The Wake Up Narcolepsy Team WUNners has brought together runners from across the country and Canada for the past eight years to not only raise funds for narcolepsy research, but these runners also dedicate themselves to increasing awareness about this severely misunderstood sleep disorder. We value the dedication of our teams, and are so grateful for the work they do as this is our largest annual fundraiser. The 2017 Team WUNners raised close to $55,000. There is still time to donate to this year’s team by clicking HERE.
For many of our runners, the Boston Marathon experience is about much more than fundraising for research and raising awareness, it is also very personal and emotional. They are often running on behalf of a loved one who is living with narcolepsy or on behalf of themselves. Recently, one of our 2107 team members shared her reflections with us about this life-changing Boston Marathon experience.
Please take a moment to read Jenna Brady’s story of strength, courage and perseverance. It is sure to inspire you.
Living in a world where most people think of your sleep disorder as a joke rather than a legitimate, debilitating, and life-altering medical condition takes a mental toll on those of us with narcolepsy. If only people could walk in our shoes and feel the sheer agony of resisting the most crushing desire to sleep. Imagine a life lived in fear of experiencing happiness, laughter or any display of emotion because you could collapse as a result of sudden uncontrollable muscle weakness and paralysis. This is what it’s like for those who live with Cataplexy. For me personally, the primary struggle of narcolepsy was how it affected my performance in school. Even simply passing a class was an uphill battle that led to a lot of personal anguish. Excellence felt impossible. I learned to deal with failure and find value in my skills that were not academic related. Before my diagnosis I lived with the belief that I was unintelligent. Other people even thought I was lazy.
Fast-forward a few years and to my relief I was finally diagnosed with narcolepsy. For the first time in my life I have received all A’s, an accomplishment I never thought I’d experience. This can be attributed to medication, talented physicians, and most importantly, to my realization that I am actually academically inclined and living with undiagnosed, untreated narcolepsy just disguised that ability. In addition to this success, I ran a marathon, which is a second accomplishment I never expected. Running the Boston Marathon will forever be one of the most incredible and surreal experiences of my life. Throughout the training process I ran into some ups and downs. I struggled through physical therapy in the hopes that by race day I could make it the 26.2 miles and cross the finish line on Boylston Street. Balancing school, training, physical therapy, and my narcolepsy was not the easiest task and took a lot of positive self-talk. But in the end it was all worth it after I reached the finish line and realized the feat I had just achieved was not only for myself but for all those suffering with narcolepsy. We did it. By we I mean the people who so generously donated and those who listened to my story with a desire to educate themselves and increase their awareness of narcolepsy. I want to say this to those living with narcolepsy around the world: We all crossed that finish line on April 17th. I may have been doing the running, but it is the support I received from all the kind friends, family, and strangers that propelled and kept my legs moving even when it felt like they might stop working.
Due to the negative stereotype of those with narcolepsy, many of us hide our condition rather than let others into our world. Raising awareness can be extremely difficult. When Wake Up Narcolepsy let me know I’d be running the marathon I was initially ecstatic. But soon the reality that this would require me to tell my peers that I have narcolepsy set in. I worried about what others would say. Would I be judged? Would no one understand? Would people laugh? When I finally pushed the post button on Facebook I felt an overwhelming sense of relief. A huge weight was lifted off my shoulders now that I had finally disclosed such an important aspect of my life.
Sharing my story has been the best part of this experience. So many people I know were curious to learn more and gain a deeper understanding. Many knew very little or even nothing at all about narcolepsy and cataplexy. I implore all those living with narcolepsy to not live in fear of what others will think and to use your voice to enlighten others. No one understands narcolepsy more than someone living with it, so who better to explain it to others? I now very openly discuss my narcolepsy with anyone who is willing to listen and this has been met with nothing but empathy.
Through this experience I have learned that I can do anything. No matter the obstacles that stand in my way nothing is out of reach. I have signed up to run another marathon next January and maybe someday I will be crossing that finish line again in Boston. I am so thankful to have met all of the amazing people from Wake Up Narcolepsy and the other runners on the team.
I cannot say thank you enough to those who provided me with this incredible opportunity and to those who supported me during this process whether it be through donations and/or a willingness to hear my story.
Many thank you’s
Wake Up Narcolepsy is profoundly grateful for people like Jenna who are willing to share their stories of living with narcolepsy. Jenna has definitely found her voice through this experience, and we know it will inspire others and remind people living with narcolepsy that they are not alone. Thank you, Jenna!
Wake Up Narcolepsy is a nonprofit organization dedicated to speeding narcolepsy diagnosis through greater awareness and funding medical research to find a cure. To learn more about Wake Up Narcolepsy, please visit our website HERE.