As able bodied individuals, we often take advantage of daily tasks that we'd never fathom losing the ability to do independently. However, for model, cosplayers, and artist Amber Guzman, she loses mobility every month because of Muscular Dystrophy. Muscular Dystrophy is a group of diseases that cause significant muscle loss because of genetic mutations that interfere with the production of proteins needed to form healthy muscle.
But, despite her illness taking her ability to walk and live independently, she's a thriving creator. Guzman has developed an online following from her incredible cosplay designs, which she crafts herself, and stunning makeup creations. Her social media fame has given her more than just an outlet to express her creativity and educate her audience about MD, but also an electronic wheelchair gifted by her followers.
We had the pleasure of speaking to this multi-talented artist to learn about her daily life with MD, why she became a part of the cosplay community, and of course, the story behind her growing tattoo collection.
Tell us your Muscular Dystrophy story. When were you diagnosed?
Ever since I was little I was always physically thin. I had trouble running and I would walk with a swish in my hips like a cartoon girl in high heels. My parents where going through a bad divorce at the time and didn’t pay attention to what was going on. They thought I was physically tired because of depression from the divorce and not because of this rare hereditary illness that wasn’t well known at the time. I wasn’t diagnosed with MD in until I was 25 years old, around October of 2012 after a muscle biopsy my doctor suggested I get because he immediately knew when I walk in (this is when I was walking) that I had Muscular Dystrophy.
How did it affect you growing up?
I didn’t know I had MD till I was older, but I always knew that something was wrong with me. I would have trouble walking or keeping my energy levels up like my friends while I was at school. I remember I would have to tell my P.E teacher that my mom said it was ok for me to sit out on the mile runs because my legs hurt. I would have to sign my dad’s signature without them knowing to get out of it because I honestly couldn’t run if my life depended on it. It made classes harder for me to pay attention to and teachers disliked me because I would be exhausted after lunch or P.E. I also got picked on for being too thin. I would hate that I felt different without knowing what was really going on with my body. I loved dancing and gymnastics, but I just couldn’t keep up. Having to stop all physical activities was hard on me as I grew up, but without that I think I would have never found my love for art.
How does it impact your daily life?
Many people forget how much we truly do with the muscles we have. Because Muscular Dystrophy slowly atrophies certain muscles in your body, I lose an ability I can do for myself with each passing month. I have to now ask for help with simple everyday tasks, like brushing my teeth, holding my arms up to wash my face, going to the bathroom, getting dressed, turning over in bed, and even just scratching an itch. Combing my hair is so hard and I never used to have trouble with it when I was younger. Eating has now become harder, only because I have to drink fluids to help the food go down because that is a muscle too. I actually eat a lot and enjoy cooking, so my thin frame has minimal to do with my eating habits. To be honest, I went from being very independent to having to put my trust into the ones closest to me, which at times is hard to cope with because no one wants to feel like a burden in any way.
What’s your current level of mobility?
Right now, I can thankfully still stand up in one spot with the assistants of a person, wall, or holding on to something stable. But walking is very hard for me and I can’t do it on my own, so I use an electric wheelchair that was kindly donated to me by my fans on Instagram! It has changed my life and helped me go on more adventures I wasn’t able to do beforehand. I can do my makeup, but I use a table to help keep my hands up. I also build cosplay costumes which tend to take me longer to do, but I always get them done on time.
How is art a form of therapy for you?
It allows me to express myself and my emotions, whether they are good or bad. Having an illness that limits you can be very depressing at times but art, makeup and cosplay allow me to release all that hurt or happiness. Holding emotions in, especially sad ones, is a killer that will definitely get the weaker hearts. Art is definitely a therapy that has saved my life countless times and helped me meet so many other creative people.
What led you to start cosplaying and modeling?
My mother had both me and my sister in modeling competitions, photo shoots, and runways since we were younger. I have always loved modeling and I loved portraying a certain look or character, because I have a passion for drawing. Bringing these characters to life is what modeling and cosplay is all about! It’s a moving artwork or a beautiful moment captured in a frame. Plus, building and completing a cosplay costume always makes me feel this huge feeling of accomplishment. Cosplay very motivating and empowering community as well.
Which animes provide the most inspiration for your looks?
Anime series have been coming out more rapidly than they ever did when I was younger, so it's hard to pinpoint a favorite nowadays. But I have a love of putting a twist on beloved characters, such as an evil version of Sailor Moon or converting my wheelchair into Elias from The Ancient Magus Bride so I can be Chise. These animes are either classics that will forever be loved or ones that are so well done that it will bring you to tell your friends about it that don’t even know what anime is.
Take us through the daily life of Amber Guzman.
I am now married and living with my husband and his beautiful family. His mother comes in every morning after we wake up to kiss my head, while making sure to ask if I am feeling good and if I slept well. By morning, the whole house has a beautiful smell of traditional Mexican dishes his mother makes for that night's dinner. Then, soon after waking, my husband and I find out what adventures we will get into for the day whether it be doing a photo shoot, hanging with friends, or building a new cosplay costume. But, sometimes we just feel like having a lazy day at home and that is when I will spend time drawing or playing video games. I do all of this with the help of my husband, who can’t work because he is my caretaker. At least I get to spend each day with the love of my life/best friend!
What was your first tattoo, which is your favorite tattoo, and what’s your most recent tattoo?
My first tattoo is of a woman who is wrapped and almost tangled in her own hair. It meant a lot to me, because it represented being trapped by my own problems in life that were holding me back and having to break through them. I got it when I turned 18 by a friend of ours who was a tattoo artist.
My favorite tattoo is the Sailor Moon symbol on the center of my chest. I got it back when my husband and I were learning how to properly tattoo and the best way to practice is with friends and family willing to let you use them to test your skills. Sailor Moon was the anime series that introduced me into that world, so it needed to be close to my heart.
My most recent tattoo would be a small bunny on my right wrist. It represents my father and it also has small stars next to it that each represent a member of my husband’s family. My husband did this tattoo as well, when we were learning how to shade.
Does MD impact the tattoo process, if so elaborate?
Tattooing is definitely different, painful, and more difficult for people with MD. Because we lack muscle mass, our bones are closer to the skin’s surface. Imagine what it’s like getting tattooed on areas like your wrist, collar bone or elbow where there isn’t a lot of muscle mass in the way, that is what it feels like for me when getting tattoo while having MD. Outlines are easier for us to get, because it’s less of an open “wound” to heal but shading or color tattoos can be bad for people with MD because we take longer to heal after cuts of any depth or size. Also stretching the skin, which is a process tattoo artist have to do when tattooing can cause the skin to tear if the person has MD because some versions of MD can make the skin more sensitive and delicate.
Where do you hope to be in one years time?
I would hope to get more involved with motivational speaking and be able to have an opportunity to inspire more people with disabilities to reach for their goals. I also see myself getting into more unique ways to model and cosplay and collaborate with other amazing artists.
What else should our readers know about you?
I actually use to be a tattoo artist before the tattoo machine itself became too heavy for me to properly hold safely. It was such a huge passion of mine and I first started to learn when I was visiting Atlanta, Georgia for almost a year. Unfortunately, the man I was apprenticing from was a bit of a prick but I learn some great techniques from him before having to quit.
When I came back to California my husband and I continued to learn how to properly tattoo and would practice on each other and friends before getting licensed and opening a business. We tattooed for a few years before stopping, but it was an awesome yet crazy experience.