I am 20 years old and I live in Dublin California. I had brain surgery when I was 8 years old at Barrow Institute in Phoenix AZ. I had my hypothalamic hamartoma removed that time.
The last seizure I had was on the way to the airport to go to Phoenix for my surgery. I missed my first airplane ride. I went to the Barrow Institute – just days before my 9th birthday. I was scared the night before and thought I was going to be like a mannequin. My brother made a video. My mom said I was very brave. When I woke up I asked for McDonald’s. In recovery I watched Toy Story 2 over and over again. I remember Dr. Rekate did my surgery – I remember the nurses and Maggie Varland Bobrowitz. I go back to Phoenix every couple years because I think it’s important to follow up and see side effects. The seizures were stopped by the surgery. I wouldn’t have been able to drive or do lots of things if I still had them. Although there are life-long side effects, I would recommend the surgery.
I don’t know what triggered my seizures. They came at different times. My family didn’t know I had epilepsy until I was about 4 or 5 years old. They only saw symptoms such as laughing, seeing things that aren’t there, passing out, night walking. My mother said my legs would stiffen, sometimes I would drool and my eyes would roll back. My Mother would cry. I had a hard time making friends because I had O.C.D too. Everything had to be perfect all the time. My room was spotless.
Today I have trouble learning new tasks. I have very high anxiety and find it hard to socialize and make friends. It bugs me that people cannot see my brain. But I pushed and fought for myself and the Department of Rehab is helping me. It’s a program called project search. It’s for people with disabilities who get help getting great jobs and to live on our own. I ride the BART train to Oakland where my internship is. It will help us get jobs with the County. It’s a great opportunity. I have held numerous jobs in the past and have had a hard time keeping them due to my learning disability and social anxiety. I will never work in retail or customer service again. I am glad to be a part of this internship program with other people who have disabilities too!!!!
Tell Us More:
What is a day with HH like? I don’t have it anymore. I would sometimes have 5 or 6 seizures a day. I met a nice teacher that bought me a beanbag chair to rest in after I would have a seizure because I would fall in a deep heavy sleep for about 30 minutes.
What does it feel like to have a gelastic seizure? I cannot remember. I only remember an uncontrollable need to laugh.
What do you wish people knew about you? I have a disability. I don’t look like I have one. Just because I am really smart in some things people do not understand the difficulties I have in other area. I get nervous when speaking to people and I am unsure of myself.
What do you wish your doctors understood about you? I wish all of the doctors here in California were like the ones in Phoenix. They understood. There are side-effects that will remain with me the rest of my life.
What would you tell a younger child with HH about how they can thrive despite having an HH? That there is hope and there is help.
What do you hope to accomplish by sharing your story? My mom said you can’t keep what you don’t give away. I need to give back. I need to show understanding to other kids with HH because I understand – I walk the walk.