I Just Wanted to Say Thanks!

High school graduation made me feel mature, but I grew up the day I realized that I've never been alone in dealing with my disability

Article Highlights:
  • A young adult with Friedreich’s ataxia discovers that “growing up” means recognizing how much she depends on others.
by Pinalben "Pinky" Patel on July 1, 2011 - 4:12pm

QUEST Vol. 18, No. 3

It didn’t happen during my childhood, when I walked around wobbly with a pediatric walker, smiling and conversing.

It didn’t happen in my sophomore year of high school, after an emergency room visit led to an 11-day hospital stay and a diagnosis of type 1 diabetes. It didn’t happen my senior year of high school, after a four-day hospital stay to implant a pacemaker to regulate my slow heartbeat.

It happened right after high school graduation, the summer before college began. I grew up.

Perky oblivion

My clumsy, drunken walk became visible when I was 6 years old. After much testing, I was diagnosed with the neuromuscular disease Friedreich’s ataxia (FA).

In my childhood, I learned that I was different and that “different” was not a bad word. It just meant that I had to find my own way of being a kid. It was cool to be the only 11-year-old in town with a walker! In 1992, elementary schools were not as accommodating to students with disabilities as they are today. So when I had to attend classes in a trailer with steps, I would laugh and confidently ask my classmates to carry my walker and books up the stairs. If one did not want to help, I would just ask another — but no one really minded helping.

My friends with FA and other disabilities tell me their childhood and adolescence involved teasing. However, I honestly can’t remember any mockery in my past. Maybe it did go on behind my back, or even right in front of me, but I played Mary Sunshine. I adamantly avoided the snickering. I saw in the school halls that everyone was different: Some kids were tall, some were short, some were fat, some were skinny, and I was shaky.

I was unique and proud to be the only one. I thought my intentional perky oblivion constituted grown-up behavior.

When I graduated from high school, I haughtily believed my maturity had reached a threshold and there was nothing more that could happen to teach me life skills.

Applying to college was a trend, and I did not want to be left out. I also wanted to prove that my disability did not affect my intelligence, so I registered with the college in my town, disappointed my parents wouldn’t let me go to the flashier, out-of-state colleges like some of my classmates. I wanted to study writing; actually, my pompous head thought I already knew a lot about writing since I had more experiences to write from than my peers.

I was exhibiting classic high school conduct because I just wanted to do what everyone else was doing. I see now that my behavior in high school was not abnormal, extraordinary or wrong for the time. But it wasn’t grown-up.

The day I grew up

I had met a vocational rehabilitation (VR) counselor at my last Individualized Education Program (IEP) meeting in high schools. On the day I grew up, she came to my parents’ house to discuss my options for the future.

The counselor explained that, unlike high schools, colleges do not provide personal care attendants to facilitate the commute to and from campus or for assistance in the restroom. She said I would need to find my own aides and, while VR would not help me find candidates, they would fund me to pay my helpers. I would be an employer, managing hours, paying taxes and creating payrolls! However, it was more terrifying than exciting because it was unfamiliar territory.

During the counseling, I became aware of the fact that I was not as developed as I claimed. I took my support system for granted. I was not the only one dealing with my FA for all of these years; my parents were coping with it, too.

I know I was blessed with the smarts to have never needed homework help, but my parents gave me the physical help I required. They were the ones who got me ready, monitored my medications and drove me around to participate in school activities.

In all of my school years, the school system provided attendants to help me with scribing, restroom needs and getting lunch in the cafeteria. I did not have to supervise their hours. My aide, or someone else in her absence, would be at the gate when I got off the bus or car.

It began to sink in that I had taken for granted the worry-free ease of having my parents’ and school authorities’ assistance.

Having a physical disability from a young age made me mature, but it did not make me grow up. Maturity is shown by a positive outlook on life and a calm way of accepting problems in life. The moment of growing up, however, is an epiphany.

I grew up the moment my VR counselor showed me the outcome of my decision to pursue higher education, and I realized that I had never been alone to deal with my disability.

Pinalben Pinky Patel

I did it with help

I did go through college and finish my bachelor’s degree. I had a hard time finding people to be my attendants. Some of the people I hired just would not show up when they didn’t want to work. I was reminded time and time again by the unreliability of aides that without the physical help I received, especially from my parents, I would not be able to achieve anything.

My parents have done a lot for me physically, and I am grateful beyond words for their help. They put their work on hold and stepped in as substitute aides whenever my attendants didn’t show up during my college years. If they did not care for me, today, at age 29, I would be watching TV to keep myself busy in a nursing home.

Ever since growing up and going to college, I am more forgiving to my helpers. I used to complain a lot when something didn’t go my way, but now I let it go sooner. I still complain laughingly, but only to show my needs to a person who may not understand them. But I do not dwell on the matter, and that has made me feel much healthier and truly happier. As a child, I was good at putting on a fake smile, but now it’s a true smile!

Pinky Patel, 29, has Friedreich’s ataxia and lives in Paducah, Ky. Shown here with her parents, Jay and Kay, she enjoys going to movies and restaurants, and conversing with friends through online social media, using Dragon NaturallySpeaking to type. Her website is http://pinkdreams_1.tripod.com.

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