Destined for great things

Posted April 13, 2022

Helena, 20 years old, wears her long black hair with a white bandana and is clothed with grey bicycle shorts, a black short-sleeved top, and black sneakers. She gazes back over her right shoulder as she walks along a wooden path in the woods. There are dead trees and branches around her in front of a light blue sky. This picture is located on Theodore Roosevelt Island.

Growing up I was always the kid that was looked at funny, the one that did not really look like or do what everyone else did.

From a tremendously young age, I visited an orthopedic consultant to address my flat feet and severely inward ankles. I wore pronation braces and arch support orthotics, or what my mom liked to call “cookies,” to address these issues.

Though I grin at how innocent I looked during those times, I cannot help but remember my youth slipping from me as my health began to visibly deteriorate compared to my peers. It was isolating. A child should never look at herself in the mirror and define these minute imperfections and differences as a true and sincere definition of beauty and strength. Yet, I am lucky to have a mother who at this age shielded me from societal and personal criticisms of my boundaries and uplifted my worth.

I did not know there was ever something severely wrong with me, I just thought I was born different. But the moment these issues presented themselves, my mom knew she had to address them – because this was her too. All the women on my mother’s direct side have had severe knee dislocations and joint issues, with my mom presenting the most. To this day, despite numerous surgeries and hours of physical therapy, her knees, toes, and shoulders still dislocate. Yet through this tremendous pain, she is a true warrior. None of them have had any concrete diagnoses, but the genetic continuation of this disease could not go unrecognized.

My first knee dislocation was in third grade during my afterschool program. I simply turned around from the lunch table after grabbing a marker and slowly walked back to my friend’s table when suddenly my left knee felt the most excruciating pain and I dropped to the floor. I thought I broke my leg, and I screamed at the top of my lungs saying I did and could not move. After the hospital trip, my mother finally told us the truth about our family – how we have lived through this pain for generations, but we are the strongest that can ever come.

And that is when it all began.

Numerous hospital trips, two knee surgeries, hundreds and hundreds of hours of physical therapy, only taking P.E. for a total of four years in my total education, thousands of tears, and cries for mercy. No more soccer, no more dance, no more running with friends or jumping on the trampoline, no more being a kid. I became an adult at the age of 8.

When I entered my undergraduate education, my joint pain progressed so excruciatingly that it became debilitating to walk to class, and some days I had to miss for I could not even get out of bed. The pain was overwhelming as if burning stones were my bones and my muscles were concrete. It took till the age of 20 for me to say “no more” and no matter the healthcare barriers, I was finally going to get a diagnosis. And last fall, I did. I. visited an exceptional Arthritis and Rheumatism office in Washington, DC that officially diagnosed me with hypermobile EDS (hEDS) and guided me towards physical therapy that will directly address the excruciating pains and discomfort in my knees and shoulders. Though there are years to come for more concrete understandings of this illness and any others comorbid to it, I am proud to say I have risen above it all.

Though the name “Helena” in my childhood town is attached to the stories of ambulances, screaming injuries, crutches, and wheelchairs, I wish I could go back to my eight-year-old self, hold her in my arms, and tell her that the pain will not subside, but she herself will blossom into a beautifully strong and wise woman destined for the greatest of things.

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