Tag Archives: Epilepsy

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Learning to Loosen My Grip

We all do it. Don’t kid yourself. We want to control our lives. We want to be independent. We want to choose our ways, our days, our plans, our whatevers. While taking care of my Grandmother I listened to her talk about how frustrated she was about having to give up the way she liked things to be. I spent her last years helping her as best I could, among other things, make those things she could no longer do for herself as much like she would have done them herself. Some seemed so silly (who really irons cotton t-shirts?) but they were things that made her life feel normal and she too worked hard to continue normal life even when she was weak and frail.

She did not choose to be 98 and still living. In fact, and she would have been the first to tell you she would go to bed during many thunder storms and pray lightning would strike her, only to awaken disappointed in the morning. She would frown when the doctor would tell her nothing was wrong with her. What she did teach me was to learn to loosen my grip on independence and make the best of where you are. She woke up everyday, not always happy to wake up, many days wanting to stay in bed and cover her head with her covers, but she chose differently. She got up and she got dressed. Getting dressed included shoes and lipstick, always. Sometimes she wasn’t dressed until 2pm but she got dressed. And her bed was always made. Always. Except for one day, the week before she moved to healthcare and that was the week I knew for sure she had taken a turn and would be moving soon. After that she had round the clock help and bed was made every day, to her specifications, even if that meant it had to be made several times.

I am not here by my choice but I am following what my Grandmother taught me the best I can. Everyday I get up, make up the bed and I get dressed. I can’t say I always wear lipstick. Chapstick…maybe. I am trying my best not to be overcome by the fears that taunt me. I am trying my best not to be overcome by the embarrassment of having to ask for help or even worse the embarrassment of being turned down when I ask for help. I am trying my best not to be overcome by the embarrassment of having strangers stare. I am trying my best not to be overcome by confusion. I am trying my best not to be hard on myself. I am trying my best to learn to gently loosen my grip on my own independence and understand that it really never was mine to own anyway.

I am grateful for all of you that are being so patient with me while I try, because having been on the other side, I understand that it takes great effort from you as well. So, I thank you.

© Copyright Gatewood Campbell, March 2014

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The Four Letter F Word

F E A R. It can absolutely paralyze you. It has paralyzed me.

I know we should not fear. I know Jesus teaches us to live by faith. Everyone tells me not to be afraid. But it is so easy to tell someone not to be afraid. I’m afraid that a brief moment of confusion is an oncoming seizure. I’m afraid that the loud echo of a stereo is actually an oncoming seizure. I’m afraid that the persistent beeping of registers in a store is actually a sound being created in my head indicating a seizure. I’m afraid that if something catches my eye, there might not be anything there and my world is about to shake violently. I’m afraid that when things suddenly slow down they are about to speed up very quickly. I’m afraid of another concussion. I’m afraid that people will be afraid to be around me because they will fear I will have a seizure in front of them. I’m afraid of having a seizure in public. I’m afraid parents won’t want their kids to come play with my children because they fear I can’t adequately supervise them.  I’m afraid that maybe I can’t adequately supervise them. I’m afraid the seizures will never stop. I’m afraid of going to sleep one night and being taken by epilepsy.

I am trying so hard. I know I am fortunate. I know it could be so much worse. I know there are so many other people dealing with far worse situations. I know I should be focusing on the things that are good and not the things to fear. I know what Jesus has taught us to have faith and not to fear. I hear what each of you are telling me. I’m trying, I really am. But this F E A R, right now it is just paralyzing.

© Copyright Gatewood Campbell, February 2014

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How Did I Get Here?

I blinked. My world shook. I looked into the eyes of a stranger and asked “How did I get here?”

Epilepsy. It came into my life from a fall nearly 9 years ago. One might think I would be used to it by now. Not so. I’m thankful for the quieter years when my seizures were, for the most part, controlled by medication. I lived in a world shaded from the truth that epilepsy changes your life forever. I’m glad I had those years in the shade, but I have walked out into the sun now and I do not like it.

In the last two months I have had two grand mal seizures. Both times I was alone on a sidewalk. The first time I was caught off guard and had no time to react and have the scars to prove it. The second time I had about 10 seconds to know I was in bad trouble. All I could think was SAVE THE HEAD and I moved to the grass and dropped to my hands and knees. I never want a staple gun smashed into my head ever again. I successfully saved my head. But I found myself looking into the eyes of a stranger once again and asking “How did I get here?” Again, another gentle voice told me I had a seizure. Best I recall I thought something like, oh @&^%$#. I don’t remember much after that. It is weird that each time I have a brief memory with an EMT and then I lose an hour or so and pick back up when things are calmer and I’m settled in the ER. Settled in the ER, now that is an oxymoron if ever there was one!

It is all overwhelming. I just didn’t realize how my life would change. I didn’t realize how the lives of my family would have to change so much. I don’t know how to adjust so quickly. I want to go back into the happy shade of controlled seizures. I don’t like the sunny side of seizures at all. After the first seizure I was counting down until I could drive again. I just thought it was a fluke and I didn’t expect another one. After the second seizure, I realized it was more than a fluke. Now we are dealing with more than just small breakthrough seizures where I maintain consciousness. The driving clock reset yet again. I quit counting down. It feels so far in the distance.  I don’t worry about driving. I just want to be seizure free. You see, there is no cure for epilepsy. There is coping, by means of medication or surgery, but there is no cure. People with seizures, people with epilepsy; we face the dreaded “pre-existing condition” and the grind of brain changing chemicals everyday. This is my life, and 9 years later, I just NOW realize it.

I am thankful, don’t misunderstand. I am blessed in ways that can not be measured, but I live under some element of fear everyday. I have to think through where I am going and “what if?” I am just like everyone else and wish we knew that everything would be ok. That isn’t reality though. So I have to plan ahead. My husband needs to work nearby just in case that number he doesn’t know shows up on his cell phone and the caller says “Mr. Campbell?” He knows without the caller saying anything else this is not Publisher’s Clearing House calling. I don’t like that he gets those calls. I don’t like that when my son comes home and I’m not here, he instinctively texts us asking where we are. I don’t like that fear can transcend generations. I have watched the fear of my seizures pass through four generations of my family now. The fear makes me mad. Then I circle back around to being mad at epilepsy all over again. I see how people who don’t know much about epilepsy talk about it and it upsets me. I want to be understood. I want to educate them, but sometimes I get tired of trying to teach people to be accepting. Sometimes it is just easier to be quiet and hide.

I don’t know how I got here. I don’t know why I’m here. I don’t know when it will be better. I know I am not supposed to be afraid, but I am. I know I am not supposed to worry, but I do. I know I am not supposed to ask why, but I do. Normal is such an abstract idea, I am not looking for normal. Furthermore I have had too many concussions to remember what our normal was. I just want to feel safe. I want to blink and for my world to never shake again. I want that for me and I want that for our family. Is that so wrong?

© Copyright Gatewood Campbell, January 2014

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Gripped by God, not Epilepsy

When a storm comes our first response is fear and panic. Over time we can digest the situation. No, it may not change the situation but it may change our ability to deal with it effectively.

Today I was reminded that the only thing that has the power to grip me is God. Epilepsy will not grip me. Epilepsy will not hold me in a corner surrounded by fear. I will not let epilepsy win. God was, is and will always be in control as He grips me and points me in the direction He has chosen.

The sun came out this morning and I decided it was time to lace up my running shoes and prove to myself that God will protect me. I ran. It wasn’t my fastest but it wasn’t my slowest. I didn’t care. I just needed the reminder that my hope is in God and He will carry me.

I am who I am because of the I AM. Nuff said.

© Copyright Gatewood Campbell, January 2014

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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