(North Carolina’s Emerging Writers, Z Publishing House, August 2018)
My name is Lily, and I’m twenty-five years old. Since I’m a recent college graduate, one might presume my mind is filled with dreams for the future and visions of a potential career. Or, particularly in the modern era, one might guess that I feel more stressed than blessed, armed to greet adulthood only with an official document and limited life experience. Honestly, I cannot be categorized as either eager for all the possibilities or anxious about making my own way. My life experience to this point has varied so greatly from the average person’s that most could not understand my worries or my plans. I have a genetic condition called Friedreich’s Ataxia that has flipped my world on its axis. My story illustrates that strength is not always literal.
Like a lot of medical terms, my disorder isn’t easy to pronounce or spell. Friedreich’s Ataxia, a neuromuscular condition, primarily affects walking, hand-eye coordination, and speech, and it also deprives patients of energy. This debilitating disorder affects one in 50,000 adults in the US, though one in 200 people carry the gene. Phrased simply, my body cells do not produce enough of the chemical called Frataxin that helps us balance. The disease is degenerative, meaning my abilities wither with the passage of time. The symptoms begin sometime between ages five and eighteen with the exception of rare late-onset patients. Most FA patients need to use a wheelchair by their early twenties. Though all the aforementioned symptoms are hard to manage, inconvenience isn’t deadly; the most dangerous symptom of FA is hardening of the heart, a fatal side effect.
My own FA journey logistically resembles many others. I first began exhibiting symptoms at age eleven, walking clumsily though otherwise normal. Over the next few years, the walking defect grew more noticeable as my coordination also worsened. My parents and I sought answers in every corner, but all the doctors were left scratching their heads; I was just a normal teenage girl…with a funny little limp. When I was sixteen years old, my dad pulled out the big guns and scheduled me for a series of tests at the world renowned Mayo Clinic, where I received my diagnosis. Knowing is better than not, but at that age and that phase of my life, I didn’t want to go. I wanted to rip up the appointment confirmation slip and throw it in the trash along with these mysterious health issues I was too young and too afraid to face.
The biggest changes in my life didn’t occur until a few years later. Through the rest of high school and my first two years at college, I walked without any assistive devices, though I often relied on friends and family for a helping hand. I sometimes miss the ease of my unassisted life, but I don’t miss my anxiety about navigating the world on unsure footing both literally and figuratively. In those days, people often shot me critical glances or asked if I was drunk; they didn’t know the anguish they inflicted on my fragile self-identity. After a few humiliating falls in public, I decided it was time to release my petty objections, swallow my pride, and accept the transition to an assistive device. Something interesting happened–my psyche, damaged by years of self-conscious doubt and fear, began healing. I was granted back the mobile independence that so many never question or appreciate. Ironically, succumbing to my vulnerability freed me from a cage of isolation and shame. I wasn’t trying and failing to hide my handicap anymore.
Right before transitioning to the walker, I attended my first Friedreich’s Ataxia conference, an event where patients, families, friends, scientists, doctors, etc. are presented with the new medical info on FA for the year, such as ongoing drug trials and laboratory breakthroughs. I initially felt panicked when surrounded by so many walkers and wheelchairs. I was reminded by a room full of FA patients just like me that the inevitable still loomed. Little did I know that just one year later, I’d return using a walker yet feel more secure than I had in years. My despair evaporated as I came to know the courageous people within the group of staff, patients, and families. My fear transformed to hope, and my optimism increases year by year as we continue to fight this condition.
A couple years ago, I bought a wheelchair. I had long resisted the transition from walking unassisted to using a walker, but I embraced the next transition to a wheelchair. Once I’d overcome the psychological struggle of publicly expressing my disability, I became a different person–a person who challenged stigmas by pushing a cart everywhere with no embarrassment. Incidentally, I was advocating for the disabled by living my life despite my condition with a quiet but visible determination. So when walking with the walker got harder, and my mobile independence began slipping again, I was excited to find a small, lightweight chair that would forever ease my fear of falling in public. Having used a wheelchair for a while now, I wouldn’t want to return to my old world of anxiety. Many people think that being in a wheelchair would ruin their lives, but for myself and countless others, a wheelchair is our ticket to freedom.
When I reflect on my FA story, I see a hero’s journey of highs and lows that ultimately led to triumph. Though I just graduated from college, I am unsure of the future because I can’t reasonably predict it. As I said, I am not dreaming of a career or, on the flip side, feeling stressed and overwhelmed. Like many others with disabilities, I simply greet each day with prayer and perseverance, hoping for a bright tomorrow and fighting for what I can today.
Retrospective Lily 