Loss and Memories

 "What is grief, if not love persevering?"-Wandavision

Firstly, I’d like to dedicate this post to anyone who’s missing people over the holiday season. I decided now would be a good time to post and remind everyone to cherish your loved ones and make some memories that you’ll keep forever. 

Two of the most common themes in life are loss and change. Life changes every day, and we change as people as life goes on. We experience tragedy and loss that forever mold us into new people. One of the most scary aspects of life, in my opinion, is the idea of losing memory of something small or huge that impacts your life. We say "I'll never forget this" wholeheartedly hoping to mean it. 

Change is scary sometimes. 

Last August, my grandpa (I call him my Papa Ed) took a fall that changed him forever. It is crazy how life can change in a flash. After that fall, his memory started getting worse from Dementia/Alzheimer's and he's now in a memory care unit. I miss getting random texts of reminders of how much he loved me. It's another level of torture knowing what is going on but he doesn't. 

I tell him things that have happened lately and a part of me hopes that he'll remember the next time I see him even though I know he won't. I told him I'm engaged a handful full times and half the times I told him, I didn't get the reactions I thought I would then cried after I left. Luckily, one of the last times I visited him recently, I told him again and he was so happy for me and told me he wouldn't miss it for the world and that my ring was so pretty which made my day because it felt like he was himself in that second. The next time I saw him, he forgot I was engaged.

I am lucky that he knows of Cobey's existence. Cobey first met him after he had just been put into the memory care unit. I introduced them and he told Cobey that there's no telling what Cobey has heard about him. He forgot how old I was and warned us not to go to casinos and buy drinks (I was 23). Now, my Papa Ed sometimes remembers that he is my lover and some days he is my "man friend" as what he called him once haha. 

There’s never a dull moment. 

One of my favorite hobbies: I keep voicemails from everyone I care about because I can't remember my Nanaw's voice anymore and my Papa Dudley's. On my birthday, it really hit that my Papa Ed wouldn't call me because he didn't know what day it was. I am so glad I have voicemails from him telling me happy 22nd birthday. Even though I know they aren't recent, it is comforting to hear him say that.

I try to call my loved ones often because I didn't call my papa Dudley that much. The last time I called him and talked to him he told me he was very proud of me which makes me feel good every time I remember. 

Time flies so fast and people get older and tomorrow isn't promised. Love loudly in everything you do. It isn't worth it to hold hatred every day you live in your heart because that is so heavy on the soul. Every night, Cobey and I have the tradition of saying what our favorite parts of our days were to remember that even on bad days, there are still good things. 

Take pictures. Take videos! I wish I had taken videos of my Nanaw and my Papa Dudley. 

I have three journals: one for activities, one when I am sad, and one where I just write the things that have happened in life lately. I really recommend taking notes of good times because I reread my journal and I find things that I forgot happened and get to relive the happy moments. 

Lastly, I just wanted to send out my hugs to everyone missing someone for the holidays. Hold your loved ones tight and cherish every moment. 

Love always, 

Zayniator 

Currently listening to: Afire Love by Ed Sheeran

One of the last pictures with my Papa Ed before he fell

My Nanaw

My papa Dudley 

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

Kindness Goes A Long Way

 Hello my lovelies, 

Originally, I was supposed to have this out last week but college life and the roadblock of not knowing how to express my thoughts in words for you all... until now. 

As most of the people reading this know, January 24th is Moebius Syndrome Awareness Day. It took my family ten years to find out about this and ever since, it has felt like a piece of me that I am so proud of. The Moebius community is something I can never express in words of how glad I am to have them. I love sharing awareness for myself and for them in hopes of helping it get to be well known. 

So, seeing all the purple this year and all the wonderful messages you all have shared with me or talked about me does not go unnoticed. I am usually pretty awkward at taking compliments because words do mean a lot to me. The hardest critic I have is myself and it is reassuring to know the impact I have made on people for the better. I will never be able to explain how much this means to me. 

Bonus story: if you know me, I love music so much. One of my favorite underrated singers I love called Banana Club noticed my message to her and she wore purple and let everyone know about it too. Big fangirl moment for me... moving along. 

The most important objective for me: trying to do my best. Sometimes I am having a bad time but it means a lot that kind people do exist. The world sometimes can feel so dark, lonely, cruel, and hopeless but it can be the small things that can make me feel better. Such as, having my blog for as long as I have. It never gets old if I get told that I have reached someone's heart or made their lives better. 

Just a reminder: it is okay to have sad days and moments. I forget about this then feel even worse that I am not okay. It is perfectly normal to not be okay all the time. 

Another thing I love is patience people have to try to understand me when I speak. I have had times where I have gotten the wrong order because I wouldn't get asked what I said but I could tell by the cluelessness looks that they were winging it for the best. Other times, when I am with friends, workers just ignore me completely and depend on them for my order. I understand the pressure and nervousness one can have thinking about asking me to repeat myself or attempts to try to understand me but I promise you that if you need me or anyone else to repeat themselves, more than likely we would be happy to.  

One of the favorite times of my life to think about is when I broke my foot (by stepping off a curb....) during my freshman year of college. Now you may be wondering: Zayne, what do you mean one of your favorite eras of my life? Well, when I broke my foot and had to wait for the ambulance, an old man stayed with me the whole time to make sure I was okay. He didn't know me at all but kept checking on me. Another time, when I was riding around in my electric wheelchair, it got stuck in the grass... so I was hopping around trying to get it back onto the concrete and another random person walked up and helped me. Let's not forget the time I got free sweet tea from Chick-fil-a and a good football watching session. 

It is the truly small acts of kindness that make my heart happy. 

It is the people who don't judge by the cover of the books, too. In my freshman year of college (pre-COVID), I would sit outside on warm days to read my books on a bench in front of my dorm. It got so often that I started seeing regulars hehe. One person that would always stop and talk to me finally one day sat down and we spoke for thirty minutes about the most random things. At one point, he started telling me the way I spoke and looked intrigued him in the best way that he wanted to get to know me. It was one of the best compliments I ever received and I cried because one of my insecurities is the way I look may turn down people's wants to interact with me. I know it is such a stupid fear but I am battling through it. 

Side note: I had to take out my photo ID to make sure they understood my name. Almost everybody I have met has complimented how cool my name is which is fun but it is a struggle sometimes to say my own name. I do love ordering on my college campus because I pay with my student ID so they can just look at it then know.  It has also become a hobby of mine to use my middle name (which is Christine) or the name Lily for my coffee orders instead of going through the process of trying to get one to understand my name. Yes, I guess you can say that I can try to say my name out loud but I have gotten to the point where my patience for myself to say my name isn't there sometimes. 

I guess the overall message for today's blog is no matter the act of kindness, I feel like it will make a difference in someone's day. I will always remember telling a substitute "thank you" just for a piece of paper in middle school and she ended up crying while telling me she hasn't heard that in a long time. 

Thank you once again for reading my blogs and making me feel like I am making a difference. Happy February! 

Love always, 

Zayniator

Remember to smile with your heart! 

Listening to: Wildfire by The Wombats 

The end

Hello 2022

 Hello my lovelies, 

I did not realize it has almost been a year since I last blogged. It's kinda crazy to me that I only posted once last year. I had two draft posts with five words waiting to be fulfilled for your beautiful brains which I never got to finish. It is hard being a perfectionist writer because I want to feel confident in what I write and it always flatters me when I get compliments. It is still unbelievable after all these years that people enjoy my blogs! Thank you for reading as always. 

While I am typing this, I am starting my 2022 Spring semester of college! I realized the other day that I graduated in 2019 and it still feels like last year. Time flies. Time also doesn't feel real at the same time because so many things feel like they have happened yesterday when it was a year or two ago. How crazy? 

Last year had amazing memories and travels. I went to North Dakota, Minnesota, Florida, Maryland, and Texas last summer. I got to see family I don't see often and create really fun memories to look back on. I also got to read a lot of books. I set out with the goal of reading 30 books last year and I achieved it! Now you must be wondering: what books have stayed in your head? 

One book: Song of Achilles by Madeline Miller. This book destroyed my heart and made me bawl like a child but I loved every minute of it. It has such beautiful writing and you don't have to know mythology to read this. I absolutely loved it. I adore Patroclus with my heart. 

Fun fact: I have a magnet on my mini-fridge in my dorm that says "I mourn the death of fictional characters" and it is true. Last week, I finished a book called They Both Die At The End... I also cried to that book. I set my goal this year to be 30 books again because it felt like the perfect amount so I could be a college student and bookworm! Cheers! 

January 24th is Moebius Syndrome Awareness Day which is honestly one of my favorite days of the year. The Moebius community feels like a bonus family and it would mean the absolute world to me if you wore purple to smile with your heart. It is an indescribable feeling to see so much support on that day and I love spreading awareness for this. 

Lastly, I am 21 now and turning 22 next month (you know I will be playing Taylor Swift). I reread things I post sometimes and laugh at myself because I do not know the future. I have had this blog since I was 16 which is crazy to me. I can't believe it. 

Everyone is growing every day and our minds change. We are all having our own ups and downs in this world and as always, I want to reassure you that you are never alone. The world can be feeling like it is on your shoulders and there is nothing you can do except lock yourself in. It is okay to be sad and I am still trying to learn that is okay to ask for help. 

I am really grateful for the people in my life and the patience and support I have. There isn't really a message in this blog to take with you but I just wanted to update you all on my life. 

Hopefully this year I will have more than just this posted for you. 

Thank you, 

Zayniator 

Currently listening to: Red Eye by Kid Cudi with Haim