I am an eighteen-year-old living with Multiple Sclerosis. In fact, this August will be two years since my initial diagnosis.
For years I struggled with unexplainable symptoms, visiting doctor after doctor, all of whom concluded the symptoms were mere products of an attention-seeking hypochondriac ... A beginning junior in high school, I endured a few months of irritable eye problems. After what seemed like a marathon of tests, the answer finally came and in August of 2006, I was diagnosed with Multiple Sclerosis. I was only 16 at the time.
Like many others before me, I had no idea of how to react. How do you swallow news like that? There were no words to describe the mixed emotions raging inside. So my first grand idea became to simply ignore it, pretend my condition didn't exist and all would be fine. It would go away on its own ... Need I say that that obviously didn't work in the least. Even as stubborn as I am, I couldn't simply wish the truth away.
All of my life I have been raised as a Christian and have been blessed with many talents. A jack-of-all-trades, I played piano, flute, volleyball, and soccer, did gymnastics, sang as a member in the chorus at Harrison School for Performing and Visual Arts, aspired to be a photographer and was a straight A student. Up until that turning point in my life, my biggest obstacle I thought was going to be choosing what road to take. However, somewhere along the road, I had stopped talking or even listening to God and inquiring about what His plan for my life was. I soon learned the huge lesson that God is not someone to ignore and sure enough, He found a way to grab my attention and permanently alter my perspectives.
Seventy-five days after my initial diagnosis, the lights went off in my eyes, dimming to the point where I was considered legally blind. Instead of worrying about my life calling or even obtaining a driver's license as most 16-year-olds do, I spent my time learning mobility with a cane and becoming fluent in the basics of Braille.
Placed on an unwanted pedestal in a spotlight of high school drama and judgment, I was shown who my true friends were and sadly the numbers had greatly decreased. I began to fall into the trap of wallowing in self-pity, believing that all I had aspired to be was lost along with my talents. If you can't see, how can you play the piano? How can you take pictures? Or paint? Or read music to sing? How do you complete your homework? These were only a few of the questions that rang in my head. Fortunately, God blessed me with the answers to some of the incessant queries, and it is those answers that I have gained a new perspective on my life with Multiple Sclerosis.
The first answer came spontaneously from a best friend. She showed up at my house (I had stopped going to school temporarily) with a box of colored pencils in hand. When asked the obvious question of how I could possibly draw, she simply stated that I didn't need my vision to scribble. "Besides, art isn't always color-in-the-lines-- just draw what you feel." So many times in life we get so caught up in staying inside the lines of the normal: of daily habits, daily routines, or even starting to believe that there is only one correct way to solve a problem or complete a puzzle. MS has taught me otherwise. I now see life as a blank sheet of paper of which you have the freedom to fill any way you like. It's your masterpiece.
Pondering over those questions and my situation, I was introduced to what seemed like a whole new side of life filled with amazing role models unlike those you see frequently on TV. It is then I was introduced to the story of Ginny Owens, a wonderful musician, pianist, singer and songwriter who is fully blind. Her lyrics teach so many amazing lessons that as a Christian I strive to learn. She took her own disability and through it created an outlet for a wonderful ministry that glorifies God.
I was also introduced to the life of Clay Walker. Also a singer-songwriter whose lyrics uplift those who listen and who despite his own battles with MS has used his position to reach out to those in the MS family advocating for awareness and funding research for a cure.
These are the people I yearned to fashion my life after. Maybe I could use my position, a small as it seemed, and become a role model for someone else. My model of thinking became, "If I could help at least one person from what I have been through, then it was well worth it." I learned through my battles with losing sight to appreciate those around me, to stop taking so much of what I had for granted, and to not only listen to my heart, but more importantly to listen to God.
Although I did learn to cope without sight, I was blessed with a full vision recovery after 9 months of difficulty. With my vision back, I still listened intently trying to find out His plan for my life and with help was able to apply this new thinking outside the box philosophy to my life. As a teenager with Multiple Sclerosis, I had not found many venues for support. Almost all the information I found was for adults living with MS or for the teenagers whose parents dealt with the disease. Scarcely anything existed for teenagers who deal with the disease directly.
So I started a project. Having dealt with a multitude of issues including vision problems, health problems, and judgments that stemmed from ignorance about the disease and the ages it affects, I wanted to do something that would incorporate awareness for both the visually impaired and teenagers with the disease. With the help from my vision teachers, my mother, still a teacher at my old elementary school, St. Paul Lutheran, and the staff at St. Paul, I began to get to work. I had my mother's fourth grade, which consisted of 18 students, write stories for younger children around kindergarten age. Edited to focus on words that omitted anything dealing with sight, the stories instead focused on texture and different concepts of location. While I brailed each of the stories, in the meantime I visited the kids, helping them with their illustrations. Each student used different materials to illustrate his or her story, creating a picture that a blind child could feel. While they were creating their stories, the fourth graders were also educated on the visually impaired as well as on the effects of diseases, such as Multiple Sclerosis, and learning that others with disabilities were no different than they were; they just had to go about things a little differently. The stories were donated to the Division of Blind Services to be checked out for the visually impaired children who are learning the basics of Braille. A newsletter was also sent out to the families of the kids throughout St. Paul Lutheran and a fundraiser was started which raised over $800 that I donated to Multiple Sclerosis Foundation to help them start a new teen chapter and forum specifically designed to help bring together the teenagers with MS, yet another project in which I will hopefully be staying actively involved, as the numbers of teens being diagnosed seems to be growing daily.
Although my project was limited in its reach – a local newspaper article and segment on the Tampa area's Bay News 9 – I embrace the ongoing drive and determination to help eliminate ignorance, raise awareness for other teenagers with Multiple Sclerosis, and help others cope. As a National MS Society scholarship winner, I also will be volunteering at its first teen retreat and am ecstatic to get to meet and work so closely with these teenagers like myself. I am determined to help make a difference in one way or another.
I hope and pray for more opportunities to reach out to more individuals, so I can share my faith that with God, anything is possible. Anything can be overcome.
"Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieve." Helen Keller
There's more than one way to color on a sheet of paper.