Time Among Generations

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

I Run

I run because I can.

I run because it matters.

I run because it makes me feel alive.

I run because I love the peace of the open road.

I run because I need my regular dose of girlfriend time.

I run because I am a little bit crazy and sometimes completely nuts.

I run because I like to eat ice cream.

I run because Epilepsy does not define me.

I run because a brain injury does not stop me.

I run because I love to see humanity in its purest form. The raw anticipation, excitement, bliss, bite me, relief and WOW I did it!

Every runner has a story. Some thing, some event, some life-story that gives us the desire to pound the pavement for a ridiculous number of miles and a ridiculous amount of time. There is a story in front of each step, in each step and behind each step.

Running is not about the destination. Running is about the journey. The journey of endurance, perseverance and the glorious victory of covering the distance.

I run because it is simple.

I run because I simply love it.

I’m running Chicago, because that’s the way I roll.

Copyright © Gatewood Campbell, September 2011

God Never Wastes a Hurt

God never wastes a hurt, God wants to use you. In the back of my Bible I have random quotes and thoughts that I have heard over the years. I’m not sure where I was when I heard this, but I’m certain that God prompted me to write it down. I’m clinging to this now and trusting that there has to be something big in my future.

I’m not mad anymore. I’m tired and frustrated. I’m frustrated with the reality that Epilepsy has no cure and no perfect medicine. I remember when I was little and we would go to the Davidson Clinic to see Dr. Williams. I used to ask my parents why doctors “practiced medicine”. That indicated to me that it was not yet perfected and I didn’t understand letting someone who is still practicing something stick me with needles and prescribe drugs to me. Now I understand why doctors still “practice” medicine. I was right all along; medicine is not yet perfected. I understand it, but truly I would prefer that someone other than me serve as the guinea pig.

Apparently I make a good study in medicine. Lord help me, I surely hope THAT is not the big purpose that God has for me! You know when you read the labels on medicine and it says “a small number of patients may experience rare and unusual side effects such as…”, yes, well I tend to fall into that category. I guess everyone falls into some statistic and at least I fall into the rare and unusual category. I’ve always thought I was a kind of stand out person anyway. I majored in Psychology in college, it was not my intention to become a study in psychology. Nevertheless, here I am.

The good news is that the seizures have stopped. The not so good news is that as I slowly increase the new medicine I rapidly turn into someone I do not even recognize. It’s really quite possible that Webster’s 2012 newest addition will read: Mood Swing – definition Gatewood Campbell. I asked Johnny if I could hang a sign around my neck that reads “Heavily medicated. Not responsible for anything that is said or done.”  This new medicine turned me into someone I don’t know nor can I control. After several days of uncontrollable sobbing and screaming at strangers in parking lots for their inability to drive responsibly (or whatever else was annoying me at the time) I decided it was best that I remove myself from the outside for a bit. It seemed that was in my best interest as well as the best interest of the state of North Carolina.

Epilepsy is all about misfires in the brain. In order to treat it, you have to corral the misfires. Let’s just say that I’ve got some wanderers that clearly do not want to cooperate. My doctor says that the side effects I am experiencing are rare and unusual. I really should have expected that by now. Although I am more than ready to throw in the towel, quitting is not an option. I’m still trying to convince myself that a seizure would be worse than how I feel on this medicine. The jury is still out on that one for now.

So, here we go again. In order to isolate the symptoms I’m having, we backed off the new meds for a week and in a few days I will try them again. My dosing schedule is about as complex and confusing as the back to school forms for the boys. I hope I’m more successful at my dosing than I was at communicating how Hunter was supposed to get home from school on the first day. Oh well, he eventually made it home safely regardless of the detours. I certainly pray that the outcome of my detour will end favorably as well.

I’m forever thankful for the generous help and support of our friends and family who continue to rally around us. I have no words to express the depth of gratitude I have for what you have given our family. From the bottom of my heart, THANK YOU!

God never wastes a hurt, God wants to use me. I’m sure it is for more than a footnote to some pharmaceutical company’s research, so until then I’m trying to put aside my frustration and hang on to see the bigger picture.

Copyright © Gatewood Campbell, August 2011

The HOV Lane Leads to Chicago

I’ve been traveling through fog on a deserted road for the last couple of months. I’ve had the headlights on, but the road remained dark and twisted. If I dared to turn on the bright lights and get a glimpse of the road ahead, it frightened me. So I dimmed the lights, squinted my eyes and hesitantly drove on. In a brief moment of bravery, I turned on the bright lights and took a glance at my surroundings. I discovered the beauty of the HOV lane. People were thumbing a ride with me. No one cared my rate of travel, nor my route, nor the personal investment. Friends were standing by, wanting to help, asking to help, taking action to help. You have called me, emailed me, texted me, commented on my blog, and posted to my FB wall. You have shown up at my house with meals to feed our family and relieved me of cooking for several more weeks. I’ve been overwhelmed by your generosity and blessed by the outpouring of support of our friends. I’m not prone to accept help, but you offered freely, and I discovered immense relief in accepting it. I don’t know how to express my gratitude for the love you have shown me during this frustrating detour, except to let you know that you have made it easier. Thank you for sharing my burden. I needed to pass along my fear and my anger and you allowed it. When I can’t see past the tip of my nose to get through a day, you have taken the wheel and let me stretch out in the back seat and rest until I have the energy to grab the wheel again. This is not going to be a quick trip, and there will be some unexpected stops along the way, but the finish line is on my radar. You have brought light to my path. Thank you for making it possible for me to see through the fog.

The results of our two-week trial have shown that the meds I’ve been on for the last five years aren’t doing the job for me anymore. So it’s out with the old and in with the new. I’m trading in for a different model, the newer and hopefully more improved model. We have plotted a new route, but my rate of travel is going to be slow. It will take 6 weeks to gradually wean off of one drug and on to the new drug. I would be kidding myself if I said the timing of this change did not bother me. My next marathon is 8 weeks from now. You do the math…I’m going to spend the next 6 weeks in the toughest part of my marathon training…while weaning off of one anti-seizure drug and onto a brand new drug that I have never used before. I have no idea if it will work, what side effects I will encounter or how it will play with my mind. Nervous? Yes. Quitting? Not even an option! When I set out to run the Chicago Marathon, I decided I was going to run it to celebrate life. More specifically, I’m running Chicago with Team in Training to celebrate my Mom’s life as a Leukemia Survivor. I’m still doing that and I’m just adding more incentive to conquer the windy city. I’m going to celebrate the gift of the ability to run the open road. When so much of my life right now is unknown, there is one thing that I know. I WILL COVER THE DISTANCE. This time, the challenge is going to be a little bigger, because I guess 26.2 miles isn’t a big enough challenge. But I’m here to say that I’m up for it, and I’m not backing down (unless a random metal sign falls on my head and knocks me down…true story). I’m running Chicago, and my Mom is going to be waiting for me at the finish line and we will Celebrate Life and Celebrate Survivors…together!

Copyright © Gatewood Campbell, August 2011

I Need a Moment to be Mad

Can I just have permission to be mad for a little bit? I understand this is just part of my new normal, but that doesn’t mean I have to like it. Usually I can accept it. I really don’t have a choice. I have to live with it, but sometimes it just makes me mad. It makes me mad that I had to go look at trashcans in Target. Trashcans, of all things! I relive those moments over and over again. Realizing that my plan had gone awry and I needed to go to Target, getting in the van, pulling into the parking lot, walking in the store…. waking up in an ambulance, completely annoyed by the EMT who was cutting off my sleeves to hook up an IV. Sometimes it’s all just too much and it’s more than I can bear.

I have learned to live with frequent bouts of mild dizziness. I have learned to live with mild confusion. I have learned to live by my 7 AM, Noon and 7 PM alarms that remind me that it’s time to take my medicine. I have learned to compensate and adjust. I can tolerate a lot, but sometimes it becomes too much and I’m forced to admit that something isn’t right.

It started Easter Sunday. In the middle of the message, I was looking at the stage and suddenly my vision blurred. Words began echoing inside my head like a ping-pong ball being bounced inside my skull. I told myself to focus and regain control. Refocus, refocus, refocus. It wasn’t working. My eyes fell down to my lap and I saw my hands drop like dead weight off my lap. I tried to pull my hands back but I couldn’t move them. I wanted to tell Johnny something was off. I tried to speak. I couldn’t. I leaned in close to him and he looked at me. Words weren’t needed. He saw it in my eyes; tears, confusion, fear, anxiety. He knew immediately, we both knew immediately. Something wasn’t right.

A couple of months ago I made a phone call for my grandmother. She wanted to know how much her pedicure would cost. I called, I asked, and I hung up. My grandmother asked how much it would cost. I couldn’t remember. The voice inside my head said “get it together, what did she tell you?” Try as I may, I could not recall what she had just told me.

Just a few weeks ago I was preparing the family for our trip to Montreat. The boys had packed their own bags and Johnny had already set aside his clothes for the suitcase, so I just needed to pack my own things. I stood in front of my closet. I just needed a couple outfits for running, several pairs of shorts and shirts and a couple of warmer things for the evenings. I kept telling myself that was what I needed, but I stood frozen at my closet, not knowing how to proceed. This was not your average “what do I want to wear” moment. This was my “I do not comprehend” moment.  I could not make the connection. I tried so hard, but all I did was move things from one pile to another and then back again. Progress was painstakingly slow. I tried all my techniques from rehab, breaking it down into small steps and talking aloud as if walking myself through the task in order to maintain focus. It didn’t help. I could not figure out how to pack my suitcase.

Last week I walked out of a store. I looked at the parking lot and realized I didn’t know where I parked my van. Logically I knew I could retrace my steps and find my van the same way we look for our keys when we lose them. I tried to picture pulling into the parking lot, but the picture was blank. I had no memory of driving into the parking lot. I had no memory of parking the van. Here I stood, bags in hand and I couldn’t remember the events that got me there. One problem at a time; first I had to find my car. I wandered the parking lot pushing the lock button on the remote so the horn would sound and I followed the sound until I found my van. Later I told Johnny what had happened. He asked me what store I had been in when this happened. I couldn’t tell him where I was. “That is a problem,” he told me. Something wasn’t right.

This is where I walk the balance beam known as Mild Traumatic Brain Injury. The damage is enough to make simple tasks difficult and sometimes impossible, yet my cognitive abilities are still strong enough to identify that I used to be able to complete the task but now I can’t. This is my boiling point. This is where I just get mad. I know I’m fortunate the injury is only mild, but it still makes me mad when I can’t pack a suitcase, or remember what the lady on the phone just told me, or find my van. I spent 32 years of my life one way and now I’m different and I’m not used to it, and sometimes I just want permission to be mad.

I’m a work in progress and adjustments are always going to be part of my life. Adjustments to my new normal will include adjustments to my medications. My neurologist can’t tell me what is happening right now. There are no blood tests are X-rays to identify the problem. We all agree something isn’t right, but we don’t know what. These episodes could be unfortunate side effects of my medication or they could be break through seizures. There is no way to know except to push my body to a new threshold and see what happens. It’s kind of like House has just told Thirteen and Cameron to double the meds. If the patient’s symptoms persist more rapidly then it’s a medication side effect. If the symptoms stop then it’s break through seizures. That’s all fine and good when I’m watching it on TV. It’s not so great when I’m the patient, not to mention that the high doses of medication make me want to crawl out of my skin with irritability and anxiety. (This pleasant side effect also makes me pure joy to be around…NOT.) My body’s response, over time, will reveal the answer. The hardest test for me and for those around me, is surviving the time it takes for my body to reveal the answers.

I’ve been down this road before. Previously I traveled it in privacy, hidden beneath silence and shame. I survived it, but I also have scars from that well-worn path. This time I’m going to try a new road. I’m taking the HOV lane and giving carpooling a try. This time I’m bringing you with me. Those who have read my story have touched me in ways that I cannot describe. You have opened your heart and your mind to me. You have voiced your love, your concern and your acceptance. You have allowed me, invited me and even empowered me, to accept who I have become over the last few years. You have brightened my life and my path. I hope you will allow me to bring you along as I cross this speed bump in my journey. Life is not a sprint. Life is a marathon. This is my marathon…and the finish line is around the corner…somewhere…it’s just not in sight quite yet.

© Gatewood Campbell, July 2011