Hello everyone, My name’s Selma & this is my memoir:
To live a perfectly normal life is practically impossible. No one, absolutely nobody, can be normal. From the kid that lives with a scar on his arm, to the boy whose burns haven’t healed since childhood, to the one girl that had her appendix removed when she was twelve, and to the little boy that lives in a bubble, because even a minor cold could end his life. You’re no exception, and I’m no exception either.
For the sake of confidentiality, I will not mention my name. What I will mention is that I am an atypical 16 year old teen that lives in a world of words & thoughts. I love reading; my favorite author is John Green. I love music, specifically EDM-style genres– Trap, House, Drum-n-Bass, Drumstep, et cetera. I go to school (well I used to, COVID-19 kinda ruined that) and I’ve always been that one student that always raises her hand to answer a question, open to everyone around her, bubbly, simply a chill, happy person that also writes poetry, a behind-the-lyrics meanings nerd, & averages a 3.7 GPA.
“To live a perfectly normal life is practically impossible”
Well, I mean, I’m sure there’s a ton of people in my generation with the same qualities & interests. Still, I am ultimately positive that there’s two facts about me that not many people my age would relate to. Well, maybe this first one is a lot more common.
I am legally blind, or in more “scientific” terms, visually impaired with a scale vision from about 15/200. For those of you who don’t understand how poor vision works, basically, even if I stood right in front of you, I still wouldn’t know what your eye color is (sorry). Also, it wasn’t until recently that I figured out that humans actually have these tiny holes on our skin called pores (7th grade biology really can teach you life-lasting information.) I can’t drive, which I agree is completely logical, since I have destroyed countless cities in every driving video game there is anyway.
My apologies for all my jokes, but seriously, I can’t see. People always say “you can see me though,” or “you can see where you’re walking.” First of all, I actually can’t “see” you. How do I put this? When I’m looking at you, I basically am looking at the CGI video game version of you. A plain face, with two eyes with dark pupils, lips, hair type & color, skin color, & body type–that’s it. If you’re wearing makeup, I will not notice. Even with people I’ve known and lived with my whole life, sometimes I can’t recognize them either. Imagine my embarrassment when during the fifth grade, I went and hugged my friend’s mom thinking it was my mom after school. Sorta awkward, but we all had a good laugh.
Speaking of school, even if you were to put me in the first row, I would not see the board. Ever since 3rd grade, the only way I can ever see ANYTHING on the board is by zooming into the board with a tablet’s camera. Still, even the best cameras can’t detect faint green & red markers. Or that one kid, whose hair just blocks the board entirely. And me, being the “I don’t want to disrupt the class” type, only being able to say “e-excuse me… your head… can you like, yknow, move it…?” In the end though, all of my teachers & fellow students have always been very accommodating & understanding.
Being legally blind does put you in “fun” situations, fun as in “awkward & completely humiliating” situations.
“Let’s talk about eye contact; I have no clue what that is”
Let’s talk about eye contact; I have no clue what that is. Everyone has probably been in that situation where the teacher asks for a volunteer & the whole class avoids making eye contact to not get picked. As for me, I stare at the teacher, not even knowing the crime I’ve unintentionally committed.
Or those times where someone I know waves at me from a distance, I am looking straight at them from a distance, but cannot really notice who they are, let alone see them waving. So it’s a bit awkward for them since they’ve waved,and I’m just staring right at them without ever waving back…
Moving on—
You have probably wondered: how did she become legally blind? Maybe a birth defect? Injury? Disease? Well, to answer that, I will have to tell you the second unique fact about me.
Let me explain this as smoothly and quickly as possible (without sounding painfully boring). Ok, here we go.
I was born with a rare genetic disease called HSAN type 8. Basically, HSAN stands for Hereditary Sensory Autonomic Neuropathy. In short, that means I have an insensitivity to pain. My arm could be casually laying somewhere near the stove, and I wouldn’t even notice until I’d see the burn. Or, while most kids would cry after falling off their bikes
& scraping their knee, I would not cry nor react until my mom notices some bruise or inflammation, which could either be minor or could lead to a tripto the hospital. I know some people would see this as a superpower, but I hate to break the news, it’s not. Worldwide, there have only been around 300 known cases of the condition itself ranging from type 1-8.
Now, how does my visual impairment have anything to do with me not feeling pain? Well, it is common for children with my disease to have corneal issues during infancy. The cornea is the transparent layer that covers your eye to protect it from bacteria, infections, etc. It is responsible for about 60-70% of the ability to focus your eyes.
Basically, as kids that don’t receive a brain signal of what pressure is enough when rubbing our eyes, we end up scratching our own corneas with our tiny little fingers. And, when your cornea is scratched, your vision gets really damaged and you become legally blind. Furthermore, because we’ve ruined the guards to our eyes, doctors sew our eyelids 70% shut to limit eye infections, dust, bacteria, etc. from entering our eyes. They close off the castle because the guards aren’t there to protect it.
Along with my visual impairment, I am toothless. And, no, it is not a Gaten Matarazzo situation where my teeth haven’t developed. On the contrary, they did, but due to having weak gums, they’ve all fallen out besides a few on my bottom mouth.
So, to the awesome, less painfully-boring part, how does all this affect me personally? Socially? And emotionally?
Well, I can say that it definitely isn’t something I’d ever wish on anyone, like ever. Still, I never felt different from others, I’ve always had a pretty good, stable self-esteem & have always been self-confident as well. Just like most teenagers, I have had self-esteem shifts, but my parents raised me in a way where I never felt different from others. I also really enjoy being unique & different, because aren’t we all?
Sure, at a young age, I did have a difficult time making friends. Even though I’d always make the effort to introduce myself & join in, the other kids would only ignore me. But who am I kidding? They were all just little kids that didn’t know any better. Interestingly, I’ve never been bullied harshly. Kids would either ignore me, be low key friendly, and there have been a few occurrences where I have endured verbal insults. I changed schools a lot, always trying to find a better environment than the previous one. It wasn’t until the 4th grade that when I made my first friend, that is, to this day, still my best friend. The school I attended in the fourth grade genuinely helped me get out of my shell, since in previous years I was usually always quiet & pretty depressed, mainly because no one would just treat me like a regular kid. I remember a girl ran away from me in
the 3rd grade when I told her I had a disease because she thought it was contagious, or that one girl that was telling a few other kids that my future kids will look as “ugly” as me. When I think about that now, it genuinely makes me laugh. 8-year-olds really don’t understand how genetics works, huh? ‘Cause I was born very pretty since both of my parents are actually quite good-looking. Well, besides that, brains & a good heart override beauty any day.
Going back to our main topic, fourth grade was when I experienced my first of many paradigm shifts. We had a small classroom capacity which was really nice;probably a total of 7-9 students in our class. I felt completely accepted by all the students, who very soon became my friends. Even the teachers were kind & caring individuals. I remember when I used to despise poetry, and I will never forget what my 4th & 5th grade teacher told me. She said,”I have a good feeling you’ll change your mind as you get older.” And here I stand now as an avid writer & poet that has written an epic consisting of 137 pages.
Anyways, I remained at that school up until the last year of Elementary school, followed by going to the same middle school as my classmates. I made many more friends that I still am in touch with to this day. I stayed for the 6th and 7th grade then left to attend a private school during 8th grade.
Now, let me get into a few details about middle school. The older I got, the more my vision bothered me socially. For example, I’d hear my friends giggling about something they were looking at but I couldn’t see. Even when I’d ask them what was so funny, they never really knew how to explain it & sometimes it could be something a bit awkward or embarrassing to really repeat. It’s a “you really had to be there” thing, where in my case, it was a “you really had to see that” moment.
Even so, I rarely ever felt left out & all the girls and boys respected me & I honestly could say I was pretty popular in my class of 23 students. My friends & classmates would often ask me for advice, confide in me with secrets, & showed that they really enjoyed my presence the same way I’ve always enjoyed theirs.
I had my own group of friends, we sat together every single day during break, always at the same round table on the right side in the same exact seating.
I’ve always been a solid straight A student. Still, my least favorite subject has always been Math, but I seem to enjoy Geometry (somehow.) In science, I’ve always enjoyed human biology & psychology, which I continue to study during my free time. But the subject that I not only excel at academically but I love so much is: English literature.
I love books– Memoirs, Teen Fiction, Graphic Novels, Juvenile fiction, etc. are just a few genres I very much enjoy. Swallowing one book after the other became a habit for me.
You may be wondering, How could she read traditional books when the average font size of books is very small? Well, to answer that, reading was always somewhat a struggle for me. For me to read anything, my face has to be very close to the page. The figurative saying “your nose is always in a book” is very literal for me.
There are lots of differences between how I’ve lived everyday life since I was a kid from others. For example, I couldn’t participate in many sports for two reasons: one, I could never see the ball, & two, I’d get injured. I’m not the best at swimming & did 2 years of wheelchair basketball which I lowkey enjoyed. As a child, my mom rarely ever let me play with sand on the playground because it’d damage my eyes, since I don’t have the knights guarding the castle entrance of my eyes. I burn myself because I can’t feel pain, either by accidentally drinking hot milk, or just trying to heat something on the stove. I can place my arm right at where a boiling pot could be & I’d have no reaction. I barely ever notice burns. I can’t feel any temperatures of liquids when I touch them. So, before I shower, my mom needs to adjust the right water temperature. I feel if the water is warm or cold once it washes over me, but I don’t when testing it out with my hands. Due to all these aspects & being prone to injuries, I spend a lot of time at the hospital, which also contributed to why having full-time friends & hanging out has always been very limited.
“I come across as totally confident & so tough & doesn’t mind what fate has bestowed me with, but I do. I am human after all”
Moving on, I successfully completed middle school & found myself in high school quite fast. I did change schools after the 7th grade & graduated middle school at a private school where I experienced & learned a lot, in positive & negative ways, but mostly positives. I made 3 awesome friends and made amazing memories with them. But, all good things come to an end; high school eventually came & we all went our separate ways.
Going into high school opened up new advantages. I hope for the next couple years I will finally get my eyes reopened & have teeth surgically built into my mouth or have removable dentures. As long as I have teeth, I don’t mind either method. As for my eyes, sadly, there’s a high chance I’ll always forever be legally blind. I do not want to risk having a corneal transplant, it can either cure my vision or end in permanent blindness.
I know that through this personal essay, I come across as totally confident & so tough & doesn’t mind what fate has bestowed me with, but I do. I am human after all. There are a lot of things I feel people do take for granted; being able to see is a huge blessing. Being able to feel pain is an even grander blessing. Just walking around & not being treated differently in any way is a dream come true for me. I still am a typical teenager. I may not be seen as normal or average, but come on, who wants to be “normal” or “average”? I sure don’t. As quoted from Wonder, ”You can’t blend in when you were born to stand out,” and that’s very true. I can’t change the way I look, but others can change the way they see (that is also a quote derived from Wonder.) I know not everyone can make that change, but is up to me and everyone else that can relate to being treated differently to educate others. People will stare, they will, but I learned to smile right back. Smiling back is an indirect way to make the person second-guess their reason for staring, & realizing that it could’ve come off as rude, or to be honest, kinda creepy.
There’s two types of people in this world. One being the people who are very kind & understanding, but don’t know how to make a disabled person feel comfortable Then there’s the other type that no one wants to come across, the ableists, people that purposely make disabled individuals uncomfortable because they feel that we are inferior to them. I find these people downright unacceptable. Still, I believe that seeing the best in people is the way to go. Take that stare as a curiosity. “They’re just curious is all, most likely they’re just interested with positive intentions”, I’d think to myself.
We’re all different people with infinite fractal experiences & no one’s life can compare to another. No one has the right to judge someone else for something they can’t control. Even if I ask the world to be kinder, the unkindness of this world will still remain. But I believe that instead of ridding the world from villainy & treachery, we should amplify the goodness of this world & create more opportunities for all the kindred spirits of kindness to take rule & weaken the wicked.
I’m blessed to rarely ever come across any negative people, but I know there are tons of awesome individuals that can’t say the same. Therefore, it is our obligation to spread kindness & purity throughout society.
“No one has the right to judge someone else for something they can’t control.”
I have so many dreams that I need to make come true. I want to become a literary expert, study psychology, & help others. I want to fill the world with positivity & hearts with pure compassion, pursue my passion of words, & use every one of them to create a better environment. I may not be able to help the world, but saving someone from emotional discomfort is as brilliant as mending their physical heart, because I’d be tending to their emotional heart.
I may not be able to drive a car or do gymnastics. I may not have the greatest social skills because of my poor vision. I may not have the greatest freedom every teen dreams of when they become an adult. I may not be able to be the greatest teacher. I may not meet “social standards,” but that’s okay. That’s actually more than okay. I am happy with who I am & excited for my future. I may have to find different ways to do ordinary things, but I’m looking forward to the adventure! I have my ride or die family & friends that’ll be there for me every step of the way.
One final thing to remember is, “It doesn’t matter who you are, we’re all going to have differences & it is our duty to ourselves to embrace them” -me. Being different is a blessing.
“It doesn’t matter who you are, we’re all going to have differences & it is our duty to ourselves to embrace them”
I’d like to take the time to acknowledge all the amazing people that helped me revise this personal essay & supporting me the whole way. To my mom that has sat down & let me re-read it to her multiple times, suggesting ideas, & helping me remember events & just being very supportive. My dad, who always encourages to ask him if I ever do need anything & being supportive as well. My English teacher Ms. Zitney & former English mentor, Ms. Aisha, for reading & giving very insightful feedback on ideas & correcting grammatical errors—they were very helpful! To my friends who re-read it multiple times, gave suggestions, edited simple grammar I missed, & the supported me the entire way through. I can’t thank all of these amazing people enough & it wouldn’t have ended up to be such a remarkable memoir without them.