Today we’d like to introduce you to Amber Guzman.
Hi Amber, can you start by introducing yourself? We’d love to learn more about how you got to where you are today.
I was a model and cosplayer mostly known on Instagram at the beginning of 2011. I started struggling with my abilities to walk and lift certain items back in 2012 and soon after I was diagnosed with a muscle illness called Limp Girdle Muscular Dystrophy.
I was absolutely devastated when I got this diagnosis, but I didn’t want to let it stop me from doing what I love most and creating art.
I kept modeling and started telling my story of living my life with muscular dystrophy and discovering what I could still achieve in a new way.
Soon I was making cosplay costumes that would include my walking cane at first and soon after my wheelchair.
I went viral for an interview I did and soon found myself on the television show the Doctors, where I got to show my dolly fashion style and life with MD.
I was soon invited to be on interviews around the world, from Telemundo to RTL Germany.
I was thankful to be able to talk about this rare illness that affects mostly children who still, to this day, have no cure to help.
Being able to continue to model and cosplay while being disabled has giving me many wonderful experiences, like being an invited guest to Comic cons, Anime expo, and other comic conventions to going to the premiere of Maleficent 2 and meeting Angelina Jolie, when it felt like the world stop the moment she shook my hand and talk to me about my maleficent costume I was wearing.
I have worked with many amazing companies, and I have had the opportunities to meet so many wonderful people who are both with and without disabilities.
Even though my illness is advancing, and I am needing more and more help I am honored to the friends that I have made along the way who have graciously helped me continue to accomplish my dreams!
Alright, so let’s dig a little deeper into the story – has it been an easy path overall, and if not, what were the challenges you’ve had to overcome?
It has definitely not been a smooth road.
I think anyone dealing with a difficult diagnosis would not have the best time when trying to keep a physically active job or lifestyle.
From slowly losing my independence to do things on my own to having to miss out on certain opportunities due to it not being wheelchair accessible or dealing with the pain from my illness has come up more often than not.
Especially during these times with Covid, it has been difficult and basically impossible to go to these bigger events because I cannot survive what would happen to me if I caught it unfortunately.
Mentality it’s strenuous because I constantly push myself beyond what my body can physically tolerate because I just remember being able to do it before.
Losing abilities is sad but I just have to keep doing my best is always on repeat in my head.
There are so many things to dwell on, but if you keep only your focus on the negative sides it’s hard to get out of that deep hole,
Alright, so let’s switch gears a bit and talk business. What should we know about your work?
From photography to building costumes to drawing anime-style artwork I have jumped into many different mediums,
Thankfully, they all intertwine with each other, and I have been able to learn and create more and more unique art along the way.
But the one thing I can say I am most grateful for is the opportunity that these talents I learned have been able to inspire others with disabilities to try to follow their dreams too!
That they shouldn’t let their illnesses be the downfall of them achieving their life goals.
And for those who like to dress up in costumes, I am happy to show them that they can cosplay with any equipment you need to be safe and to not let that become the problem but a part of the costume itself.
Many people have came up to me stating that they were embarrassed to use their equipment that helped them move safely, but after they saw how I can include it into my wardrobe and they wanted to do the same, they said it help them to feel more confident to use what they need to be safe.
I also was invited to do a couple of art auction of certain digital paintings I did that were centered around disabilities and mental health. Being able to talk about my work and what inspired it helped me reach a whole new group of amazing individuals living with their own experiences with being disabled.
It’s easy to let bad news blind us from seeing a good future but there is truly a better outcome than we can ever imagine if we can just push through. Doing art/ modeling and meeting so many wonderful people with their own stories has taught me this.
Can you tell us more about what you were like growing up?
I was always a kid with a huge imagination when I was growing up in the 90s.
Without the internet back then, I think most of us relied on our big imaginations!
Watching movies like the Labyrinth, Dark Crystal, and Return to Oz helped my imagination have a beautiful yet dark artistic sense. I was always playing with Barbies and building puzzles with my sister, but soon, I discovered the world of Japanese anime!
Sailor Moon was a huge influence on me when I was younger, and I wanted to be this magical girl who saved the world with all my heart. I think this is why I have this strong sense of needing to push through the dark times in life: I watch such incredible characters defending the ones they love with the last breath!
But life as a child wasn’t always be easiest for me. I dealt with many kids who pick on me because of my bright red hair, thin physical features, and being mixed race. I had teachers who would pick on me and other children of color or who were mixed race.
And worst of all, I had to suffer through the ugly divorce of my parents. Nothing ended well, and it was a long road of them constantly pinning my sister and me against each other and then warning us to like one parent more than the other.
It was a devastating experience. My dad became a heavy alcoholic, and I was left alone to deal with that at a young age. He was physically abusive and would throw any and all things, including myself, across the room. He pushed his close friends away and became very angry to everyone who tried to get him to stop. I was all that was left to help him and finally he went to get help. He completely changed and became a new man, but unfortunately, that was short-lived due to his passing away from a major heart attack.
But even through all this, I did my best to keep my head up high!
Contact Info:
- Instagram: https://www.instagram.com/amber_kohaku_chan
Image Credits
Xochitl Guzman
