Living with Tourette Syndrome

By Brian Kelly, In-Home Program Manager

Tourette Syndrome (TS) is a neurological movement disorder that causes a person to have both motor and vocal tics. To me, it is what I got made fun of for when I was a kid (my head twitches, incessant blinking, the compulsion to count things until they were even numbers). Everyone around me wondered why I did such “weird” things. Fortunately, I was able to tell kids, “I have Tourette Syndrome.” But, that didn’t stop them from making fun of me.

Young BKMy parents made me talk to my elementary school classes at the beginning of each year to educate my classmates. I’m sure this was a carefully thought out strategy by them to avoid having their son get bullied. My mom hated it, but oh man, I can still see that look in my dad’s eyes when I would tell him what some kids would say. While talking to my classes helped with the teasing a little, it more importantly empowered me, as a kid, to own it and explain my Tourette Syndrome. Now, did that stop me from getting made fun of, getting into fights with said kids, having some really bad stretches of time as a child and adult? No, absolutely not. The thing it did do was show me how much the people around me cared for me and how much they were willing to support me.

I had an answer at the age of nine, but my idol didn’t have an answer until he was in his mid-20s. “Jim Eisenreich had a normal childhood and a loving family, but at age 6 he began to exhibit some strange symptoms. He had tics and jerks, and couldn’t quit blinking his eyes. His family accepted this behavior.”  Sounds like a carbon copy me before I was diagnosed. The problem for Jim was that when he was 6 years old, it was 1965. People did not know much about Tourette Syndrome. Jim wasn’t able to receive the type of support I got. That didn’t stop him from going on to play college baseball at St. Cloud State then entering the draft to play in the big leagues.

BK with JimAs a Little Leaguer with TS, I had an instant role model in Jim. Seeing that someone with TS could play the game I loved so much, at that high of a level, was exactly what I needed. I was glued to the television any time he was playing. When he hit a homerun in the 1993 World Series I may or may not have run around the house waving my shirt around like a helicopter! Then, when he hit another homer in the 1997 World Series and went on to win a ring, I was more mature. So, I celebrated more like a teenager with a hearty fist pump. Throughout the years, I’ve been able to connect with Jim through a few letters and video chats. I even got to introduce him at his annual golf tournament when I was in college. Jim is the man!

Jim’s influence led me straight to working with people with disabilities. I got a glimpse, albeit tiny, into what people we support go through. I sat on the other end of the table at my own IEP meetings. I had special accommodations throughout high school and college. I continue to made adaptations for myself as a 31 year old man. Working at Hammer means the world to me. If I can have a fraction of the influence on the people I support that Jim had on me, then I go home a happy man. It’s all about keeping it positive!!

BK with RobbieBK Fam

10 Comments

  1. Angela

    Thanks for sharing your story Brian! You are an awesome team member and support for the people at Hammer.

    Reply
  2. Danny T Ngo

    Amazing story, BK! All of the trials and tribulations that we go through make us who we are, and I’m sure that your experiences living with Tourette’s has helped shape you into the awesome person that you are now. Rock on!

    Reply
  3. Eric Durkin

    Awesome story, BK,thanks for sharing it.

    Reply
  4. Suzanne

    Amazing story indeed! You are an inspiration to so many, Brian. What a gift to Hammer and all those that are lucky enough to come into your life. I agree with Danny, your experiences shaped you to who you are today. Some might have taken those life moments and turned inward or negative – not Brian Kelly! Thanks for sharing!

    Reply
  5. Terriann Matejcek

    Brian, you are a great role model! The way you took my daughter with Tourette’s under your wing and told her your story was very inspiring. You are the role model now.

    Reply
  6. Charlie Kelly

    Brian, you are the Man. So proud of you.

    Reply
  7. Peter Schaffran

    Awesome story BK!! As a parent of a child with a disability, its inspiring to read your story and to see your extremely positive approach to life on a daily basis! Respect!!!

    Reply
  8. Al Erickson

    Yours is a very inspirational story, Brian. So pleased you shared it.

    Reply
  9. Julane

    Brian,

    Your beautiful spirit is always a pleasure to be around. Thank you for sharing your inspiring story!

    Reply
  10. Tony Baisley

    Thanks so much for sharing your story with us, Brian. That you’ve chosen to give of your life and personal experiences to help others is wonderful!! Glad to know you! 🙂

    Reply

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