Shhh, don't tell: if they know they may not like you
Epilepsy is nothing to feel ashamed of. It's not a secret anymore.
The seven year old in me wants to blurt out I HAVE EPILEPSY! So there! If you don’t like me, that’s your loss. But, I am not supposed to tell you that. I am just supposed to smile and look pretty.
When I was diagnosed with epilepsy at five years old my parents said “Don’t tell anyone because they don’t need to know. They may not like you.” I was also told, “everyone has something and I am so lucky my “something” is invisible because others have wheelchairs or crutches or even back braces like one of my friends did.
I didn’t think I was lucky with epilepsy being invisible. I looked pretty on the outside and felt foggy and disconnected from myself on the inside. The medicine I was given helped control the seizures but sometimes I couldn’t think straight. I had a difficult time gathering my thoughts and school was harder for me.
Society was not kind or gentle in the early 1970’s. It was even harder in the 1950’s when my mother’s sister was diagnosed. Perception is our reality and my mothers perception of epilepsy was something bad or scary or shameful. My dad's uncle was diagnosed around the same time as my mother’s sister. He also had a similar perception.
The great thing about perception is it can change over time. The more aware we become, the less judgment we hold and the more we are able to see situations from a clearer lens rather than one that is obscured.
I heard “try harder” “do better” and “she is just retarded”. This word makes me bristle. Everytime I hear that word and of course it is less and less nowadays, but it still makes me bristle.
Because I was told ‘shh, don’t tell”, I felt like there was a shameful part of me I needed to hide. I grew up feeling disconnected to this huge part of who I was. Sometimes it controlled me (seizures) and other times I felt in control of it (meditation helped!). The word “epilepsy” felt dirty and shameful nonetheless. Each time I said it to someone shame and sadness were heard. My normal smile turned into a frown and my gaze shifted away from the person I would be talking to.
Why did I feel ashamed most of my life living with epilepsy? Because it was supposed to be a secret. Secrets can be toxic. This was only one of my secrets (and there are many). Secrets create more stress, inhibit sleep and contribute to feelings of mental unwellness. All of this is contraindicated for the health and well being of someone with epilepsy. I felt like not only was something wrong with me, but I was wrong and broken.
I felt so alone. But then, a teacher whom I loved shared a list with me of famous people with epilepsy. I lost that list long ago, but found a similar one here. When she told me Socrates and Julius Caesar were on the list I didn’t feel so alone. I hope you don’t feel alone too.
Here are some famous people with epilepsy…and that’s no secret!
Sir Elton John, Musician
John Roberts, Chief Justice
Agatha Christie, author
Socrates, Philosopher
Vincent Van Gogh, Artist
Prince, Musician
Pyotr Ilyich Tchaichovsky, Composer
When my mom and dad were each diagnosed with cancer much later in life, they were viewed as strong and courageous. There was support that showed up to help with this and that. I didn’t have that opportunity, because the piece of me that was affected was my brain. My brain was hidden. My diagnosis of epilepsy held so many misconceptions back then, which were all shameful. I was viewed as “brain damaged and defective.” The more I heard this, the more I began to feel ashamed of the invisible part of me that was a very big part of me.
The parts of life that felt really challenging to me were
Processing information
Reading
Math
Expressing my feelings
School work is something parents often take pride in with their children. I could not give this to my parents. No one gave credit or credence to the amount of medication I was on that fogged my brain. I tried so hard to focus. I tried so hard to learn. The medicine was necessary to stop all of the seizures. I didn’t understand any of that then. I only felt “dumb”, “stupid”.
I had a reading tutor in first grade. I loved her. She was a remarkable human and I remember her telling me “you will succeed”, “you can read any book you want” and “I believe in you.” It only takes one person to truly see you the way you need to be seen.
I wanted so badly to learn.
My doctor recommended that I play scrabble. He said it would help build my vocabulary and help me understand patterns. I had a very difficult time with grids. My mother and I began playing scrabble so she could help me learn new words. We never kept score. It was just for fun. I slept with a dictionary next to my bed so I could learn a new word and show her. I wanted her to feel proud of me. Every night I read a new word and would practice the following day. I felt proud of the vocabulary I was building and my mother beamed knowing she was helping me through this. When we played scrabble, I felt her love. I felt so happy and connected to her during these times.
Often my mother took care of me, reminding me to take my medicine. I think she was afraid one day I would forget and then I could die. At school I was called to the nurse on the loudspeaker “Will Michelle please come to the nurse to take her medicine”. Children mocked me.
As I grew older kids asked what medicine I took and asked if they could try it. Of course I said no. Indignantly I looked at them and said “This is my medicine that saves my life. I can’t believe you would ask that!” I became protective of the part of me I didn’t feel comfortable with. Instead of wearing a cloak of shame, I blanketed myself in love and protection. I learned to say NO to people who didn’t see or value the whole me.
Then I moved on to someone who did and would become a real friend. My teenage years were difficult. I wanted to drink like everyone else did and I wished I could have my drivers license too. I waited until I was eighteen to get my license. There were too many times I tried to be like everyone else, drinking too much and having a seizure. I learned to slow down and even stop. I learned it was more important to be healthy so I could feel happy than to drink for a night and lose myself.
Epilepsy became a protective factor in my life. Because I learned to protect this part of me, I shied away from drugs and the partying crowd. If I have half a glass of wine that is a lot. I have no need to lose control because I know too well what that feels like.
It took me a long time to accept this part of myself. Eventually I outgrew my mother saying “did you take your pills?”. I was divorced then so it took us a little while to shift that dynamic. I know she loved me and it was her way of staying involved.
My mother is no longer here. I can’t remember the last time she and I played scrabble. But, I do know that she raised a daughter who is kind, loving, self-aware and smart. I am someone she can really be proud of. I am grateful she helped me in the way she could. Having epilepsy is nothing scary to hide—anymore.
Today, I am more than my epilepsy. And, epilepsy is part of me.
I am Vice President Membership of my Toastmasters Club
I am a Life Purpose Coach
I am a mental health and wellness advocated
I am a disability advocate
The secrets from the past no longer hold the same negative energy because now I am using this space to share my experience so others can Learn, Grow and Thrive.
Please leave a comment and let me know how you make a difference in the world. I want to know.
Very powerful. I remember when an elderly, hard of hearing, gentleman visited our Toastmasters club and you made sure he was included in the meeting. Not surprised.
Al
So much wisdom to treasure in your post.
Loved this: “The great thing about perception is it can change over time. The more aware we become, the less judgment we hold and the more we are able to see situations from a clearer lens rather than one that is obscured.”
I enjoyed learning how your mother was there for you and how you learned to set boundaries and care for yourself.
Kudos for taking your challenge and turning it into a lifetime of learning and of helping others. You make a difference in this world.