Wednesday, December 31, 2014

2014 Summary


It is the final day of 2014! I can not believe another year has come and gone! This has been a year of growth in various levels for me. I began 2014 as a college graduate not knowing what road to take next. I applied for jobs, looked into various Master Programs and still did not know what exactly I wanted to accomplish.

Then in March, my aunt informed me that our local Crisis Center was in need of bilingual employees. I did not hesitate to contact the Crisis Center for more information. I honestly was a shocked how everything fell into place.  I called the Crisis Center on a Friday afternoon and was invited to meet the staff on the following Monday.  I was called on Wednesday for an interview and was hired on Friday! By far, this is the best job I have ever held.  I go to work knowing that my coworkers have my back, and I have theirs.

This year, I also had the great opportunity to participate in two campaigns for the Children's Tumor Foundation (CTF). I am extremely honored for the opportunity because  I was able to share my story with countless individuals and families that are living with NF. I hope that by sharing my story, I can inspire faith in others living with NF.

I am very grateful for the amazing year I had and only hope that 2015 brings me as much.
I would like to take the time to thank all my readers. This year I did not write as many posts,+ but I have made a New Years Resolution to write more in 2015.

Good bye 2014.....

Wednesday, December 10, 2014

The Mistaken Whistle

Whether women like to admit it or not getting compliments, winks, waves, and even honks as we walk down the street boosts our self-confidence. By obtaining this reaction by complete strangers reaffirms that we are attractive and beautiful. Now don't get me wrong, at times these honks and whistles are not welcomed because they become perverse ( but that's another story). 

Like many women, I too have experienced men honking, winking, and/or whistling as I am walking down the street. But my experience of this goes a step further. Many times the men that do this see me first from behind and when they drive in front of me and see my face what a flirtation turned into an insult.  Not too long ago I was walking my dog Ki-Bo around the neighborhood when a car that was behind me slowed his speed enough to get a good look at me. When the driver of the car poked his head out of his car and saw me his words were, " Uh, never mind." 

I smiled and laughed inside because I knew he was not worth me getting all worked up over an insignificant stranger. Besides, I sure as heck know that I am beautiful and way too good for a guy that drives a dirty, rusty old pickup. Did I mention the driver matched the description of the car? 

I used to get all worked up and bothered when I experienced similar situations like the one I just described.  I used to let it bother me, I used to cry... a lot.  My brother Fransisco has had to patch up my heart many times because on multiple occasions a classmate said something that truly hurt my feelings. He would take one look at me and know that some idiot kid in school made a rude comment about me. He would hug me tight and give me a huge kiss, then he would sing, You're  So Beautiful, he would sing one particular verse over and over again until I would laugh and stop crying. He would then whip my tears and say something stupid about the person that made me feel like crap. 

High school was tough because when my girlfriends had boyfriends and secret admirers, I was shunned and made to feel less worthy of affection and attention from the opposite sex. Two of the worst encounters that till this day I remember as vividly as if it were yesterday occurred while I was in school.  The first, I was walking, and I could hear two boys making comments about me, I remember I was wearing a skirt that day, and since I was on the swim team I was tanner than usual. I was not 100 percent sure that they were talking to me so I looked over my shoulder and the two male students stopped in their tracks and began to laugh in my face. I was hurt, but it did not affect me as much as the second encounter did.
The second encounter occurred when I  was  walking to class, this time two male students were approaching me as they got closer to me I heard them laughing and one said, " Dang she is f****** ugly!"  I crumbled inside. When the bell rang dismissing school, I ran towards the bus stop to search for my brother, as soon as I saw my him I ran towards him and began to cry. He dropped his backpack and just held me. I remember his friends just stood there trying to figure out what had happened to me.  When we got on the bus, and I recomposed myself enough to tell him and his friends what happened, they all became livid. My brother and his friends wanted me to describe the boys to they could " take care of it." Needless to say, I was unable to describe them. My brother held me the entire ride home comforting me as he and his friends kept telling me that I was beautiful and that those guys were worthless.

Now when a guy decides to take back, his "Cat call" I simply don't care.

Sunday, October 26, 2014

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!

Monday, July 7, 2014

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.

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

Tuesday, February 4, 2014

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. 

Wednesday, January 15, 2014

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.

Thanks for reading!