“I was never afraid of the dark until I turned sixteen.” Celine Scarlett, who goes by “Scarlett” is a junior at the Illustrious Clark Atlanta University. Scarlett is a Fashion Merchandising major all the way from Brooklyn, New York. At the age of sixteen, she began losing her vision to an idiopathic illness that left her with optic atrophy. Scarlett tried a series of medicines and multiple holistic approaches. After two misdiagnoses, she was diagnosed with neuromyelitis optica also known as Devic’s Disease. Years later, Scarlett has found a doctor that could potentially restore her eyesight and she is working to raise $30,000 to be able to receive the surgery. Her Campus CAU caught up with her to talk about her journey and why she is so determined to not give up.
HC: Can you tell me a little more about you?
S: I was born in Brooklyn, New York. I’m from Bedstuy and I moved to Georgia when I was 15. I have definitely always been into fashion. Early on in high school, I was apart of a little modeling club and things like that. Being from a city known as the fashion capital, and seeing all the Jordan’s and True Religion products and that I was not able to have helped me figure out what I wanted to do.
HC: How did you lose your sight?
S: I had just turned 16. I remember waking up and my vision was blurry. I had always worn glasses, so I just thought I needed to update my prescription or something. At first, the doctor was telling me that he couldn’t see any changes, but I could still tell that my vision was blurry. So, he took a picture of my eye and saw swollen blood vessels. He then referred me to an ophthalmologist. They did an entire test and the issue was not my cornea. My eyes were fine. I was referred to a neurologist because I was told the issue was my brain. I did an MRI that revealed optic nerve inflammation. I was given medicine but I discharged shortly afterward because there was nothing they could do. My sight had gotten worse and it got completely black for a while. I went to the ER and they told me I had conversions disorder. They gave me anti-inflammatory steroids which did not help. My senior year of high school, I was paralyzed and I collapsed one day as I was walking. I was misdiagnosed with multiple sclerosis and optic neuritis. They did another MRI which showed inflammation on my spinal cord. That’s what brought them to the diagnosis of neuromyelitis optica.
HC: You mentioned the doctors not believing you, did you have that same problem with your parents?
S: Oh no. My parents hurt just as much as I do. I remember after I got a spinal tap I was not able to see my mom’s face but I felt her tears falling on mine. It’s emotional for the whole family. I used to be the big sister and now my little brother and sister are helping me find a toothpaste cap that fell on the floor. I’m sure they hurt as much as I hurt.
HC: What are the stigmas you face being blind?
S: People either love me or hate me when they hear about me. As far as stigmas, if I don’t have my stick in my hand I don’t usually get any help. I don’t think I really have stigmas because I don’t get them told to my face. But I do notice a difference in the help I get based on clothes I wear. It’s all about who I encounter. I had a friend that I met freshman year when my sight was better. By the time I came back to school, my eyesight had gotten worse and she started telling people that I was “fake blind” and manipulating people for help.
HC: You went blind at sixteen so you still remember what it was like to see. What has been the most difficult part of that change, for you?
S: The most difficult part is every part. I’m growing up. I got a compliment on my eyelashes today but I kind of forgot what I look like. My mom and dad are getting older and I have two younger siblings. Self-reliability and independence are probably the hardest to deal with. Going from being a go-getter, someone who is constantly moving, to realizing how much help I need now has been a big switch in my life. It’s been four years now, and the first two years I still had enough sight to feel normal. But this, this blur, where I have to hold someone’s shoulder to move around is hard. I’m just trying to do everything that a young person would have to do to stabilize their future but I feel like my future is not in my hands. I was a dreamer in New York City and I have a “look” so I could have been at the right party and gotten the right opportunity. Now I can’t see so I don’t go to those parties. Now that I can’t see, I don’t raise my hand for those opportunities.
HC: So, you’re raising money for a stem cell surgery that will restore your eyesight. After going through everything you went through, what has the process been like to find a doctor that can help you?
S: Frustrating. You’d think America would have it all in 2018 until it hits you when you need it. The attitude that everyone had because I was such a peculiar case was very disheartening. I even ended up traveling to New York City to see doctors who I thought could help me. I honestly was always afraid when someone told me they could do stem cell surgery because it’s not something that is solidified yet. But, finding this facility gave me a sense of renewed hope because everyone else seemed to not know what to do.
HC: Can you explain the surgery and what it’s going to do for you?
S: They’ll basically put me to sleep through anesthesia. Then they’ll inject stem cells behind my eyes. This will lead to nerve growth and regeneration. It will repair and cause new cells to grow in my eyes. The surgery takes a few hours and the recovery time is sixteen days.
HC: What are you scared of going into the surgery?
S: I’m only scared that it won’t work. I’m fearful of how angry I’ll be if it does not work. But I guess I’ll have to get over my anger and find some more faith to keep pushing. I’ll keep looking for an answer.
HC: What will having a successful surgery mean to you?
S: Honestly, I’m going to make sure my career takes off to the fullest extent. I want to come back to Clark Atlanta and get some better disability services here. The system that’s in place is terrible. I feel like I’m gonna mess around and become an advocate, honestly. Right now, I feel like I couldn’t handle the world’s burdens and my own. But yeah, if I get my sight back, put my name right under Helen Keller’s or something.
HC: You recently put on a party to raise money for your surgery. What was your reaction to the AUC students showing up and supporting?
S: It was surprising to see how much of a turnout was able to happen so fast. Now I feel like I have more friends. For all the people who have seen me and did not believe me, I’ve bumped into five more people who were at my party and tell me I’m gonna be fine. I just appreciate all the love that’s in the AUC.
The $30,000 Scarlett is raising will cover the stem cells needed for the surgery, the surgery itself, and her travel expenses. Donate to her efforts at https://www.gofundme.com/SaveScarlettEyes