For all the world to see… or not see.
The time has not yet come for a complete history of people with epilepsy. For a complete history to be told, those of us who live with epilepsy must create our history. We must write and gather our stories. We must research the topics that we believe are relevant. We must understand what it means to work and live in communities that work against us or ignore us. We must include our stories, because others are working to excluding us.
Those of us who live and die with epilepsy, must investigate what it means to those of us who live and die with epilepsy. We must learn what it means to tell our stories to each other. We must resist the temptation to make our stories palatable for others, until we learn how to tell our stories to each other. How do we tell our stories for each other?
For the last few weeks, I have been trying to write a simple post for November’s Epilepsy Awareness Month. The simple lesson: telling our stories is not simple. It isn’t even required. I was a featured blogger on the old Epilepsy Foundation of America page. I was the only featured blogger with epilepsy. My blog was called, “If I Talk About It, Will You Listen?” I also recorded a video, “I Am A Person Who…” that I watched again recently. This was probably my best example of talking to people with epilepsy.
Talking about epilepsy is like living in Oz. There is something unreal and dreamlike. Those of us with epilepsy are expected to remain invisible AND encouraged to “talk about it.” We are never the experts, even about our own lives. We are studied and researched by them. We need to conduct our own research. We are recruited for medical trials, but we are not recruited by medical companies for employment opportunities. This creates dissonance. It causes stress. We live with stressful dissonance that is caused by others. Then we are told to reduce our stress… perhaps with a pill from a pharmaceutical company.
I am often inspired by authors, musicians and poets. For this post, I am especially indebted to the African American historian W.E.B. Du Bois. He introduced the concept of “double consciousness.” He also wrote about the lack of an African American history. You can read more in my notes section here. His history could provide a framework for people with epilepsy.
Instead of including the rest of my blog post here, I will refer you to my notes section and commit to writing more in the future. You can also view my other writing about epilepsy.
Six years ago next month, I visited the Epilepsy Foundation Headquarters. Here are some notes from that meeting. Perhaps next month, I will write another post. Even though I wanted more people to listen, I am grateful for much. I am grateful that I am alive. I am grateful that people have helped me. I am grateful that I live in the United States in 2015. I still want more progress.
I had prepared to share personal stories about job discrimination, but for now it is enough to mention that we need to discuss how discrimination works in the workplace. We need to understand underemployment. We need to share the personal struggles. Underemployment is a complex psychological issue. It’s not just financial.
We are diverse, but when diversity matters; we don’t matter. When quality counts. we don’t. We need to start counting for each other? How are we measured? How do we identify?
We are not required to talk about it, but could we have helped Sandra Bland? Have you, as a person with epilepsy, listened to the video? Where were we? Where will we be the next time?