The Dystonia Medical Research Foundation held a webinar about Cerebral Palsy (CP) and dystonia. I was honored to be a guest speaker. Here is what I said:
Hi! I am Hannah Thompson. I was diagnosed with dystonia at 7
years old due to a brain injury that occurred at birth. The initial brain
injury caused cerebral palsy. 7 years later, we saw the onset of dystonia. I
have generalized dystonia; this disorder impacts my whole body. Despite these roadblocks,
I have chosen to thrive. I have gotten my undergraduate degree in communication
at Elmhurst University and my master’s in social justice at Loyola University
Chicago. I have amazing friends, a blossoming motivational speaking career, and
a full, rich life.
The role of cerebral palsy and dystonia have played small parts in my life. My diagnosis shapes how much assistance I need throughout the day. However, my diagnosis is not the reason I am a positive person, an organizational freak, a coffee lover, a good friend, and all my identities that really matter. Due to the dystonia as well as the Cerebral Palsy, I do go to physical therapy twice a week to undo what the dystonia does on a daily basis. I have a lot of tone throughout my body and my back likes to extend, all of that movement causes pain. Physical therapy consists of pain management, strengthening and balance work. My core strength can get me back to center when my body has large movements. The dystonia is going to do what it is going to do but with therapy, I can find my center and get back to my life. Besides for therapy, when someone new comes into my life, the movements during that first conversation can lead to discomfort for the new person but everyone in my life gets used to the dystonia and focuses on who I am as a person which is so much more important than any diagnosis.
One of the questions that the DMRF asked me to address is what would you say to your teenage self? I would say that life gets so much better after high school. Middle school and high school can be the worst years of your life. Everyone cares about their appearance in high school, they probably don’t want to associate themselves with someone who is considered different. In college, everyone is looking to connect. I know in college, nobody cared that I was disabled. I have a ton of friends; we still get together. My life is really full and beautiful.
To sum up, I would say my dystonia is secondary. I am so much more than any medical diagnosis I will ever have. My advice for anyone is to be positive and live every day. Get outside, get to know your community, walk, or roll around the world with a happy heart. Thank you for letting me tell a little bit of my story today. I’m honored to be a part of this webinar and thank you to the Dystonia Medical Research Foundation for what they do every day.
Thank you all for being a part of my life so amazing!
Have a great Halloween,
Hannah!
Thanks for sharing Hannah! I was touched by what you had to say. I'm sure you're audience was intrigued and amazed by your story and your perspective. It's so important to remind others that a diagnosis does not need to take up too much space in one's life. As you say, a certain amount of dedication to your health is important when you have a diagnosis, but it shouldn't define that person unless that person wants to be defined by it while confronting adversity or advocating. Everyone at some point will affront a diagnosis: a disease, a disability, a disadvantage and it's easy to get mentally caught up in that. But it doesn't need to be like that and it's important to remember that it doesn't define those around us either. Your story is a simple but great lesson. Thank you!
ReplyDeleteYou're welcome and thank you for the kind words.
DeleteGreat post Hannah!
ReplyDeleteThanks!
DeleteThank you! Although, I don't know what that course is about nor am I affiliated with it.
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