My name is Joania Hernandez. If you google my name (spell it right or you get strippers XD) the first two images will be of me at birth and after MANY surgeries. I am fifteen years old, and my first surgery was at 3 days old. That’s right, three days.
When I was born the doctors realized I had both a bilateral cleft lip and palate that extended all the way up to my left eye socket and halfway up my right cheek, and severe lymphedema in my right hand. In the post-surgical image, you can see that my hand is extremely swollen. It still looks like that today, and I have a chronic disease in my right arm known as Edema, as well as no feeling of temperature whatsoever in the hand and limited feeling.
The moment I was born, I was placed in an ambulance and rushed to the nearest craniofacial center. My mother didn’t even get to hold me. My father made the choice to follow me, rather that stay with my mom who had just gotten a C section. My mom WALKED out of the hospital and demanded to be taken to where I was, even though I was at a hospital two hours away by this point.
Since my birth, I have had 20 surgeries. My 21st Surgery will be roughly a year from now. I got another hand surgery six weeks ago, as you can see in the last image. To all the insensitive pricks out there, no I did not attempt suicide. No I do not want to die. Despite how much you want me to, I will not go kill myself. This does not define me.
My last surgery was to fix my hand. All my life my paents have trained me to be strong so the burden of the bullying I was sure to recieve would be less. I took it to an extreme. About 7 months before my surgery, I began to develop extreme pain, spasms, and numbness. This continued up until about 2 months ago, when I completely lost feeling in my hand after a bad fall during a soccer game. Two weeks after I lost all feeling, my cover was blown. I didn’t want to say anything because my family life wasn’t (and isn’t) exactly the best, and I didn’t want to be an even bigger burden than I already was/am. I had my hand extended on a table, and was looking the other way. My dad dropped a glass of water on my hand by accident, but since I had my headphones in and was looking the other way, clearly I didn’t notice. He freaked out.
Immediatley we called my best friend’s dad, who is an esteemed hand surgeon. Two days later I was on the operating table with no preparation whattsoever. A vertical laceration on my inner wrist (where a person would cut if they wanted to commit suicide, thanks doc) and a ‘Z’ on the back of my wrist. Turns out the cause of my pain was the fact that scar tissue doesn’t grow. The last surgery I had gotten on my wrist was at the age of four. I almost lost my hand because I didn’t get any surgeries (on my hand at least) for eleven years. The scar tissue was the same size at the age of fifteen as it was at four. The issue would have come up earlier, except that since I don’t have a functioning Lymphatic system in my hand, my growth there is much slower. The scars that were already there acted like a tourniquet and basically backed up the nervous system.
Now here is my point; DO NOT TRY TO BE STRONGER THAN YOU NEED TO BE. It is ok to complain if it hurts to play piano, take a test, tie your shoe, or hold up a can of soda. It is ok to say “enough” and tell someone when something is bothering you. I almost lost my hand again because I refused to be seen as weak. Don’t do that.
Here is the “bullying highlight reel” as I so kindly put it. These are all things that have actually been said to/asked to/yelled at me.
-Did your cat scratch you?
-Have you looked into makeup?
-Damn, what the hell happened to you?
-Did a chainsaw fall on you?
-Did you get attacked by a bird?
-(Actual rumor at my current school) “Oh scargirl? She totally got attacked by a cheetah in Africa as a baby.” (Are you that dumb?)
-(Rumor at my old school) she melted like a candle
-You’re suck a f***up, you couldn’t even be born right!
-Hey Scarface! Where’s your little friend?
-Bet you’re a sucky kisser
-Why is it so uneven? Couldn’t they have fixed you better?
-Will you ever look like Megan Fox? (<– MY BOYFRIEND SAID THIS.)
-Your parents are probably ashamed of you.
-Did your parents die in the fire? I bet they’re happy they don’t have to see you again.
-you’re an abomination. (Old church)
And lots more. However, the most “scarring” experience (see what I did there?) was most definitley what happened to me just 1 month ago at my community service summer camp.
We were working at a summer camp for children, adults, and elders with special needs. I was standing in a cafeteria with some camp friends, when I felt someone tap my shoulder. I turned to find a special needs woman pointing at me with a shaky finger saying “Satan spawn! Anti Christ! Kill it!” She then turned and ran away. I thought it was over, but no. She came back with two MORE women, and elderly man, and a child. They all started saying horrible things, like “kill it, doesn’t deserve to live, it’s not human.” I proceeded to walk away and act like it didn’t bother me. THEY FOLLOWED ME. Eventually, (after about 5 minutes of this) one of the women went into a panic attack. I was escorted outside and told by the manager of the special needs camp that my appearance was disturbing the residents and I had scared two into panic attacks and the rest were getting rowdy, just because of how I looked. She didn’t apologize, or make any other comment except for “please do not re-enter the building until your camp leaves.” I sat outside, alone, for 2 hours. With all those hurtful things circling in my head.
Life is not easy for people with birth “defects” as the doctors call it, but I prefer “differences.” I am not a defective product. There is nothing wrong with me. We don’t always need to put on a brave face, but I can’t seem to figure out how to take mine off. Maybe this is step one.
For a video on my story, find me on YouTube at @jxaniaa
Somehow I leave tommorow night for college, and set up my dorm and say goodbye to my family on Wednesday. How did this happen? Like, I still feel like a kid. Woah, this is insane. It’s still not real, but I’m not sure how I feel about this all. I’m starting to lose some of my excitement. I think the three-five hours of sleep and none stop shopping definitely doesn’t help though… I’m so tired. I’m still really kinda freaked by the fact I turn twenty in February. I still feel like a fifteen or sixteen year old. (I look like a twelve to thirteen year old…) Life is so weird. How does it even go by so fast?!
Dionysus, Athena, Hestia, Odysseus, Vespasian. Pick and choose if you must.
Sorry this took me so long. And before I get too much further, I should probably mention that Tumblr user patternsinnoise is my boyfriend.
Dionysus: what is your happiest memory in the past year? WE LIVE TOGETHER. Other than moving in with you, I have to say, going to Philly with you was pretty great. I love travelling with you and we need to do it more. Also our new year’s party was amazing and I am so proud of us. Basically, I like partying with you as well and living with you.
Athena: if you could tell your fifteen year old self anything, what would it be? So many things. God. Ugh. Probably, more or less in order: don’t go out with him; don’t hurt yourself; your parents will still love you if you disobey them; wine is not as bad as you think it is.
Hestia: what does your dream home look like? This one is hard to answer, largely because it depends on whether or not I’m in the country or the city. Common features include large windows, generally cold and moist climes (the environment is very important to the place being ideal), lots of old furniture, bookshelves, long curtains, trees, cool ceiling details, beds, pots of herbs, and probably a dog. I actually have an entire tag for this, and spend an ungodly amount of time thinking about it.
Odysseus: where have you felt most at home in your life? Probably… Oh man, I don’t know. I love Paris. I feel very at home there. Realistically, I think one of the other cities in northern France or Belgium would probably be my jam. Lille is beautiful, and Amiens is a lovely place. I guess I feel very at home in France in general, though. I would dearly love to live there again. But that might just be because I’m not there now.
Vespasian: who is your problematic fave? Man, I love Coleridge. I love his poetry. I love his life. So problematic. So wrong about Measure for Measure. I just love Coleridge so much.
My first impression of you was kind of like “who the fuck does this pretentious asshole think they are” but in a six year olds’ point of view and speech. Yeah, I was really offended that you actually read the books in the beginning of first grade and didn’t just look at the pictures, like the rest of us.
2. Truth is:
You’re literally a total fucking loser, but you’re really cool to hang out with and shit, like lunch periods were always an adventure. Still, though, fuck you for not letting me buy those freezies.
3. How old do you look:
Literally seven. No, uh, I’d say probably fourteen or fifteen. Like, I’d say thirteen, but your face doesn’t look thirteen, so.
4. Have you ever made me laugh:
No, your humor sucks. Kidding, yeah.
5. Have you ever made me mad:
6. Best feature:
Your hair and your eyes are pretty dope.
7. Have I ever had a crush on you:
8. You’re my:
Homie?? Leople momchild??
9. Name in my phone:
Echo. I’m pretty sure it’s just Echo. I’m not creative, oops.
when i was little i always wondered why my skin was darker than my siblings’ or why my eyes were darker. i always knew i was different i just had no idea why until one day my mom told me that i had a different daddy than my brother and sister. that’s when things started coming together. why i was darker, smaller, brown eyes and a round nose while they had lighter skin, they were both taller, and they had green eyes. i wanted to know who you were and my mom and i would fight over whether it was an appropriate time to tell me who you were and what had happened. when i was about fifteen or sixteen she told me our story and how i came to be but, she still refused to tell me who you were. i wondered for years what you looked like, how you acted, what you sound like. i used to dig around old photo albums hoping i would just know who you were once i saw a photo of you. i never did. when i turned eighteen my mom decided it was time. she told me your name, she showed me pictures of my three brothers and then informed me of the funeral she had went to was one of those brothers. i cried that night knowing i would never be able to see him, hug him or know him. after my mom gave me all this information i started to search and tried to find you. i wanted to know you were alive and well; i wanted to know that you cared about me and wanted to know me but, none of that matters anymore. from what i hear you are a great father to the children you and your wife have together. although you were never in my life you impacted it greatly. i learned what it is to struggle and how to overcome that struggle of being different. i learned to be a powerful woman from the amazing ones that raised me. i learned from multiple male figures in my life instead of just one. they all taught me how to stick up for myself and how i want to be treated. i am who i am today because of the way my mothers raised me and i wouldn’t regret a thing. i was never meant to have you raise me and that’s okay. i will still love you as much as i can since i have never been in the same room as you. you are and will always be my father. i always would dream of the day i would meet you and it’s surreal that that day may be closer now. i hope to meet you one day whether our relationship works out now or not that is okay too.