Brave – Bravelets

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Posted on September 10 2014

I am 24 (25 as of midnight!) and over the past few years I have been battling multiple rare, complicated, and poorly understood medical conditions. Many of my issues are caused my Dysautonomia, or malfunction of the autonomic nervous system, which controls "autonomic" functions such as temperature, heart rate, blood pressure, and digestion.

I was a student in Boston, loving life and interning at Children's Hospital Boston while pursuing my dream of becoming a Child Life Specialist. I always knew that I wanted to work inside a hospital - the intricacies of medicine and the human body fascinated me. But even more, the resiliency of children facing seemingly unsurmountable odds within those hospital walls…THAT is what drew me to the field the most.

However, I never imagined that in an instant my life would change…that I would be facing the biggest battle of my life within those hospital walls. I became a patient and it changed my perspective…and my life…in ways that I never imagined possible.

Over the past 2.5 years, I went from being "chronically ill" but riding the waves and relatively stable…to acutely ill and fighting for my life. I have spent up to 4.5 consecutive months in the hospital…and approximately 14 months of the past 2 years inpatient. My birthday, Thanksgiving, Christmas, Hanukkah, New Years, Mother's Day, Father's Day…I have spent virtually every holiday in the hospital. I went from being a relatively active person, to unable to walk or even stand without passing out - relying on a wheelchair. I have had numerous surgeries, and rely on IV infusions and nutrition to survive. And perhaps most heartbreaking, because of these illnesses I have had to take medical leave from my dream school…internship…city…life.

But what makes me brave is NOT my illness, but rather my will to keep moving forward. The will to get up each day and work with what I've got. Life is far from perfect…but I am alive. I am breathing. I have loving and supportive family, friends, doctors, nurses, teachers, advisors…people who make life worth living. People who make getting up in the morning and facing the day a little bit easier. I am brave because of these people. They make the struggle worth it.

I have spent the past year and half in physical therapy…trying to strengthen my body and my mind. I have made great strides and am out of the wheelchair! I still have far to go, but I'm getting there. No, I am not cured. Chronic means chronic. But I hope that every day is a step towards finding a cure…or perhaps even better treatment options to improve quality of life for all those patients facing rare and poorly understood conditions. Awareness and research for one is a step in the right direction for ALL.

I am humbled by this journey. It is a journey marked with pain, sadness, and loss..But I believe there is hope in seemingly hopeless situations. I believe that this is only the beginning. That this is what makes me who I am. That someday, I will look back and say, "Wow, I did that. I lived."

"What lies behind us and what lies before us. Are small matters compared to what lies within us." ~Emerson
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