Kristen DeAndrade is living proof that perseverance prevails. Born with achondroplasia, the most common form of dwarfism, she is a woman on a mission to erase barriers and eradicate stereotypes. A newly published author of her memoir, “Little Legs, Big Heart,” Kristen gives people an opportunity to learn about and change the dialogue surrounding dwarfism.
Tell us a bit about yourself, your family and your background, where did you grow up?
Born in Massachusetts, just south of Boston, I grew up with my parents and younger brother, Derek. Living with achondroplasia comes with its own set of medical hurdles and mine began when I was a toddler. My family and I made yearly treks to Baltimore, MD for appointments with an orthopaedic specialist. Due to curvature in my spine I wore a back brace. And there were frequent visits (sometimes emergent) to the local paediatrician for ear infections.
For the most part, living with dwarfism did not stop me from being a kid. -- I attended school, was a cheerleader, played softball, did Girl Scouts and was also on the swim team. Derek and I would build bike jumps out of bricks and plywood in the driveway, play rousing games of manhunt with the neighbours and tear up the snow or water on our skis. We were raised on tradition, the importance of family and the New England Patriots. We travelled to Maine throughout the year, took trips every April to Florida and went Christmas carolling on Christmas Eve. Whether it was Beanie Babies and Barbies or Tiger Beat posters on my wall, there was nothing small about my childhood enthusiasm and imagination.
Being absorbed by the important things in life -- family, friends, sports and extracurriculars, my young mind was oblivious to the judgments and ridicule. I was driven by curiosity, taught to have hopes and dreams just like any other child my age and believed that I was capable of anything.
Today you are an author, motivational speaker, yoga teacher and more. Tell us about your journey so far.
Over the course of my life, people have told me “no” either out of fear or out of ignorance. My parents quickly shot down my request to play youth football and even soccer for the obvious fear of my safety. Those ‘nos’ were a little hard to digest as a young girl but I eventually settled for cheerleading, softball and swimming.
When I came to the realization that society had an auto-pilot way of thinking and immediately discounted me and my abilities just because of my height, it became my life’s mission to rise above. For every ignorant “no, you can’t,” I turned around with a “yes, I can.”
This went far beyond physically proving myself. Growing up in a world made for people who are at least 4’10” had it’s emotional challenges as well. The laughing, staring, pointing and overall societal ignorance began taking its toll when I was old enough to understand that it was happening because I was living with dwarfism and looked ‘different’. What I didn’t want to do was stoop to the level of those who discounted me and retaliate with judgment. So, rather than use my voice to fire back negatively, I used it to educate others and began sharing my story.
It started in third grade when my class read a book called, “Thinking Big,” about a little girl, like me, who had achondroplasia. My teachers saw it as an opportunity for me to educate my classmates. So, my best friend and I made a movie about what it was like to live with dwarfism. After that, part of me knew that my voice would eventually take me places. Today, I continue to share my journey with students, medical professionals and various communities in hopes of educating others on dwarfism and letting those facing the ups and downs of adversity know that they are never alone.
Writing has always been an enormous outlet for me, especially when I was a little girl. I kept a diary and journaled often. It was a way for me to feel all of the emotions that come with living in the face of adversity. As I grew older, I realized how powerful words truly are; spoken, written, thought or read to ourselves and to others. Today, my journal and diary entries are a self-published memoir about growing up with dwarfism and journey with limb lengthening surgeries.
As a child, words like limitation and disability did not hold profound meaning when pertaining to me. Short stature was a part of who I was but it never defined my capabilities or kept me from happiness. That all changed in my adolescence as I unknowingly began to give others the authority to base my potential on my height and being different. I was bullied in the form of both mockery and isolation. There is nothing worse than being outed, degraded or unheard and all of that began to take a toll. When I was a teenager, I began dealing with depression and anxiety and my self esteem continued on a never-ending roller coaster; loving every ounce of myself one minute and wishing I was someone else, the next.
While in college, I was introduced to the practice of yoga and a new journey; one that continues to be full of self-discovery, healing and love. There aren’t many things in this world that are infinite. Yoga is. It’s always changing, evolving, providing opportunities for learning and it means something different for everyone. I have drawn strength from my practice. The poses; they’re simply shapes. Being able to balance or invert, modifying and using props — that doesn’t classify my practice as good or bad. Yoga, on and off the mat, has taught me that most of life’s circumstances are chance, not choice. The lessons we learn and magic we make from circumstance, are in our control. Take what life hands you and decide what you will make of it.
My body or soul suit, as I prefer to call it, has carried me through so much. It has also been my biggest teacher. Whether through writing, yoga or speaking, I am confident that my presence in this life is to remind others that we are resilient beings with enormous capacity for change. The more we understand ourselves, the faster the wall of judgment crumbles, our differences lose their prominence and we see ourselves and each other as the beautiful, brilliant beings that we are. Every ounce of joy, fear, anger and sorrow has brought me to where I am today and for that, I am grateful.
3. In 2016, you had to make the decision about a life-changing surgery which could result in you being paralysed. Your doctor told you that whatever happens, you're going to have to "fight like hell". What happened next and how did you find the strength to push through?
Without a doubt, spinal stenosis and all that accompanied my paralyzing diagnosis, has been, by far, one of the most challenging hurdles I have ever overcome in my 35 years.
In 2015, I lost feeling and sensation from the waist down. Doctors in South Carolina misdiagnosed and mistreated me. Over the course of a year I was slowly becoming paralyzed and experiencing pain levels that were astronomical. At night, I would claw my way into bed because I had little to no function of my lower extremities and I was popping anti-inflammatories like candy. After seeking help and opinions from other potential doctors, I realized how prevalent discrimination in the medical world is, especially when it comes to the treatment of individuals with dwarfism. They suggested pain meds and physical therapy -- band aids for a condition that was worsening by the day. Overcome with physical pain and feeling unable to advocate for myself was defeating and disheartening.
A year later, I found Dr. David Feldman at the Paley Orthopaedic & Spine Institute in West Palm Beach, FL who specializes in skeletal dysplasia and is a skilled spine surgeon. At my initial consultation with Dr. Feldman and his team, he took one look at my MRI and determined that I was already suffering from acute paralysis and was unsure if surgery would even be successful. Deep down, I knew I needed to take a chance if I had any hope of staying on my own two feet. In May 2016, I underwent a 9 level spinal fusion as well as laminectomies and decompressions on my thoracic and lumbar spine. In my head, I thought that I would have surgery, do a few weeks of rehabilitation and go back to life. No thought could have been farther from the