Well Dang

Some things seem too familiar, or maybe not. It has been over a year since my last seizure and perhaps I wasn’t quick enough to recognize the aura.

Several weeks ago I headed into the store for a quick pickup of ingredients to make chili. As I got to the back of the store something felt wrong. In my circus head I thought I would crush my phone in my back pocket if I went down. I placed my phone in my pocketbook and moved on. The sensation continued and I realized I had my glasses on so I placed those in the hard case and put them in my pocketbook too. I got to the sour cream and it was shaking everywhere. Determined, I tried yoga breathing. The shaking subsided and I grabbed the fat free sour cream. Feeling like I had this, I pushed my cart to the cheese section. Problem was that I could not walk steadily. So in my constant attempts to “do it my own self” (something I told my grandparents when I was about 5 years old) I bent over the buggy and threw my head into the basket. Self said to me “this is highly embarrassing so get up and walk.” I stood up and grabbed the handles again. Nope, not steady. I sat down on top of the cheese. Yes, on top of the cheese. I realized I needed to take an emergency seizure pill. As I sat ON the cheese I could see bottled water and thought I could dash over and grab a bottle, open it and pay for it when I left. I stood up. Then I doubled over inside the basket again. Well dang. Walking was out. I sat back down on the cheese. I threw the pill as far back in my throat as I could and gobbled it down. AHHH DANG! This is not good. I looked around for someone to call to. All I heard was spanish.

“You are ok. We are taking care of you. You had a seizure and you are going to be ok.”

I looked past the man speaking to me and into the bright round lights shining down on me. I realized I was strapped to a gurney and prepped to be moved to the ambulance. Well dang, really?? I just wanted to make chili. My mind wandered to my buggy with ground turkey, tomatoes, sour cream and oh yea, no cheese. I never picked that up. Ouch, my head hurt no matter which way I moved and my legs were barking!

“Hey I know that truck.” I was in the ambulance and I recognized my husband’s truck pulling into the lot. I told the medics my husband was here. I was overwhelmed with beeping and voices. What I wanted was to go home! Johnny came running to the back of the ambulance and told them I had epilepsy and he would take care of me.

Fortunately, I did not bust my head open and the medics released me into the loving care of my husband and our youngest son. Apparently he was in the backseat of the truck. I don’t remember. Some wonderful friends happened to be nearby and went back to pick up my van and get some more Tylenol. The smallest things mean the most.

It is what it is. Maybe I felt safe. I am safe, when I am careful and when I don’t overload myself. Epilepsy is a silent disorder. It is invisible. It strikes when we think it may and also when we least expect it, or when it is least convenient. I can not believe the stoic manner in which my husband is always able to cope with this. My children do not fear seizures but they are all too aware. Our youngest was in a class when he saw his dad come around the corner before class was over. Later he told me he figured something had happened to his mom. He wasn’t worried. He is always confident that someone will be there.

Turns out care was at my side within seconds. A friend witnessed the event but because I was already on the ground she didn’t realize it was me. I am thankful that she asked shoppers to move along and comforted to know that she saw the employees had called 911 before she had the chance.

You know what? This too shall pass. I have spent the last 11 years fighting this and I have no reason to think that it will ever beat me. Yes, I am dealing with reality that I wish I were not, but it certainly could be worse. Can you help? YES! Learn how to aid someone having a seizure.

The most important thing I need after a seizure is to know someone is in control and cares.  If you can be that person who looks into the eyes of someone coming out of a seizure and communicate love and care, you are a hero.

I am fortunate. I am a survivor. There is still no cure for epilepsy but millions of us fight it with the help of loving care around us. November is Epilepsy Awareness Month. Please take a few minutes to read, re-read and share first aid for seizures information. Knowledge is power and power saves lives.

Copyright © Gatewood Campbell, November 2016

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He Loves Me This Much

The days seem to be getting longer and the walls around me are a bit smaller. This year has been long. It’s not over yet.

Every morning I kiss my three man boys good bye and I turn and look at my dogs. We sort have this stand off and I have this looming lump in my throat hoping the hours while the kids are at school will pass quickly. The house will be too quiet and I will be alone again. This has been my routine for nearly a year now. Laundry, cleaning, dishes…pretty boring. I almost put up the Christmas tree last week. I thought that was pushing it. A year… I have learned so much about myself and my God in this last year.

As God as become my constant listener and best friend, I have heard Him too. He loves me this much that He allowed epilepsy to rest on me. There is no answer to why. There is no answer to what will happen next. There is no real reason to fear, because God is always in control, and God always loves me. He will never, ever leave me. Don’t get me wrong, this disorder hurts, the isolation, fear of the next seizure, or straying too far from home all scare me, but with God’s help I try to overcome these things as much as possible. God is sovereign.

Our whole family must rest in His sovereignty or we wouldn’t survive. How would my husband get through a workday without trusting God to care for me? How do either of us get through any day at all with our son on the road now without trusting God to watch over him? I venture out alone because I have to feel some independence. Is there some danger? Sure. Is God in control? Absolutely. Ultimately, in my deepest being I believe God is a kind and loving God and He wants me to depend on Him with all that I am. I think epilepsy is the only way I can do this…grrrr… So he loves me this much. He chose this for me. So my choice is to love Him back, trust Him, and depend on Him for whatever comes next.

November is National Epilepsy Awareness Month. Honestly this last year has beat me down that I’m too exhausted to creatively and energetically spread the word. That frustrates me too. Johnny tells me I’m too hard on myself, but 1 in 26 have this and 60,000 in the US will die from Sudden Unexpected Death in Epilepsy, so this still needs a voice. Locally, Mayor Swain signed a Proclamation declaring November as Epilepsy Awareness Month in the Town of Huntersville. My son is having the annual Purple Day at Huntersville Elementary on Nov 14 and Mayor Swain is even stopping by to visit the classrooms and help spread awareness that day. Would you wear purple on Nov 14 to support Hunter’s Purple Day too? Our family is in purple everyday this month, but for one day, that would be pretty cool. Johnny and I were in Charlotte Sunday night to see the Duke Energy building shining purple over Charlotte. More people are talking, less people are whispering, more research is being done, and maybe one day we will have a cure.

Until then, I rest in the peaceful knowledge that God loves me this much, He didn’t give me this and then forget me.

Copyright © Gatewood Campbell, November 2014

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It Matters

We are just a couple of days away from the start of National Epilepsy Awareness Month. Our family and I have been working together to come up with original ways to incorporate Epilepsy Awareness into each day of November. We will be headed to Charlotte on Friday November 1st to see the Wells Fargo Duke Energy Building in all her purple splendor. The Epilepsy Foundation of North Carolina is thrilled that this building will again light up purple to show support in Charlotte. The following day our family will be attending the Epilepsy Foundation of NC Annual Fall Stroll at UNCC. Hunter and his friends are making purple Rainbow Loom bracelets to sell with all money going directly back into the foundation. The Town of Huntersville has jumped on board and Mayor Swain signed a proclamation making November Epilepsy Awareness month right here in town.

Amidst all the excitement, today I opened Facebook to read about a life lost too soon. A beautiful 27 year old woman from Maryland, taken by SUDEP (Sudden Unexplained Death in Epilepsy).

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I paused, for a long time and looked at her picture, thought of her future that is now lost and I thought of her parents. It reminded me to keep talking, keep sharing and keep pressing on with my purple ambition to let people know why it is so important that people simply know the facts about epilepsy.

I have seen so much change and conversation in the few years that I have become involved with Epilepsy Advocacy. It matters because people matter. Please start off November right by wearing purple and TELL people why! Email me if you want a ribbon to wear and we will mail you one homemade by the Campbell family.

© Copyright Gatewood Campbell, October 2013

About Me

It has taken me a long time to find the strength to update my bio without including my role as a granddaughter. I grasp the concept that my Grandmother no longer answers the phone when I call, but her voice, her wit, her style and her legacy are with me each day. My days with her changed my life forever and she would want me to use that for good, for myself and for others. So, here it is….the updated bio about me…

Call me a wife, call me a mom, call me a daughter and call me a friend. I’m closing in on 40 and have reached that point in life where we look back at where we thought life would take us, compare that to where we are and focus our sights on what is next. My future holds the fast paced life with a high schooler and a high energy elementary student. Our boys keep us expecting the unexpected with their love of life and desire to divert from the crowd and be themselves. I am one proud mama!

I’m self-sufficient, independent and I don’t like change. I prefer the organized to the unorganized and I like to have a plan. Ten years ago, with 2 beautiful boys, our family was complete. I was ready to take on the next chapter in my life. I made my health a priority and rid my body of an unnecessary 75 lbs. I had a goal, I had a plan and I lost the weight…and I have kept it off for 9 years. After that, I decided to run a half marathon. I had a goal, I had a plan, and I ran 13.1 miles. Ready for more of a challenge, I decided to run a full marathon. Goal, plan, 26.2 miles; done. Clearly there was a consistency in my approach to life. I moved on in my career too. I was finally developing and running my own programs. I felt like I was on the verge of really blossoming in every area of my life. And then…I had to run an errand for a project at work. I walked into Target, and was later taken out on a gurney. I slipped and fell in the store. My head suffered the impact of my fall. I woke up in the hospital. That was the first of several ambulance rides that year. That fall was over 8 years ago. The results of my errand to Target will stay with me for the rest of my life. I was diagnosed with a Mild Traumatic Brain Injury and eventually developed Post Traumatic Epilepsy, both due to a simple fall in the trashcan aisle.

Since then I have learned to live without a plan. I have learned to live with the unexpected. I have learned there is power in asking for help and there is power in accepting help. There is a greater power in taking the difficult experiences, turning them right side up and paying it forward in a positive way. I’ve learned that adjustment is a necessity. Since that day in Target, I walked away from my career and embraced a life that is full of all that matters most. I flow freely between wife, mom and daughter. I have completed 9 half marathons and 4 full marathons. Through many of those races I raised thousands of dollars to benefit the Leukemia and Lymphoma Society and the Epilepsy Therapy Project. I’m evolving into an advocate for epilepsy awareness by sharing my own experiences and learning from those who have been where I am.

I have a brain injury and I have epilepsy but they will never define me and they will not limit me from setting big goals. I have learned to adjust and I have learned to change. Change can be eternalIy powerful if we use it correctly. I have learned the positive value of embracing change and remind myself to be thankful everyday for the gift of seeing the sun in the sky and walking (even running) on my own two feet.

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© Gatewood Campbell, July 2013

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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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

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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