Wednesday, July 4, 2012
Nine years ago today, I was sitting in a little sailboat on the Charles River in Boston. The boat moved slightly in the water, the smell of hot dogs hung in the air. There’s arguably nothing more exciting – especially to my 11 year old self – than being in Boston for the 4th of July. It seemed like I was on the verge of growing up; I was about to start junior high in the fall, the world was beginning to open wide. That night as we watched the fireworks, I tried to forget about the pain and the cramps stirring in my belly and focused on the fireworks that exploded high in the sky and twinkled off of the water. It was about three months later when I was diagnosed with Crohn’s and completely devastated. I felt empty and broken and cheated out of the life I had worked hard for. The bright and shiny future I had envisioned for myself settled into ashes.
And when I think of that, the heartache that I couldn’t see an end to, it makes everything bittersweet. Soon after being diagnosed, I remember being in my basement and looking at old photos. I saw pictures of myself when I was very little, and would smooth my fingers over the image, wishing I could have told myself to lie about my symptoms and never be diagnosed. For me being diagnosed was like being punished, it was unjust and I couldn’t understand the chronic state of the disease I was told ravaged my intestines. And now I think how different my perspective is, how much has happened in the last 9 years that have changed who I am physically and emotionally.
I am not my IBD. But I am who I am because of the experiences I’ve had because of my IBD. Fundamentally I am the same person, but the lens Crohn’s has given me has shown me the world in a different way. The misunderstanding I’ve faced can make me guarded. The compassion I’ve encountered makes me grateful. The pain I’ve endured makes me mindful.
In 9 years, so many things have changed. Not only how I see and understand my disease, but perhaps more importantly my involvement with IBD organizations and the resources we’ve been able to build together as a community. 9 years ago there wasn’t a blog or a Facebook page or a book to give me support. And when I stop to think about what’s happened in the past 9 years, it only makes me excited to see what the next 9 years will bring. More support, more awareness, more treatments.
When you’re on a slow moving train, it can be hard to tell if you’ve moved at all. But then you blink and you’re 100 miles down the tracks. Days like today make me think about everything that’s happened throughout my IBD journey so far, and it makes me smile on how much things have changed. Since I go to school in Boston, I run on the Esplanade near where the 4th of July concert is. Sometimes when I’m out of breath from running, I stop and look at the water and the sailboats still bobbing side to side and think of the little me that sat there so many years ago. And then I think the same exact thought I had sitting in that boat. I close my eyes and say to myself, I’m exactly where I’m supposed to be.