The fluffy comforter embraced me as I prepared for sleep to take over my body. As usual, my dad snuggled me closely, wishing me a good night’s rest. Before he got up to leave, my nine-year-old self asked, “Daddy, am I going to die?” I remember thinking that I wasn’t afraid of it. I just wanted to know if it was going to happen. He must have been expecting the question, because he didn’t appear to be caught off guard. I felt the weight of the bed shift as he sat back on the edge. He took a breath and replied, “No. No, you won’t.” The lights flicked off and I heard the footsteps of my dad leaving the room.
Two weeks later I was admitted to Saint Mary’s hospital at the Mayo Clinic, where I was diagnosed with Crohn’s disease. The sickness that I had been battling for over a year now—stomach aches, fevers and weight loss—had a name and it was in the form of a chronic disease without a cure. A hefty dose of steroids helped me bounce back in time to start fourth grade with my peers, but that was just a Band-Aid for a more complicated problem. The many trips to the bathroom, mood swings due to medication and fatigue made me realize that although I now had a diagnosis, my life would never be normal. Part of me felt as though I had no control over my own body.
In March of fourth grade, I found a part of Crohn’s that I could control—activism. After countless hours of fundraising via email, phone calls and door knocking, I was the top fundraiser at the annual bowl-a-thon for my local chapter of the Crohn’s and Colitis Foundation of America (CCFA). I had found it. The thing that helped me stand tall and take ownership of my disease was actually becoming more involved with it. From there, it all took off and I have been advocating for individuals with Crohn’s disease ever since.
I started small: walk-a-thons, volunteering for the CCFA gala and general fundraising. But I wanted to do more. I wanted to become more involved and I wanted my story—and the story of thousands like me—to be heard. I wanted to make a difference for all of the people living with Crohn’s disease.
The first time I felt like I was taking personal initiative outside of the CCFA in making the world better for people with Crohn’s was in seventh grade. My family went to Washington, DC, for a weekend to lobby senators to pass bills that give better funding to Crohn’s disease research. I spent days going door to door in the Capitol, telling my story to a captive audience. While the bill didn’t pass, I made a giant step in becoming more open about the challenges I faced in the hopes of a brighter future.
While I enjoyed the work I did for CCFA sponsored events, I wanted to do more. In 2006, I found a place where everyone is educated about inflammatory bowel disease (IBD); this is because everyone has it. This place is the CCFA’s Camp Oasis. I have benefited so much from having relationships with other people who are going through the same thing as me and I know the importance of having the opportunity to connect with other individuals who suffer from IBD. Because of this, one year later, as a ninth grader, I created Project CURE so that everyone does have that opportunity. For Project CURE, I make and sell bracelets to raise money for the camp. Through selling bracelets at various fundraisers, art shows and on the internet, I have donated nearly $8,500 to date. That is enough to provide scholarships to over thirty campers.
In eighth and ninth grade, I used my personal experiences to reach patients individually. I was selected by the CCFA local chapter to be the 2007 Youth Ambassador. I mentored newly diagnosed kids, visited patients in the hospital and gave speeches to hundreds—teaching me to not only be confident in myself and my story but also how to interact with children dealing with the trauma of being newly diagnosed.
However, the first time I felt like I made an immediate impact to an even wider group of people was in ninth grade at the Minnesota Capitol. My breath sped up and my palms were sweaty as I followed a lobbyist though the corridors of the building to the room where I would be testifying. I testified for the Restroom Access Act. It passed. Now, in my home state, people with medical conditions requiring immediate access to restrooms must be granted access to bathrooms that would not normally be considered public.
While advocating for Crohn’s disease, I have also managed to stay on honor roll, participate in two choirs, play in three orchestras, become editor-in-chief of the yearbook, be a peer leader and act as co-president of my school’s environmental club. As I found my voice in the CCFA community, I found my niche in school. I was able to be involved in things I was really passionate about while dealing with the struggles of a chronic disease.
Living with Crohn’s disease has given me a unique set of skills: it is my responsibility to use those skills to make a difference in the world. My family teases that I will adopt all of the orphans in China, make a polar bear rescue center in my backyard and rebuild all the schools in Haiti. Crohn’s disease hasn’t just affected my involvement with the CCFA and school, it has also impacted the way I see the world. Because I cannot always control the way my body acts, I have been more driven to fix the things that I can help. I volunteer at theater camp, take pop cans out of the trash and put them in recycling and I try to brighten other people’s day. I dream of what will come in the future: joining the Peace Corps, composting in the school cafeteria and changing one person’s life.
John F. Kennedy once said, “One person can make a difference and everyone should try.” I believe that. I believe that one person can make a difference and one person can change the world—even if it only changes one person’s world. Crohn’s disease has defined who I am and it has helped me discover who I want to be. I want to leave a mark on this world. I believe I can continue to make a difference and it is my responsibility to try.
JFK believed in us. He made us responsible for taking care of our country. Each person has the ability and the responsibility to make a difference. What are you going to do?
Thanks for reading. Have a wonderful day!
Laurel
If you would like to purchase a bracelet please visit: www.etsy.com/projectcure
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