Janira

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I divide my life into different stories. It starts in PA, in Scranton. From as far back as I could remember, I went through really intense bullying. You know like there's different levels? Total emotional upheaval... crying every day, forever, until I was 16. Really 14, because I did two years of High School. “Soon after I was born, my mom knew that there was something wrong with me because, unlike most babies I was not moving my arms or legs. After speaking to different doctors, I was finally diagnosed with Cerebral Palsy and Spastic Quadriplegia, a disability that affects my four limbs, due to a brain injury at birth. There have been times in my life where things got complicated, but despite that, I kept pushing forward to be the best I could be. There are people who think that because I have a disability I need special accommodations for everything or I won’t rise to the occasion, and that’s not true. There are also people who support and believe in me and the things that I can do. I am proud of the person I am, because even with the limitations that I have, I’ve accomplished and done so many things. I graduated high school, ranking #4 out of 100 graduating seniors, and I was the only one with a disability. I have an Associate’s in Paralegal Studies from @laguardiacc. While there, I became part of the Phi Theta Kappa International Honor Society and the Delta Alpha Pi International Honor Society for Students with Disabilities. I graduated from there with a 3.7 GPA, which I am proud of. In 2015, I participated in the @nymissamazing NY Miss Amazing Pageant. Miss Amazing is a pageant that celebrates the abilities of girls and women with disabilities, thanks to them I have grown so much as a person. In that year, I won the title of Teen Queen, and got the chance to represent NY at the national pageant in LA, in which I won 1st Runner-Up. I also participated this year, and I won the title of Jr. Miss Queen. I am now a Senior at John Jay College, majoring in English with a minor in Law. I want to go to law school in the future. For now I would like to go to Colombia Law School and the kind of law I would like to practice is Immigration or Family. When I am not in college, I enjoy dining out, catching a movie, shopping and spending time with family and friends. Being in a wheelchair gives me a unique perspective. I know I am different but I also am able to appreciate even the smallest things. I can see the blades of grass, I can see each petal on a newly blossomed flower, and I can feel the warm rays of sun on my back. I make it a goal to recognize the smallest blessings in life and that, I believe, is one of my greatest abilities. I believe that we all have disabilities, or things that we can’t do. With perseverance and a grateful heart, we can overcome any challenges and find the good in everything. In a sense, many of our disabilities become one of our abilities whether we choose to realize it or not. My mom helped me to see that even with my disability - no not “even with”, but thanks to it - I can change the world with my hope, joy, kindness, and love. So if I had to tell you what I am most grateful for, it is my disability; With it I bring hope to people just by living a normal life. My goal in life will be to help people realize their great potential and the many abilities that they have in spite of any disabilities or trials that may come their way.”

in PA... If I had my way I would've left at 5!

 

My two years of high school were better, but it was still a tiny school, which was socially limiting, so I didn't really have friends. That's where I got my smarts from; I did a lot of reading. At 16, I moved to NYC. It was totally a new life. I'd stand in my school, which a normal size school and just think "this is real." I was overwhelmed with opportunities and actions and how nice people were. I began to consider it my new beginning. I was always working on myself. I always wanted to be better. I always thought all kids my age saw the world that way, which was true in the city. I was lucky enough to get out of my small box that wasn't that way. I threw myself into everything! I've expanded my network and I love to meet people. I was a total introvert growing up, given what I was going through. Obviously that's changed a bit! Now I love to challenge myself to go to a party knowing no one and challenging myself to meet everyone in the room. That's really Part 1 of the story.

 

Then, Part 2, when I was 19, I got really suddenly struck with alopecia. Basically it's when you lose your hair. It comes in different strains. I was lucky, I had it from age from age 19 - 21, and I didn't completely lose everything. I always felt like I had been through so much before that, but for sure it was the hardest thing I had to deal with. It's also something that now I'm on the other side, I don't take my hair for granted. Any day it could technically leave. You get it suddenly. One day I was in the shower and it was literally falling out. It was getting shorter, but I ignored it, until it started me in the face and I was like "There is definitely something wrong." It's an autoimmune disease. They don't do much research on it because it's not considered medical, which really bothers me. It's totally a condition but its not medical at all, so it's treated with steroids. I didn't want to treat something cosmetic with medical. I felt like if this is what I was meant to get than I accept it, which wasn't easy. It still isn't easy.  I think about it everyday that it could still potentially happen to me.

 

It was definitely the most painful thing to go through. I'm not a shallow person, but I was surprised at how much it bothered me. I'd always kind of hated my hair, too.  I learned that I relied on my external self for my confidence, and I worked hard during that time not to. I went through a period where I didn't tell anybody, and I took off and went to Israel to study during that time. My roommate knew, and I actually took her with me. I'm definitely a private person, I used to not share anything. That's something I want to change. What's the point of having gone through it if it just sits there after? It's a sign of having come out of it, and I feel like I don't have any problem; I don't feel like it makes me weaker. I want to use it to help people. Especially alopecia, now that I've experienced it. That wasn't easy for me to talk about while I was going through it. I have a lot of friends who have it, and I even get emotional over them going through it. They live all over the world, and thankfully we aren't face to face when we catch up. I know how hard it was for me. 

 

I did extensions for a while. When I'd go to a party, I'd always pray some wouldn't pull my hair or touch me in the wrong way, because my extensions would fall out, or there was always that one friend who was like "oh, what'd you do to your hair?" so loud that the whole party could hear... I could tell you so many stories! Really, it shouldn't be anything, it's just hair, but unfortunately in the world we live in, for 19 year old girls it is. Then it got really bad where I needed to wear a wig, and it took me a long time to get used to that. I really never did; I hated it.... Going away was awful. I preferred to do my hair in my own space on my own time.

 

I wish I had more pictures. I didn't take many while going through it, and I kind of knew I would regret that. I don't know if I knew I'd get my hair back, but I knew I'd regret it. I took one or two, but I was so uncomfortable I couldn't ask someone to take the picture, even my own family. I told my sister, my sisters are like my closest family, but even them. I didn't share more than I wanted to. 

 

Now once in a while people will compliment on my hair, and I'm like "If only they knew!" (TIA loves you and your hair, Esther!). 

 

And then I would say Part 3 is still occurring. I feel like its lighter compared to the rest. I used to be like super unhealthy and overweight until not so long ago. Over a year and half, I lost 25 lbs. just by eating healthier. I did Whole 30 and then never went back. I started working out with a trainer. I always wanted a super healthy life. I worked first on my emotional health, and then it got  o a point where I felt like my outside didn't reflect my inside. 

 

I feel like all those years I had to start at the bottom. I work in social work and I volunteer. It connects me to what I've been through in a very therapeutic and healing way. I just love it; that's what led me to get my social work degree. I want to be involved in helping capacity, in some way, all the time, always.