Hello lovelies,
Today I will be attending my fifth Moebius Syndrome Foundation conference! If you want to read more about Moebius you can check out this link. I found out that I had Moebius when I was 10 and it felt like I had found a puzzle piece of myself I have been looking for. It felt like I was the only person with my problems until I got to meet people online that got what I was going through. I went to my first Moebius conference when I was 14. I still can't find the words to describe the atmosphere and the warmth I feel when I see the Moebius community.
Fast forward, I am 23 and it is so cool to grow up with my friends and get to help inspire the younger ones that were my age when I found out about Moebius. As a bonus, I became a Social Media Assistant in March for the Foundation and I have loved every minute of it. It brings me such joy to help in some way even if it is just through the screen.
Also, July is Disability Pride Month! This month is so special to me because it’s a time of spreading awareness and beating the stigma of having disabilities makes us incapable of what we can do. Disabilities aren’t just physical but mental as well.
Disability does not mean inability.
When I was little, the doctors told my parents that I wouldn’t be able to drink out of a straw. A couple years later, I figured out a way to drink out of a straw and showed my mom.
She cried.
For my whole life, I thought I’d never be able to get my lips to touch. It was just something I accepted. In speech therapy, they had the idea of getting me to stretch my lips just to see if that would help them touch.
At first, I did the exercises with no hope that my lips would touch. As time went on, I did more of the exercises until the day arrived that I could press my lips together. It’s still such an amazing feeling and I’m so proud of myself.
Once, I got told that it must be hard to make friends with my disabilities which blew my mind. The thought never crossed my mind. Yes, I have social anxiety but I never thought looking different would scare friendships away. I’ve gotten lucky in the department of friendships and growing up, I went to school with the same people for the most part. I had no reason to think differently. In college, it’s such a huge place that it was overwhelming sometimes but I never thought the way I look or speak would turn people away.
The reason is: truly good people won’t care about what can hold you back but instead support you.
On my first date with my boyfriend, he took it upon himself to research about Moebius Syndrome on his own without me mentioning it. That gesture meant so much to me. This was something that did have me nervous: that my disability would make me unattractive. That I wouldn’t find anyone that would romantically take interest in me or I’d be too much.
Now, I know that mindset isn’t right. I know I’m a great person with an awesome personality and a huge heart. You’re never too much for the right people.
It’s scary to be honest on here but it’s helpful that I know I’m not alone with these feelings and I want to share this in case anyone else needs to know that they’re not the only one thinking like this.
I also want to be a voice for the Moebius and disability community when I say that it’s never a bad thing to ask questions and be curious. I’d rather have questions from little kids about why I talk the way I do rather than be hid from. It’s so important to teach kids that even if someone looks different from you or acts differently, they’re still human. Do not assume things about someone just from watching them.
Please if someone has a speech impediment and you don’t understand them: ask to repeat. I promise you it’s so much better knowing you’re being understood rather than pretending to know.
Please have patience. Don’t be judgmental. Be kind and gentle. Educate yourself. Spread awareness.
Love always,
Zayniator
Currently listening to: Scar Tissue by the Red Hot Chili Peppers
