My journey began when I was 16 years old and officially diagnosed with epilepsy. In the beginning, I was in denial even though I had seizures every night and did not want to take my medication. All I could say was, “I don’t have epilepsy,” and “this isn’t me.” It was not until I was about 18 years old that I finally started to realize this was me.
Epilepsy has caused my life to have so many setbacks. College ended up not working out because of my memory loss. I missed out on many job opportunities. Everyone was scared of me, which made me scared of myself.
It’s hard to imagine all the pain everyone I love goes through seeing me have tonic-clonic seizures. It looks like my body is falling apart, and there is nothing they can do besides keep me safe and comfortable. Nothing can stop the seizure but my own brain. I am more at risk for Sudden Unexpected Death in Epilepsy (SUDEP) because most of my seizures are at night. It’s scary for me too.
Living with my epilepsy now is harder than it has ever been for me before. My seizures have increased, and I haven’t been able to see a neurologist due to not having health insurance. We need Medicaid in every state. I am currently fighting for disability because my seizures have caused me to fracture my shoulder multiple times. It’s been three years and two surgeries, and I am still not healed. I also have severe arthritis and multiple sclerosis.
Spreading awareness and sharing my story are how I can benefit the world. It is hard to be trapped in a body you wish wasn’t yours. It is hard to be trapped in a mind you can’t escape. Life with epilepsy can be complicated, draining, painful, and scary. I know now that I am a warrior! My seizures are part of me, and I do not need to change for anyone.
Through the seizures and the pain, I know my life matters, and that is why I will continue to fight this battle for as long as it takes. I believe in myself regardless of any judgment. I love myself for me. I will not let my disability hold me back. I will win this battle!