“My story begins in April of 1996.
My mother had a pretty typical pregnancy with me. Nothing was out of the ordinary or strange. There was no indication something was wrong. To my parents’ knowledge, they had nothing to worry about. Little did they know, they were in for a lifetime of surprises.
The first, of course, was that I was a girl, because they were positive I was going to be a boy!
Shortly after birth, I started to present as lethargic, floppy, and overall, just weaker than a typical newborn. Obviously, this was very concerning, especially to my mom and dad. For the next few weeks, my parents and I lived at the hospital until I was stable enough to come home. In the meantime, doctors ran several different tests, trying to find a diagnosis. Everything came back negative. I was my parents’ first child, and they were just learning how to be parents to a new baby. Now they would also have to learn how to be parents to a child with a mysterious medical condition.
The first two years of my life were quite exciting. My health was pretty unstable and my parents and I spent a lot of our time running back and forth to the hospital. Every few weeks, I would end up back in the PICU with aspirated pneumonia or other respiratory illnesses, and it would take me weeks to recover. I was also considered ‘failure to thrive’ because I wasn’t gaining weight. Because of this, I needed an NG tube (a feeding tube that goes from the nose to the stomach) to get the proper nutrition. When I was able to go home, my parents would put the tube down into me every night and take it out in the morning. Let me tell you, this was no easy task and took tons of patience.
On my first birthday, my parents, with the advice from my doctors, decided it was time for me to get a g-tube (a feeding tube that goes directly into the stomach). After getting the tube, I was able to gain and maintain a healthy weight and I was no longer considered ‘failure to thrive.’ Even still, I was in and out of the hospital with pneumonia. So, on my second birthday I needed to get a trache (a tube placed in the throat area providing an alternative airway to help me breathe), and ever since then, my health has been stable, besides a few hospitalizations over the years.
It was sometime between those two birthdays when my parents finally got my diagnosis. I have a rare form of congenital muscular dystrophy called Nemaline Rod Myopathy (NM). NM is a genetic condition that affects all of the skeletal muscles. What this means is that the muscles I use to move my body, to breathe, talk, and eat, are extremely weak. This also means I rely on a wheelchair to get around, a trache and vent to help me breathe (although I am not vent dependent), a g-tube to eat, and other people to help me live independently. NM is not a progressive condition, so my condition is not going to get worse over time: in fact, it’s very possible that I can get stronger.
The cool thing about NM is that the people who have it are all so different. Some are like me, while others can walk and don’t have any difficulty speaking or eating. Unfortunately, NM is so rare that it doesn’t get any public funding, so all funding for research comes purely from donations.
Growing up with NM gave me a unique perspective on life. My parents never treated me any differently than any other child. It wasn’t until my brothers, Sam and Jack, were born that I started to question why they could do things I couldn’t and realized I had differences. I wondered how they were able to crawl, and why they didn’t have any machines hooked up to them. I was never envious of their abilities, though. I was just aware that I couldn’t do all the things they could. It never really mattered to me, and I think it’s because my parents treated us equally. I got in trouble as much as my brothers did and I didn’t get any special treatment…well, maybe from my dad sometimes, but that’s beside the point. My brothers and I had that typical sibling relationship. The laughs, the games, and, yes, even the arguments. They treat me as their sister. Not their sister in the wheelchair, just their sister, plain and simple. They’re my best friends, and I honestly can’t imagine what my life would be like if I were an only child.
When I was four, I started going to school. As you can expect, my schooling experiences are quite unique. From Pre-K to 12th grade, I attended The Henry Viscardi School. This was your typical school in every aspect. The curriculum, the teachers, the students, the friends, the cliques, and even the middle school gossip and drama. Except for the fact that everyone who went here had some form of physical disability. When you go to Viscardi, you become a part of a huge family. I met some of my best friends there, most of whom I am still very close with. Viscardi felt like a second home to us. It was a place where none of us saw each others’ disabilities. We didn’t care if you couldn’t walk, couldn’t speak, or couldn’t move your arms. We even helped each other at times, like when I couldn’t reach an itch I had on my head and my friend, Jess, scratched it for me. That’s the kind of relationship we had.
There was a brief time when I first started college that I resented having not attended a public school, as I felt as if I missed out on a lot of social and academic experiences. However, I am grateful for the experiences I had at Viscardi. Being around so many different people who had so many different disabilities made me confident and comfortable in my own skin, and helped shape me into the person I am today.
When I started attending Hofstra University in 2014, I was excited and ready to take on the world. It didn’t take me long, though, to realize college was NOTHING like what I was used to. For 14 years, I saw the same people day in and day out. I hung out with the same group of friends, I didn’t have to worry about impressing anyone because they already knew me, and no one cared that I was disabled.
Now, I found myself at a new school with over 10,000 students with no friends, and the first thing people noticed when they saw me was my wheelchair. I felt so out of place. I tried to go out and meet people, but I wasn’t clicking with anyone. I realized that, in the years I spent at Viscardi, I never had to go out of my way to make people like me and want to talk or hang out with me. I basically had to reteach myself how to introduce myself to others the way I want to be seen. Appearances matter, but they matter even more when you’re disabled. People already judge us prematurely and make assumptions of us just based on the fact that we’re disabled. So, in my mind, if I appear how I want people to see me, they will see me like that, and what I want to be seen as is the smart, fun, makeup-loving, humorous, and sometimes sassy (in a good way) boss babe that I am.
It took me a while to come to this realization and to become comfortable in my own skin again at college. During my junior year, I took it upon myself to stop being afraid that people wouldn’t accept me for who I am. I had a fear that, after four years of college, I would leave with no friends. So I started putting myself out there again and ended up joining a sorority. The decision to join completely changed my college experience. I felt as if I finally found my place and my people at Hofstra. In December of 2018, I graduated with a bachelor’s degree in public relations.
The months after graduation were a bit of an emotional rollercoaster for me. Not only was I adjusting to post-grad life, I was also trying to find employment. I knew finding a job was not going to be easy. It’s hard enough for people who don’t have a disability to find one. But for people who do, it’s seemingly impossible. For almost a year, I went on countless job interviews, most of which were in NYC, which is ultimately where I want to end up working. I can’t tell you how many interviews I went on and when they saw me, the whole vibe changed. It’s as if they assume I’m not qualified right off the bat, even though in reality, I’m more qualified than most of the applicants. I’m not sure if it was the environment of the places I was applying to, but I felt as if whoever they hired had to have a specific ‘look.’ I realized that I don’t want to work somewhere where everyone looks the same, and I would be judged by the way I look, not by the work I contribute. I ended up settling for an unpaid internship. I figured since I wasn’t successful in finding a real job yet, I might as well get some experience. Obviously, my internship surrounded around PR/marketing, since that’s what my degree is in, and I was absolutely miserable.
However, I was also exposed to a different type of work: grant writing. It didn’t take me long to fall in love with grant writing. It was as if I had an epiphany, a revelation, that this was my calling and this was what I was supposed to do. I’ve always said that I wanted a job where I would be helping people, and that’s what grant writing is. I stopped looking for PR/marketing jobs and started looking for a grant writing job. It took a bit of time, but I was finally hired as a grant writer and officially started working in January!
Occasionally, people ask me if I ever wish I didn’t have a disability. The short and easy answer is, yes. Of course, I imagine what my life would be like if I weren’t disabled. I sometimes grieve the life I could have had, and wonder how different my life would be. But the real and honest answer to this question is, no.
Sure, having a disability presents many obstacles for me, but they haven’t ever stopped me from living my life the way I want to live it. The hardest part about being disabled isn’t actually being disabled. It’s society’s view of disabled people and the fact that we constantly have to fight for our rights to be seen as equal.
Being disabled has provided me with so many opportunities and experiences I wouldn’t have had otherwise. Beside that, I’ve connected with so many amazing people over the years BECAUSE I am disabled. A few years ago, I created a blog and started using my social media platforms to share what life is like living with a disability. I also recently started an online shop so I can share my passions with the world, which are beauty and advocating for people with disabilities. It is my hope that I can educate people on issues the disabled community faces daily by breaking down stereotypes and reinforcing the idea that people with disabilities are just as worthy as everyone else. I want disabled people to know they matter, they are beautiful, they are worthy of love, and they are the only ones who control their lives. Overall, I use my platform to promote positivity, understanding, compassion, and love. Without each other, we have nothing.
My life has been far from easy, but I wouldn’t trade it for the world. Everything I have gone through and experienced has shaped me into the person you are reading about. I’m thankful to my parents for never giving up on me and always encouraging me to reach for the stars. I’m thankful to my brothers, who never looked at me any differently. I’m thankful to my friends, for always sticking by my side after so many years, even if we didn’t speak for a few of them. And I’m thankful to you, whoever you are, for reading this.”
This story was submitted to Love What Matters by Rachel Gross from Long Island, New York. You can follow her on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story with us, and subscribe to our best stories in our free newsletter here.
Read about another rare form of Muscular Dystrophy here:
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