Sticks and stones may break my bones but words will never hurt me. Not so. Yesterday a lady said three little words to me and I was floored. It wasn’t until the middle of the night that I realized why I was so overcome with emotion that three words had put me on a roller coaster that had no brakes.
After my diagnosis, once we realized what we were dealing with, brain injury, epilepsy etc, I started speech therapy with my AMAZING therapist Heather. I worked hard on vocalizing what I needed. Communication was hard so we did a lot of role playing and I practiced; 1. Understanding what I needed to be successful in daily life and 2. Vocalizing that to those around me. When I re-entered the real and working world after my diagnosis and therapy I felt stronger and I started using these strategies. For the most part I was successful. If people couldn’t understand me they worked with me to try and understand and were gracious about it. We managed to make things work and I was fairly comfortable with people knowing the status of my health, until I found out that epilepsy wasn’t so acceptable and it shut me down.
Yesterday, I needed something from someone and explained it was because I had epilepsy and she said “I don’t care.” Now there is a whole background to the story, and she has her reasoning, which is fine. (She is still wrong, but whatever, this is my blog, so my point of view). Here is my point. What those three words swelled up inside me was like a tornado of pain that I did not even know was inside me. You see, way back, when I was open and honest and told people what I needed, a couple people said those same exact three words to me. Somehow I internalized that epilepsy wasn’t ok with the rest of the world.
Those three words silenced me for years about my epilepsy. I held it a closely guarded secret, thinking people would think I was crazy or delusional. I bought into all the ridiculous stigmas that still exist today about epilepsy and I told no one about that “thing” as my grandmother called it. You see, in her generation people with epilepsy were put in institutions. It wasn’t until a friend encouraged me to start writing about it that people even close to me knew. The words of a few ill-informed people had completely rocked my identity. Yesterday when I heard “I don’t care” I was disgusted. In the middle of the night I realized it was because I felt like I was sent directly back to those moments when I expressed my needs and those people said the same words to me and I stared back in confusion. The pain, frustration, misunderstanding, helplessness, anger, sadness, loneliness, it all came flooding back in an overwhelming sea of horrible memories that took over me.
I don’t care what anyone else says, the needs of others DOES matter. PEOPLE MATTER. I am so so thankful that my village of support that is around me now knows the value of understanding, love and kindness. I am so thankful I don’t have to explain myself to those around me and that you love me for who I am, even when I am not sure who that is, or who that will be, depending on the next medicine change, Lord help us all.
Copyright © Gatewood Campbell, October 2014
Embracing Change 
Oh Gatewood – this made me simultaneously sad/angry/in awe that you didn’t let her thoughtlessness keep you down for long. If only people took a second, just a second to think before they speak – maybe civility and kindness would sneak in before snide stupidity. There’s my own anger sneaking in! 🙂
Bravo to you for being a bright light in the world!!
Hugs
Pam
It has been a real gift to read that I am not alone. I recently had this experience with my in law and realized that people are afraid to care for us because they can’t handle what we handle. It is important to remember what we want to work for in our lives. It helps to know that we don’t want to follow their ways. If others cannot be accepting, we have to know why we are good, even with our epilepsy. Keep looking out for yourself, you are great !!