The great author Edward Estlin Cummings once said, “The most wasted of days is one without laughter.” I keep this quote as my personal life challenge, and I plan to never waste a day of my life without at least one moment of laughter.
I am a wife, a daughter, a sister to my brother and a sister of Alpha Gamma Delta’s Zeta Gamma Chapter at Gannon University. I am also a friend, a self-proclaimed comedian and a multiple sclerosis patient. None of these things define me on their own; they are each a part of a whole who make me the person I am.
In December 2012, I began to lose sight in my left eye. It got so bad that I was making makeshift eye patches out of sticky notes to get through my work day. I began my search for a diagnosis at my eye doctor, who didn’t see anything wrong and suggested I see my family doctor. My family doctor sent me directly to an ophthalmologist (a specialist in medical and surgical eye problems), who sent me for an MRI that day to check for swelling in my optic nerve.
Later that evening, the ophthalmologist called to let me know that there was swelling in my optic nerve (called optic neuritis), and there were also white spots on my brain (called lesions), which were usually associated with multiple sclerosis.
To be 29 and faced with a diagnosis of multiple sclerosis is stunning and scary, for both me and those in my life. Multiple sclerosis is unpredictable and looks different in each person who has it. There is no road map, and that is perhaps the scariest part.
Telling friends and family was also a challenge, because really the only thing harder than explaining multiple sclerosis is spelling it!
I received a five-day treatment of steroids to help with my eyesight. The steroids were effective and my eyesight did come back. I was so happy because I wasn’t looking forward to a life of trying to find fashionable eye patches!
I visited the neurologist for the first time on Jan. 2, 2013, where I received my definitive diagnosis of multiple sclerosis. While not what I wanted to hear, it was nice to know what was causing the problems I was having. But the next day, I started losing feeling in my feet. A feeling that moved up my body to my waist, it was almost like my legs were asleep all the time. This was a feeling that lasted about seven months. With my diagnosis I have decided to live my life to the fullest, to set goals for myself and make sure I reach them. No longer will I put off until tomorrow, what I can do today. This very thought is what led me to train for and eventually run my first 5k. It is also what drove me to finally go back to school. I received my BA in 2005 and am currently pursuing my master’s degree in Public Administration at Gannon, with a projected graduation date of December 2015. I hope after completing my MPA that I will be able to work with a nonprofit organization.
Multiple sclerosis has awoken in me a passion for nonprofit work and fundraising. For the past two years I have formed a team for the local Erie MS Walk, named Team Tapper. Both of those years Team Tapper has been successful in being in the top 10 fundraising teams for the Erie MS Walk and as an individual, I have successfully made the list of the top 10 fundraisers in northwest Pennsylvania. I hope to continue Team Tapper’s success streak for the 2015 MS Walk.
Family, friends and a positive attitude are the ingredients for a full life, even with a chronic illness. I may have multiple sclerosis, but it certainly doesn’t have me. As I continue this journey, I have started a blog to keep everyone – even some people I’ve never met- updated on my progress. I try to infuse each entry with humor and education. My blog has provided an outlet for me to express good days and bad and to find support from my community. If you are interested in reading more about my story or keeping up as I go along, check me out at www.moments0fclarity.wordpress.com
KELLY JACOBS TAPPER
