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Living With CMT - Erin’s Story




Growing up is hard, and comparing our lives to others is normal. Especially when people use social media to glamorize their days and amplify only their very best qualities, we have to be intentional about not taking it too much to heart. The grass really does look green on the other side sometimes, especially when you’re living with a disability or difference.



Introduction To Writer


Hello, my name is Erin Weierbach. I am turning 38 this year, but will eternally be a child at heart for as long as this world will let me! I’m a proud disabled woman, wife, and mom thriving with Charcot Marie Tooth (CMT) disease. My family and I live in central Pennsylvania, but we love to explore and dream of traveling the country in our school bus someday!


Among the previously mentioned, and most important roles in my life, I have also been working in the human services and disability communities for around 20 years and my husband and I own a restaurant, Get Smok’d BBQ, more on that later! I have spent my career, and life to this point, building connections and teaching others to do the same. I believe relationships are the key to all the good things in life and when working with young people with disabilities and their families I try to help them find their voice and learn how to use it to access their version of the good life. I hope the idea of community building will be my legacy and teach my son, who also has CMT, that he can do and be anything with the right tools and people supporting him.



CMT Journey


One of my earliest memories of feeling different was when I was maybe six or seven. I remember being at my grandparents house and playing with the neighborhood kids outside. Someone shouted that we should head to the playground at the end of the street and off they all went. I must have had plenty of opportunities that let me know I couldn’t run beforehand, because on this day I remember thinking to myself “I’m going to try so hard and today is the day! I’ll beat those other kids to the park!”...Needless to say, no matter the determination inside of me, that didn’t happen. It’s more than likely that I ended up with a skinned knee that day as I had so many other days I tried to keep up.


I remember always feeling a little different. I don’t mean just physically, either. I have always had an emotional side and I think I can sense when others feel “othered.” I have to believe this because I understand what it’s like. My dad has CMT, as did my grandfather and one of my younger brothers. I’m not sure we talked about it much with regard to the actual diagnosis, but I used to tell the other kids at school “I just have funny feet.”


Recently, I was spending time with someone I knew from elementary and middle school. One of her daughters asked what was wrong with my feet and why I wear adapted shoes. I explained as best I could what CMT was to a 6 year old. I asked her mom if she knew that and she said something about how she knew I wore braces on gym days, but never really thought about it. Looking back, I don’t remember too many times when anyone said anything negative to me. Most of it was my internal voice. I know this is not the typical experience kids have to be different. Kids can be cruel, and I’m lucky to have not experienced too much of that!


My family had the approach that we could do and try anything - a strength I’m proud to have today. I don’t like being told that I can’t do something, and so I’m usually up for a challenge.. Sometimes it turns out differently than I originally had hoped, but it always works out, because I believe it will. In high school, I told my guidance counselor that I wanted to open a food truck in our hometown. I’ve always loved cooking and the togetherness food creates. How cool would it be to put it on wheels and connect with even more people! She laughed and said that 1. Our town was too small for something like that to work and 2. I would never physically be able to work for let alone run a business like that.


My career has ebbed and flowed, but my passion for people has always been alive and well. Cut to nine years ago when I met my now husband. During one of our earliest conversations, we talked about the future and how we both dreamed of opening a food truck someday for the very same reasons. We have been in business for seven years and just recently shifted to a brick and mortar restaurant. I just decided to leave my full time human services position to grow our business and connect with our community even more. How ya like that, Ms. Counselor?



Encouragement


I could go on about the blessings and good fortune throughout my life, but I also want to acknowledge that every moment is not filled with gratitude. Having a disability can be tough, and frustrating, and even make me mad at times. My advice to anyone, living with a disability or not, is to find your authentic self and share it with others any chance you get. Building a support system and having positive relationships will change the way the world thinks of you, and more importantly the way you think about yourself! You’re worth any dreams you have, and only you can decide what’s possible!



Erin Welerbach has been working alongside youth and families for 20 years. Living with a disability herself, she is passionate about educating people around self advocacy and driving systems that support them. She has co-designed resources and programs supporting young people including being an active member of the Pennsylvania Youth Leadership Network and the Transition Discoveries Initiative through the George Washington University. Erin is currently the Community Program Specialist for the Charcot Marie Tooth Association and co-owner of Get Smok'd BBQ with her husband.

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