Tag Archives: seizures

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Pressing On Through Frustration

I try really hard not to complain about my epilepsy, my brain injury and the complicated side effects of the five medications that I take everyday, but it is frustrating. It’s frustrating when I could depend on myself in the past and I can’t anymore. There is just so much that is different.

Last week I completely freaked out in my weight class when the instructor asked me to count how many people were there. I have trouble counting groups of anything because I can’t figure out how to group things in an order so that I will know what has been counted and what has not been counted. Short of asking everyone to stand up and then sit down after I point to them I was literally at a loss for what to do. I just tried to count the mats on the floor and then I added a few for good measure. I walked out of class wondering how I had turned into someone who is afraid to silently count people who aren’t even looking or talking to me. Bizarre.

I miss the human connection that I used to have. Sometimes it can be so hard. Conversations can be so strained and down right exhausting. My mind is slow and my speech is even slower. When I try to speak, the words don’t sound right coming out of my mouth so I repeat them. They still don’t sound right. So I slow my speech to pay attention to everything I’m saying, but they still sound wrong, so I repeat them again, and then I sound ridiculous.  Then I’m embarrassed and I quit trying. Sometimes I don’t understand what people are talking about so I can’t even enter the conversation. Years ago I could have.  Now I just stand silent.

It feels like forever since I’ve felt like myself. I’m not sure I know who that is anymore. When I make mistakes is it because I’m just getting a little older and trying to multi task too much or is it because of my brain injury and the side effects of the epilepsy medicine? Can I drop just one medicine that causes the worst side effects or is the risk of seizure too great? A seizure could be fatal. The risk is too great. I have to press on through the frustration.

I’m still learning. I’m still growing. I’m still trying to embrace my new me, my new world and my new normal. I’m trying really hard to like it. Some days are easier than others. Today was not an easy day.

Copyright © Gatewood Campbell, December 2011

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Trash to Treasure and Raising Awareness

November is Epilepsy Awareness Month. My family and I are wearing purple ribbons everyday to raise awareness. We invite our friends to share awareness by wearing ribbons and telling others why you are putting on purple this month!  Awareness begins with sharing and I’m sharing my own story of Epilepsy.

My memories until 2005 are pretty clear. After that, the memories fade for a few years, and then pick back up somewhere in 2008. I still fight back the tears and anger when I think about the years of my children’s lives where I was physically present, but mentally absent. I was robbed of fully participating in some of the best years of their childhood. My career ended when I thought it was just beginning. A Mild Traumatic Brain Injury in 2005 led to Epilepsy and my world was rocked. I wasn’t shattered beyond repair, but I was thrown into a world I did not know existed and was transplanted into a body and a mind that I did not recognize. Each day is a lesson in both patience and perseverance with myself. I’m trying to embrace the changes that life has brought me, accept the reality of my brain injury and learn to live with Epilepsy.

It was a simple errand. I needed to price trashcans for an upcoming event where I worked. I went to a local store. I remember walking in the store and turning left past the cash registers and then hanging a right between clothing and cards. Then I remember looking into bright lights, feeling plastic and air on my face, hearing strange voices rattling off medical jargon and a lot of loud beeps. I saw scissors cutting the left sleeve of my coat and sweater. I tried to move my arm away from the scissors but my arm was stuck. I tried to raise my head and look around but my head wouldn’t move. I remember the fear I felt when I realized I was in an ambulance and strapped to a gurney. We will never know exactly what happened that day. Someone found me on the trashcan aisle. There were no witnesses to tell us why I ended up on the ground with a gash bleeding on the side of my head.

I spent the next two months being chauffeured to every specialist imaginable but there seemed to be no explanation for my accident. My blood tests were good, X Rays were good, MRIs were good, MRAs were good, EEGs were good, EKGs were good and tilt table tests were good. With no obvious illness or condition, the doctors released me to drive and resume my life. As weeks passed and I attempted to go about my normal routines I quickly realized that nothing was normal. I couldn’t remember my address, my phone number or my birthday. I couldn’t remember where my children were and I couldn’t remember where I was supposed to be. I couldn’t even recall the names of my own family members. Doctors assured me that all their tests showed I was fine and they expected a full recovery. I knew I was not fine.

Six months later I was staring into bright lights again. This time I was on the floor of a children’s store in the mall. My head felt like hammers were hitting it, my shoulder ached and my tongue felt like someone had stabbed it with a butcher’s knife. A woman’s face was above me and she told me help was coming and that I would be okay. She said my husband was on his way. I remember screaming for my 2 year old son. She pointed to the back of the store where customers had occupied him with toys. When I asked what happened, she said I had a seizure and she had witnessed everything.

My Neurologist confirmed that I had Post Traumatic Epilepsy. I spent another six months in the passenger seat being chauffeured around town, dependent upon friends and family to help maintain some sense of normal for my children. After several trials of medications we finally found one with manageable side effects. I went through months of speech and cognitive therapy to learn new coping strategies for my deficiencies.

My life changed forever in 2005. I fought hard to regain what was lost but I had to face the reality of the long-term injuries I sustained. I left my career in 2007 to focus on my own physical and mental health and on my family. I’ve been on a journey of self discovery while learning to cope differently in a world that expects me to be the same. The shell of my body remains the same but my inner workings have been overhauled. I’m working to fight my constant fears of another seizure. I’m learning to accept the rest of my life on medication and hoping that the side effects won’t rob anymore of my time. I’m trying to make Epilepsy understood and accepted among people and a world that does not understand and does not accept it. I’m also learning that when I’m brave enough to share my story there are people who want to understand and who want to raise awareness.

I have a brain injury and I have Epilepsy, but they do not have me. I wake up each day and make a conscious decision to embrace change, accept a brain injury, live with epilepsy and thrive in my own skin. My journey began with a trashcan and I’m determined to turn it into treasure.

Copyright © Gatewood Campbell, November 2011

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HOLDFAST

I believe God has a plan for each one of us. I believe He wants us to submit our will to His and allow Him to reign as the Lord of our lives. He wants us to live everyday knowing Him, loving Him and trusting Him.  He has a way of speaking to us and getting our attention. Sometimes He moves rocks and sometimes He moves mountains. Sometimes He speaks softly and sometimes He speaks through a megaphone held tight to our ears. Sometimes God gives us a glimpse of His power and sometimes He parts the seas. Sometimes He knocks us off a chair to get our attention and sometimes he knocks our feet out from under us and knocks us in (or on) the head. I also know that when God moves a mountain, speaks with a megaphone, parts the seas, knocks me off my feet and hits me on the head, I better buckle myself down and hold on.

When a friend called me at the last minute with a free ticket to hear Beth Moore in Charlotte on July 22nd and 23rd, it was an offer too good to pass up. Deep down I knew it was more than just a good offer. I recognize when God has arranged something much bigger than you or I can arrange. He knows my future, so He knows what I need before I know I need it. I knew God’s hand was all over this. This was His appointment, and I was probably going to need to buckle my seatbelt again, and I might even need a helmet.

I was in an odd place in the spring and early summer. I felt disconnected and something just wasn’t right. I know now that what I was experiencing were break through seizures, but at the time I didn’t know that. I had been managing my regular routine without too much trouble, but quietly, without anyone other than Johnny knowing it, I had been in touch with my neurologist. Let me stop right here and say that my neurologist is one of God’s gifts to me. I had tried, unsuccessfully, to see her after I fell in Target. Instead I saw a doctor that I dubbed “the idiot” who dismissed me and my symptoms. After my seizure in Gymboree (I told the idiot something was wrong but, NO, he wouldn’t listen to me) an ER doctor waved his magic wand and got me on her calendar for the very next week. Several months into my treatments with her I saw her Davidson diploma on the wall. She was a Psychology Major and in fact, was the recipient of the William Gatewood Workman Psychology Award. Yep, that means she was recognized as the most outstanding senior among the psych majors. Her husband is a professor at Davidson and knows my Mom well. I am not just a routine patient on her calendar. She genuinely cares for my overall health and well-being. God gave her to me in my darkest hour. When I had given up on finding anyone who could help me, God spread His fingers and allowed a seizure to sift through so that my path would cross with a doctor who would indeed help me. My doctor, my gift, came through the pain of a seizure and God’s hand was all over it. He protected me and He protected Hunter on that September day in Gymboree.

Back to the story…

I know my doctor dreads it when I call and say “I’m just not right”. Unfortunately my brain is not like Caterpillar equipment and you can’t hook me up to a computer and have it spit out a fault code. It takes some work to just get to a diagnosis and it’s not easy or fun. When it’s bad enough for me to let Johnny and my doctor know something is not right, then it has gotten pretty bad. We had talked over the phone and she was doing bloodwork, yada yada yada. I convinced myself that my disconnection was an oddity and would resolve itself. For the last few years my Epilepsy was fairly controlled. I was keeping up with the family, the house and training for the Chicago Marathon. Surely the doctor would confirm these episodes were flukes and I would just move along.

I was not at all prepared to hear her tell me that the episodes I had were break through seizures. This was the can of worms I wanted sealed shut forever. Seizures meant the medication wasn’t working which meant changing meds which meant new side effects which meant chaos. This was not the news I wanted to hear, but it was my reality. The words of my doctor on July 27th began to drown out and the phrase that had been repeated at the women’s conference just 4 days earlier began to ring in my ears. Perhaps Beth Moore’s microphone was connected directly to my ears “H.O.L.D.F.A.S.T. God has set His love upon me”. This was the message God had given her for Charlotte, or maybe just for Gatewood. Nevertheless, because of a last minute free ticket, I was sitting in that audience on the 20th row at the Charlotte Coliseum when she taught us this phrase and asked us to repeat it until we were tongue-tied. I listened for hours as she taught and participated as we were led in worship, but I really wasn’t connecting. I noticed people tearing up and I couldn’t understand why they were teary eyed. I remember thinking that I wished I was able to feel emotion, but I couldn’t. I also remember telling myself that God wanted me there and I was going to keep my seat belt fastened until the ride had come to a safe and complete stop.

As I look back at my notes from that weekend it’s clear that I wasn’t completely present and my brain was mush. After hours of her teaching I only have 3 short pages of notes, much of it just words or phrases on different pages throughout the program. There is no rhyme or reason to my method of note-taking (this is completely out of character for me as many of you know). However, through the mush, disconnection and confusion, here is a synopsis of what I walked away with, along with my own personal reflections.

H.O.L.D.F.A.S.T. God Has Set His Love Upon Me.

  • His affection is set upon you. He loves me. HE loves me. HE LOVES me. HE LOVES ME!
  • Only He is your praise. I can not depend on the pills in the medicine bottle to contain my epilepsy.
  • Loving Him awakens your true heart. I can’t know my own heart until I fully give myself to God and allow Him to open it.
  • Doing His will does us good. He reminds me that I have turned my personal pain into service for my family.
  • Fleeing to Him means fleeing with Him. He never leaves us.  I AM with you. The I AM is with me because He loves me.
  • Any tighter embrace will also replace. I have to wrap both arms around Him and leave no room for anything else.
  • Satan wants what I have. Satan wants my faith. If my arms are wrapped tightly around the I AM, Satan can not steal from me.
  • The Lord is your life. The Lord is my life. The Lord Jesus Christ is the Lord of my life.

So, was it God’s appointment that I hear this message? Clearly YES! This message of love and hope was given to me just 4 days before I buckled my seatbelt in this wild roller coaster that I have been riding for the last 4 months. I have clung to this phrase, reminding myself to hold on to God’s love. I have looked at my bracelet that I wear everyday with the word “Believe” that I had engraved after I took Beth Moore’s Believing God class right after my diagnosis. It was and still is my daily reminder to believe God for all that I need. I have reminded myself to HOLDFAST after 3 months of trying to start a new medicine have failed miserably and I’m right back where we started with the same old meds that might allow break through seizures again. When I curled up on the floor and cried for hours for no reason I had to HOLDFAST. When my anger exploded in verbal attacks on strangers and my family for no reason I had to HOLDFAST. When I was nauseated after morning meds I had to HOLDFAST. When I couldn’t sleep because my mind was racing with thoughts of the unknown I had to HOLDFAST. When I couldn’t get through a complete day without needing a 3 hour nap I had to HOLDFAST. When I wanted to give up but I couldn’t because I wouldn’t learn the lesson I had to HOLDFAST. When I saw the looks of confusion in my children’s eyes I had to HOLDFAST.  God has set His love upon me. He will carry me when I hold on to Him.

I don’t know when the roller coaster will finally stop. I am still buckled in but I am so over this ride. My doctor says my body has been through too much to try anything new right now. She told me to “hold on” for a few months until my body has stabilized and then we will try something else. My doctor actually told me to hold on. I think I heard God giggle when she used that phrase with me, but somehow I wasn’t a bit surprised to hear her say that. God and I have a little thing going back and forth you know. H.O.L.D.F.A.S.T. God Has Set His Love Upon Me.

Copyright © Gatewood Campbell, November 2011

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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

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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