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

My Beloved Montreat

This is my safe place, my peaceful place, where I am the most secure in my own skin. This is where life happens, and relationships remain, regardless of life. When life takes an unexpected bend, these are the people that hold you, in their hearts, in their minds, in their prayers and in their actions. They hold your hand and they carry you. This is where I am embraced and where friends help me embrace change. This is where it’s ok to ask the deeply personal questions, because it’s not invasive.  It’s an avenue to understanding, to growing, to succeeding and to thriving, for all of us.  The people of this valley have faced tremendous heartache and unspeakable tragedy. There are survivors from every hardship imaginable, and still they walk the same paths they have taken for years, hand in hand, with friends they once met as clubbies. When the bend in the road reveals a hard fought victory, those fellow clubbies will stand behind you, watching you, cheering for you, wanting you to have the stage and feel the thrill of success. The victories are so much sweeter because we have shared the battle with those wanting to bear the load. This is where love crosses generations. My mother’s friends love her, they love me and they love my children.  I share that love with their families. My mother made a lifetime of memories here, I made a lifetime of memories here and now my own children are making a lifetime of memories. Montreat is people, woven together, spanning years, spanning miles and all the while remaining connected.  Montreat is the point of origin from which we venture out into the world.  We know that when it’s time to come home, she, and her people will welcome us with open arms, eager to embrace us.  If her sweetness could be bottled and sold, we would all be rich. But if it were readily available, it wouldn’t be what it is. Her inability to be replicated is what makes us love her so deeply, and yearn for her when we’ve been gone too long.  My week in my safe place has come to an end.  I’ve run her roads, climbed her trails, dipped my toes in her stream and spent precious hours with people that I adore. I’m refreshed and ready to venture beyond her iconic stone gate, because I know that I carry her and her people, in my heart wherever life takes me.

Montreat, how I love you, how I love you, my dear old Montreat…

© Gatewood Campbell, July 2011

The Little Gatewood That Could

There are lots of things that I don’t do anymore, things I used to do without hesitation, but now I just don’t do them. One of those things is talking.

Everyday conversation can be extremely difficult for me. It does not come naturally anymore. When I was in rehab, my cognitive therapist spent hours role-playing with me. We would pretend to see each other across the aisle in the grocery store and practice casual encounter conversation. She would say “Well, Hi Gatewood, how are you?” And, I would freeze, not knowing how to answer this simple question. At my worst, I could not even find the words to answer this question that we throw around multiple times every day. Usually I would just smile, nod and keep moving. On a good day I might have answered “Fine” but I would not have known to follow it up with “and how are you?” Instead there would just be awkward silence because I didn’t follow up my response with the expected question. So, in that awkward moment of silence I would think….nothing….I was thinking absolutely nothing. My mind was blank. I wanted to call the person by name but I couldn’t match the face with the name. Johnny constantly reminds me that he can’t remember anyone’s name and it’s ok. Actually, he says that my brain injury just caused me to have a man’s brain, but he has had 39 years to adjust to life with a man’s mind, so I’ve still got some years of adjustment ahead. But here’s the thing that causes me endless frustration, before my noggin got knocked, when I saw someone I knew their name, the names and ages of their kids and the schools they attended, the names of their parents, their spouse, sometimes even their address or their phone number. I realize this is a lot of unnecessary information, nonetheless, I knew it, I could recall it quickly and use it frequently in conversation. Post noggin knock, I recognized the faces but I was never sure that I would call them by the correct name, so instead of a personal conversation, my response was a nod in their general direction and then as if I had picked up the “Pass Go and collect $200” card I would dart off in search an aisle without a shopper that I may have to make eye contact with. At my worst, I would do my shopping very late at night when hardly anyone shops. This allowed me the necessary quiet to focus on my list and the peace of knowing I wouldn’t have to talk to anyone….and I really loved the self checkout line. Now that was sheer bliss, I could even get through the checkout without speaking to a soul! Loved that!

I’m much better now. Not where I once was, but definitely leaps and bounds from where I have been. For those of you who get me to talk, you must know that you have touched some part of me that few people reach. You give me that peaceful place, that peaceful acceptance, that peaceful space that allows me to speak slowly. I need time to think through my thoughts, assign the correct words to each specific thought and them string those words together in the right order so that a solid message can be conveyed. If I’m really comfortable then I might even talk a little bit faster and not feel like a deer in Johnny’s crosshairs when my speech abruptly stops because I have mixed up my words, lost my words or started my sentence with the end of the thought instead of the beginning of the thought.

This leads me to “The Little Gatewood that Could”. There are a lot of things that I can do. I can take care of my family, I can take care of old ladies, and I can run 26.2 miles. But I don’t do conversation well and I certainly do not want to speak to more than about four people at any given time. I hardly want two eyes peering at me waiting for me to speak, much less a dozen or more eyes waiting, watching and listening. At this point, most people would say they would rather run a marathon than whatever else, but since I’m clearly not like most people, and I would rather run the marathon than talk I can’t say that here, but you get my drift. I don’t do speaking. A couple of months ago, after my Mom announced her retirement, a group of her close friends and colleagues began planning the retirement party to end all parties. This was no small “thanks for the memories” event. Michael Scott’s party planning committee had nothing on this group of folks and they had big plans for Mom’s special day. So I get this call from Mom’s dear friend Kathy and she mentions the people who are going to speak at Mom’s party…and she says “and of course you”. I think I may have checked the volume on my phone to be sure I heard her correctly and that the phone line was actually still connected. I was sure I had not heard that I was going to speak in front of a group of people…and about a topic as emotional as my mother! Oh dear Lord, come quickly, more specifically before 4pm on June 27th, because I can not figure out how to pull this off. After we finished talking and I realized that I was no longer interested in that great bargain find at Habitat that had caught my eye, I got back in my car and thought it through. Obviously my 95 year old Grandmother was not going to speak, my brother was in Colorado and I couldn’t see propping a 12 year old and a 7 year old on stage either. So, yes, I was the obvious choice, and indeed it was appropriate that a family member speak to Mom, about Mom, for Mom, but seriously, did they really want me to talk….to actual people? So like everything I do, I talked it out on a Tuesday night run, with my running buddy Mari. She had read some of my writing and told me I could definitely do it, I just needed to start writing down my thoughts and my speech would piece itself together. Well duh, it have never occurred to me that I could write something down, rehearse it and use that as my guide to speak.

Fast forward through days of jotting down thoughts, a lot of miles run while thinking about what to say, random notes on my computer….and a couple of hours pacing in the backyard under the 97 degree sunshine while I rehearsed reading aloud the final copy of my speech. I needed to convey the words of my speech without my legs wobbling out from beneath me, without the paper shaking violently in my nervous hands, without my neck turning red from fear and without sobbing uncontrollably and irrationally as I spoke personal heartfelt words about the woman who raised me. Again, dear Lord, I’m really serious, Please come before 4pm this afternoon, you have about 1 hour left to arrive and save me from this! No dice, the appointed hour arrived. The kids and I arrived with my Grandmother in tow, well actually I was in tow I guess, since I was pushing her in the wheelchair. The room was packed with Mom’s friends from as far back as her days in Elementary School. People had flown in from all over the country to be here for Mom. This was certainly not the local grocery store aisle, but somehow I needed to pretend that it was and that I could do this. As the show unfolded and Mom was seated on stage a couple of heavy hitters opened up with their thoughts on Mom. I reached into my purse and pulled out my speech, slid it onto my lap and fitted my glasses firmly on my face. (I’m 37, give me a break, of course I need glasses now). I knew I was about to be introduced…and then…there it was…the words I had feared for so many weeks…Dr. Barton said “Now Wookie’s daughter is going to come up and share a few words about her Mom” at which point I thought my mother was going to fall off the stage. Her eyes bugged out of her face and her mouth dropped when I stood up. I think she thought it was a joke, but, speech in hand I walked on stage. Ok Lord, you didn’t come, so I’m counting on you to give me the strength. So, I looked at Mom, I looked at a gazillion eyes staring at me, listening to me, anxious to hear what I had to say. Many faces looked at me with love and pride, as if channeling their own strength to me, knowing me well enough to know that this was a big, a bigger than big step for me to speak in front of this group. My legs didn’t give out, my shaking hands were hidden by the podium which held my papers, and I had a nice suntan to hide any red that might have popped up on my neck. Yes I cried, but I think I contained it enough that people could understand what I was saying, and my eyes weren’t so blurred with tears that I couldn’t read my words. And then, it was done. I had conquered about 6 years of demons in about 6.5 minutes flat! I was supposed to keep my speech to 3 minutes, but I am my Mother’s child so I wasn’t really so concerned about a time limit. I figured since I was the daughter of the star of the show I could get away with breaking the rules anyway. I’m not sure if it was the words that I spoke or the fact that Mom knew just how far I reached outside of my comfort zone that meant so much to her. Maybe it was a combination of both. For me, I really didn’t think I had it in me to pull this one off, but I did. Just like Kathy told me weeks ago, it would be worth it. And it was, in many, many ways.

© Gatewood Campbell, June 2011