Monthly Archives: January 2013

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The Circle is Complete

A reminder that the circle is now complete and I can look back without regret on the tough decision I made.

Embracing Change

After my accident and Epilepsy diagnosis I tried to continue working. I put every ounce of energy I had into my job. I worked in a church and I had been there 12 years. I had seen tremendous growth over those years. It was a place and a community of people that had captured a huge part of my heart and my life.  My job was people driven. My ministry was about helping people feel welcome and comfortable. It was my responsibility to guide them into the church and help them find their niche. Ironic, given that I was working so hard to make people feel comfortable, yet I felt so incredibly uncomfortable. Post injury, I was different and I knew it. My brain functioned differently. Before the injury I could look at point A, envision point Z and immediately get to work on the plan to get there, no…

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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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Family Knows Best

My mind has raced between grief, anger and gratitude over the last week. Much of my life is empty without Emmer. I have reached for the phone more times than I can count just to call and check in. I grieve that I can’t talk to her, I grieve that I can’t bicker with her and that she can’t argue back. I’m mad that she’s gone and that I can’t remind her that it is her shower day or her hair day. I’m angry about the lonely emptiness I feel. I’m thankful for the gracious plenty 97 years she had here and for the amazing health she experienced, almost until the very end.

In January 2007, I walked away from my 12 year career in non-profit ministry because I visited my Grandfather’s grave and I promise you, he spoke to me. In the Lord’s presence, kneeling at his grave marker (call me crazy, I don’t care) an audible voice told me to leave my job and go to my family. It didn’t make any sense to walk away from my job, but with my health failing, and a direct order from above, I obeyed. I could always argue with my Grandmother, but my Grandfather, ah, no. I walked away knowing this was right.

That was 6 years ago. That voice told me that my family needed me more than my career needed me. Hindsight is always 20/20.

I have been desperately seeking for tangible pieces of my grandparents this week, so that I can touch them, smell them, feel them and hear them. I pulled out all of my Grandfather’s Bibles and skimmed through the pages reading his notes. A piece of notebook paper fell out of one of his Bibles and on it were notes in his own handwriting where he was doing his own study in Samuel.

This caught my attention! At the top of the page my Grandfather had written The call of Samuel. Below that he wrote Samuel means “Called by God”. I continued reading through all his notes and then at the bottom in all capital letters he had written READ THE CALLS- when people need us, that can be God’s call to us. Maybe we can serve God best by meeting the needs of other people. “In as much as you have done it unto the least of these, you have done it unto me.” Judging from the quality of my Grandfather’s penmanship, these notes are at least 20 years old. He knew, even then, he knew his own bride would be cared for until she was ready to meet him again in heaven. My name may not be Samuel, but I think I was indeed called by God to fulfill a purpose much bigger than I could have ever understood as I sat in that cemetery 6 years ago.

I’m reminded today of his own life verse
“He has shown you, O man, what is good;
And what does the Lord require of you
But to do justly,
To love mercy,
And to walk humbly with your God.” Micah 6:8

Family still knows best.

Copyright © Gatewood Campbell, January 2013

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Time Among Generations – a repost

I wrote this a year and a half ago. My care for Emmer and our relationship evolved more than I could have imagined since then. One day I will have the strength to write about our family relationship that became a friendship bonded by love. For now, as we prepare to honor her final wishes and say our final goodbyes I wanted to share again some of the joys Hunter and I had with her over the last few years.

I have received so many unexpected gifts since my Epilepsy diagnosis. The biggest gift was time.

My injuries made employment difficult and I left full-time work almost 5 years ago. Several months later my Grandmother (then 91 years old) decided she should stop driving but she was still mobile and needed occasional rides. Since I was available to help, I started picking her up on Friday mornings and taking her to the grocery store while she did her shopping. It wasn’t long before I was doing all her shopping and then going to her apartment two days a week to help with various tasks that had become difficult for her. They were easy tasks for me, but for her would take all day and wear her out.

I made up the bed, watered her plants, swept the balcony, fixed her lunch, refilled the frig with Cokes for the maids who cleaned every Wednesday and her own Diet Caff Free Cokes, refilled her Hershey’s Almond and Toffee Nuggets, opened her weekly bottle of wine, opened the milk cartons, popped open the child-proof caps on everything that was unopened, painted her fingernails and even filed and painted her toenails. Each day she would have a little list of what needed to get done. We chatted the time away with current news, updates from out-of-town family, Mom’s worldwide travels and my family adventures with growing boys. We teased each other when my noon alarm rang, reminding me to take my medicine and her to take her Parkinson’s medicine. Occasionally we would argue and accuse the other of not knowing what they are talking about. I would tell her she’s old and forgetful. She would tell me I fell. Back and forth we went. Two heads are always better than one, and with loads of humor in the midst, we would eventually get there.

Hunter was not in preschool for the last nine months before he started Kindergarten. I already had my routine in place with Emmer. She counted on me being there every Tuesday and Friday. I figured he was 5 years old and could manage to occupy himself for a couple of hours when I was there. Just as Emmer and I had already established our routine, he quickly fell right into place and established his own routine. We stopped at the grocery store each day to pick up what she wanted. I carried the list and he followed behind with the small buggy. Eventually he knew exactly what supplies she would want and which aisle to find them. He helped me carry the bags to her apartment. I took the steps to the 3rd floor and he always took the elevator by himself (proving his independence at an early age). He peeked in the door each day and looked for his special treat, one Andes mint, always sitting and waiting for him on the dresser in the entry. He headed right for her as she sat seated on the far left side of her sofa sipping super hot coffee and reading the newspaper, cover to cover. They greeted each other, shared hugs, he thanked for the candy and then escaped to her bedroom to curl up in her recliner and watch cartoons. When it was time to make up her bed, he assumed his position on the right side of her bed and helped pull up the sheets and tuck them in tightly just the way she liked them. He carefully placed her two pillows on the bedspread and fluffed them, just before patting them down into place without a wrinkle to be found. When he heard me pick up the keys, he knew it was time to head to the main entrance to get her mail and stop at the bank. His job was to carry the keys and open the post office box. He sorted the junk mail and dropped it in the recycle box and put everything else in the plastic bag we carried. We stopped at the bank where the teller kept his favorite lollipops. He always took two, claiming one was for his brother, though I’m fairly certain Justin never actually got a single lollipop.

This was our routine. Day in, day out. This was what we did when we went to Emmer’s. We had tasks to accomplish and a correct order in which to do them. When I was taking too long he would get visibly antsy. Emmer always knew when she needed to step in and occupy his mind. She told him she was going to teach him something important that he would need for the rest of his life. She taught him how to count coins. He would wheel her walker to her and dump out some change onto the seat of her walker. She started with the basics showing him the coins, letting him hold them, study them, feel the weight, the sides and the see the color. She taught him how to identify the coin and then taught him the value of each coin. Eventually he understood enough that she began to teach him how to add them all together. I can see them right now. I would stand in the kitchen doing my chores and peek through the open shutters into the living room where he sat at her feet. His eyes for trained on the seat of her walker and all that bronze and silver as her petite hands would move them about as she reminded him what each coin was. When he got lazy and started guessing, she was quick to correct him. She would say “Now Hunter, you are guessing. Pay attention and tell me what this coin is.” He would refocus and follow her instructions.

Two generations apart, these two connected with each other. Hunter will carry that with him forever. Had I not had the gift of time he would never have had this gift. My injury…an unexpected gift that will last forever.

I didn’t realize the impact these times had on Hunter. This week he came home from school and told me they were learning how to count money in class. “Mom, people in my class don’t know how to count money. I know how to count money. My Great-grandmother taught me how to count money. Not my Grandmother, but my really really old Great-Grandmother. Most people don’t have a Great-grandmother, but I do and she’s really old. We used to go help her when she lived in her own apartment. She taught me how to count money. She would ask me how much an orange drink cost at Cashions. It’s always been .69 but she never remembered that. She always asked how much my favorite drink was and sometimes, if I had done well with my counting she would let me count up to .69 and take it with me to buy my own drink. But we had to get enough money without using the quarters. She kept the quarters for playing bridge with her friends, so we had to count up enough dimes, nickels and pennies. Sometimes if it was a really special day she would give us enough money to go buy Happy Meals for lunch. I loved that! Oh…..how I miss those days.” Then he smiled, propped his chin on his hand and stared out the car window.

I smiled too, knowing that he had a treasured gift. Those nine months gave him memories that will live with him forever. A life-changing injury gave all of us gifts. The gift of time for each other. The gift of time among generations. I will treasure these gifts, for generations to come.

Copyright © Gatewood Campbell, October 2011

Hunter in 2009 shopping for Emmer’s supplies