21 Weeks Feels Like Forever

It has been 5 weeks since my seizure. It seems like yesterday and it seems like a lifetime ago all at the same time. The Christmas holidays helped keep me busy and speed the days along. There were always gifts to buy, gifts to wrap, decorations to be hung (or not) and places to go. Now I have to figure out how to settle in and get through the next 21 weeks of unknown.

At night, I lie in bed and try to exhale as much air as I can to try and relax my stiff body. I’ve been operating on the holiday high, get ‘r done philosophy for over a month now and I realize it is time to breathe. The last month or so have felt like I am on the Spongebob ride at Carowinds. You know, you walk in from the sweltering heat to the air conditioned theater, desperately inhaling every cool breath of (recirculated, dirty, infection infused) air. You sit down and rest your weary legs and hope it will take a couple extra moments for the attendants to double check the locks. You realize your body needed to sit and cool down more than you knew. Just as you take a deep breath and begin to relax and take in the surroundings, the lights go out and the chair jolts forward as the ride begins. And before you can grab the hand grips you are off again, into the land of the uncontrollable. You are forced to “enjoy” the ride but you have no control over it. It throws you back as if fooling you to think the chaos is over. Then BAM, another jolt forward and your emotions are on the edge again. BAM, one jolt back, lights come on and the attendant says please exit to the left. You inhale and rush out with the crowd, forced to move on to the next. The ride happens so fast you barely knew what just happened!

For five weeks I have been busy moving on to the next, jolted this way and that way, trying to keep my eyes peeled for the next unexpected detour. Everything happened so fast, I am only now realizing what happened. The rush is now over and the possibility of another grand mal seizure has overwhelmed me. It is frightening. I realize that my diagnosis is real, and much like many other diseases, it can come out of nowhere and change your trajectory instantly. Sometimes I feel like I am on the Spongebob ride and my seat belt didn’t work and I’m tossed midair into the dark theatre. I’m only 40. It is scary to look into the future and think it is possible for this to strike again. I very very strongly do not like my meds, but I realize they are not optional. I very very strongly do not like being “watched”, but I realize it is for the best. It is so hard for me to look at the calendar and visualize the next 21 weeks feeling so dependent on others. I look around the house and think I could paint this, clean that or reorganize that. You don’t realize how dependent you are on transportation to accomplish almost anything until you lose it. Everything, and I mean everything has to be planned in advance. Going to the gym, haircuts, doctor appointments, shopping, music lessons, Goodwill drop offs, after school activities, tutoring, church commitments, sports….the list goes on and on. It overwhelms me.

My Grandmother used to quote me a lot. Now, I know this will shock many of you. When I was very little I was at her house and she tried to help me with something. With my big blue eyes and dimpled face I looked at her and said “no, I do it my own self.” Shocking, I know! I could barely talk but I always knew, and so did everyone else, I was one to do it my own self. Now that is gone. That ability is gone but the drive remains. I feel like I have been jolted the same way the Spongebob ride stops. Just when you get going you look around and realize so much is different, and you wonder how you got here.

This is hard. This is just hard and I so very much want to do it my own self.

© Copyright Gatewood Campbell, January 2014

We Are All in This Together

I have been overwhelmed by the love and support we have received since my seizure. I cannot begin to describe how my heart has swelled by your outpouring of words, deeds and more importantly honest love for our family. Thank you.

A little over eight years ago I had my first grand mal seizure. We were all surprised, desperate to learn, desperate to recover and convinced that we should keep my diagnosis to ourselves. That was wrong, but the reasons were all legitimate. People are afraid of epilepsy. Not too long ago people suffering from seizures were institutionalized, called unproductive citizens or presumed to be demon possessed. Can you imagine? I could be living and working alongside all of you and then after a seizure be forced to leave my family and spend the rest of my life over medicated and away from my family! Much like cancer, epilepsy does not discriminate. I could bore you with statistics proving the prevalence of epilepsy, but that is not my point.

I am almost embarrassed by your comments of support and love. I am not working to overcome anything more difficult than the things all of you overcome every single day. As a matter of fact, almost everyday I tell God I am thankful He gave me epilepsy and not some of the heart-wrenching difficulties that people I know face each day. YOU are overcomers! YOU are an inspiration! YOU are amazing! YOU teach me to see the sun through the shade. YOU teach me to persevere and get out of bed on days when I would rather pull up the covers until the kids get home. YOU teach me that it is right to be different, because we are all different. Life would be terribly boring if we were all the same. We must never be ashamed to be exactly the person God created. He formed us in His image. God is perfect. So, as far as I am concerned God created us all in the perfect image He desired.

Your love keeps me pressing on. Your love continues to restore my faith that humankind is good. Your love shows me we will get through the next 23 1/2 weeks and that we will be stronger. Your love proves that when we can’t walk, we are carried; by prayers, by actions and by unending support in ways we did not know we needed. Thank you for inspiring me by fighting your own battles. Thank you for teaching me that strength lies in being honest about who we are and by being unashamed of whatever “faults” we may think exist.

You are amazing, inspirational, determined and down right fantastic. Thank YOU for teaching me how to face fear and stomp on it with optimism. You are my heroes and I am eternally thankful for the stories you tell through the lives you live.

© Copyright Gatewood Campbell, December 2013

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