‘I Have A Rare Disease That Makes Movement Difficult—But Now, I Make Activewear’
I have always been an artist. Growing up, my fraternal twin sister, Marissa, was athletic, while I was not. I can vividly recall a soccer game at sleepaway camp when I was stung by a bee. Despite the pain I felt from the sting, I was absolutely relieved to sit out the rest of the game. I hated playing sports—it just didn’t come naturally to me.
Marissa’s and my abilities were never the same. People constantly compared us—and yes, that comes with being a twin. But as we reached middle school, the physical gap became even wider, beyond her love of sports and my devotion to art. When Marissa would easily walk up the stairs, I lagged behind while she waited for me at the landing.
Over time, the challenges I faced became a hindrance in my everyday life. Stepping onto a curb in my hometown of New York City felt like trudging up a steep hill. My speech became more and more slurred, and it was increasingly difficult for me to slow it down—especially when I got nervous. In my mind, I had to find ways to get stronger to keep up with my sister who could move so quickly and speak with such ease.
I constantly wondered, Why is it so hard for me?
I knew I was different, I just didn’t know what made me different.
Since I was young, art has been my passion. As a student at the University of Delaware, I spent 10 hour-days in the studio painting, welding sculptures, making ceramics, and creating screen prints. Within those four walls, I was able to express myself creatively. I could essentially escape my reality.
Making art brought me joy, but I would get really nervous before art presentations. Talking in front of an audience made me anxious. I could feel the quiet evaluation on their faces as I spoke. Whether they were actually judging me, I don't really know—but what I do know was that I was harshly judging myself. How did I sound? Was I speaking too fast? Was I slurring my words? Was I mumbling? I began working with a speech therapist to help me through it.
The walk to classes felt like a seemingly endless journey. I had to allow for extra time to get there. Stairs were terrifying. I struggled to pull myself up while gripping the banister. I felt embarrassed and confused. I didn't know how to control my body or why it wasn’t cooperating with me. So I started working out at the gym to strengthen myself. One day while leaving the gym, my legs buckled, and I fell to the ground. I thought, Had I done way too much all of a sudden? I knew something was beyond my control. So I started working with a physical therapist, too.
A post shared by @ thecosmicproject on Feb 29, 2020 at 7:51pm PST
My sister also attended the University of Delaware, which was comforting to me—until one summer, when I decided to take an internship in Israel. It was the first time we were ever apart. In Israel, I really felt the full weight of my limitations. All summer long, I was very active, walking everywhere. I fell a lot. Being on my own was a wonderful period of growth for me, but it was also a major turning point in grasping the very evident progression of my limitations.
When I was 23, my parents told me that I had been born with a rare genetic disease.
After my experience in Israel, my parents knew it was the appropriate time to disclose to me that I had been born with late-onset Tay-Sachs disease. My parents as well as my doctors always knew about my diagnosis. My sister doesn’t have late-onset Tay-Sachs—she found out about my disease when I did.
Tay-Sachs disease is a rare and incurable genetic disorder that impacts the nerve cells in my brain and spinal cord and directly affects my mobility and speech. It’s most commonly seen in infants, who experience the most severe form and usually do not live past early childhood. I have a progressive form that affects me slowly over time, but thankfully is not fatal.
I’m so glad that I found out when I did, rather than earlier. I was able to enjoy all the milestones of my childhood and early adulthood without the burden of this disease. My parents knew there was no cure, and having a name for it, earlier, would not have changed anything for me.
But as I got older and my disease progressed, I was mature enough to grasp and process the news I was given. It became apparent that I needed to know the full scope of my disease and its impact on my life. I was relieved to finally have a name for what I had and have affirmation that it wasn’t my fault—this was beyond my control.
I wasn't mad at my parents at all for having kept it from me. I knew they did it to protect me. Had I known, I would have put limitations on myself.
I started my business, The Cosmic Project, to launch my art into the world.
I’ve always been an artist, and having late-onset Tay-Sachs hasn’t taken that away from me. Reflecting back, having a twin sister without a disease, I of course noticed the differences between us—and the silver lining was that not being good at sports, when she was, made my commitment to my art even greater. If anything, my disease has now made my art more lively as a source of positivity.
With The Cosmic Project, I love putting the prints I make—flowers, fruit, stars, shapes, anything that visually inspires me—onto various products. Depending on the design, I start with watercolor on paper or by digitally sketching. The process gradually turns to graphic design as I place the prints to fit on activewear, home decor, and other products. With my background in fine arts and sculpture, I enjoy applying my two dimensional designs onto three-dimensional items, transforming my artwork into functional, liveable art.
Of all my products, I’ve been especially inspired to create leggings. They're comfortable, flexible, mobile—all things I value most, now more than ever. Though I enjoy wearing solid leggings, it feels so empowering to create, wear, and offer my customers unique, bold, and colorful prints and patterns. I love when people send me photos while wearing The Cosmic Project activewear. My art is meant to be lived in.
Recently, I've been creating illustrations of those who inspire me. People who have been seeing my illustrations have been requesting their own portraits, as well as commissioning gifts for their family and friends. While activewear is at the core of The Cosmic Project, I’m always open to expanding and creating through different mediums and forms.
Running a business in the wellness space has had such a positive impact on my life.
My activewear has attracted a broad range of athletic and health-minded people, and this has been so positive for me. I’ve become so much more involved in wellness than I used to be. I was never an athlete, but now I’ve realized that health isn't just about sports. It's about taking care of yourself.
I do daily meditation, yoga, and stretching, and I am finding healthier ways to make the foods I love. Virtual yoga sessions have been especially helpful. I can pause and rewind the video to fit my pace and modify my poses as needed. It takes the intimidation out of doing yoga.
A post shared by @ thecosmicproject on Nov 30, 2019 at 3:53pm PST
I do admit, I am still hard on myself. But I’m taking control of what I can by being proactive and learning to accept myself as I am. Because my disease is progressing slowly, I have hope that time is on my side and that a treatment or cure will be found soon.
Every day, I choose to live my life fully, the way I want to live. I’m so grateful to have a twin sister who will always be there for me. The Cosmic Project and the support I have from my family and friends brings me comfort. I create every day. I am confident. I am achieving. I am growing. I am proud of myself.
I was nervous to share my story because I don't want people to look at me differently. However, it’s more important to help raise awareness and be an advocate for this rare disease. It’s crucial to me to speak for others who feel they haven’t been heard, as they are impacted by something beyond their control.
I realize that this disease is a part of me, but it doesn’t define me.
To learn more about late-onset Tay-Sachs disease and/or to make a donation supporting the latest research, including projects leading toward potential treatments and a cure, visit the National Tay-Sachs and Allied Diseases Association (NTSAD).
You Might Also Like
