June 30, 2019 was actually my 6,614th day on this planet. However, I surprisingly experienced a first that day.
It all started when I ran in to Target to grab coffee creamer — my favorite kind actually. It’s only like 2 bucks and holy smokes is it good (Coffeemate Oat Milk Carmel Latte - thank me later). I was reaching to open the cold and heavy doors in the dairy isle when the women next to me saw I was struggling. She could tell my wobbly body wasn’t thriving trying to get to the dang creamer. It wasn’t a big deal to me, I am used to leaving ample time for little task like this… but she seemed to stare for a long enough period of time that I decided I would acknowledge her. She was cute. A little older but seemed genuinely interested in my creamer extravaganza. So I decided to practice patience and a little bit of kindness and let her continue to stare rather than make a goofy “what are YOU looking at” type of face. If you don’t identify as someone with a disability, I’ll let you in on a secret: staring and infamous disability questions can be exhausting. I got out of my scooter and reached for the creamer after a struggle to get the door open. I was content and ready to leave until the woman opened her mouth with a soft spoken “do you mind if I ask you something?”. Like I said, normally I fake these interactions and push through so I don’t seem rude. I was ready to to give my elevator speech. “CMT is a progressive neurological disorder that effects the way my brain communicates with other parts of my body.” Blah blah blah. But I was wrong…
The women continues: “You seem to have a disability, if you don’t mind me putting it that way, and I read a story on facebook about a girl who looked kinda like you”
“Oh yeah! That probably was me, nice to meet you.. I am Erin!”
She responded “I am at a loss for words…”
This was about the time where the disabled girl in me checked out. Here we go.. I was about to be told I’m an inspiration (ps. If you’ve ever told me i’m inspirational — thank you. I love you. And I value that compliment when it comes from people who know my heart and not just my physical journey). But I was wrong.
“I read all about you and your story and it hasn’t left my mind since. I was diagnosed with CMT a few weeks ago and I have felt hopeless. I googled the disease and our area and your story popped up. I mean it’s cool that you learned how to walk and have been so upbeat through the whole process, but what really resonated with me is the fact you are excited for what is next. Your story found me on a dark day. I thought to myself… 'well if this little girl feels like she can handle it, I can too' and people like you make me excited to keep living and keep loving. So thank you.”
It was in that moment, on my 6,614th of living, that I recognized how much purpose I was born with. CMT could eat me alive if I let it. In fact, some days it does. But somehow CMT brought me the life that I longed for. A stranger that I did not know is now going to bed feeling like succeeding with CMT is a possibility because of MY story??!! What a gift I have been given.
It got me thinking.
Is this why I am here on this big ole moving rock for the next however many years? Well, if that is the case, I better get to work. For it isn’t my diagnosis that I hope remains with people-- what should stick is the way that people physically, emotionally, and spiritually love me so fearlessly everyday so that I have the means to keep going. My story isn’t just about me - it is a story about choosing joy even when doing so seems like it shouldn't make sense. It's a story about a team effort in prioritizing love amidst chaos. So what's your thing? The thing that reminds you why you are here 'living and loving'?
Your thing may look different than my CMT - but regardless, it may be keeping someone else afloat. I am a firm believer that if you have a pulse, you have a purpose. And if you ever need coffee creamer, be prepared to face your purpose in one of those ridiculously cold dairy cases. I sure did.
Thank you for creating your blog I’m so glad we can see other people with CMT being a light in the world of disability even though CMT can be a little bit overwhelming but I’m glad I have people like you to help me embrace My CMT even more.
Great post and beautiful blog. Looking forward to reading more posts!
Erin, you are smart, strong, funny and an inspiration to us all. I loved reading about your coffee creamer experience and the stranger you met that day. Not surprisingly you are becoming an idol, like a rockstar who learns how to handle an audience. We are anxious to read your next blog and see you tackle and win. You fill the room with hope and love of your purpose. We love you, cousin.
Thank you for being such an inspiration to me Erin! You are a blessing to this world ❤
woahhhhh! love you and the passion you are filled with!