Tag Archives: coping

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Ten. This is Not a Celebration.

Ten years later…This is not a celebration. I still can’t help but wonder how things might have been different. This month, ten years ago I made that forgettable and yes still forgotten trip into you know where. Oh but if I could only remember what happened. The roller coaster began and I never even had to go to Carowinds for the wild ride. There is no anniversary celebration for this, nor a party, nor presents. I just know this date. There is a lot a can’t remember…but this…this I remember. Those blasted trash cans!

My husband is celebrating 20 years at Carolina CAT this month! Remarkable! WE ARE SO PROUD! He came home this week with his employee recognition award for his desk and a catalog selection of gifts from which to choose. I will admit, I was jealous, yes I was jealous. I started working at my job that same year. I thought I would work there forever. My heart was, and remains dedicated to the work that is being done at our church. Somehow it still seems surreal that I had to walk away.

Ten years, now what?

The good. I have been amused by the ramblings on Facebook this week during the ice storm as people have rushed to the store to prepare to be at home. I didn’t have to make the mad dash. Justin took me to the store last Friday and I have learned  how to grocery shop in bulk so that when I get a ride to the store I can get enough to stock up for more than a week. We didn’t have to fight any crowds for bread or milk! We were already prepared! I was also amused by everyone with cabin fever after one or two days of not being about to get out of the house. OK people, two days of not being able to leave your house independently is not the worst thing in the world. Oh my goodness, this was the funniest of all things to me. What made me the happiest was that not one single time did my children ask to go anywhere. They were fine being at home and finding things to do because they have become accustomed to it. They don’t need to go places and be entertained.

The bad. There is no cure for epilepsy so we are always the patient, never the survivor. Always being treated, always popping pills, reading up on the latest treatments, searching for something new. Just this week I read that the medicine I was being treated with for years, after going generic has been found to cause seizures. INTERESTING! Yep, that was the generic medicine I was taking when I started having seizures again a year and a half ago. Well if my insurance would have covered the brand name drug maybe I would not have been house bound for the last 16 months and would not have turned into a dope head on this new drug. This cycle is like that old ride at Carowinds, the one that spun you round and round until you were stuck to the walls and then the ground dropped out from beneath your feet. It leaves you not knowing how to stand again. Everything as you know it is confusing. The simplest of things on one day can leave you lost and confused, and the next day you can breeze through it without thought.

I don’t know why this path was chosen for our family. We try to educate along the way. I try to pick up the pieces when I can. Some days I can’t. This is a hard field to plow. Much of it I cannot control. The medicine I take screws with my brain in ways I do not understand and I don’t even realize. Frankly it drives my family crazy, and probably everyone who is in a checkout line behind me as well. After all these years it hasn’t gotten any easier to tell people that I have epilepsy. It hasn’t gotten any easier to explain. I worry for my children; that they will be the ones at home with me when I seize, and see me, then having to call their dad and tell them what has happened. I worry that they will come home from school and find me collapsed at the bottom of the steps. I worry that I will seize while walking the dogs and the dogs will get hit by cars. I worry that I will seize on a city bus surrounded by strangers. I worry that I will seize on a sidewalk again and wonder who might find me. I choose my walks carefully just in case. Johnny constantly reminds me that worry is a sin. I remind myself that I shouldn’t be stupid either. I have epilepsy and I have to be cautious. I’m also a mom and I want to be able to care for my kids the way I used to and giving that up has been one of the hardest things to surrender. Normal is overrated right? Please say yes.

Can I just ask you this? The next time you are somewhere and perhaps annoyed because someone seems confused and they are causing you to be slowed down, just take a few deep breaths. Grab a magazine and read some smut article to pass the time, reread your grocery list to be sure you got everything, smile and tell the person to take their time or relax and enjoy the extra few moments in your day. Trust me, you just gifted someone a priceless gift.

Ten years later. What now? I guess eleven….

Copyright © Gatewood Campbell, February 2015

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Dreams, Moving Sidewalks and TV before Bed

The dream came back to me again last night, the details always a bit varied, but the theme seems familiar.

I was in line waiting in a bathroom, likely place for me since I always have a bottle of water in hand. I was strangely dressed in some dance costume. Blaming that on the Dance Moms episode I watched before I went to sleep. We were on a train and the train was not on tracks, but on water, thus the train itself was going nowhere.

In the bathroom I was on a moving sidewalk that moved against me making it nearly impossible to get to the bathrooms. I was the only person that was on the moving sidewalk. Everyone else was on solid ground, moving along like normal. As I fought against the moving sidewalk my costume kept getting caught in everything around me and I was constantly yanking the costume out as it slowly began to tear and shred. People in front kept calling my name and begging me to run faster on the sidewalk but I was getting nowhere! It was a circus! I can see it still now. On the sidewalk every few feet as I moved as fast as I could with a full bladder while grabbing this crazy costume at my sides, beneath my feet were the words ‘My Epilepsy’.

I kept trying to stomp on those words as they would pass and then the moving sidewalk would flood with water and push me against the wall of the bathroom and I would have to start my trek for the bathroom all over again. Over and over again this went. The longer this went the madder I got. I watched people walk past while I fought this moving sidewalk stomping on the word epilepsy each time. I would eventually make progress. Then it would flood and fling me against the wall. There I would gather myself in this hideous shredded costume and begin to battle the moving sidewalk. I never got there. My 5:30 alarm went off first.

I think about this dream and wonder the reality of it all….except the costume…that was really bad.

Copyright © Gatewood Campbell, September 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