“My name’s Erin. I’m 21-years-old. I live in upstate New York with my Dad, mom and two sisters. I’ve struggled with obsessive compulsive disorder and panic disorder and autism spectrum disorder since I was 4-years-old. Later on, as I got older, depression played a huge part in my life, too. I’ve struggled with school and being bullied my whole life. My parents and sisters have always been there to push me and support me no matter what. My parents were told I would never graduate from high school but in 2015, I did. Without all the people I had helping me in high school, it was really hard to continue to be a student athlete in college. My mental health started to decline. My OCD and anxiety were always bad but now they were at an all-time high. I had to drop out of school in October of 2018 on medical leave and was hospitalized.
Then something amazing happened. My psychiatrist, (Dr. Klopott, who has been working with me since I was 7) mentioned something that could have the potential to completely change my life. He had done research and come across Deep Brain Stimulation (DBS) surgery for OCD and anxiety (which is experimental in the US). DBS is a common surgery for people with Parkinson’s, central tremors and seizure disorders. For OCD and anxiety, the surgery and the placement of the leads is in a different part of the brain but where they place the battery in the chest is the same. I am the first one in my area to have this type of surgery done.
It seems weird I wasn’t even the most nervous about the actual surgery because it has so much potential to change my life. The thing I was most worried about was getting my hair shaved off for surgery. What 21-year-old girl wants to be bald? I’m super self-conscious as it is, and I hide behind my hair when I’m anxious, so this was going to be a huge change and super upsetting for me. 2 weeks before surgery however, I did decide to donate 8 inches of my hair to Pantene, so a cancer patient could have a wig and that made me feel a little better, but I still felt so alone.
When I woke up from surgery the first person I saw was my Mom and she gave me a kiss on my forehead and smiled and pointed to my dad and when I looked at my dad I don’t think I’ve ever had a more genuine smile on my face in my entire life. I have never felt more love than I have in that moment. While I was in surgery my dad had gone to get his head shaved so ‘when I woke up I wouldn’t be alone, and we’d be in this together.’
The love he showed for me that day was truly something I’ll never forget. He didn’t have a father growing up, so it amazes me with how wonderful of a human and how kind of a soul he has. He truly has the kindest heart. Must have been my wonderful grandmother’s influence on him!
Just the other day I got my battery and programming turned on. About 4 weeks after surgery to allow the swelling in the brain to decrease. The battery in my chest is connected to the leads which wind up through my neck and go deep into my brain. The battery then transmits signals to my brain. Right now, it’s on a very low setting because we have to be cautious of side effects, but I have already had some tiny victories when it comes to my OCD. I cannot wait for the programming to be turned up higher and to hopefully see even more improvements.
The moral of the story? Just remember to always hang onto hope and Always. Keep. Fighting. No matter your story, no matter your mental illness. If you have a family as supportive as mine you can and will get through whatever you are going through.
There were times when I wanted to give up and call it quits but my family never gave up hope. This helped me never give up on myself.”
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