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


The Decision to Walk Away Comes Full Circle

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 matter how complicated the task. Post injury, I could look at point A, envision point Z, but everything in the middle was blank. I had no idea how to do it, I mean I had absolutely no clue where to begin and I didn’t have anyone to help me. The expectations and demands placed on me did not change, but my ability did. I would stare at memos listing things I was supposed to work on, and the words blurred from the tears falling off my face. I didn’t know how to accomplish what needed to be done and I had no where to turn for help. Behind my blank stares, what people didn’t know was that I was afraid to even answer the phone. Many times I didn’t understand the questions people asked me and if it required my short term memory to form an answer I couldn’t do it. I relied on voicemail to take messages so I could replay the messages multiple times before attempting to devise a plan to answer the needs of the caller before calling them back. I rarely returned emails in the same day, because I was overwhelmed everytime the dumb computer dinged that I had a new message. I wanted to scream “I’m doing the best that I can!”  The stress of not being able to perform at work was detrimental to my recovery. I started having seizures in my office. Sometimes I could sense them coming and had enough time to call Johnny and manage to speak enough words that let him know I needed help. More than once he had to leave his job and come sit with me until the seizure passed.  Sometimes I wasn’t able to call Johnny or my Mom for help, so I would sit in my office, all alone, hoping that I had taken my anti-seizure meds soon enough to limit the seizure. As this routine became more frequent…work, stress, seizure…work, stress, seizure…my neurologist encouraged me to take a hard look at my life. She said it was no longer in the best interest of my health to try to work. This memo I understood…Point A was seizures…Point Z was seizure free. The path to get there meant eliminating unnecessary stressors in my life. The unnecessary stress was my job. I tried to make sense of her advice. Yes, it made logical sense, but it didn’t make heart sense. How could it be right to walk away from ministry? How could walking away from people who needed help be right?  For months my doctor and I would have the same discussion….”you need to quit your job”….”yeah, but it’s ministry and I can’t just walk away from ministry. How can it be God’s plan to walk away from ministry?”  This mental back and forth conversation was getting very old…and so were the seizures.

On a Thursday afternoon in January 2007, just shy of two years from the accident that caused the Mild Traumatic Brain Injury, I was again overwhelmed by the demands at work. I ate lunch at my desk and decided I needed a breather. I went for a drive and ended up at the cemetery in Davidson. I walked over to my Grandfather’s plot and plopped onto the grass in front of his grave marker. Slowly and deliberately I traced every single letter in his name with my fingers.              W I L L I A M  G A T E W O O D  W O R K M A N. One by one I pulled the blades of grass from the ground so that every edge of the marble slab was visible. I looked at the marker that will one day cover my Grandmother’s grave. I brushed my hand across the cold smoothe surface of the gray slab. I began to pray and then I began to cry. This was not a quiet gentle cry, this was the ugly kind of crying when your whole body gasps for air. I was so lost and confused and I began to tell my Grandfather all about it. I was talking out loud about my frustration with the accident, the injury, the diagnosis, my job and the constant criticism I faced  …blah blah blah. I remember uttering that no matter how hard I tried at work it was never enough, and that I just didn’t know what to do. I just needed someone to help me. And then…. I was interrupted. I froze, there were no more tears and the peace within and around me was palpable.  I heard a voice. I looked at the ground expecting to see a shadow cast in front of me. Nope, no shadow. I looked up to my right, expecting to see someone standing there. Nope, no one. But the voice remained. The voice, God? My Grandfather? I don’t know, but the direction given by the voice was unmistakably clear. The voice spoke to my head and to my heart. Very clearly, this is what I heard “Well done. Your ministry at the church is done. You have accomplished my plan for you and I am pleased. Your time there is over. Your family is your ministry and you must go to them.” Loud and clear…Yep, I heard this loud and clear. I hopped up from the ground, walked back to my car, drove back to my office and started drafting my letter of resignation. Sure, this didn’t really make logical sense, but I knew this was not a plan that I was going to argue with. Loud and clear…one door had just been closed. The following Monday I turned in my notice.

Four and a half years have passed since then. My days are indeed filled with ministering to my family. I could never have known what was to come or why it was vital that my time and energy be available for my family in the years after I walked away from my job. Of course, my time is full with my boys, playing Mom to various neighborhood kids when school lets out, chauffeuring back and forth between schools, sports and other activities. I knew my days would be filled with these things. I didn’t know that my Grandmother would come to depend on me so much. I didn’t know that my own brain injury would equip me to better help her and to better understand her needs. I didn’t know that right there, sitting in front of my Grandfather’s grave, God spoke to me because God knew that in a couple of short years, the love of my Grandfather’s life was going to need me to ensure that her life, however long it may be, is lived to the greatest extent possible.

Several months ago I was getting ready to leave my Grandmother’s room. I had finished her laundry and put everything away. I went through our routine of helping her put on her knee high pantyhose and shoes, filing and painting her fingernails, and her toenails (yes I even do toenails) opening and sorting her mail and clearing off all the voicemails on her answering machine, etc etc. We reviewed her plans for the rest of the day and talked about what she had planned. We made arrangements for her meals and even laid out clothes for the next day. I did a quick mental checklist and thought she was all set and I was ready to go. I gathered up my bags and told her we had taken care of everything and I was going to leave. She glanced at me and slowly lowered her chin towards her chest. She let out a long sigh and her chin started to tremble and I realized she was fighting back tears. She said “it’s just so hard getting old, being confused and trying to live on your own.” If ever there was an “ah ha” moment in my life, this was it for sure! In the blink of her eyes, the previous six years zoomed through my mind in picture pages. Her eyes reflected my own image. I recognized the blank stare looking back at me. I knew all too well the confusion and desperation she felt. I realized that my January visit to the cemetery four years ago was all about this moment. God had indeed planned my journey, accident, injury and all. He had equipped me to understand what others can’t. He had equipped me to care for my Grandmother and make her quality of life better. There, in 2007, at the foot of my Grandfather’s grave, though he had died 12 years earlier, he and God pointed me in the direction of my family, because they knew what the future held. So I looked back at my Grandmother, put my bags down and pulled my chair right up beside her. I took her calendar from her hand and said “I understand, now tell me what is confusing you and I will help you through this, one step at a time.”

© Gatewood Campbell, June 2011

Just When I Least Expected It

This is a copy of my first post on Facebook in March.  It was, for many, the very first time they had heard this story. Even for those that knew, they didn’t know the depths nor the details. I have never felt such love as I did when I began to read the comments that people shared with me having read my post.  Today, I share it on my blog, not within the safety of my FB friends list, but open on the web, for anyone to read. This is a big leap for me.

The seizure took me by surprise. It had been six months since my accident that left me with a Mild Traumatic Brain Injury. I was finally beginning to learn how to face the world again. Brain injury is a curious thing. On the outside I looked the same. Beneath the surface, everything, and I mean EVERYTHING was completely different. Nothing was routine anymore and I could not remember anything. I had to keep notes in order to recall my birthday, my children’s birthdates and even my own home phone number. I would wake up each morning and put a sticky note on the phone with the current date and where my kids were that day. Justin was in Elementary School so usually I knew where he was. Hunter was almost two and naturally I wanted him to be with me as much as possible. The problem was that I couldn’t remember when he was with me or when he was at daycare.  I remember being downstairs and being frightened by his sudden appearance in the room because I had forgotten he was at home. If he was at daycare I would run frantically to his room multiple times each day looking for him. We decided it was safest for him to go to daycare everyday, at least until I had learned to cope with my new world. If I became confused during the day I learned to go to the phone and everything I needed to know was listed there. I remember the first time I went to the grocery store and I stood in the produce section with an empty cart and I had no idea how to go about filling the cart. I left the store empty handed with my head hung low and tears streaming down my face. I didn’t feel like I even knew who I was anymore. My body was the same, but my brain, my very own brain that I had always known, was suddenly foreign territory.

I took a leave from work and worked hard to recover from my brain trauma and go through extensive cognitive rehabilitation. In six months I was finally making positive steps in recovery. I was learning to accept the changes and I was learning to incorporate strategies to compensate for my deficiencies. And then, just when I thought I could manage to face a day without as many sticky notes and reminders….the seizure that brought another new diagnosis.

I remember looking across the rack of clothes in Gymboree at my two year old and thinking to myself “I’m in trouble and I need help. I need someone to help me. I need someone to help my son!” I tried to speak but nothing would come out of my mouth. I desperately wanted to get the attention of the people in the store, but I couldn’t. Then, I remember staring up into the lights in the ceiling and crying out for my baby boy. The Gymboree manager was staring deep into my eyes with a calm spirit and a gentle voice. She repeatedly told me that he was ok. From the corner of my eye I could see his stroller and he was surrounded by women who had come to our aid and distracted him from the scene that had just unfolded. There must have been four or five women smiling at him, singing to him, covering him head to toe in stickers and batting balloons back and forth with him. He was fine. I was not, but I didn’t know why. I wanted to get up but my head was pounding, my shoulder was hurt and I could barely speak because my tongue hurt so much(I had chomped down on it very hard during the seizure).  There was chaos and confusion. I could hear people talking on two-way radios and cell phones. I was scared and confused. I tried to stay focused on the young store manager with the gentle voice. She kept telling me to stay still and help was on the way. The EMT arrived quickly and started asking me as well as everyone in the store a gazillion questions. If you are going to have an emergency, evidently it is helpful to do so in a new mall with state of the art security and a complete emergency response plan in place. I thought to myself “Ok, you have got to be kidding me! Am I on candid camera? Is this a dream….or maybe a nightmare? I finally got up the nerve to venture outside of my safety zone and go try going somewhere new, on my own…and THIS is what happens? I just wanted to check the clearance rack in Gymboree!” I heard a familiar voice and arched my neck back towards the front of the store. I wanted to be sure the face matched the voice. Yes, it was Johnny!  After my accident, I programmed his phone number as the “In Case of Emergency” contact in my cell phone and I had put his contact information directly underneath my driver’s license in my wallet. Someone in the store called him right away. He rushed to the mall and flagged down security in the parking lot and told them he had received a call from Gymboree. Security said they knew about the situation and escorted him right to my side. He was with me within minutes of my seizure. I remember Johnny’s calm demeanor and easy, but controlled voice telling me that I had a seizure and that everything was going to be ok. Ah yes, another escort in the ambulance for me while Johnny was off and running to farm out our kids to our relatives and then meet me at the hospital. Here we go…again. I was tired of this becoming the new normal in our life.

 Somehow, given the events of the previous six months, the current circumstances probably should not have been a surprise. Regardless, I was surprised by the seizure and even more surprised that a slip and fall would lead to Epilepsy. Now I had a chronic condition that would require medicine for the rest of my life. To say the seizure was a setback in my recovery from the initial brain injury is an understatement. This was only the beginning of a journey I did not choose, but one which God chose for me. It’s only now that I’m beginning to understand why He has taken me on this long road and how I can still flourish, even within my own safe world.

 Why am I telling this story now?  In the last six years few people had a room with a view my world. I’ve spent years paddling through muddy water and I’m finally beginning to see clear beautiful water ahead. A dear friend suggested I start putting my thoughts on paper and sharing my experience. It may only help me to digest my life, or maybe it will help someone else. Perhaps it is simply that for several years I functioned under the false belief that I should keep my injury and my diagnosis a secret. That false belief delayed my ability to recover and it’s time to make some changes. I am not damaged goods. In fact I am a better person having been through these experiences. I still have lots to learn, lots of positive things to share and beautiful family and friends to walk this road with me.

© Gatewood Campbell, June 2011