Quality of Life

By Maria Cerio

Embraced by the warm hug of the doctor who diagnosed me with transverse myelitis 16 years ago, here I am back at Boston Children’s Hospital on October 9, 2017. It is an odd reunion. He is delighted to see me, but at the same time, my return means something must be wrong. Yet, this visit creates a sense of comfort, a feeling of something familiar, the way home feels, as this is where I was diagnosed in 2001 when I was three years old. I am now 19.

After blood tests, ultrasounds, and neurological exams, I am exhausted. However, I feel mostly lucky. Lucky to be one of the patients who, at the end of the day, gets to see Children’s Hospital in their rearview mirror as they head homeward to sleep in their own bed. I am lucky. I am grateful. But, I am challenged.

The appointments took up the entire day. My mom and I left for Boston in the darkness of the early morning and returned just in time for dinner. On the way home from the hospital, we picked up a cake to celebrate my older sister’s 22nd birthday. I should have mentioned earlier that it was my sister’s birthday. She understood that my mom and I had to spend the majority of her birthday not celebrating with her, but rather, at Children’s. She was used to this, as we have even celebrated Christmas morning at Children’s Hospital. Disability affects the whole family, not just the patient.

The birthday festivities culminated in a viewing of family home movies, a favorite activity. As I sat propped up in my living room chair watching home videos with my mom, dad, and two sisters, it dawned on me. It dawned on me that I have no memory of life before transverse myelitis (TM), life as a child and not a patient, life before paralysis, life as an able-bodied individual. I could not retrieve a single memory. I just stared at the video, watching myself dance with my older sister. It is 1999, I’m not even two, and we are dancing to a 90’s classic–Cher’s “If I could Turn Back Time.” If only I could turn back time and whisper into the toddler’s ear that that would be one of last times she danced so freely.

At first, I was saddened by the thought that my earliest memory was the night of the onset of TM. The memories of hospitals, patient gowns, IVs, catheters, shots, wheelchairs, and physical therapy had somehow overpowered those from before I got sick.

This year, I am a sophomore in college at The George Washington University. I live independently in a dorm, 350 miles away from home. Though I have regained a tremendous amount of my functions, my disability has strained friendships and family relationships, and isolated me in social situations in ways I could not have anticipated. TM has interfered in my life this year, more than it ever has.

When life feels so hard in the moment, and everything in the future presents a challenge, it is easy to succumb to self-pity. But then, I remember that one kind professor who went the extra mile to accommodate my needs, or that one friend who told me she was asked in an interview to talk about someone who inspired her and she chose me, or the young man who saw me struggling to carry my stuff and took it from my hands and brought it to my door. I remind myself that there are good people out there. I am lucky because I am the recipient of kindness.

I would not change my disease or wish it cured. I do not want to be “fixed;” rather, I am just working to improve the quality of life for myself and other individuals with disability. Conversation about disability is the catalyst for awareness, acceptance, and inclusivity.

This month, October, happens to be disability awareness month. But on September 30th and November 1st, this is still my life. It does not just last a month.

So, my message to you, is to go about your day with a little bit of extra kindness–not only during the month of October, but every day. Be that kind professor, that special friend, or that thoughtful stranger. Go about your life with an extra appreciation– do it for yourself, for individuals impacted by disability, for those individuals’ families, for everyone. Live your life not trying to fix, but rather trying to make the best of what you have.