"It’s not like your disability impacts your life or anything. All you need is your special lights."
Okay so when I heard this, I was actually shocked by how offended and hurt and I was. Why would I be sad that somebody doesn’t think I’m really disabled? That’s a good thing. It’s what I’ve been striving for since I was diagnosed with epilepsy at age 6. But it hurt. It really hurt. And I started to cry.
I make light of my epilepsy all the time. I make jokes about seizures so people feel comfortable around me. It also can just be kind of funny sometimes. I mean, my epilepsy has been under good control for a while now and I haven’t had a seizure since 12th grade. Still, I have to stay away from strobe lights and certain foods, but otherwise I’m pretty good. I can drive, I can swim, and I’m not even on medicine anymore. But that wasn’t always the case for me.
I was diagnosed with epilepsy after I had a series of splitting headaches and bizarre episodes where I would say and do nonsensical things. My five-year-old body would lie in my father’s arms screaming because there wasn’t anything else I could do. And it would last for hours. Sometimes I would start vomiting. Other times I would just want to die.
One of the worst parts of my epilepsy was that any excitement would lead me to have seizures. There went every holiday, birthday, and special event. These seizures completely incapacitated me and stole typical moments of sheer delight that every child deserves.
When I was six I started on meds. And they’re not just any type of medication. For epilepsy, you take heavy, heavy doses of mood stabilizers used to treat bipolar disorder. They slow your synapse firing down to the point where you feel like you’re barely alive. I was taking 13 pills a day. My IQ dropped 23 points. I was moved down to all the lower classes and was now dumb at school. It was a weird feeling but not nearly as weird as the overwhelming obsessive compulsive disorder I developed.
At 6, 7, and 8 I was a severe germaphobe, among other things. I literally thought that my parents were going to contaminate my baby sister and me. There’s no feeling more terrifying than when a six-year-old is convinced that her parents are going to kill her and her family.
Then there were the socially isolating factors of being disabled. I couldn’t go to sleepovers and could no longer participate in my favorite sport, swimming, without having a lifeguard or parent permanently watching me for every two hour practice. I had five of those every week. That meant I really didn’t get to participate much in the thing I thought I was best at.
Oh, and I was late for school every day in third grade. The meds disrupted my sleep so badly that I would often just lie there for 3 and 4 hours crying about how I couldn’t fall to sleep even though I was really tired. My mom was told she had to let me sleep in if possible since lack of sleep also triggered seizures in me.
Everyday I’d walk into the classroom embarrassed that I was the center of attention again. The kids would say, “Oh my gosh, you’re late every single day! Why can’t your mom bring you to school on time?” I would get angry and tell them I wasn’t late every day, but really they were right. I was different and there wasn’t anything I could do about it.
Eventually after several years my epilepsy got under pretty good control. I have the occasional scare now and then. A seizure here or there. And there’s always the fear of SUDEP (Sudden Unexplained Death in Epilepsy Patients). One percent of epilepsy patients die from it every year. But for the most part I’m pretty normal now. I don’t have very many limitations.
So that’s why I was shocked at my upset with that statement. About my disability not being very real. But I realized that by having someone say that to me, I felt that my struggle was completely erased. I felt like my experiences were suddenly invalidated and that my disability didn’t matter anymore. The pain and suffering I have endured has never left me and continues to shape the way I see the world. It’s not gone even though most of the symptoms are.
Making assumptions about my conditions and experiences feels both damaging and pretty unnecessary to me. Maybe she could have asked if epilepsy really impacted my life, in which case I would have gotten the chance to explain. It’s not that I’m not comfortable talking about it. I am. I’d just rather people ask me for information about me instead of other people making assumptions.
Even though lots of people with disabilities spend their lives feeling ashamed and trying to hide their conditions, disabilities are identities. By erasing or making assumptions about a disability, you’re effectively erasing a part of who they are.
That is all.