, but I am thankful it did.
BMFA: admission one. Two corners were ripped and the once white paper was now a dark shade of gray on one side. My eyes shifted to the expiration date on a creased corner of the ticket, the date said it was good all day. I rushed to catch up with my mother who had not noticed I had stopped and continued to push her way through the congested sidewalk.
“Mom! Look at this!” I gushed as I fell back in step with her. I handed her the ticket and didn’t waste a second before I asked, “Can we go?”
The ticket granted admission to the Boston Museum of Fine Arts. Art had been my savior over the past few years when my passion for sports had been taken away by my failing muscles. We both knew that this was the perfect distraction from the news I had just received, so we began our walk to the home of my golden ticket.
We climbed up the white steps of the museum and were faced with a row of towering pillars. We made our way through the doors and began to weave our way through the rooms of artwork. The paintings were what fascinated me the most. I remember standing alone in a room where one wall was taken up by a single oil painting. The size of the canvas in front of me captivated my gaze. The feeling was like none I had felt before. A single piece of art, or anything for that matter, had never made me feel so small and so transfixed at the same time. As I sat there, drawn into the scene by the swords and horses balancing on their hind legs, I realized that I had my own battle to fight and I wasn’t going to lose. Something as vast as the ocean had not made me feel the way that painting did. However it also made me gather strength. Suddenly I decided that I was not going to let this disease make me feel the way that painting did. I was going to be bigger than it. Standing there in that room with that painting I knew that even though good luck had not been on my side, I had my own extraordinary force looking out for me. I had found the first surge of strength that would be my weapon in this battle.
My mother and I still frequently talk about how that ticket was placed in my path. It was intended to show up on the cement in front of me, and I was meant to pick it up and be led to the museum. Whenever I am feeling trapped by my disease I remind myself about what it felt like to stand in front of that painting. No matter how imbalanced life can seem it is important to trust that the luck will even out, and that we are all being looked after no matter what our beliefs may be. Sometimes all it takes is a little trust in the universe and the courage to find your strength.
You can learn more about Sarah’s story by visiting her website.