Physical limitations do not define or limit our capabilities for achieving success. We are the only people who get to determine our limits.
If given the opportunity to flex our creativity, we just might blow your mind with our ability to figure out whatever is standing between our limitations and success. Give us a chance. Most of us living with a disease or limitation possess an incredible gift of ingenuity.
We are so much more than our disease or limitations. Please look beyond the obvious and see us for who we are.
We have good days and we have bad days. Celebrate with us on the good days and if you haven’t heard from us in a while, please check-in.
Ask how you can help. Chances are, there will come a day when we need extra help. Knowing who we can call in those times is important.
As a part of our series about people who were able to succeed despite an illness or disability, I had the pleasure to interview Chelsey Tucker. Chelsey was misdiagnosed about 10 yrs ago and treated for the wrong medical condition. She has since learned she has NMO and Lupus. She is a wonderful artist and has become legally blind in her left eye with minimal vision in her right eye. When her vision started to fail Chelsey decided to keep doing her art. Her art is beautiful and colorful just like her.
Thank you so much for joining us Chelsey! Can you share your backstory with our readers?
Born and raised in Nashville, I fell in love with music at an early age and began to express my creativity through singing and writing songs. Storytelling quickly became a passion of mine and I had the opportunity to collaborate with some incredible talent throughout my childhood. Shortly after high school, I met and later married the love of my life. Together we have adopted 5 children and still reside in the beautiful suburbs of Music City. In addition to the title of Mom, Wife, Storyteller and Musician, I’ve had the honor of adding Gallery Artist to my list of achievements for the year.
In February 2019, I was diagnosed with Neuromyelitis Optica Spectrum Disorder (NMOSD) after being mis-diagnosed and treated as having Multiple Sclerosis for nearly 11 years. NMOSD is a mouthful to say and an even harder diagnosis to swallow. The symptoms of NMOSD and MS are often very similar. Much like MS, NMOSD is classified as an auto-immune disease that impacts the spinal cord, optic nerves and brain. Although I experience many neurological symptoms daily, my eyesight has been the most profoundly impacted. Currently, I am legally blind in my left eye and I have minimal vision in my right eye. Color density, depth perception and most all of my peripheral vison has been impacted as well. I never dreamed that a disease like NMOSD would change my life in every aspect, but it has. I may have lost my eyesight but what I’ve been given in return has been far more than anything I’ve lost.
Can you share the story of how you became ill? How have you not let it stop you?
At 21 years old, I began experiencing a bizarre collection of symptoms that I could not adequately explain or describe to my primary care physician. Symptoms like constant nausea, tachycardia, vomiting, tingles in my arms and legs and frequent headaches sent me on a wild goose chase for answers. I began visiting many specialists who seemingly had no idea what could be wrong with me. I received several diagnoses at that time, including POTS Syndrome and Raynaud’s Phenomenon, but nothing to explain the neurological symptoms that were most bothersome.
The morning I woke up with eye pain and vision loss, was the morning I knew I had a big problem. I was scared but also hopeful that we were going to have a direction that would point us toward a definitive diagnosis. Sure enough, through a series of tests and clinical evaluations, I was diagnosed with Optic Neuritis (inflammation of the optic nerve) and would subsequently be diagnosed with Multiple Sclerosis a few weeks later.
I thought I would feel relief to finally put a label on the symptoms that had plagued me for so long, but something didn’t feel right. As the years progressed, so did my symptoms. I often questioned if I had MS at all? After trying multiple disease modifying medications, I found myself getting worse instead of better. After repeated bouts of Optic Neuritis in my left eye, the condition of my optic nerve began to deteriorate, and I was rendered legally blind in 2010. Life continued and so did my symptoms. I had marked periods of wellness, then significant periods of increased disease activity. Each relapse would result in accumulated disability and I was tasked with finding my “new normal” after each relapse.
In late 2017, I was horrified to wake up and find that the same eye pain and vision loss that plagued me in left eye, was now being experienced in both eyes. Tests would later go on to confirm a diagnosis of Bi-Lateral Optic Neuritis. This was a devastating time for me. At the time, I was 29 and a mom of 3. I was heartbroken and scared that I’d never see the faces of my children clearly again or count the freckles on my daughters’ cheeks. I felt like my time with them had been cut short and I was angry. Angry that I wasn’t more intentional with my time and sad that I couldn’t recall the colors and details of the world I had seen the day prior to losing my sight.
It took nearly 8 months, but I re-gained some of my vision in my right eye. During that time, my husband was my lifesaver. He took time to explain the details and colors of all the things I was unable to see. As unusual as it may sound, I began visualizing what he was explaining. Although I couldn’t see with my physical eyes, I was able to paint a picture for myself in my mind, using my memory and some imagination. I put my visualization skills to work and I began painting. Yes, painting. My first piece was an electric guitar. It was both a nod to my love for music and to my eldest son. Those that have known me for a long time, were surprised at my newly discovered gift. My husband would often question who was sneaking in our house and painting these pieces of art! However, none were more surprised than me. Sharing with a few close friends on my personal social media accounts, I gifted a few pieces here and there and painted when my schedule would allow.
In February 2019, I experienced a bout of Bi-Lateral Optic Neuritis that was catastrophic. I was hospitalized for a week and it was then that my neurologist explained that I in fact did not have MS, but NMOSD. MRI’s, clinical evidence and the history of my Optic Neuritis gave him reason to suspect I had been mis-diagnosed for the last 11 years. Shocked, yet somewhat relieved to finally have the correct diagnosis, I was discharged with the future of my health unknown. I didn’t know if I would ever paint again, but I was determined to try. The day after I returned home, I painted a tryptic guitar series titled “Ruby Blues”. The guitars poured out of me and on to the canvas like a song. The day the paint dried on the canvas is the same day “Ruby Blues” was proudly displayed in a local Nashville coffee shop. I was so proud to have my art displayed in public. One week later, I was contacted by a patron of the coffee shop who quickly introduced me to the brilliant artist, Olga Aleexeva. After meeting Olga, she generously offered to host an event at her famous OGallery in Nashville, showcasing my work and highlighting my story. I’m not sure what came over me, but I emphatically said yes to the opportunity and got busy preparing pieces for the show. During the weeks that followed, I experienced multiple neurological setbacks and I lost the ability to hold a paint brush. Determined to complete the show no matter what, I learned to paint with my fingers. The gallery show was a huge success and I haven’t slowed down since.
What advice would you give to other people who have disabilities/limitations?
You become what you believe. If you think you are limited, you will be limited. If you think you have a disease, physical disability or other impairment that gives you a disadvantage, you will certainly limit the possibilities for your life. However, if you remain focused on all of the things you can do and if you’re willing to try new things, your possibilities are endless.
None of us are able to achieve success without some help along the way. Is there a particular person who you are grateful towards who helped you get where you are?
There are far too many people that come to mind to name just one. My amazing parents. My dear husband who has loved me so well throughout this entire journey. His patience and strength are something I will always admire. My sister, JJ. She is my rock, cheerleader and my safe place to share anything and everything. I have been profoundly blessed to have such an incredible support system.
How have you used your success to bring goodness to the world?
I’ve created over 200 pieces of art this year and I’m honored to say that I’ve gifted many of them. Gifting art and bringing joy to others is one small way I celebrate the life and gifts I’ve been given.
In addition to gifting art, I have also donated several pieces that have been auctioned off to various charities supporting NMOSD and Neuroscience research.
Can you share 5 things I wish people understood/knew about people with physical limitations and why?
- Physical limitations do not define or limit our capabilities for achieving success. We are the only people who get to determine our limits.
- If given the opportunity to flex our creativity, we just might blow your mind with our ability to figure out whatever is standing between our limitations and success. Give us a chance. Most of us living with a disease or limitation possess an incredible gift of ingenuity.
- We are so much more than our disease or limitations. Please look beyond the obvious and see us for who we are.
- We have good days and we have bad days. Celebrate with us on the good days and if you haven’t heard from us in a while, please check-in.
- Ask how you can help. Chances are, there will come a day when we need extra help. Knowing who we can call in those times is important.
What is your favorite life lesson quote?
“We are all better versions of ourselves when we are loved” — ahn
Who would you like to have a private breakfast or lunch with and why?
It’s a tie between Oprah Winfrey and Jon Bon Jovi. I imagine I could sit with them both and talk for hours about mindfulness and spirituality. I imagine Oprah is a wealth of wisdom and she possess an extraordinary amount of grace. Jon Bon Jovi will always be one of my favorites. Not only is he an incredible artist but his philanthropic endeavors are extraordinary and inspiring.