By Maria Cerio
Written for Rare Disease Day 2021
In 2021, I ski, I bike, I trip, I fall, I laugh, I cry, I walk, I roll. I have good days and less than good days. I hug and hold tightly. I am full. I focus on my steadfast, unmatched support team for whom I am infinitely grateful, whose lives are also impacted. Today, with every fiber of my being, I can say it is a happy Rare Disease Day.
In 2020, my employer treated me differently on the basis of my disability.
In 2019, I ran a road race and for the first time, a boy thought I was beautiful in my wheelchair.
In 2018, children imitated my gait as a game and college boys and police officers mistook my walking for a drunken stumble.
This same year, I united with my first wheelchair since I was three years old. It would be my ticket to freedom — allowing me to fully participate in life.
I would also find fullness in a community of disability and rare disease warriors, but still struggle to find my inner peace.
In 2017, I sank into a deep depression, losing twenty pounds and the desire to keep fighting.
I did not shed a single tear. Not one for death, goodbyes, or sad movies. I was numb — overwhelmed by feelings and lack thereof.
In Fall 2016, I started college 458 miles away from home, and new faces asked me what was wrong with my legs before asking my name.
For the record, it is not just my legs. It is my brain, my spinal cord, my bladder, my immune system, my whole body from head to toe.
I was told to “act natural.” But no part of existing in this world and in this disabled body comes naturally for me.
In Spring 2016, I walked to receive my high school diploma, putting my disabled body on display for the entire audience.
In 2015, I wrote my college admissions essay on this very topic — my transverse myelitis (TM).
In 2014, I fantasized about having my own wheelchair. I kept this dream a bubble thought, worried my peers would judge my need because I am ambulatory. It is more complicated than that though.
In Summer 2013, my doctor injected my legs with Botox (and no, not the cosmetic kind) in an attempt to relieve my tight muscles. The dose was too high, weakening me to the point where my legs felt like spaghetti. I kept falling during my family vacation in Italy.
Earlier in 2013, my body moved like the tin man. Stiff, rusty, the exact opposite of a well-oiled machine. This is still the case.
In 2012, I left Spanish class early twice a week to attend my doctor’s appointments in Boston. My teacher did not appreciate it.
In 2011, I convinced my parents that it was a good idea to let me wear four-inch wedges to my eighth-grade dance.
I also convinced my parents to let me walk the town’s 4th of July Road Race. When I crossed the finish line with my older sister and her best friend, the timer was being dismantled.
In 2010, I amazed myself when I wrapped Christmas presents and pulled my hair back with the fine motor skills I was never meant to regain.
In 2009, I presented to my class on transverse myelitis, bringing in my mobility devices and passing them around.
In 2008, I internalized my family’s stories of how I became sick and disabled. I had been told the sequence of events so many times that they felt like my own memories.
In 2007, a boy told me his grandmother could run faster than me. I still laugh about this one and only now and then I cry.
This same year, I was put under anesthesia in order to receive roughly twenty injections. Today, I do it wide awake.
In 2006, I was really into neon and leopard. I had an unreal knee sock collection and picked out my favorite leg brace pattern to date, Hot Babes. I thought it was the most scandalous name ever. My friends told our gym teacher and I blushed.
In 2005, I met someone who shared the same diagnosis as me for the first time.
I attended a symposium on my disease with my mom. She accidentally punctured my skin with the safety pin of my nametag. So my mom pricked herself in solidarity.
In 2004, I realized my years as an able-bodied individual were now outnumbered by years disabled.
I played on the little kickers soccer team and my mom wanted me to wear a helmet. Enough said on that one.
In 2003, maybe I noticed I was different. I have asked my parents when and how they sat me down to explain my disability to me. They do not have a direct answer.
In 2002, I relearned how to walk while my baby sister learned for the first time.
In Spring 2002, I was discharged from the hospital and my inpatient physical rehabilitation. I had chocolate pudding or a popsicle every night. Not because I was special, I have since learned, but so that I would swallow my terrible-tasting medicine.
My uncle visited me in the hospital, and I painted his nails hot pink. He kept it on when he tried a case in court the next day.
My sister visited and passed out at the sight of me being catheterized.
My mom and dad rotated nights sleeping next to me in the hospital, so I was never alone. Family and friends helped take care of my sisters. My baby sister tried to eat wrapping paper. Safe to say the Cerio family hands were full.
On Christmas morning 2001, my family arrived with trash bags full of presents, and we celebrated in the Boston Children’s Hospital lobby. Santa brought me a pink beanbag, and I would sit up for the first time with its support.
We had to cut the sleeve of my favorite ballerina pajamas so it could fit with my IV. For months, the Nutcracker would play on repeat on the box tv suspended from my hospital room ceiling.
My mom rushed me to the hospital in the middle of the night. On our way out the door, I supposedly declared we could not leave without putting my leopard clogs on first. My dad stayed home with my two sisters.
In 2001, well, I would forget the words for Santa and chicken fingers, two of my favorite things. The first signs that a disease was ravaging my neuroimmune system. I would become paralyzed from the neck down, hospitalized in the neurological ICU, and my life as I knew it and my family’s life as they knew it, would be changed forever.
In 2000, my mom would video me with her camcorder to show doctors. She felt there was something off; whether or not this is connected to the onset of my TM is still unknown today. She pleaded for doctors to take her seriously. This would not happen until a year later when we moved to Boston and she carried her motionless child into the emergency room.
In 1999, I took my first steps. Earlier than average. In hindsight, I believe I learned so early because the world knew the ability to do so would soon be taken from me.
In 1998, I was born healthy in Philadelphia, PA.