I have my mother’s light eyes, my great grandmother’s round nose, and my grandfather’s gift of gab. From my father, I’ve inherited a rare neuromuscular disorder called Charcot Marie Tooth disease.
I was born June 26, 1991 in Westchester, New York and appeared to be a perfectly healthy baby girl. Since there is a 50% chance of passing on the Charcot Marie Tooth (CMT) gene, my parents had me tested for the disease in utero. At the time, the results came up negative. Regardless, at the time it was clear to my mother that something was wrong. I took my first steps at two years old and before that I was never able to crawl. From the moment, I could stand I always had difficulty with my balance, gate and speed. As I grew older I was very pigeon toed and was constantly falling. My mother had taken me to doctor after doctor saying that something was wrong, though they disregarded her concerns. Finally, at the age of seven, I was diagnosed with CMT. Once diagnosed, I immediately started wearing leg braces and each year the braces got larger and bulkier. I was also being treated with physical therapy two times a week privately as well as by the school system three times each week. Though this intervention was helpful, my disease continues to progress. Growing up was hard in public school. Kids teased me because I walked funny. They would gang up on me and imitate the way that I walked, calling it “The Sophie Walk.” Kids would take the ball out of my hand during recess and throw it and say, “Let me see you run!” Every Sunday I was sick to my stomach at the thought of returning to school the next day.
My disease was progressing and by nine years old it was difficult to just walk from one end of the house to the other. At that time, I underwent a serious surgery of tendon transfer and elongation of my Achilles tendon. After missing six months of school and learning to walk all over again, I was blessed with the ability to walk so much better than I had in years. I felt as though I was given a new lease on life and a modicum of normality.
At 12 years old, my parents put me into a private school specifically for children with dyslexia, which was hindering my ability to read. The friends I made at my new school are still my closest friends to this day. They are a huge part of my life and a constant support system. My friends are always there to physically help me and at many times act as my exoskeleton— giving me a hand, picking me up, and constantly being sensitive to potential danger and difficulties in my surroundings that could cause me harm. I am extraordinarily lucky to be surrounded by such incredibly generous and loving people.
Since I was never able to participate in gym, I attended art class 5 days a week instead. Along with this, my mother is an artist and an incredibly creative woman who nurtured and encouraged may artistic ability. My life became fully immersed in expressing myself through art. Because of my disability, I’ve seen the world from an unique perspective than most people see it. Since childhood, I have had to be sharply aware of my surroundings. Details like little grooves in the pavement or uneven bricks on a sidewalk could make the difference between a pleasant outing or a catastrophic fall. This, along with my unique physicality, evolved into the desire to document the variations of all human bodies. I spent my years in high school making self-portraits by paintings, photographs and sculpture. It was my way of coming to terms with the body that I was given and accepting to eventually embrace it.
For university, I attended Bard College and majored in Photography. There, I began my journey of disability advocacy, when I began making photographic portraits of people with disabilities and illnesses, with the hope of sharing their stories and showing their strength. All too often, people with physical limitations are considered spectacles or even worse, discounted by being treated as though they are invisible. I have been doing this work ever since with the hope of making a difference with my photographs. My work has gone viral on the internet and I have won several awards for my photographs. It has even been exhibited at The Smithsonian Institute. I believe that my reason for being on this earth is to help people who are marginalized and to assist in giving them a voice. This is my calling and I intend to be doing social injustice advocacy work throughout my life.
For the last two years, I have become very serious about weight training to keep my muscles activated. The worst thing that someone with CMT can do is not stay physically active because the muscles will permanently atrophy. Since starting this regiment of exercise I have built up more muscle than I knew was possible. I can proudly say that I am currently stronger than I have been in the last ten years. Though going to the gym daily is a struggle, I remind myself that this is how I will be able to play with my children and be able to get around independently as I age. Since not much is known about the progression of my physical disorder I don’t know how my future will look as I get older. I am just taking full advantage of the strength I have today and living each day to the fullest.
I came across Courageous Faces Foundation through my good friend Justin, who is also a Face of the Foundation. He was walking in New York Fashion Week with some of the other Faces of the Foundation and it was there I met Trish Morris. I was then invited to attend the 2016 CFF gala in Boston and my life was forever changed. The Faces of the Foundation have all become dear friends of mine. We constantly keep in contact with one another and are a wonderful support system for each other. And then there’s Trish. She is this incredible person who is like the loving mother of this big foundation family. She is inspirational and an example of the kind of human being I will always strive to be. Her kindness and relentless determination to make a real difference in the world by is a constant reminder to never become complacent.
IMPORTANT THINGS I WANT PEOPLE TO KNOW ABOUT CMT:
- CMT effects the feet, legs, arms and hands causing degeneration and atrophy of the muscles, loss of sensation, and loss of fine as well as gross motor skills.
- The nerves in the feet, hands, legs and arms, are affected first. Nerve fibers that tell the muscles when to move and receive physical sensation degenerate and progressively stop doing their job.
- CMT is also known as a form of Muscular Dystrophy.
- There is no cure to stop or slow down the progression of CMT.
COOL THINGS TO KNOW ABOUT ME:
- When I was 12 I climbed to the top of the Tower of Pizza. It was my greatest physical accomplishment in life.
- My photographic work has been exhibited in The Smithsonian Institute.
- I went to Bard College which is known to have the top undergraduate program for photography in the country. When I graduated, in 2013, I was awarded The Tierney Fellowship Grant, a grant given to one photographer from each of ten schools around the world. I am extremely proud to have been honored with this very prestigious award.
- In 2014 I was awarded the Kennedy Center’s Emerging Young Artist Award.
- At the age of 23 I was given solo show at The Invisible Dog Gallery in New York City.
“I want to live so densely, lush, and slow, in the next few years. That a year becomes ten years. And my past becomes only a page in the book of life.” – Nayyira Waheed
“Never look down on someone unless you’re helping them up.” – unknown