Words fail me as I try to share my experience with the Epilepsy Therapy Project and the Philadelphia Half Marathon in November. I am eternally thankful for the unending and unconditional outpouring of encouragement and financial support given to this project. It took on a life of its own and I’m proud to be Shaken, Not Stirred! (And I’m really glad I named the team for my grandmother’s favorite afternoon cocktail too, even though she didn’t like me telling people that).
Stepping out into this venue, epilepsy advocacy, came at the right time. After many years of silence I was finally beginning to find the courage to tell people I had epilepsy. I had my eye out for something new when an email from the Epilepsy Therapy Project arrived and mentioned the Philadelphia Half Marathon. This seemed perfect and my wheels started spinning! I fired off emails to a couple of friends that I thought I could coax into going with me, checked to see if my cheerleader (Mom) could be there and I assumed it was an easy done deal.
My first shocker wasn’t that the girls accepted my invite to run Philly, but when they said they also wanted to raise money for the Epilepsy Therapy Project. Say what? My goal was to make a small contribution towards epilepsy research through this project. I just wanted someone to travel with and share a room, and I figured they could be convinced. I never expected them to ASK to raise money. This was bizarre! From there it was like a wildfire had ignited. Word about Philly and my project spread quickly. Within 3 days our team of runners for Philly ballooned to 8, including our favorite male runner (I liked to think this kept us politically correct so that both genders were represented). One runner even texted me the night before her wedding and committed to run her first ever half marathon with us and raise money. I was certain she was drunk texting me but she proved me wrong when she crossed the finish line ahead of all of us at the race! The reps from ETP were calling me to ask what what was going on in North Carolina with this Shaken, Not Stirred team growing by the day and money rolling in by the hundreds! Honestly, I didn’t quite know how to explain it myself.
Epilepsy is a silent killer and those of us that live with it, live with the constant terror that we may be next, regardless of what safeguards we have in place. When I began to speak up, epilepsy emerged from silence. People began to learn about the struggles those with epilepsy face, and many learned for the first time about my own struggles that I had successfully hidden for years. PEOPLE TOOK ACTION! You rose to the challenge and you gave, regardless of income, regardless of the economy, regardless of the timing. Others saw past the present and into the future that seems so bleak for 2 million people with epilepsy and you chose to be the change for us. You will never know how many tears I have shed over the dollars that were given. I embarked on a journey unlike any other I have ever experienced. It tugged on the deepest emotions I had, pushed me past physical hurdles I had not felt and forced me to confront the reality of epilepsy that I had not fully accepted. The race in Philadelphia was truly the icing on the cake. The journey that got me there, and the $12,500 that Team Shaken, Not Stirred raised for the Epilepsy Therapy Project was definitely the reward.
Team Shaken, Not Stirred was a genuine source of hope and encouragement for people all across the country. During the last five months I met so many people whose lives have been forever changed by epilepsy. They quietly live, walk and work among us, breathlessly all too aware of the battle being waged under the shelter of our skull. They persevere through dark exhausting weeks that became months, and sometimes years. Some are still wading through dark waters with no end in sight and yet, tenderly, ever so slightly, day after day they bravely move forward, inch by inch.
I was moved by a courageous mom who came out to meet us at one of our fundraisers. She shared her story of battling red tape for the last five years to adopt a life-saving and life-changing seizure alert dog for her 11 yr old son. Since his epilepsy diagnosis 8 years earlier, she had rarely slept through the night without waking to check on her son, fearing a seizure would steal him during his sleep. The new dog had been with them for only a week and yet her relief was already palpable. As I watched this mom and dad with their 3 children and their beautiful dog, who never left his companion’s side, my heart knew the family was finally complete. Light had come into their dark world in the form of a four-legged friend named Chip.
I met a couple in Philadelphia whose son has epilepsy. He is 9 years old, the same age as my own son. He has multiple seizures every day and is not even able to communicate anymore. His therapy is intense and constantly changing. No one, not one person has been able to offer this child, or his parents, any relief. In the blink of an eye, I could see my own son, the same age, normal one day, and then epilepsy steals all the normal that we know and nothing brings him back or relieves the agony. Her eyes were dark black and hollow. She was utterly exhausted. Her shoulders were dropped, her head hung low and her voice whispered amid her cries. Completely hopeless. Fully and completely in love with her son and completely hopeless about how to help him. I couldn’t make light shine in her dark world, all I could do was tell her that I would run the race with all my heart and soul and do what I could to continue to bring awareness for epilepsy research. The next day, just after I crossed the finish line, she was the first person I saw. She called to me and reached out for a hug. The night before we had been strangers, linked by tragedy. Now as we watched ETP teammates cross the finish, I saw the edges of her mouth creep upward towards a grin and I saw a glimpse of hope in her eyes that now weren’t quite as hollow. She realized she wasn’t alone in her struggle and even the crowd control barriers weren’t enough to keep her from feeling the love we were pouring out on her.
I heard from many other women just like me, who do our best to go about our lives as normal as we can for ourselves and for our families. Some, like me, are fortunate enough to be able to drive. many are still dependent on others for transportation which complicates life beyond compare. Our children learn to say e-p-i-l-e-p-s-y along with one syllable words and they learn how to dial 911 if mommy doesn’t answer. Our husbands sleep a little lighter at night, conscious of every twitch or breath we take, subconsciously knowing that SUDEP (Sudden Unexplained Death in Epilepsy) strikes without warning, and consciously always…ALWAYS thinking about what if?
These moms, these women, you and I, and all runners have one thing in common. We take it one step at a time and one day at a time. Many of you jokingly, or maybe seriously, commented that you would donate money just to NOT have to run. The truth is, you could do it, just like we all did it, one step at a time. Truth is, you ARE doing it. Each of us battle a demon that could get us down at any moment, some are more visible than others, but they all exist. Each of you have overcome a struggle to get where you are today, and you should be proud to have remained unstirred by the battle. Thank you for fighting your fight, for sharing your life with me, for being an example to me and for helping me shed light into darkness by supporting the Epilepsy Therapy Project.
I think this quote from Rocky III sums up my own feelings best, “Thank you. Thank you, One and all. Every once in a while a person comes along who defies the odds, who defies logic, and fulfills an incredible dream.” It was my own larger than life dream to do something big for epilepsy and one by one, you all defied the odds, gave money when it didn’t make sense and stepped away from your own busy lives to fulfill my own incredible dream. I am grateful and I am humbled. Thank you.
Copyright © Gatewood Campbell, January 2013