The Philly Finale from Shaken, Not Stirred

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

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A Mother’s Tears

I have three drafts about running Philly for the Epilepsy Therapy Project. Each time the words weren’t quite there, but I wanted so badly to share with you my experience. Given the one thing that hit me the hardest in Philly, I am particularly overwhelmed with where our country is right now.

I am an adult. I was diagnosed with epilepsy when I was 32. There are a lot of annoying things that come along with that, but for the most part I am extremely fortunate. I had 32 years without epilepsy. 32 years of answering n/a to chronic health conditions on surveys. 32 years of answering n/a to current medications. 32 years of riding amusement park rides. 32 years of doing just about whatever I wanted to do without giving it a second thought. Because my epilepsy isn’t genetic I don’t live with the fear that I may have passed the gene to my children. I’m fortunate in more ways than I can count.

As we worked to raise money for this project I began to meet the moms of children with epilepsy. When we were in Philly I sat with a mother whose son is the same age as my youngest son. For no apparent reason at all, several years ago her son developed epilepsy. He can no longer communicate with her and they have yet to find any medicine that controls his endless daily seizures. He can not tell her what he wants for lunch. He can not tell her what he wants to wear. He can not tell her how his medicine makes him feel. He can not tell him when he feels something taking over his body in the form of a seizure. He can not tell her he loves her. He can not tell her he is mad at this thing called epilepsy that has stolen his life. This mom, this mom’s tears have stayed with me every single day.

I have thought how many times we hear a parent say when a child is ill “I wish it was me”. How fortunate I am that it is already me. I remember the heartache I felt when my mother told us she had leukemia. Then she said what I now understand. “If someone at this table has to have cancer I would rather it be me.” It’s the parent in us all, please God, give ME the pain to relieve my children the agony. As overwhelmed as I have been with grief for this mom and her son, I have felt so blessed that I am the patient.

Over the last two weeks I have seen so much pain and loss. Children of people that I love have lost their parents to accidents and sudden illness that we can not explain on this side of heaven. I was overwhelmed with the thoughts of those innocent children who lost their parents. Then Friday….I have no words… My thoughts were again of innocent children and their parents left behind. As we all did, I hugged my kids tighter and longer, and I felt even more blessed than I had just the minute before. Why? I have no answer. How? I have no answers.

What I know is this, just as I felt when I watched the tears fall from that sweet mom’s face in Philly as she shared with me about her daily struggles, I’m blessed in ways I can not fathom. What we must do is let those tears magnify those around us. Slow down and love on those that surround you, tomorrow is never promised. Today is here.

Copyright © Gatewood Campbell, December 2012

One to Wear, Three to Share

It is November 1st! I have waited 11 long months for Epilepsy Awareness Month to arrive again! Last year was a new adventure for us and I was just getting my feet. It was only the beginning of letting people into my world. My family supported my efforts for 30 days by wearing purple, wearing and sharing purple ribbons, holding purple days their schools and encouraging me to be proud to be me; epilepsy, brain injury and all.

As I sit here now in my purple shirt, purple shoes, purple earrings, purple bracelets and purple ribbon, there is still a part of me that wants to gulp when people ask why I’m wearing a purple ribbon. Will it ever be easy to say “I have epilepsy”? Will I ever stop fearing the response or the stares? Will I ever stop that twinge of madness I feel when the alarm on my phone rings and I know it’s time to swallow more pills that will upset my stomach, confuse my mind, slow my speech and make my hair fall out? Will I ever stop fearing that SUDEP will take me during the night? If I’m completely honest, probably not. But living in fear is not living. So I’ll choose to live in awareness and share what I know and what I have learned, because I can’t let fear win.

Six months ago I decided to celebrate Epilepsy Awareness Month by joining the Epilepsy Therapy Project and running the Philadelphia Half Marathon on November 18, 2012. I knew I could run 13.1 miles. I assumed I could convince my Mom to go with me and make a complete nuisance of herself by decking out head to toe in purple and yelling my name all over Philly and pretending to be Rocky on the steps of the famed Art Museum. I even thought I could convince a friend or two to go and run with me. I truly had NO idea my friends would jump on board like they have! Seven other runners teamed up with me and have helped raise a lot of money for the Epilepsy Therapy Project. A lot of generous people and businesses have supported our cause and dug deep in their pockets. The outpouring of financial and emotional support has warmed my heart and given me great hope for the future of treatment for epilepsy.

This morning everyone in our house pinned on purple ribbons. When Justin left for school at 5:55 am, he had on his ribbon. When Johnny left for work I pinned a ribbon on his shirt. When Hunter got ready for school, one ribbon just wouldn’t do. “I’ll take three to share please.” Most people would put them in their pockets. Not my Hunter! He proudly pinned them all over his shirt, ready to tell the world “my Mom has epilepsy and that’s just fine. Here’s your purple ribbon!”

It’s November, and it’s Epilepsy Awareness Month! I am excited about a month of fun adventures, including seeing Charlotte uptown light up purple on November 15 when Wells Fargo’s Duke Energy building turns purple for team Shaken, Not Stirred! We are all wearing our purple ribbons and we have more to share!

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Copyright © Gatewood Campbell, November 2012

Lucky #7

This time of the year my thoughts always turn inward. I close my eyes and seek the months and perhaps years of memories of my children that are lost in the cavern of my mind. Those lost memories make me the saddest. I wonder what I missed, what I have forgotten and I wonder what I might have been.

Seven years ago I worked up the nerve to drive to the new mall and walk around with our 2 year old and look around. I left the mall on a stretcher in an ambulance with some lingering questions finally answered and the realization that my world had just shifted forever.

Seven years later; what have I learned? Each day gets me a little closer to accepting the changes in my life. When words fail me, or thoughts jumble or I get lost, it’s an opportunity for me to accept that God sifted this through His hand and is still holding me. I have learned that everyone has a story and a battle they have fought or are fighting. I may be the only person that entire week who sincerely looks them in the eyes and greets them and says something kind. I learned to make the time for someone else when my time seems shortest and least convenient.

As I realized that this weekend marks the seventh anniversary of my epilepsy diagnosis, perhaps it is really lucky #7. In less than two months, 7, YES LUCKY #7, of my best friends are going with me to Philadelphia to run the Half Marathon. Except they aren’t just running it, each of them have joined the Epilepsy Therapy Project and raised money alongside me over the last few months. Together we have already raised over $11,000!

When I get frustrated by the what if’s, I need look no further than my front yard to the pick up game of baseball on a weekday afternoon and realize that list of what if’s would look a lot different if I didn’t have epilepsy.

There is so much for which I am thankful and yes, even lucky to have in my life.

Copyright © Gatewood Campbell, September 2012

It’s a Small World After All

Last Friday Shaken, Not Stirred had our first fundraising event for the Epilepsy Therapy Project at sweetFrog Frozen Yogurt. The owner’s, Steve and Sandy Anto graciously welcomed our crew and even brought in entertainment and games for the kids. Their son, my son, and another young man who works at sweetFrog play in a band together. I dreamed up the idea several months ago to have a fundraiser and have the band play. The Antos were all in from the start and with a debut date on the calendar, it was all business for the band.

I’m from the non-profit world and I did a LOT of event planning, way back when, but I’m a bit rusty these days. Thankfully, this time I had a full team of people to call on and the work was spread out with hands grasping for more. This is a special group of people and they not only see a task, they just take it and roll. We used every resource of labor we had available, including child labor. Sharon’s daughter, Addyson, spent one entire day making purple Epilepsy Awareness Ribbons. I apologize now for every hot glue gun burn and pin stick she has, but you should know we gave away every ribbon she made! We got donations from Taco Mac at Birkdale, Hickory Tavern at Birkdale, Chili’s in Huntersville, Longhorn in Huntersville and Carolina CAT and my kids assembled 150+ kids’ goodie bags to give away. Each business was overwhelmingly generous and not a single one turned me away!

I didn’t know what to expect on the day of our event. I had advertised, our team had advertised and sweetFrog had advertised, but you just never know. It’s not so much about the money, OK, well yes, it is about the money that we are raising for the Epilepsy Therapy Project, but I want people to have the chance to learn about something that is so misunderstood. For years I flew under the radar because I was afraid of being misunderstood. I was embarrassed by how I had changed and my inability to cope in certain situations. Is that going to keep me from living my life to my fullest? It shouldn’t. I’m learning that. I’m learning to embrace change. That’s what this race in Philadelphia with ETP is about; stepping out and being a face of epilepsy and brain injury. I hoped we would have the chance to share with people.

The people, oh the people, the flood of people, and the endless flood of tears and emotion that I felt all night. It’s been a week now and I still can’t wrap my mind around it. The show of support spoke volumes. Every set of eyes came to see and to learn about what we were doing. These eager faces wanted to understand. Faces from my childhood, from my husband’s days in elementary school, faces from my high school, from college, from our wedding, my mother’s former colleagues, families from our small group, our devoted RUN-agades, my TEAM in Training Coaches (including my Coach who saw me fall in LOVE with running in Nashville back in 2008), my neighbors, from our church, my Mom (also our Shaken, Not Stirred head cheerleader), my Mother-in-law and Father-in-law and people I had never met that read about us and came out to support our efforts. In a very busy big world, on a Friday night in August, all these people converged on sweetFrog Frozen Yogurt. For six straight hours, there was laughter, friendship and celebration among the hundreds of people who made time to stop by. Having grown up in a small town, I often feel the strain of the quick growth of our area. Friday night showed me, it’s a small world after all.

Friday night I met a woman and her family who came out because they read about our event online. She introduced me to her 11 yr old son. He was diagnosed with epilepsy when he was 3 years old and she was 8 months pregnant. For the last 5 years she has been working (I would say slaving is a better word) to secure a seizure dog for her son, and just last week they brought their new dog Chip home with them! I cried tears of joy with this mom as we watched her son play with Chip and I knew the immediate sense of relief she felt. This was an event worthy of celebrating!

I tried my best to share my gratitude and most importantly the reason Shaken, Not Stirred came together. My thoughts were so raw and discombobulated I couldn’t even get people’s names right. As I looked on the crowd and no words could come from my mouth and only tears could flow from my eyes, my very small world was a loving world, an understanding world, an accepting world and the silence was ok.

The night was a tremendous success! It was everything I had envisioned with music, fun and frozen yogurt all night long! I’m proud of my family for working so hard on this project with me and I’m proud of this team for running away with the vision and pressing on to raise $1000’s of dollars for the Epilepsy Therapy Project. I’m thankful for the generosity of the Antos and sweetFrog Frozen Yogurt for supporting our cause.

We have already raised over $8,000 and it’s only the beginning! We got some very exciting news just today that we will be sharing soon! We are SHAKEN things up, purple style… You just wait and see!

Copyright © Gatewood Campbell, August 2012

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Sorting it out; a year later

A year ago I sat in front of this computer in complete anger and frustration. That’s when the seizures returned and I started the mad science lesson with medicine that really isn’t quite over just yet. A year ago I was mad at epilepsy and I was mad at brain injury and I was mad that they were messing with me again. Yes, I’m a control freak. I’ll admit it. Guess what? I can’t shake my finger at my own brain and tell it to shape up. Well, I can, but it doesn’t do any good.  I needed some time to release the anger and move on to acceptance before I could start working towards healing again. In so many ways that seems like yesterday and it seems like an entire lifetime ago. In all honestly, I’m not completely over my anger, I’ve just refocused that anger into something more worthwhile than self-destruction.

I have to give props to my family who put up with the likes of attitudes out of me of the last year that I probably would not believe I actually displayed. People who have never had to take drugs for your brain may never understand what it feels like to look in the mirror and not recognize the face, to answer a question and yet not understand your own the response, or to find yourself lost in the city you have called home for 35 years. I’m dealing with it all. I pound it all out in the pavement every week.

There’s one thing that I had hoped would come back over the last year, and it hasn’t. In fact, it has progressively gotten worse. I’m not so much mad, it just makes me sad. I lost a great deal of my ability to really express myself after my brain injury. I know…many of you may disagree, but Johnny, or my Mom or Sharon, (and they know it doesn’t hurt my feelings to be honest about it either) will agree with me on this point. They know. I lost the ability to verbally express myself, yet I found I could express myself through writing.  My blog was such a source of comfort and release for me.  But my new medicine has….well…I can’t find the words for it…now even my written words are a lot slower, or just not there at all. So now everything I feel, and experience stays pretty much bottled up inside me but is swelling in every direction. But I can’t comprehend the swells or begin to let the swells overflow onto paper, so the foam continues to bubble up. I’m not really mad about it anymore, maybe frustrated, maybe annoyed. The trade-off is that this medicine is keeping the seizures away. Seems like a small price to pay for life, right. I’m a mom, seizure free is my goal, I have to accept swelling foamy bubbles not matter how much they confuse me.

So, I’ll keep refocusing my ______ into something more worthwhile. Please don’t stop reading my blog just because I’m not posting as often, it’s just because I can’t figure out how to say what’s on my mind. I’m still busy though, If you haven’t already heard about my worthwhile venture…click the link below. I gotta do something to find a better drug than this one…this is the best way I know to do that!  http://epilepsytherapyproject.myetap.org/fundraiser/2012PHLMarathon/individual.do?participationRef=3917.0.251389979

Good thing there is a lot of pavement left in Huntersville and a lot of miles left on my shoes. I tend to have a lot of energy to burn, for good reason. Maybe one day I can explain.

Copyright © Gatewood Campbell, July 2012

Shaken, Not Stirred

Shaken, Not Stirred

Philadelphia Half Marathon 11.18.12

Life is always more fun with a friend, so shouldn’t we all surround ourselves with a bunch of great friends?! I’m feeling like the luckiest girl in the world to be surrounded by a dedicated group of friends who are committed to Team Shaken, Not Stirred! We think big and Team Shaken, Not Stirred has set our sights on raising $10,000 for the Epilepsy Therapy Project! We need your help to make that happen! If you want to know why this is important, keep reading more of my blog. If you want to learn more about the Epilepsy Therapy Project visit www.Epilepsy.com.

Donating to ETP and supporting Shaken, Not Stirred is super simple, just click this link https://epilepsytherapyproject.myetap.org/fundraiser/2012PHLMarathon/team.do?participationRef=3917.0.251389978 and you can select to sponsor any runner or make a general donation to sponsor the team.

Thank you for taking the time to read about my journey and more importantly for supporting  Team Shaken, Not Stirred

Gatewood Campbell