With a traumatic childhood and multiple disabilities, Ken still fights for a better life and to help those around him.
This story is part of the Epilepsy Blog Relay™.
Because of my upbringing, my epilepsy went untreated for many years. I was often told I was “doing it for attention,” after a grand mal seizure. I was continuously misdiagnosed things like bipolar disorder, ADHD, and ADD and was prescribed medications that didn’t help my situation. It felt like no one wanted to take the time to help or listen to me.
The seizures did go away for a few years, so I thought I outgrew them. But then my epilepsy came back when I was in college.
Needing Multiple Brain Surgeries
Once I was finally diagnosed, my doctors performed two brain surgeries in an effort to manage my seizures. I will undergo a third one soon. My first surgery was a temporal lobectomy on my left side, which affected my memory, speech, and spelling. I went seizure-free for six months, but then my seizures came back. Then the only surgery I could get was having the RNS Neuropace put in. I went seizure-free for five months, but then they came back again and it appears my seizures now occur in the frontal lobe, so now I’m preparing for another surgery.
I feel like people don’t understand me since my temporal lobectomy surgery. My brain is not the same, so I’m not good at explaining things anymore, and my short-term memory is a struggle. I use to be a pro at cooking, typing, and fixing electronics like computers, smartphones, and TVs. I could speak Spanish and German, but I can’t as well anymore.
The Challenges of Daily Living
My seizures are potentially a result from physical abuse I experienced as a child. I started having seizures when was one month old and was then abandoned at 7 years old. When I was 10 years old, my adoptive dad tried to get me help for my seizures. Because of everything I went through as a child, I now have PTSD and BPD (Borderline Personality Disorder) and seizures. I also have heart issues from my many seizures. I don’t get auras, so my seizures just happen. I have 2 to 3 grand mal seizures a day and about 8 complex partial seizures each week.
My back is severely damaged from the constant seizures and as a result, I’ll need spinal fusion surgery, and I will need to relearn how to use my back. I will have part of my back removed and the nerves in it and in place of them they will drill rods, needles, and screws in my back.
My heart issues and the return of seizures deeply affects my mental health. I cry and sometimes feel suicidal. My PTSD gets worse after a nocturnal seizure.
I went to a culinary arts school for five years, and I also love computer engineering, like fixing electronics like TVs, phones, computers, and tablets. But because of my seizures, I can hardly type anymore or write things because I constantly shake. I’m limited with support and friends since losing people due to not understanding my health problems.
Regardless how much my health issues limit me, I still manage to not let my epilepsy run my life. People from the Epilepsy Foundation have encouraged me, saying they are inspired by my resiliency and my compassion. My hope is that if others read my story, it would better help people understand me and my health problems.
I still write poems and music, and also sing. I still do what I can for others, like fix their computers, TVs, phones, and game systems. And I also clean for people. That stuff is my happiness and my moments to help me know I matter to some people and that I do have a purpose.
My doctors have helped give me hope in my future. They told me I’m a very strong and gifted person with an absolutely amazing singing voice and have a gift for writing poems, playing the guitar and flute. They assured me that they all will get to the bottom of my Ehlers-Danlos Syndrome and my ongoing seizures.
Finding and Creating Epilepsy Community
With everything I have gone through in my life and still going through, it’s been my goal to try and help others. I want to do what I can to help make people seizure free and make a difference in peoples lives. I refuse to let people with epilepsy go through what I did when I was a child.
I hope this helps everyone understand me and better get to know me. I’ve been told that my story has inspired and touched a lot of lives. Thank you so much for taking the time to read my epilepsy journey story.
Don’t miss tomorrow’s story in the Epilepsy Blog Relay™.