Just Like Everyone Else
In my life, I’ve often wondered if people will notice the odd things I’m doing and draw a conclusion about me.I think that they must think that I’m weird, or possibly crazy, but there were times when I had to do it anyway. Despite not being alive to gain everyone's approval, I admit that I'm human and have had my moments when I just wanted to belong. I never received a guarantee for that but I had to keep moving forward with the life that I had. The life that taught me for many years was the life living with a neurological disorder that caused daily seizures, my invisible disability. I looked normal overall and could fit in anywhere until a seizure was going to happen, then I wasn't as normal as I first appeared to be.
Living with them happening about 4 times daily, I learned small tricks to distract my brain and delay the inevitable, or I just knew when I must stand out for self-care.
I remember standing in line for twenty minutes to get a package I was excited about and suddenly having to step out and sit down beside the line. I had to quickly reassure people that it was okay for them to take my place and warn them that they would see me blackout because of a seizure. I went unconscious, woke up to a line that moved on and reassured the people around me before getting up to rejoin the back of the line. What a waste of valuable time! I’d think to myself as I imagined how it appeared to the people around me. I couldn't regret my actions because twenty minutes wasted in a line was worth the loss of pain from a head injury for days to come.
My disorder also had a way of getting triggered when I heard monotonous sounds. I learned that I could distract my brain by not getting stressed and concentrating on something else. My best method was to start humming a random song and drumming on different parts of my body. This gave me time to calm myself while looking for a safe place to sit down. Every time I started this method, I thought about how ridiculous I must look but it served me to be more in control of the situation and alerted the people who knew me of what was coming.
On not so great days, when the seizures exceeded the average amount, I felt myself get too serious and it felt depressing. I didn’t like being a frustrated person who was helpless. There was nothing I could do about the frequency of the seizures but I could prevent myself from turning into what I didn't want to be (a bitter grump). These were the times when I'd randomly act childish to not judge the situation. I wanted to pretend that all was well and draw enough patience to see the situation through. I knew that I could do nothing to fight it and that resistance only increased my stress and encouraged more seizures. I had to concentrate on balancing my feelings and not worry about how I appeared in the moment. I could go back to my usual self on a brand new day. I imagined being perceived as childish but it was necessary for me to abandon protocol to remain the person I wanted to be.
Looking back, my actions were out of necessity because I was trying to delay a seizure while I looked for a safe place and sometimes I needed to do something to balance the seriousness of my situation. Whatever the moment brought on, I had to place my safety(seizure prevention or finding somewhere safe to have it) first and consider the reactions it could cause to strangers who didn't know about epilepsy. There were plenty of times when what I wanted or concern for my image had no importance to the care that I required.
My life with seizures taught me that a person in their body living their life is the only one who can sense or know what is going on with them and do something about it. Just as I didn't want to be judged for my weirdness, I know that I shouldn't judge others without knowing their story.
Underneath the individual issues every person deals with, they are a human being making their way and doing the best with what they have. We are all learning and experimenting with alternate ways to be who we are. Everyone encounters times when they must change from what they know to adapt to what works in the moment. Everyone deserves to be loved and respected along the journey.
