Mika Mae’s story

Detail from art by Mika Mae Jones.

Editor’s note: Mika Mae Jones passed away in June 20, 2019, at age 32 after sustaining severe head trauma from a fall. The FSHD community mourns her tragic loss. She wrote this essay for us shortly before her death. We publish it in her honor and memory. With fellow FSHDer, Alexandrea Comstock, Mika Mae co-founded the Facebook-based awareness campaign Faces of FSHD to uplift and raise awareness of FSHD through the sharing of images.

I woke up today knowing that it would be a left-hand day. As an illustrator with facioscapulohumeral muscular dystrophy and epilepsy, I had to train both of my hands to draw in case one became too weak to work.

I was diagnosed at the age of 3. My mother had it and she was in a wheelchair my entire life. My younger brother also suffers from it, and it has interrupted his photography career at times, but like me, he keeps going and creating anyways. FSHD is familiar to me as it has always been prominent in my life.

I remember being protective of my mother when I was in elementary school. She would volunteer and help out at the school even though she was in a wheelchair. She did more than most able-bodied people do in their lifetimes.

Kids are cruel though, and I remember standing in line in third grade while it was raining outside, and these two kids were whispering about my mother, saying things like “how can she even be her mom, she’s in a wheelchair.” I always had a temper and I was extremely protective of my mother so I would often get in fights with people that I felt were attacking her.

My mother, on the other hand, was the opposite. She was empathic and incredibly sweet to everyone, even those who were disrespectful to her. She would often win people over because of her ability to listen and really see the potential in everyone.

She was a brilliant writer and she encouraged all of her children to follow their dreams. My older brother and sister were adopted from Korea when my mother decided she would not have biological children because her lordosis and slight figure made her think she would not be able to carry the weight of a child. After she adopted my sister and brother, she fell and broke her hip and was never able to walk again. Ironically, because she was now in a wheelchair, she was able to carry her children on her lap. She didn’t intend to have me. In fact, she had her tubes tied. So when she discovered she was pregnant with me she was surprised and excited.

I honestly miss her every day, I was so close to her.

My mother was in a car accident and suffered a series of strokes that left her with a tracheotomy for the last 4 years of her life. In her final years, she had many medical complications because she also had type one diabetes, but her death was definitely a result of complications related to FSHD.

My father was devoted to her until the very end. He loved her deeply and was extremely accepting of FSHD, and worked hard to find the proper doctors for us. He took care of her and proved to me that real love exists.

We are all worthy of it.

My modeling started when I was 18 and attending art school. I felt ugly most of my life. My “FSHD sister” Alexandrea (who’s extremely beautiful) also endured similar kinds of bullying. I discovered when I modeled that I could become different people. I could transcend myself and often see in photographs the kind of person I wanted to be. A strong person with internal strength as well as external.

After college I traveled, pursued my dreams and became an artist and an actress.

It’s funny, you wouldn’t think someone with this condition would ever do acting, but I found that once I was open about my condition I was able to relax. Many of my unique facial expressions and mannerisms may not be what is typically considered attractive, but the point is, I finally felt comfortable being myself. After years of denial I accepted my condition and decided that I would use my art and performances as a way to educate and support others who might going through the same thing.

Thanks to Alexandrea and the project she started with Faces of Fshd, I have become much more inspired and open about everything, especially because I’ve found that those who have this condition are finally connecting more, sharing their stories and taking pictures and realizing that they are truly beautiful both inside and out.

I am extremely grateful to her and I was so happy I got to model with her in these pictures, I got to meet her little girl. The entire experience was amazing. It literally felt like meeting a sister, and I want to help her in her mission to help us all reconnect and find magic within ourselves.

Bukowski once said, ” Find what you love and let it kill you.” I say, find what you love and let it heal you.

By Mika Mae Jones.

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