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