Being the Girlfriend with Neurofibromatosis.....

Towards the end of September 2013, I met my boyfriend, Joe. Coincidentally we went to the same high school, only he was a senior when I was a freshman. In fact, the first thing he ever said to me was, "Hey, what high school did you go to?" To which I responded "King," he then said, "I knew I recognized you from somewhere."That one question lead to us talking for almost two hours and then to studying together for Classical Theory. On October 12th we had our very first date, by October 19th we officially began dating.
On October 19th, 2014 we celebrated our one year.

Always and Forever

I guess my bullies were mistaken because I did find love, I found a man that was worthy of my love just like I am of his.
"You are ugly" I would hear from my classmates, and the saddest part was that I believed them. I believed them for the longest time despite having amazing family and friends who did everything in their power to make me feel not only beautiful but also intelligent and admirable.

My family and friends were right all along.  They told me that I would find a man that did not need to see past my NF because he would embrace my NF, and that is what Joe has done and continues to do. Having NF is not easy and being a GF with NF is not easy either. I say it is not easy being the girlfriend with Neurofibromatosis because I still am, at times, very insecure with my appearance and when we go out and about people stare, point, and comment to one another. I am not sure if Joe notices all the time, but I do. Most the time I shrug it off.  I smile and wave when kids glare, but most the time I just ignore it.

Thus far, Joe has not seen me get all worked up and affected by the ignorance of others, and the truth is, I wish and hope he never does. He tells me I am beautiful and perfect. He tells me he likes each and every one of my fibromas every time  I say, " I am getting more" pointing to the fibromas on my body. He pulls my hands off, looks into my eyes and says, " You've always had that one, you do not know what you are talking about." As if he knows my body more than me!

I ask him, "Will you still love me when my body is invaded with fibromas? "His response is, "Stop it! Your body will not be invaded with fibromas. And yes, I will always love you."
Joe is an amazing man that lets me know each and every day just how much he loves me, never letting me forget that to him I am beautiful and will always be beautiful; this took me years to understand and believe.  I say it is not easy being a girlfriend with NF because sometimes I see myself in the mirror and think that I am not beautiful or attractive enough to be someone's girlfriend.

 I look at other girls that do not have a facial disfigurement and think how easy it must be not having to explain why your face looks like it does. I sometimes wonder what Joe has told his family about my NF or if they have even asked him. I told Joe all about NF on our second date thinking that he would either embrace it or take me home and never look back (apparently, he embraced it).
He has yet to see me on the days that I do not like myself. Days when my fibromas look bigger or have quadrupled overnight. Days  I think my eye looks bigger or my face more disfigured. Days I just find every imperfection that in reality is not there.

 He has not seen my self-loathing to the fullest. Although, I have told him how I feel at times and the reason why  I tend to cover the right side of my face with my hair in an attempt to hide my scar and eye. After I told him about my hair and having it cover my face, he reminds me every so often to pull it out and off my face.  He compliments me and reassures me when I do pull it up and off my face. He says, "You have such a pretty face, don't hide it."

Living with an illness, disorder, disease, (call it what you wish) that is ever changing is not easy. I do not know if I will ever need more surgeries or if I will get more fibromas, but I do know that I have an amazing man by my side that will walk with me and hold my hand. Life with NF is not easy, but I have an incredible support system that makes living with NF almost a piece of cake!
 

My Eyes...

 My eyes are hazel, depending on the light they look greenish.
 I've been told by many that the color of my eyes is beautiful, but I never believed them. For the longest time, when I saw my reflection in the mirror I would think to myself, "Pathetic, my face is a waste." I would cover the right side of my face and think again to myself, " Why can't I look fully like this; this is a beautiful face" I never thought I was beautiful because in my shattered mind I did not fit the mold of what was considered beautiful. It took years and being well into my twenties for me to realize just how beautiful I truly am.

My eyes are hazel, depending on the light they look greenish. My eyes are beautiful. My face is beautiful. I am beautiful.

It is completely and utterly disgusting how we allow society dictate what beauty is. Social media has become an enemy that is slowly destroying the lives of thousands of young girls and boys.We are told what beauty is and are held up to the standards of celebrities, models, athletes, and so on. We are told how to get their bodies, skin care, clothes, products, etc. because they are beautiful We must jump onto the bandwagon of beauty.

Unfortunately, we tend to forget that celebrities, models, and athletes, most live up to the standards of beauty day in and day out. They go to extreme measures to make sure they stay a fraction a head of the rest. They have drastic plastic surgeries, spend endless hours in the gym, and cake on makeup in order to fall into the definition of beauty that social media have constructed.

I recently posted a question on my wall on Facebook. I asked my friends to define beauty in their own words. These are the responses I received.

CR: " Beauty is to look at the world and being able to define it in your heart...then share what you saw with your fellow humans with artistic hands..."

MR "Belleza es lo que le inspira una sonrisa a Dios"   ( Beauty is what inspires God to smile)

MS: "Para mi belleza es un compendio de cosas, que hacen agradable a la vista, al olfato y a los oidos , al tacto, al sentir , al oler,,termino,que ea ,es pureza,, es virtud,, es honestidad ,,,y es un.concepto de varios matices, depende para quien , cuando , y estado de animos,,,,,,, bello el amor, bella la lluvia , bella la cancion , y tu primita ,,, toda bella"  (For me beauty is a compound of many things that are pleasant to the sight, the smell, the hearing, the touch, and the feeling. It is purity, it is a virtue, it I honestly. It is a concept with many hues. Depending on the eyes of the beholder. Love is beautiful, rain is beautiful, a song is beautiful, and you my little cousin is all beauty. )

To strangers, the people that see me for a fraction of a second, to them  I am not beautiful. I understand why and it is because I have a unique face. I have an eye that too many comes from a fantastic horror movie, but it is not makeup, it is my real eye. My right eye is a prosthetic, and although beautiful it does look fake because I have minimal muscle movement. I also have a fairly significant fibroma right next to my beautiful fake eye. To top it off, the right side of my skull comes out a little too far, and I have scars. So no, to strangers I am not beautiful.

literally
Fortunately, I am beautiful to those that do matter; to my family and friends, I am beautiful both inside and out.



I recommend reading, " Beauty Through the Ages" by  Dr. LaNae  Valentine. This article demonstrates how beauty is ever changing and how ridiculous and stupid the human race can be.
 Recapturing Beauty

The Lunchbox Incident

Disclaimer: I do not advocate for violent behavior... but sometimes a girl's gotta defend herself( please do not repeat my behavior).

I've been wanting to tell the lunch box story for the longest time because it was the first instance in my life that I experienced being bullied, and the first time I  stood up for myself... now was it the most ideal way to defend myself? To be honest with you, yeah, it was!!!
This story has to do with bullying and how four year old me decided to handle and forever stop my bully from ever making fun of me again. My classmate decided that for some reason or another she did not like me and so she teased me every day and threaten to hit me with her father's belt, she would also bite and pinch me. At the age of four, I was being severely bullied by another four year old!
My mother being a teacher at the same school and being acutely aware of the situation spoke not only to my teacher but also with the principal of the school and the school's psychologist; nothing ever happened, and the bullying continued. One day after school my two older brothers and I were having a snack after school. My mom was in the kitchen, and the three of us were at the dinner table. According to my mother ( being four I do not recall all the details, but my mom does, and she filled me in on them). I was telling my brothers about my day and how this bully was treating me; my eldest brother then suggested that if I wanted to stop being bullied that I needed to hit her on the head with my lunchbox. My other brother then chimed in and agreed with our eldest brother; and of course, who is going to question the advice of a sibling? Especially when the information comes from both your older and wiser brothers.
Now my mother heard the entire conversation, but she didn't say anything because she never thought in a million years that I would take any action....- but boy was she ever wrong!!
So the very next day... before placing my lunch box on the shelf outside the classroom, I called over the victim, and as she stood in front of me, I took my lunchbox and hit her with it over the head. As she stood there crying, I placed my lunchbox on the rack and entered the classroom as if nothing had happened. Ironically, I got in trouble for defending myself against my bully, while she never once got in trouble for treating me so cruelly.  After the incident, my mom was called to a meeting about my behavior.
In retrospect, I acknowledge that I could have severely injured her with my lunchbox into becoming a sweet-nice-caring human being; but I shall never know because we moved to the USA before she fully recovered from the shock of me having the final laugh! 

Hope you got a good laugh out of my story. 

2014 Thus Far..... =)

First I would like to ask all my readers to help the NF community in an event that will be taking place in the Tampa Bay area. Please click on the link at the end of my post and join! If you would like more information, you may contact me via email: avelasquez011@gmail.
Happy 2014 to all!! I know I am 15 days late in wishing everyone a happy new year but.... better late than never I say.... right?
Alright, so as usual life has thrown me a curve ball, and it took me a while to recover myself because my goals and plans shifted a little. My last post was all about my pending graduation from USF in May of 2014, but USF had other plans for me, and so I graduated in December with my BA in psychology with a minor in sociology. I have officially been thrown into the real world and at times feel like a headless chicken running all around.  I've spent the first 15 days of 2014 looking for a job... I know I'll find one I just need to keep at it and not give up... kind of how I have lived my entire life!!
Having NF has taught me that life is constantly changing and that one must adjust to the changes because it makes life a lot more enjoyable. For the longest time I believed that having NF would stop me from pursuing my goals and living a healthy life, but now I realize that instead of fighting and shunning my NF I should use it to my advantage. That is why I want to work with families and children that have NF or any other disorder that makes life a little more challenging; I want to encourage children to live life and embrace their NF or any other disorder because that is the first step to having a healthy and happy life. I want to encourage parents to never give up on their child and to NOT listen to everything that the experts say because if my parents had listened to the experts, I would not be writing this post today.
So to finish this post off, I would just like to say that thus far 2014 has been great!! I have my health, my family, the best friends any gal can ask for and an amazing boyfriend that tells me every day how beautiful I am.
2014 started off with a bang, and I know it gets better!! I can say because I am participating in my first event with Children's Tumor Foundation and it will not be the last.

Please click on the link and join the amazing individuals that are fighting to find a cure for NF!! Join a team and participate, spread the word, or make a small donation.
http://ctf.kintera.org/faf/home/default.asp?ievent=1081865&lis=1&kntae1081865=9D85FD7255B44AB1B86CCA098B48C21F

Thanks for reading!

Progress.....

In May of 2014, I will be graduating with two majors!! Ha!!! Take that stinky kindergarten teacher that told my mother that I was unable to be in a normative classroom!! Take that school psychologist in Colombia that told my parents that I was not going to be successful in school! And finally, take that to every single person that belittled me just because I have monocular vision and just because I have NF!!!! Boy, that felt AWESOME!!!

Yes, I am very proud of myself, and yes there are still many more years of schooling for me (bah). 

I am near the finish line, and I have just started picking up speed. 

So, my original plans of being 26 and in a master's program got tossed out the window,. A while back, as it turns out I'm just now graduating with a BA in psychology and sociology ( and by the way, majoring in sociology was not in my original plans, it kind of just happened). After I had graduated high school, I saw myself having a successful career and having my own family by age 30,. I have four years to pull that one off! But within that, I thought that I would be in a master's program by my mid-20s... and well I am no t. Lots of things have happened from the moment I graduated high school to now, the present. And I will admit that I was upset at myself for not staying on schedule, but now I am able to see that I had to go through some bumps before being on the road I am currently in.
The thing is that all my life I have always felt that I am in a constant need to prove someone wrong. To prove a teacher, a school peer, a so called 'friend,' a co-worker or even a stranger that just because I may look different does not mean that I am cognitively delayed. For the most part, I would automatically assume that there was always that one person who thought that having my right eye deformed some how meant that I was mentally delayed, so I would always be in fight mode to prove that I was just as capable as everyone else. That was my attitude for the most part when I was in middle and high school, when I graduated and entered college my attitude continued.... and in part that's where I ran into trouble because honestly in college none of that matters!! I had to reevaluate the situation and acknowledge for myself that the only person I was proven wrong was myself; that even though there were individuals who thought very little of me, there was no reason why I should devote my energy to proving them wrong because their opinion on me will never change. Being in college has given me the opportunity to meet some incredible human beings, that build me up each and every day ( why did I not respond to these people K-12?).

For example, just today I was sitting outside of class with a couple classmates, and I decided to share with them my blog, this is what one of my classmates had to say " You are normal, we love you just the way you are." :)  She made me smile and once again forced me realize that the assumptions that others have of me are just that theirs and I have no business getting all worked up over it.
So.... I am 26 and graduating in May with my BA..... and I am perfectly fine with that.

Poems....

Just a small sample of my poems =) Hope you guys enjoy them!! I had more, but since my last computer decided to never work again, I lost ALL my poems!! :'( So I found these poems, and decided to publish them on here) 

Yeah,I write poetry too... and what!

LOST 

Unknowingly

Betrayed by her emotions

Driven by passion

 She found herself lost

Unable to breath

Her lungs collapsing

Her heart losing strength

She curled up

Closed her eyes- and

Said good-bye

 Dead 

Smiles replaced by a somber presence

Her laughter was silenced by her tears

 Now, Weaken and lifeless

She had unknowingly forgotten who she was

And was now lost, unable to find herself again

Betrayed by emotions

Driven by passion

And now dead

10-12-10

Poem 
It’s a new day
A fresh new start
Today, I feel liberated
I am finally free
Today is the first day-
My rebirth-after your departure
                ~
Flying high
In search of a new landing
A new home for my soul
A new chapter has begun
                ~
I have let you go
Leaving you in the past
Wrapping our story up with a final note
                ~
“I thank you for being you;
The one that discovered, the beauty
Hidden within me and for letting it out.
I thank you for being you ; for being my first love.”

04-02-11

Sticks and Stones....

...will break my bones, but words will ALWAYS hurt me...
I recently watched "Bully" a heart gripping documentary that tells the stories of varies teens that have been bullied, shunned, and in some cases have taken their own lives at a very young age. I highly recommend this film to everyone because something has to be done about it. It is cruel and wrong; no child should be bullied to the point of taking their own life.
I was bullied. I was made fun of and ridiculed growing up by my classmates. I felt like I was the problem, and on some occasions thought that it would be better if I were dead. My bullies never laid a finger on me... but their words and laughter were powerful enough that even today at times it affects me.
I was made fun of for something that was absolutely and entirely out of my control; I was born with NF, and there is nothing I can do to change that. The only thing I can do is live my life to the fullest and enjoy every second of it. 
I very rarely go to that dark and depressing place in my memory that brings tears and anger.I do not like driving past my middle school because the seventh and eighth grade was the absolute worse for me, I was taunted every single day by the same group of peers. I remember two girls. Specifically, that would be friendly towards me some days and then other days would be the cruelest and would lead the class in taunting me. I despised weekdays with a passion that I can not explain. When I walked home, I ran, when my mom picked me up, I jumped in her car. My parents were aware of what I was going through, but I did not let them do anything about it because I knew if they did it would only get worse. 
Despite all the ugly and cruel things that I have gone through I have been able to let it all go because I have always had the best of friends that encourage and push me to be the best Angela possible. I have brothers that always have and will always do anything in their power to see me laugh and smile. They over protect me, and I do not mind! I have two loving parents that did a great job in raising a daughter that does not let her physical appearance stop her from achieving her goals and dreams. 
Yes, I was bullied. Yes, I survived.  But I still have flashbacks, and it still hurts, because unlike a bruised rib or a black eye that eventually heal... being called "big eye" "ugly" " monster" "anorexic" and  "You will never find a boyfriend because you are too ugly".... those wounds never heal.