Category Archives: Epilepsy Awareness

by

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!

20121101-110126.jpg

Copyright © Gatewood Campbell, November 2012

by

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

20120810-112914.jpg

20120810-113418.jpg

20120810-112430.jpg

20120810-113500.jpg

by

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

by

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

 

by

Finally Running For Me

Shaken, Not Stirred!

 2012 TEAM Epilepsy Therapy Project 

Philadelphia Half Marathon 11.18.12

I used to run because my life felt like it was spinning out of control and I needed an escape. Now I’m running because I will not allow my life to spin anymore. I was shaken, and now I will not be stirred!

I was diagnosed with Epilepsy in 2005 caused by a Mild Traumatic Brain Injury earlier that year. I was only 32 years old, married ten years, with two sons, ages 7 and 2, and I was working full time. Our world was rocked in ways we could not have predicted. Seven years later, my fingertips can still recall the sharpness of the eleven life changing stitches hidden by my hair. I sat in a staff meeting unable to comprehend anything that was being said and worried that my life would never be the same. I was partially correct. I was definitely shaken!

I am still a wife and I am still a mom. I am no longer employed but instead focus my time and attention with those that I love. My days are filled with my family, including my 96 year old grandmother, with whom I spend several days each week helping age gracefully, and ensuring she has her afternoon cocktail when she chooses (a Martini, of course). I have been seen by more doctors than I can count on my extremities, been connected to enough wires to rewire our home three times over and weaned on and off drugs more times than the Octomom weaned children off bottles.  After my initial diagnosis, months of cognitive rehabilitation and some difficult trial and error with medicine, we eventually found the right concoction. With the exception of a few minor adjustments I was fortunate to have about four years with very few problems. For a while, I was not shaken and not stirred.

My world started spinning again last spring when I began having breakthrough seizures. It took me several weeks, and several seizures, to realize what was happening. I had become so accustomed to having controlled epilepsy, it never occurred to me that the day would come that medicine would fail to stop my seizures. I have tried four new drugs, all of which have serious side effects. We settled on the one with the least offensive side effects that still effectively controls seizures. I’m learning to grow comfortable with the fact that treating epilepsy will affect many parts of my daily life and it’s important that I remain vigilant. I have been shaken, and I have realized some valuable lessons.

Epilepsy is scary and confusing. Nearly 3 million Americans suffer from seizures, yet most people don’t even know the simple first aid steps to help a person having a seizure. I am blessed to be among those with epilepsy that can be controlled with drugs. I can help those that are not able to speak up; for the exhausted parents tending to their young child stricken with epilepsy and the variety of complications it brings, for the single adult trying to manage epilepsy and a job but unable to drive a car, for the teenager afraid the next seizure will happen in the school cafeteria or in English class, or for the young mom who just wants family life to be normal again. I am an advocate for epilepsy.

Combining my epilepsy advocacy and my passion for the pavement, I have formed Team Shaken, Not Stirred! We are running the Philadelphia Half Marathon on November 18th to benefit the Epilepsy Therapy Project! Seven of my running buddies have joined Shaken, Not Stirred and together we are setting big goals to raise big money and big awareness for the Epilepsy Therapy Project!

Please join me in this very personal labor of love by making a donation to sponsor me or to sponsor Team Shaken, Not Stirred. I am still in the process of changing drugs now, but that is not going to change my focus. While I am training for this race I will be in our community sharing epilepsy education and awareness. Change will happen when people are aware and I am certainly willing to speak up.

To donate (just like my children already have)  just click this link or copy it to your browser and click the “Sponsor Me” icon. https://epilepsytherapyproject.myetap.org/fundraiser/2012PHLMarathon/individual.do?participationRef=3917.0.251389979 .

I’m deeply grateful to my family and countless friends who have given me support in so many ways and especially this last year. Thank you for loving me when it has been hard to love me, for holding my hand when it would have been easier to let go and for listening when I didn’t make sense.  Thank you for letting me know it’s ok to be me even when I’m still not sure who I am. Most of all, thank you for giving me hope for an easier tomorrow.  A bold new journey is beginning and I’m thankful to be Shaken, Not Stirred!

Cheers!

Gatewood