Hey, I’m Marissa and I’ve been watching Share My Story for the last few weeks and today I wanna tell you my story of how I lost one half of my brain. I was a completely normal girl until I the age of 3. But then I had my first seizure. And I can still remember riding in the ambulance to get to the hospital.
Unfortunately the seizures didn’t stop and at one point I was having seizures every 5 minutes.
The doctors diagnosed me with “Rasmussen's encephalitis”, it’s a rare inflammatory neurological disease which affects only one half of the brain.
The doctors gave me all kinds of medicine to treat it but nothing worked. And because the seizures kept me from falling asleep, I was close to death after a few days.
That’s why my parents allowed the doctors to cut out the affected area, which meant I’d lose half of my brain.
Obviously, my parents were very worried about brain damage, but I was lucky. Because I was so young, my brain was still growing and developing, so even though I only had 1 half left, my brain was able to adapt and reorganise itself.
After the operation, the seizures stopped. And these days, the only signs of what happened are that I don’t have much control over my right upper body.
School was hard though. I find it tough to focus for long and it took me years to learn how to read and write.
I remember watching other kids doing things like playing on the swings or chasing each other and I’d be sad because I couldn’t join in.
My parents didn’t have it easy either. I had a lots of mood swings growing up. And sometimes I even threw scissors and forks at them. Because whenever I was angry, I lost all my self-control. The doctors explained it by saying that my prefrontal cortex was still damaged by the brain operation I had as a 3 year old kid.
But despite my many flaws I’m always trying my best to be a positive person. I am constantly joking and I always have a smile on my face. That’s because I know how lucky I am to be alive even though I lost half of my brain.
Today, I’m 28 and married to the man who I love very much. I also play the violin in my spare time, although I’m not very good at it.
I wanted to be a nurse, you know, to help others the way the doctors helped me. Unfortunately, I can’t control my right arm, so I’ve been told I wouldn’t be able to pursue that profession.
Many years ago I dreamed of becoming a nurse, so I could help others the way the doctors helped me. Unfortunately, I can’t control my right arm, so I’ve been told I wouldn’t be able to pursue that profession.
But instead, I became a part-time cleaner at our local hospital, and I also volunteer to spend time with patients who need someone to talk to.
Recently, one of my former classmates was hospitalised. She was one of the girls that made fun of me back in middle school. She always said I was too dumb to be considered a human. And her comments made me feel very insecure about myself.
But that didn’t keep me from going into her room to clean it. When she saw me, she said “oh Marissa, you are working as a cleaner now. That’s great.” [condesending voice]
I know she looks down on me, but I don’t mind. I’m giving my best every day.
Especially, when I’m taking care of my son, Doyle. He is 4 years old now and perfectly healthy.
I just wanted to say how grateful I am to be alive. If it wasn’t for the doctors who operated on me, I wouldn’t be alive today. And if I’d been born 200 years ago, people would have confused my seizures with me being posses by a demon. I’m so lucky.
Never forget that this could be your last day on earth. You might suffer a stroke tomorrow and be gone in an instant. Don’t waste your time complaining. I mean, I could spend all day thinking about what I can’t do because of my brain damage, but instead, I just spend time with the people I love and who love me back. I have a simple but good life. And that’s all that matters to me.
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