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Beyond Boundaries

At the age of seven I was admitted into Miami Children’s Hospital with what seemed like a bad case of mononucleosis and was diagnosed with Juvenile Rheumatoid Arthritis two months later, officially feeling like an outsider in my own body. As a second grader, my breakfast table became an over-flowing mountain of pills, and my parents began paying for weekly injections of Enbrel and visits to the Rheumatologist. The energetic little girl who danced ballet, ran cross-country and played soccer was a thing of the past, and my after school activity shifted to physical therapy. Trying to adapt to “normal” life again was impossible, because my idea of normalcy had to change forever. I feel that this information, however does not describe me at all because I did not choose it for myself, it just happened. I believe that what defines a person is the way they deal with the situations at hand. My arthritis opened my eyes to a world where boundaries and limitations could not exist, because if I took them too seriously, they would take over my life.

The first time I really accepted my condition was when I realized I was not the only person suffering from it. I was used to being “the weird one” or “the weak one” among my peers. At a sleep away camp called Camp Funrise, I was not only understood, but I realized that other people had it way worse than I did. That first summer was when I became an advocate for the Arthritis Foundation, and the American Juvenile Arthritis Organization (AJAO). Since at this time I was unable to participate in strenuous physical activity, I had found my passion for music. I began singing at local, regional and national events for the foundation and at AJAO conferences at the age of nine. I met people who inspired me to do more with myself than the expected, especially since people tend to expect far less from a “disabled” person.

Camp had completely changed my life by the time I was twelve, and I then became a counselor in order to hopefully be a beacon of light and optimism for other kids like myself. I volunteered for five summers straight before moving away for school, but I still talk to the campers on a regular basis. I feel that the bond we’ve shared goes beyond campfires and field trips, and that there is an indescribable mutual understanding by two people who are fighting the same fight. Furthermore, I feel that this quality in children is the most pure, genuine, and important thing in the world.

My senior year in high school, I decided I wanted to take my personal fight a step further. I am a proud member of Joints In Motion, the Arthritis Foundation’s marathon team that runs to fight against what had me "limited" in the first place. I was only seventeen when I joined, and I was one of the two people on the team who actually have arthritis. I have not been medically cleared to actually run the race, but have trained and raised enough money to be named an honorary team member. This is an accomplishment I value very much, and hold very near to my heart. To this day, one of my life goals remains to be finishing the marathon with my team.

After graduation, another one of my life goals suddenly became attainable. This goal was to move to Los Angeles and go to college. I had to wait and study one year in Miami before leaving, and finished my freshman year as a Dean’s list student with a 4.0 GPA. While in Miami that year, I realized I could make an impact beyond my local community. I became an active member of another non-profit organization called the ONE Campaign, which works to eradicate world poverty and AIDS. I also went for two summers on mission trips to rural Mexico, where I brought music and hope to very a poor community in the Tabasco region. In hopes of moving to California where I would be completely on my own for the first time, I spent all year mastering the skill of giving myself my own painful Enbrel injection. This for me was a huge leap forward considering the years of post-traumatic stress and seizures instigated by anything related to medicine.

I worked extremely hard to get to where I am today, at Loyola Marymount University pursuing a double major in Sociology and Music. I left behind everything I knew and my entire support system to get a quality education in the city of my dreams. It takes courage to take this kind of action. I am the second of four kids, and am the first to go so far from home. This scholarship would allow me to continue my education without impairing the futures of my sister or little brothers. I have worked my entire life for a chance to be truly independent, because I have always felt that I owe something to someone, or that I am not enough to truly survive on my own. For someone who has relied on other people and medication for so long, living alone is extremely meaningful. However, I would never want to jeopardize my siblings’ dreams for my own, nor endanger my parents’ well-being (especially during these times) by having them need to take out yet another loan to pay for my tuition. This scholarship would give me the opportunity to keep moving forward and to continue a life where boundaries and limits are nothing more than a figment of my imagination that I can face with a smile.

We create our own limits. We become blinded by our “boundaries” and simply do not take the initiative to notice when there is an opportune moment to make our own decisions and be free from all constrictions. In other words, people can get too immersed in protecting themselves and avoiding the freedom that comes with having no boundaries at all because it is simply the easiest thing to do. Conforming to this ideology is simply impossible for me. I believe that because of my past, present and future as a person with arthritis, I have been blessed to notice that I can take control. I have known nothing more for as long as I can remember. I quickly learned that my goal was not to cope, but to live; to live beyond JRA.

Ana