Relationships and Disabilities

Hi my lovelies,

I have thought about this topic for my blog for a while now. Of course, my perspective on relationships has changed over my lifetime and everyone's experiences are different. 

In elementary, relationships were viewed as "Oh you're cute I would hold your hand" type of thing. Do kids know what crushes are? Doubtful. I will never forget being in fifth grade and it was obvious I had a crush on a boy in my grade. One day after recess, he and a group of friends ran up to me to ask "Will you be my girlfriend?" 

Me, being oblivious and not understanding the joke, I said yes for the boys to laugh at me and then run off. I don't remember how I felt after besides just confusion. It took me a few years to realize I was the joke to say yes. Those times were brutal. 

In middle and high school, I never had a relationship and honestly, I was not looking for anything like that in someone. When it came to school dances and prom, it did hurt that I wouldn't get asked to any dances or prom. For my junior year prom, I went with my best friends which felt like girl power. I walked down the homecoming aisle with my best friend Kaylee. Senior year, I went with a nice guy my mom had thought of for me to go with. It was fun! 

But the seed was planted in the back of my head: I am not anyone's type with my disabilities. Even with my mom and family constantly reminding me how beautiful I am and good personality I have that anyone would be lucky to have me, I didn't believe them. 

When I was around 16, I got an anonymous question app to ask if it was a turn-off if someone had paralyzed lips for looks and kissing. All the comments I got said "yes" and "ew disgusting" which messed with my insecurities a lot I hate to say. 

In college, it is said a lot that this is the time you meet the love of your life! Of course, having social anxiety made me hate going to parties and I feel socially awkward in general made it hard to make friends nonetheless a romantic interest. I went on my first date when I was 21 and looking back, I think I was more excited over the fact it would be my first date. Of course, that led to nowhere. So, the thought of relationships went on the back burner of worries to have. 

I tried dating apps for funsies and didn't take them seriously most of the time. When they would compliment my personality or seem interested in me, I would bring up the fact I have a speech impediment or a disability. Half the time, they would ghost me after hearing this which y'know good because I don't need that energy in my life. 

Yet again, it felt like an extra burden sometimes having a disability. Yes, I did see disabled people in relationships but my brain was mean to tell me that I wouldn't find myself loved like that by someone.

I talked to some of my friends with a range of disabilities who have felt the same way as I did. 

Some examples of thoughts for multiple people: What if they don't have the patience to understand me? What if my disability is too much for them to handle? What if they don't want to have to worry about my health? What if my physical capability turns them away? I can't do everything someone else can do. 

My mindset got to the point that I stopped really looking for love.... until my boyfriend came into my life. I like the idea of there being an invisible string connecting one to another. We lived in the same dorm area freshman year. We are both psychology majors but never met until we did. 

He slid into my messages about how our dogs look alike and I did not think anything of it at the time. I was on vacation so we messaged back and forth for a couple days. He brought up going to the dog park together. When I got back, I reminded him about that idea. So, our first date was a dog park and dinner. 

I promise this is relevant and not just to talk about my love story hehe. 

Anyway, I sent him links to my blog and never really brought up my disability because I felt comfortable enough in our conversations. 

On our first date at dinner, he told me that he looked up what Moebius Syndrome was and read all about it. There are no words to describe how much that meant to me. It meant to the world that I didn't have to educate him on what I have. Of course, he had questions but I didn't need to explain it all to him. 

After a couple dates, I brought up that making connections was harder for me it felt like because of my disabilities and how much it meant to me he looked past that and had so much patience to understand me that it didn't affect how he felt towards me. 

His response: When we were first talking, I just enjoyed it so much that it would be stupid for me to let anything like that affect getting to know you. 

We got lucky finding each other and I am so happy with him. He is constantly wearing my Moebius Syndrome Foundation shirts and bracelets. He also supports my job in helping the organization and one of his favorite things about me that I do is how passionate about disability advocacy. 

I wanted to post this blog post in hopes of comforting other people who have felt the way I did and reassuring you that love will find you unexpectedly, no matter your age. 

With love, 

Zayniator

My boyfriend Cobey

Currently listening to: The Feels by Banana Club

Disability Pride Month 2023

 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

Growing Everyday

 Hello lovelies, 

Whenever I promise a blog is coming, I end up deleting the whole thing and so, I will not be promising you all blog posts about topics anymore so maybe I will actually post them for you all. I am a perfectionist when it comes to my writing and I want to be able to share my thoughts and feelings with you all while loving what I create so I apologize for the long pauses between blogs. 

On the plus side, this is already more blog posts this year than the last two... one blog a year! Oops! Last month, I was reading someone's blog and really enjoyed the fact they would blog just everyday stories and experiences they've had with no lesson or overall meaning to it. I feel like I pressure myself into having to make every blog of mine inspiring or motivational even when I am not feeling either of those things. In reality, I love when people can be vulnerable and honest in front of others, even when it is scary. 

One thing that is crazy to me is the fact I was a sophomore in high school when I started this blog. After all these years, I have still loved writing here with the intention of hoping I can make a difference even if it is through blogs I share online. 

Here is the scary vulnerability part I will share with you all: For most of last year (2022), I felt like I was just drifting through life with no sudden motivation or purpose to keep going. I would wake up and my chest would feel like bricks so I would stay in my dorm room at college with the lights off and not move for hours at a time. I didn't tell my family or friends about these feelings until it was obvious that I was struggling. I felt ashamed. I did not like myself. 

It was clear that I needed a break from college to pick myself back up from the bottom of this hole I burrowed myself into. As you all can recall, I touched on this in my last blog (click here to read my last one!) but depression is a pest that refuses to let up on you at times and it felt like this was a forever feeling: failing at life. 

Looking back on this time, I wish I could tell myself that I wouldn't feel like that forever and that I would get lucky in helping change children's lives and start finding myself again. I feel like a much better version of myself now. 

That doesn't mean that I don't have my struggles which I definitely do. I have a lot to still learn about myself and I need to treat myself better. I have made sticky notes of nice quotes in my bathroom to look at every morning to start my day off on the right foot. I am still having hard times but I know that I can make it through. 

What I wanted to touch on in this mess of a blog: I have changed so much ever since I made this blog. It is a good feeling knowing I have made it through hard times and that it is okay to change and make mistakes. 

It is also a good feeling to know I am not alone in my experiences. For example, when I found out that I was not the only person that has gotten in a stranger's car thinking it was my own... I felt reassured that it seemed to be a common experience... 

Don't leave your car unlocked at Walmart! 

That's today's lesson. 

Hopefully, I will be back with another blog soon. Thank you for reading this mess of a thought train as always. 

Love always, 

Zayniator 

Currently listening to Freakshow by Britney Spears

Hours before a Taylor Swift concert

Keep Pushing Through

 Hello my lovelies, 

As I type this, I want you to envision the atmosphere I am in right now: in a lovely local coffee shop with great music playing and whatever type of coffee you like right beside you (not a fan of coffee? They have tea!) on a wonderful sunny day. Nice feeling, right? I missed blogging but for every blog I have written since the last one, I have not liked nor finished. I feel like I have accidentally shut myself in but this is my attempt of crawling back to you all. 

It is hard being honest and open sometimes but I know this will help other people feel less alone. 

Depression can be a monster that can attach itself to anyone. Towards the end of 2021 and throughout 2022, depression knocked me down so many levels. It is an indescribable feeling that can't even compare to just being extreme sadness. It can make you feel alone in a room of people who love you. Depression can make even simple tasks feel like the biggest ones. It made me detach myself from my friends and family. I got in the mindset that I will be a failure at whatever I tried to do and all this pressure squeezed my insides of expectations for myself. I want to tackle everything at once but it felt like so much that it had me staying in bed or lying to myself that I will do it tomorrow and tomorrow became never. 

Social media doesn't help with showing mostly the good parts of our lives.  I found myself comparing people that looked happy and put together online to my own life until I realized: I probably look like the people I am comparing myself to. Life isn't all rainbows and a race I have to remind myself. 

I have taken time off college to refigure my own path out. I have never felt more lost sometimes until this last year. Luckily, I have been a teacher's aide for second graders which has been such a learning experience and a bright side to my days. Thanks to this experience, I think I want to become a librarian in the future. 

I miss writing here to you all. 

I apologize for this semi-sad start of a blog to start off the year BUT I want to be honest and vulnerable in hopes of reaching out to all who are struggling. You are definitely not alone. Remember to remind people you love you care about them and hold them close to your heart. 

The next post will be a much happier one because: it will be about Moebius Syndrome Awareness Day and everything about having Moebius in my experience! 

Last thing: Taylor Swift was right when you know everything at 18 but nothing at 22.

Love always, 

Zayniator 

Currently Listening to: Don't Panic by Coldplay

Have this picture of me on my first day as a teacher's aide