NF & Halloween: A Love/Hate Relationship

In my post-Spooky Halloween, I express my dislike for October 31st. In this post, I want to go a little more in-depth on the psychological effects that these comments had on me. I think it is essential to have this conversation because words hurt and can have catastrophic consequences.

As an adolescent, I already had a poor self-image and spent a good portion of my teenage years comparing my body to that of my girlfriends. Not only was I already insecure because of my face, but I was also petit, I would look at my girlfriends and saw their bodies transformed, mine did not( at least not in my eye).

So the last thing I needed was to receive comments about something that was entirely out of my control. Especially when I am doing my best to put aside my insecurities and socialize.
Despite everything, I do have fun memories of Halloween as a teenager; of course, these all involve me hang-out with friends and family. My cousin Caro and I threw Halloween parties for a few years, and I went trick-or-treating with a group of ten to twelve friends, so nothing bad happened.
This was not always the case.

The last time I went to a haunted house, I was accosted by one of the zombies. I remember walking a few feet away from my friends, I heard someone approaching me, so I decided to play it off, when he approached me I laughed and said," you didn't scare me." His response, " your face is scary." That brief encounter ruined my entire night.  For the rest of the evening, I kept replaying his words, I did not understand why he would say something like that when all I did was joke with him.

On other occasions, people would focus on my face and not on my costume. That just made me feel like there was no point in joining in the fun when the only thing people would see was my disfigured face.  And so, I became reclused and avoided everything having to do with Halloween.

As a student in USF, I attended the Halloween party that the Hispanic club would host on campus. I would always go with my group of friends. However, that did not save me from the comments. On more than one occasion, some idiot would say something, and instantly, I would shut down and want to go home. Thankfully my friends have always known what to say and would turn things around for me.

Words hurt. Words cause deep wounds that are hard to heal. I am 32 years old, and I can still vividly recall the mean comments that were said from 15 years ago.

The picture I am sharing in this post is from 2014, I dressed up for work. I still remember my hesitation as I was getting ready because, in my mind, all I could think of was that my co-works were not going to see that I was Olive Oly. Instead, they were going to see this petit woman with "awesome eye make-up" and nothing else.  I almost chickened out, I made myself believe that is was stupid, silly, and pointless. I thought, why bother, it's not like you can be Olive Oly! Clearly, I was wrong.

What do you think?

Not Funny...I say, Yes

A few days ago, at a family dinner, my sister-in-law Rosie asked, " Who has eyes on Tay?" I responded with, " Don't worry, between all of us, there are  13 eyes on her."  She just looked at me and started laughing.
Another time, my cousins and I were playing drunk Jenga ( I do not know how else to call it) when the block I pulled read, "become a pirate, play with one eye closed." I immediately started laughing uncontrollably, my cousin Felipe looked at me and asked what was so funny, so I showed him, and he too began to laugh.

I share these two anecdotes because they accurately demonstrate how I take on life. When I make comments like the ones above, I am not doing it to belittle myself; in reality, it's the contrary, I am entirely comfortable in my skin.  Yes, of course, I would love to see from both eyes, but then again, how can I miss something I've never had?
It took me a better part of my life to truly love my body and see myself as beautiful. I have never had the confidence that I have now as an adult. Ten years ago, I would never make jokes about my poor vision or my prosthetic eye.  One of my favorite sayings is, " three eyes are better than two." I take great pleasure when I get a shocked reaction from the receiving end of my statement. Most people do not know how to react, so they just laugh nervously. 
Now, don't be mistaken, there's a big difference between being rude and disrespectful and being playful when making comments concerning my NF, physical appearance, or anything else for that matter; and trust me when I say I can tell the difference way before you even finish speaking and I will let you know whether or not I approve.
I learned at a pretty young age that if I demonstrate self-confidence, then that will transfer over to others that may not necessarily know how to interact with me because they feel uncomfortable.  I will never apologize to someone that feels uneasy in my presence or accommodate into someone/something I am not for their comfort, and that includes the words that come out of my mouth.

Looking Back

This time last year, I found myself in a dark place. I was healing from the surgeries I had had earlier in the year, but emotionally and mentally, I was broken. My anxiety was affecting every aspect of my life.  I was depressed, losing weight, and my hair was falling. I felt completely out of control. My life was off-kilter.
In February of 2018, I had one of my most significant panic attacks.  I had just returned to work, from having major surgery. It had probably been a week when I quietly started having a panic attack that started during a meeting and lasted until I left work a few hours later. I remember my chest tightening and a knot forming in my throat midway through the meeting. My brain stopped processing information, and I was unable to speak. After the meeting, I went to the bathroom, cried in a stall, and then washed my face. When that didn't help, I did a few laps around my building, I sat at one of the picnic tables and again cried. After some time had passed, I once again washed my face, walked into my office, put on earphones, and zoned out until my shift ended.
The job that I loved had become a trigger for panic attacks. I dreaded going into work. I stopped enjoying the challenge of supervising 30+ people. I became resentful, and everything was negative. No matter how hard I tried to turn things around, I could not find the positive. I cried myself to sleep on most nights, I distant myself form everything I enjoyed. I barely cooked, wrote, or took long walks with Ki-Bo.
By mid-May, I had told the program manager of the department that I did not see myself working at CCTB in five years.  It was both the best and worst decision I have ever made. I felt the tension release after I told her how I felt, but at the same time, from that moment on, she would ask me when it was that I was resigning as supervisor. I put in my notice at the end of September, my last day as supervisor of Gateway service was October 1, 2018.
To make things more complicated, In August of 2018, my ex walked into my life once more. After almost two years, since our relationship ended, I saw him again, standing in my driveway with the words  I wished to have heard when we were still together, " I am sorry. I am sorry I hurt you.  I don't want to live with you not in my life."  As much as I loved him and what we had, I knew then and still do now that our story had ended and there was not going to be a sequel.
The same day I decided to put in my two weeks notice I bought airfare to visit my family in Colombia. I did not have specific plans or things I wanted to do. My goal was to find my inner balance once more. After all, I needed to find work upon my return.
As 2019 is nearing its end, I can happily say that I have no regrets on any of the decisions I have made that have led me to where I am today.  Ironically,  I could very well find myself unemployed on January 1, 2020, the company I currently work for will be closing. I've known this was coming since April, but I am not worried, I know that I will find myself employed soon enough.

Like I've said before if NF hasn't been able to break me, nothing will.

Kissing Frogs

As an adolescent, there are certain activities that are a rite of passage; experiences that the vast majority of teenagers live through before they graduate high school. As I have shared, my childhood and adolescent's was anything but typical.   I rarely went to parties, and as for school functions, my friends had to drag me to them. So it may come to no surprise that I did not partake in your typical teenager party games, such as, spin-the-bottle, truth or dare, seven minutes in heaven and countless others.  I was always the spectator, wishing that somehow the cute guy will think I was pretty enough to kiss.
And the one and only time I played one of these games, I ended up in tears and was completely embarrassed.
I was about sixteen or seventeen and went to a classmates birthday party. We were all sitting in a circle, I think there might have been about 25 people sitting in a small living room. The game consisted of spinning an empty beer bottle, and whoever faced the mouth would then dare the person that had the bottom facing them. I sat within the circle, but I was not an active participant.  I was distracted and speaking with someone else when all of a sudden, I heard in Spanish, " I dare you to kiss Angela on the lips." At that moment, my entire world froze.
The room became silent ( at least this is how I remember it)  I distinctly remember him sitting in the circle looking at her and shaking his head, he then looked at me and said, " I will only kiss her on her cheek" I was devastated.  A  so-called male friend egged him on, saying, " come on, just give her a kiss, a small one." The guy laughed and said, " Don't be an ass, I am only kissing her on the cheek." He crawled towards me and placed his lips on my cheek.
At that moment, my world fell apart not only because I was not kissed but also because I was humiliated in front of everyone that attended that party. After the game ended, I called my parents to pick me up, while I waited for my dad, I stupidly told my guy friend how I felt, he could not understand why I was so upset and hurt. To him, nothing terrible happened, he was unwilling to show compassion. 
Now, years later, I am thrilled that I did not get my first kiss from some loser that had been swapping spit with other girls that night. In retrospect, I was actually lucky because in my 32 years of life I have never kissed a frog, and that is something very few people can brag about.

NF Single Lady

~I used to be terrified with the thought of being single because I equated singlehood to not being attractive to the opposite sex.~

I am a self-proclaimed hopeless romantic; I believe in true-deep-crazy love that can drive you insane. Even as a kid, I created love stories for my barbies and also partnered up my stuffed animals.  By the time I was ten or twelve, I had envisioned my own love story. I told my self that I would be married by the age of twenty-five and mom of four by my thirties. Of course, I would meet the love of my life, either in high school or college. We would both be successful professionals that would travel the world. 

But then everything changed. By the time I was in high school, I had started having doubts that I would ever find my prince. After my dad left and moved in with his mistress, my believe in true love had vanished. Despite this, part of me still had that glimmer of hope that one day I would be swept off my feet. This frame of thought continued well into my first relationship. Brian brought back to life the hopeless romantic in me! After my relationship with Brian fizzled, I knew that if it happened once, it could happen once more...

In September of 2013, I met Joe, he and I would date for three years. At the age of 26 years old, I had truly debunked the idea that men wouldn't find me attractive. For the longest time, I kept replaying the words of someone I called a close friend,(someone I had a massive crush on)  that deeply hurt me. On many nights, I would hear his voice in my head say, " Angela will never have a boyfriend because men will never find her attractive." Just because he did not think I was pretty, attractive or worth it does not mean that others thought the same. He was obviously wrong. And to be frank, he missed out on an awesome chick.. me!

It has been over two years since my relationship with Joe ended, and I am perfectly happy being single. I know perfectly well that being single has nothing to do with men, not finding me attractive because I know that I am attractive. The only real reason I am still single is that I am incredibly picky.

I am no longer terrified of being single!

My Biggest Fear

I've always been told by family and friends that I am one of the bravest and strongest individuals they know, but I beg to differ.  A few weekends ago, I opened up to a  friend about one of my biggest fears (driving), without missing a beat she looked at me and said, " how can you be afraid of driving? You have inspired me so much! I will help you conquer your  fear!" She then gave me a tight hug and reassured me that she would help me conquer my fear because she would not let my fear overtake me.
Yes, I have overcome so much, but yet, I feel, at times, like I have not done enough to be called "brave," " strong" " fearless" and many other adjectives that I have heard throughout my life. This has been a focal point throughout the five years I have seen my therapist.  In my most recent session, we talked about the "mountains" I have conquered, and how I must first climb down the mountain I am currently standing on, in order to climb another. My response to him was, " I haven't climbed any mountain, I am just standing on a hill." His rebuttal, " why are you making the mountains hills? Hills are still mountains!" I looked at him, and my response was, " I am minimizing everything I have overcome and accomplished." He nodded and smiled.  It was at that moment, believe it or not, that I realized just how incredibly cruel  I still am to myself.
My next reflection was that this kind of cruelness and self-loathing has nothing to do with the fact that I have NF, see from one eye or my anxiety. It has everything to do with the sad fact that I am just plain cruel.
So in just a few weeks, I am turning 32 years old, and I still have my learners permit!  Part of me is really ashamed and embarrassed because I know how to drive, I just have not taken the drivers test. For heaven's sake, when I was sixteen, I drove the family van!  I just get very nervous and anxious behind the wheel. I swear to you that my legs feel ten times heavier and numb only by the simple thought of me driving.  The other part of me is entirely comfortable with  not driving, but I am fully aware that being comfortable is not always the healthiest option.

My friend has kept her word, she has 'forced' me out of my comfort-ness and pushed me to drive. She has been really great through all this and has given me the confidence to drive!  Not to mention, we have been driving in her car! she has trusted me with her precious car!!
My goal for this year is to get my license and purchase my own car. I can no longer continue living in this comfort zone because I am only hurting myself.  I know I can do this..., right? 

To Kevin

I met Kevin when I was 20 years old. He was 15 years older than me. How or why we ended up chatting for an hour and bounding over NF does not matter because I only saw Kevin that one time. However, that is all it took for Kevin to fall for me. I know this because a few days after we met he messaged me on Myspace (yes, in the era of Myspace) and told me that he hadn't been able to stop thinking about me and that he found me very pretty.  I was taken aback because before Kevin I never thought anyone would crush on me.

It's upsetting that at one point in my life I thought there was a zero percent chance that anyone would fall for me.  At 20, I was still struggling with self-love and self-worth and was continuing to allow the words of bullies to taunt me. Thankfully, all of this nonsense is a thing of the past because I am fully aware that I am worthy of having an admirer or two.

I dedicate this blog to all that have had a crush on me, especially to that guy and gal that I did not like back. Thank you for boosting my self-esteem. Thank you for smiling, winking and flirting, you have no idea the positive impact you had in my life if it weren't for you, I most likely would not have realized that Brian and Joe liked me and wanted to be more than friends.

I have now realized that there were one or two guys in high school that liked me and I actually liked them back. Even though these classmates never came out and said, " I like you," or attempted to be more than friends, having this realization is an incredible feeling.  It has been a little over a decade since I graduated high school, but I can't help but smile, to think that during the years I felt the least attractive some classmates liked me!

Des-parchada

¡Yo le digo “No” a los parches!

Mis papas me dieron mucha fortaleza, supieron que la iba a necesitar. Mi mama, ahora, me dice a veces por molestar, que se le fue la mano porque soy muy dura con ciertas cosas, incluso conmigo misma. Una de esas cosas es con el tema del parche. Yo nunca he sido partidaria del parche, aunque si ha habido varias personas en mi vida que pensaban que era mejor si lo usara. Hasta  hace un par de años atrás la simple insinuación de usar un parche me causaba mucha molestia porque yo nunca he querido tapar mi cara. Sí, es difícil salir de mi casa todos los días y exponerme a las miradas y a los comentarios pero igualmente lo hago.

Sé que quienes me recomendaban usar un parche lo hacían con las mejores intenciones, pero esas buenas intenciones  se volvían negativas y lastimosas  aún más porque yo ya les había dicho que no quería usarlo.  Uno de ellos me dijo, “Te juro que consigues novio enseguida si usas un parche,” otro  me dijo, “Si usas un parche consigues trabajo más fácil y será mucho mejor para tu carrera porque es más fácil mírate a la cara con un parche.” En otra ocasión, unos amigos de la familia llegaron un día a mi casa con parche café. Ellos pensaban que el regalo me iba a gustar y que iba ser el “empujón” que necesitaba para usarlos. Ellos me lo compraron aunque yo ya les había dicho que no en varias ocasiones.

De tanto insistir, yo cedi, intente usarlo en varias ocasiones pero nunca me amañe. Me sentía extraña en mi propio cuerpo. No sabía cómo manejar las miradas que me estaban dando ni cómo responder a los comentarios. Todos los que me insistieron en usar el parche se habían equivocado.  La última vez que lo use, me lo intentaron quitar, esto me pareció una falta de respeto, equivalente a que me hubieran agarrado una nalga. Y al respecto a lo que podía conseguir usando  el parche, también estaban equivocados. He tenido dos novios, y ambos me decían que yo era hermosa y que no necesitaba esconder mi rosto detrás un parche. También he conseguido trabajo sin ningún problema, es más, llegue a ser supervisora de un centro de crisis manejando más de 30 personas.  

Yo no estoy en contra de los parches. Sé que hay personas que los usan y se sienten a gusto. Es más, me imagino que se sentirán como yo me siento con el si no lo pudieran usar. Parche  o no parche es una decisión personal, y yo tome la decisión hace años de que los parches no son para mí. Me siento más cómoda y preparada para afrontar el mundo exponiendo mi cara.

Asi Soy Yo!

Mucha gente que me ha conocido se queda  aterrada al ver que soy  positiva y feliz. Para ellos, es difícil, casi imposible, comprender mi actitud hacia la vida.  Lo que ellos no saben es que tener esta actitud drena a veces. No es nada fácil despertar todos los días y tomar la decisión consciente de que, “yo puedo” “yo soy capaz” “yo soy hermosa” “yo soy fuerte” y más… pero lo hago porque la verdad, la alternativa no me gusta.  Para mí, vivir triste y lamentándome por tener esta condición no es una opción, nunca lo ha sido.  La razón de quedarme encerrada en mi casa, echada en la cama no es una opción es porque mis papas nunca lo hicieron cuando yo era niña. Es más, ellos eran felices viéndome correr y trepando arboles con mis hermanos y primos. 

Una de mis memorias favoritas de niña fue cuando mis papas, hermanos, y mi abuelo Pacho manejamos a Medellín a visitar la familia. En una de las muchas paradas fuimos a una finca que tenía varias lomas. Mi hermano Andrés y yo nos fuimos a caminar, él me tenía de la mano para que no me   callera, pero en realidad, era el que nos hacía caer mientras caminábamos por la loma. Yo podía ver a mis papas en la cima y ellos solo se reían mientras Andrés me echaba la culpa por tropezarnos y caer rodando loma abajo.  Otra de mis memorias favoritas fueron los días que pasamos mis hermanos y yo montados en la casita de árbol que nos hizo mi papá. Y así crecí yo, tuve una niñez típica, obvio, si tenía más cuidado al hacer ciertas actividades, pero mis papas nunca me decían “no”.  Mi mama me inscribió a gimnasia pero lo tuve que dejar porque me daba mareo y dolores de cabeza. También me inscribió al equipo de natación y a clases de teatro y danza. Ella siempre estaba dispuesta a meterme en todo de lo que yo le pidiera, su objetivo, “tú, hija mía, eres como todos los demás”

¿Entonces, como yo, de adulta, voy hacer una injusticia a la forma que me criaron al quedarme echada en mi cama, lamentándome?  No puedo, aunque hay días que de verdad quiero tirar la toalla. Pero es entonces que el universo me hace llegar mensajes que me animan una vez más.  Por ejemplo, recibo un mensaje de uno de mis lectores dando me las gracias por compartir con ellos, o me publican en la fundación de NF o una artista en el estado de Nebraska quiere pintar mi retrato.

Yo no me había dado cuenta del impacto que yo hago para aquellos que si están realmente deprimidos, desanimados o aún más sin ganas de vivir. Parame, poder darles a estas personas un granito de ánimo y esperanza es un triunfo. Es por eso que cuando se me presento la oportunidad de compartir mi historia en una entrevista que iba a tener un impacto para la comunidad latina acepte inmediatamente. ¡No solo eso, si no, también invite a una amiga que también vive con esta condición porque ella también es una guerrera! Hacemos más impacto compartiendo dos historias de fortaleza que solo una.

El 8 de febrero, Aurea R. De Mi Gente Tampa Bay nos entrevistó a Kathy y a mí para la televisión pública. La entrevista aún no está disponible, pero apenas lo este, con mucho gusto comparto el link. 

Love, You!

I am fully aware that self-loathing is not exclusive to people living with NF or with any condition that society does not consider the standard of beauty. However, this, I did not learn until I was in my twenties and studying psychology in college.
As a teen, I would get annoyed when a friend would point out a "flaw"  or an aspect of their body they did not like because they did not have a disfigured face,  I did.  I would scuff every time someone complained about pimples or stretchmarks because those things seemed superficial to me.
I also used to think that people that complained about their appearance or had plastic surgery to enhance or reduce x body part were shallow and self-absorbed because in my mind they had no idea of what it was like to truly live with a disfigurement.
It wasn't until I was older that I understood that overall humans tend to be crappy at loving themselves. We are quick to judge and find faults at every turn. It's as if we are hard-wired to put ourselves down and leave it to others to compliment us; I think that it is very shitty and I am not going to allow myself to be mean and cruel any longer. So, I have decided to compliment my self every chance I get. Yes, it is hard to retrain my brain, but I am doing it because the alternative is not an option.  I invite you to do the same, give yourself at least one compliment every day before you leave your house in the morning.
We all have aspects of ourselves that we do not like, and that is entirely okay. If having plastic surgery makes you more comfortable in your skin, then, by all means, go for it, you have my full support. What is not okay is to continuously put yourself down and criticize your body for the scars pimples left or for having more stretchmarks.
You are beautiful, every single aspect of yourself is perfect!
I challenge you to email me at lifewithnf@gmail.com your favorite attributes. Below, I have listed some of my favorite attributes in no particular order!

1. My long, lean legs, they are half my body
2. My petite frame, being 5’2” is awesome
3. My semi-wavy brown hair, I have tons of it
4. My accent!! I’m so proud of it!
5. My smile! Even though it’s crooked
6. My laugh, I sometimes snort

Your turn!

One Year since 20th Surgery!

January 2018

The other day I was flipping through pictures on my phone and was utterly stunned at how much my face has improved. It has been one year since I had major surgery, and even though it will take another six months to see the final results my smile only keeps getting brighter and brighter.

A year later and I am still in awe in how much my face continues to improve, not only that, but I also feel so much more confident than I did before.  I know this sounds redundant and repetitive, but you must understand the effect that this particular surgery had on my life. I cannot find words to adequately describe to you how much more beautiful I feel today than I did a year ago. 

Yes, by my mid-twenties I had accepted my body and NF and fully believed I was beautiful. However, I still had days in which I disliked my entire being and did everything in my power to cover my face.  So, had I truly accepted myself if I consistently used my hair as a shield?

Additionally, I would honestly like to know, how many people "have to accept themselves," is this something that everyone goes through? Or is this something that only those, like myself, that are "different" have to go through?

Due to this surgery, I was forced to face my internal demons of discomfort and self-hate.  My protective shield was yanked from me, and I still do not have it, and I miss it! I was left with a less noticeable disfigurement, but now I have a scar running down my forehead.

December 2018

So, if there is something I have learned in my lifetime is that I am not going to be broken! Yes, NF is going to forever be part of my life, but I am sure not going to let it take over. I already gave it control as a kid and teenager, and now that I have power, I am not giving it back to this relentless condition that taunts me every day. 

Each day I wake up and see my reflection and smile because I know that behind each scar there is a battle story, so keep em coming, because I will win each and every time! 

Warpping Up 2018

So I want to start my first post of 2019 by saying that I had initially planned on posting the following before 2018 came to a close, but... I didn't, so now you get to read it in 2019!


Written in 2018

What can I say about 2018? Well, it certainly has not been a boring year! I started the year with two open wounds on my right temple that led to, an emergency surgery on January 17th. While still recovering from that surgery, I had yet another unplanned surgery in March, to shave further down the titanium that protects my brain.
Between those two surgeries, I had a fabulous time in Cupids 2018!! My team was amazingly awesome. This year, I also had the pleasure of learning to love my shaved head. Due to the January surgery, I had to cut off all of my hair, something that was not easy for me to do because my hair is my shield, but at least it is growing back!
This year I closed one career path and began another. In December I started a new job, and even though I am brand new, I know this job too will be a great experience.
Finally, one aspect of 2018, that I have not shared is my trip to Colombia. After I resigned as supervisor of Gateway services, I decided to take a much-needed vacation, so I visited family in Barranquilla and Bogota. The month and six days that I spent in Colombia refueled me and gave me the strength I needed because even though I started 2018 full of vitality and positivity, by September I was drained and exhausted.
While in Colombia, I was given the marvelous opportunity to share my story of perseverance to a group of individuals that are as equally strong as I am. These individuals are all going through their own struggles and are paving their own path of perseverance. The two mini-conferences I did in Bogota, only proved to me that sharing my story is my life mission.  I want to continue doing conferences because I know that just like my writing, I am helping people from all walks of life.
So, all-in-all, 2018 has been a great year!  After all, I became an aunt, and at this point, nothing can top that off! This year certainly had its ups and its downs, but I would not change any aspect of it because I would not be going into 2019 with the strength and energy that I am if it were not for the good and especially the not so good moments.

TO BE CONTINUED IN 2019