“‘One in two-hundred.’ Those were three words my doctor spoke to my mother as I laid in recovery from my fifteenth plus surgery in August of 2019. I was born with Ollier’s Disease, a rare bone disease that affects the skeletal system. The disease is characterized by multiple tumors, better known as enchondromas, that grow near the growth plates. These tumors can be benign or malignant, but in most cases, they are non-cancerous. These tumors may develop in the hands, feet, and limbs. However, it is not limited to those areas and can occur in the vertebrae, skull, and spine.
So, I’m guessing you’re wondering what makes me one of two hundred? Well, I’m affected by this disease in several ways, which reduces the overall number of individuals living with the condition. Usually, the disease primarily affects one side of the body more than the other. In my case, the left side of my body consists of the majority deformities caused by Ollier’s. I have a limb discrepancy in which both the left arm and leg are shorter than the right extremities. This causes asymmetrical growth. I also have Scoliosis, which more people are familiar with and is defined as curvature in the spine. I was also diagnosed with Maffucci Syndrome, a related form of the disease where vascular reddish or purplish lesions present themselves in the skin, usually on the hands and feet (I have both). These vascular lesions are better known as hemangiomas, which are also tumors and made up of extra tangled blood vessels.
Because of the deformities the disease causes, I’ve had multiple surgeries for modification. These surgeries include leg-lengthening of both the thigh and tibia, mass removals from the left hand (including the wrist, middle and ring finger), right ankle, and left big toe, procedures to straighten the bone due to Bowness in the right leg, and removal of constriction bands. Some of these procedures have been done more than once in order to get me within a comfortable realm of mobility. I’ve had full body casts, external fixators, splints, and braces to stabilize or hold the limbs in place after surgery. One thing most people don’t know is due to the deformities in the bone, those suffering from Ollier’s and Maffucci Syndrome have short stature. As a result of the lengthening, I’ve gained a total of about 4 inches on my left leg which puts me at four feet, eight inches in height.
Since I was diagnosed at only a few months old, I’ve dealt with the disease my entire life. My mom has been my primary caretaker outside of medical professionals and we’ve learned together. There is no cure and I would say the disease is unpredictable. One of the most regular questions asked by friends and family is if I’ll have any future surgeries. That is one question I cannot answer and one thing I have no control over. Tumors can develop at any given time in any part of the extremities and progress to a degree that requires medical attention and advice. My rule of thumb I’ve stood firm on since I’ve been making my own decisions regarding my health is ‘if it’s not broke, don’t fix it.’ I would love to say it became easier as I grew older, but it didn’t. I endured most of my major surgeries at an early age and that meant I was in and out of school. Even though to some it may sound like a rough childhood, it was so much easier to cope with as a child. You’re blind to society’s judgments and standards of what beauty is. I was a happy child and almost every picture captured, no matter what condition I was in, I had a smile. As I grew older and as my body matured, the deformities were more obvious, which made it harder for me to accept. I had a lot more to consider. I had to choose between clothes and shoes I wanted or liked versus clothes and shoes that were more comfortable and flattering to my body. That’s when I realized I wasn’t like everyone else.
I became so caught up in trying to appear ‘normal’ I began to lose myself. There were many times I found myself doing things that really weren’t me, just to fit in or prove myself to others. At the end of the day, I felt like I was living a double life in a sense. I would often wear long sleeve shirts or jackets to hide my left arm. I would never step foot out of the house in shorts or skirts because of the large and multiple scars that cover my legs along with the abnormalities. There was a clear differentiation between the Ashley my family loved and knew and the Ashley I had become. The Ashley who just wanted to be accepted and make it through life every day avoiding harsh stares, disapproving looks, and ignorant questions. I just wasn’t ready to let everyone into my world and embrace me the way I was. I was afraid of rejection when all I really wanted was for people to look beyond the scars and differences. There is a song I heard a few years ago that resonated so much with how I felt. It described all the emotions and feelings I had been holding in to save face. It’s called ‘Lights and Camera,’ by recording artist Yuna. One of the verses goes, ‘And nobody sees who you are inside, nobody knows that you’re so much more. Nobody needs to know you’re tired of putting a show.’ That was it for me.
I was tired of smiling and being what everyone saw as ‘strong.’ I was tired of crying out to God in private, ‘Why me?’ It was so heavy to carry that my physical healing wasn’t included in my prayers anymore at night. I recognized it was my own perception of myself that needed fixing, and I began to pray for self-acceptance. One of my favorite quotes is, ‘At the end of the day all we have is who we are’ – Ryan Calhoun. It meant nothing to me anymore to put on a show for everyone else. At the end of the day, I still had to go home and deal with my own feelings.
Though I’ve experienced some very low lows, it only helped me accomplish some of my greatest achievements. I graduated in 2014 from ITI Technical College Magna Cum Laude with an Associate’s degree in Medical Office Administration and certified in Medical Billing and Coding. I was also the recipient of the Joe Martin Jr. award by the president of ITI, Joe Martin Jr. The award is presented to the graduate who best exemplifies the goal of ITI based on attitude, work ethic, character, attendance, and community service. I currently work at Unum, a Fortune 500 company, as a Corporate Contact Specialist in the provider relations department. In February of 2019, I organized an on-campus work event to celebrate Rare Disease Day by sharing statistics, spreading awareness, and how we can support equity for individuals living with a rare disease. I even passed out ribbons to those in my community who support the cause. Outside of my career, I’ve created a social media page to share my personal journey in the hopes it will inspire others to someday share theirs and stand in truth with me.
It took twenty-five years, and thirteen days to realize it wasn’t too late to turn back. I had just awakened in my hospital room from recovery when my mom said three powerful words to me. ‘One in two-hundred.’ This surgery was to remove a constriction band/ring on my upper left arm. A constriction band is a partial or complete fibrous circumferential tissue band that is indented in any part of the body but can completely cut off the circulation of blood flow if it worsens. I had dreamed of the day where I would have an epiphany and I would no longer allow my disease to define me. That moment in my bed, my outlook changed. I no longer looked at my disability as a shortcoming or a disadvantage. A tattoo I had gotten a few years prior, ‘ruach’ (roo’-akh) placed on the back of my neck means ‘breath of God’ or ‘Holy Spirit’ in Hebrew. At the time, I had no idea how profound it was to me and my acceptance of myself. The fact I am one of two hundred affected in several different ways. I feel like I was handpicked or chosen.
Everyone has a battle they’re facing. I just want to stand in solidarity, so you know you are not alone.”
This story was submitted to Love What Matters by Ashley Cavalier from Baton Rouge, Lousiana. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read more touching stories like this:
‘The doctor had tears in her eyes. ‘We can’t say if he’ll make it or not.’ Fractures started appearing in the scans, in every limb.’: Woman births baby with Brittle Bone Disease, ‘My job is to love him well’
‘He doesn’t have much time.’ Dylan was as fit as a fiddle. ‘What if I never get to see my brother again?’: Woman becomes perfect match for brother’s bone marrow transplant, ‘It was my turn to repay him’
‘My mom noticed a hole above my tailbone she could fit her pinky into. The doctors told her, ‘As long as it’s covered with skin, it’s nothing to worry about.’: Woman with spina bifida and fibromyalgia suffers from ‘back attacks’ and ‘wild symptoms’
Provide beauty and strength for others. SHARE this story on Facebook with your friends and family.