Aaron’s Apple was fortunate enough to have met an ‘honoured ibd hero’. She was brave enough to share her incredible story of hope and strength. Please take the time to read her inspirational speech:
I do not stand here before you today to share what some may call “my story”. Every person has a story. It’s simply my life, my everyday reality. It’s a journey filled with ups and downs, midterms and late night study sessions, big plans to travel and make an impact in the world.
I do not stand here today with the intention of telling you that when I was ten years old my reality was filled with an abyss of what seemed like endless pain, days and weeks of missed school, inconclusive tests, and substantial weight loss. When I look into the crowd I see countless faces who I know understand what I mean when I tell you that my days have consisted of fears of restaurants, because every food seemed to cause pain. And the empty feeling that arises when doctors have nothing to say but to give you a question mark on your situation because medication after medication doesn’t seem to work. I know I especially don’t need to describe the oh so lovely mood swings and chipmunk face of my prednisone days or how the inside of your bathroom tends to seem like your second home. Many days might be troubled by a consistent fear of the unknown. Will today be a good day? Will I even make it through the day?
I stand here today not to describe my own journey, because I was never alone. Rather, I stand here to honor those who kept me warm when I shivered, who let me squeeze their hand as hard as the needle was squeezing my arm, and sat by my side in the infusion center for countless hours as I received my Remicade treatments. I stand here to honor the caretakers, the true heroes of our stories.
Crohn’s Disease and Ulcerative Colitis are often described as silent diseases. You would never know I had a chronic disease unless I shared some of my fun hospital excursions or pill swallowing adventures. For me, I would prefer to remain silent, to not draw attention to myself or the pain I may be facing in the moment. But the caretakers, my family, my friends, my peers, and my colleagues, were never afforded the opportunity to be silent or to accept my silence. These extraordinary individuals were always in on the loudness.
Sometimes it seems like no one sees you in your time of pain. But they do. The caretakers, your true support system don’t need you to try and convey the pain you are in because they can feel it too. They see you in your silent moments. They know that a chronic disease means there is no beginning, middle, or end of your challenge because it is an ongoing one. They know that the best way to support you is to make sure you are not silenced. To ask how you are even when you may be having a great day, my sister is always the first person to ask and although she doesn’t like to admit it, I know how much she cares. This is a true hero, she is one of mine. She’s someone who doesn’t need to be prompted by a big surgery to remind her that, we face challenges everyday. These are the details that do not remain silent in the eyes of the caretaker. The caretakers take the burden of your pain with them every place they go. It is this burden and their stories that are rarely brought to light, and often remain silent.
I stand here to bear witness to the stories of the caretakers, the stories that are never told, honored, or celebrated. The multiplicity of caretaker experiences has built the bridges that I have relied on to become empowered, and to be my own self advocate.
It is my friends who woke me up with celebratory breakfast cheesecake to commemorate my ten year anniversary since my diagnosis and my roommates who join me in pantless parties around the apartment when the waistband on my pants is just too painful to withstand. It is my then ten year old best friend who sat with me on the cold bathroom floor as I locked us in for hours, staring at the daunting cup of medicine that I had to drink. It is my parents who took a photograph of me eating my first sandwich in over a year, who share the true understanding of restricted diets. Or my sister who’s seven year old self asked the tooth fairy to bring her sister a new stomach. It’s my childhood camp counselors who motivated me to win the pill swallowing competitions. It’s my friends who humored me when I wanted to wear a penguin suit as I drank four liters of colonoscopy prep a few weeks ago.
It’s my dad who used to tell me stories about the characters on the wallpaper in the doctor’s office as we escaped our reality or who walked with me for eight hours when I swallowed a pill camera, who let me count the grey hairs on his head when they were drawing blood (there were very few gray hairs at that time) and always reminded me that we had nowhere to go but up. And it’s my mom. The person who advocated for me when I didn’t even know I needed an advocate. Who brought me socks with frogs on them to keep my feet warm during infusions. Who bought me three different wardrobes to make sure to accommodate my weight fluctuations. Who laughed with me when there was really nothing else to do and constantly whispered that all bad things would come to an end. Who held my hand and slept by my side. It’s my mom who spent her days as more than a caretaker, really living my pain until that pain turned into her own and she was diagnosed with Crohn’s Disease herself a few years ago.
Despite the consistent challenges of a chronic disease, I have not lived the last ten years of my life as a patient. I have spent the last ten years of my life being supported. Take a look around this audience. You are directly linked to one another through these diseases. So no I am not here to tell you my story, but to illuminate the notion that I am supported and so are you, every patient, every caretaker, every sibling, or parent. We stand together.
I can never truly express how eternally grateful I am for the love and support in my life, from my caretakers and from this foundation. The details, the small insignificant moments, when compiled, create my story. Crohn’s Disease will never define me, but it will always be a part of my definition and in the definition of my caretakers. I stand here today to tell you that I am a peanut butter fanatic, I am an elephant lover, I am a student of the world, I am an advocate, I have Crohn’s Disease, but mostly I’m just Ashton, and I am here to remind you that
I am not alone and neither are you.