Saturday, December 1, 2018

Nunca Fui Fea


  No es fácil enfrentarse a la vida cuando ante los ojos de la sociedad no eres considerada linda; vivimos en una sociedad donde la apariencia física es cada vez más importante. Nos hemos dejado llevar por las redes sociales y por los famosos que controlan los estándares de la belleza. Es muy difícil y hasta imposible cumplir con todas las demandas que nos hemos dejado imponer por los ricos y famosos sin someternos a cirugías innecesarias solo para  poder cumplir y ser considerados hermosos.
Fue por esto mismo que yo nunca me considere bella cuando era adolecente. Adicionalmente  la burla y acoso que me hacían en el colegio  solo sirvió para confirmarme que yo era fea. Mis compañeros se burlaban de mí por algo que estaba fuera de mi control, por tener una apariencia física distinta a la de ellos. Nací con Neurofibromatosis tipo 1 (NF), una condición genética que herede de mi madre.  NF afecta a todos muy distinto, en mi caso, afecto el lado derecho de mi cara y cráneo. Hasta la fecha he tenido un total de 22 cirugías, dos de las cuales fueron para remover fibromas que me molestaban por el tamaño o el sitio donde estaban.  
La burla más  traumática fue cuando un grupo de compañeros me entregaron una nota estando en clase. Ellos estaban sentados diagonal a mi uno de ellos me entrego un papel doblado en cuatro. Al abrirlo vi  el  dibujo de un monstro con una nota que decía “una mirada cercana a Angela” cuando mire hacia ellos, todos cuatro se estaban riendo. Recuerdo que me levante de mi pupitre sin decir nada y bote el papel en la basura. No llore, no le  dije nada al profesor ni me defendí, lo único que hice fue terminar mi trabajo. Cuando mi mamá me recogió después de clases  llore, llore tanto que mi mamá parqueo el carro y me consoló, le conté lo que había pasado y que había botado la nota. Ella insistió en hablar no solo con el profesor pero también con la principal, pero yo no la deje porque sabía que si ella hablaba la burla iba ser peor  no solo se iban a burlar de mí por ser fea pero también por ser sapa.
Antes de mis 25 años yo me consideraba fea, veía mi reflejo en el espejo y no me gustaba lo que veía, criticaba mi cara y cuerpo constante mente como hacían los que se burlaban de mi cuando estaba en el colegio. Escuchaba sus voces  llamándome, fea, monstro, y hasta anoréxica. Y aunque para mis 25 años yo ya había comprobada que aunque yo creía que era fea si fue posible tener un novio, no basto para destruir completamente las palabras toxicas que no salían de mi cabeza. Mi primer novio fue el primer paso para sanar y para darme cuenta que yo no era fea, ni un monstro y mucho menos anoréxica.
Es bien triste que  demore 25 años para darme cuenta que soy hermosa y sobretodo amarme completamente. Ahora, cuando veo mi reflejo en el espejo, veo a una mujer luchadora, fuerte, y con una cara espectacularmente hermosa aun con cicatrices.  Yo he contado con el apoyo de una familia increíble, amigos  incondicionales y dos novios que aunque ya no están conmigo, callaron las voces negativas por siempre.

Thursday, November 29, 2018

Fosforito

Fosforito, el apodo que mi hermano Andrés me puso cuando me vio llegar al apartamento de mis abuelos con la cabeza afeitada. Recuerdo que tenía unos cuatro años la primera vez que los cirujanos intentaron corregir los huesos del lado derecho de mi cráneo que estaban deformes. Me acuerdo vivamente estando en el salón de belleza con mi mamá y abuela, ellas hablando y explicándole a la estilista, la razón por la cual me tenían que afeitar, mientras ella pasaba una cuchilla por mi cabeza. Aun me puedo ver sentada en la silla, quieta, enfocada en mi reflejo y en el cabello color miel que me rodeaba.  También puedo recordar la caminada al apartamento de mis abuelos, de la mano de mi mamá y abuela. Aunque  ya no tenía mi cabello largo, recuerdo que no estaba triste. Es más, no recuerdo haber llorado mientras me afeitaban.

Sin embargo, todo cambio el momento que mi hermano me vio y exclamo “¡Cabeza de fosforito!” ahí  si llore. Llore ese día y muchos más.  Recuerdo una vez, una de mis varias pataletas le decía a mi abuela que mi cabello nunca jamás mi iba a volver a crecer y que mi iba a quedar calva por el resto de mi vida. Mi abuela, con su dulzura me abrazo y me dijo que mi pelo mi iba a crecer más lindo que antes y que solo tenía que ser paciente.

Mi abuela, como siempre, tuvo razón. No me quede calva. Esa fue la última vez que me afeitaron la  cabeza, hasta el 17 de enero del 2018 cuando tuve  mi cirugía número 20.  Esta vez, fue una enfermera que me afeito en el quirófano, pero solo afeitaron media cabeza. Cuando  me dieron de alta del hospital mi mamá me corto el resto de cabello, un mes después mi prima que es estilista me arreglo el corte.
3 meses despues del regreso de Fosforito
Esta cirugía, como la primera a los cuatro años fue por causa de mi Neurofibromatosis. Esta vez, el cirujano removió la placa de plástico que otro cirujano me coloco cuando tenía 17 años para proteger la malla de titanio que  protegía mi cerebro.  Aunque tengo el pelo corto aun y una cicatriz en todo el medio de mi frente, mi siento completamente cómoda y hermosa con mi nuevo look.

Después de   la cirugía en enero del 2018, tuve dos más una en marzo para corregir un imprevisto de la cirugía de enero y una última en octubre para remover cuatro fibromas que me molestaban. Hasta el momento no tengo más cirugías programadas pero todo puede cambiar, así como ocurrió en marzo de este año.
En esta ocasión que también tuve la cabeza afeitada, fui yo, la que bromee con el regreso de, ¡Fosforito!



              

Gracias RP, esta va pa' ti 🙂



Monday, October 8, 2018

Self Sabotage

After four years of working in a stable job, I find myself without work; I woke up the day after my last day of work and laid in bed processing everything that transpired that led to my resignation. I am now, fully aware that due to my lack of self-confidence I was unable to do my job well.
Now, I know many of my friends, which are also my colleagues, will disagree with me because they have seen me grow from a Specialist to a Supervisor in the four years I worked at the agency. Unfortunately, I do not agree with them entirely.  I do not agree, because I have incredibly high standards for myself.

My therapist once told me that I was a perfectionist and hypercritical of myself. My supervisor once said to me that I do not let go of my mistakes, I cannot dispute either because they are both correct.
I have not been bullied since I was a teenager, but somehow I do it to myself. Doing this causes the same effect as when I was being ridiculed for something I  have no control over.  I continue to put myself down and doubt myself at every corner. I second guess myself and hesitate on just about everything I do. I am unable of letting go of mistakes; instead, I grip onto them which hinders my personal and professional growth.

When I was younger, I did everything in my power to remain in the shadows. I did this to protect myself because I thought that if I stayed unseen and unheard, I would not be made fun of for having a disfigured face. I reasoned that if I remained invisible and silent than they would not be able to say that my mistakes or inability of doing x,y, or z was directly linked to NF. It didn't work because no matter what kids still found a way to bully me.

Ironically I have hurt myself a lot more by living in the shadows than by being in the spotlight. I was forced to leave the comforts of being invisible the day I became supervisor of Gateway Services.  I honestly thought that I could do my job well while remaining unseen and unheard, however, after a year and a half as a supervisor, I stand corrected, and without a job.

In May of this year, I started having panic attacks before going into work something that I never before experienced. Sometimes, I would have them while sitting at my desk, I would stare at the report I was working on and could not process the information I was reading. My supervisor did her best to help me process and to create various coping techniques, but at the end of the day, it is my responsibility, and that is why I have left a job that I love.
I need to be comfortable with being in the spotlight because if I want to continue having a successful career, I will need to be seen and heard.



Monday, September 10, 2018

What's Up with the Hair?

 I miss my long brown hair. I can't wait to have it down to my waist again. The concept of short hair is foreign to me, and the only reason I have short hair right now is purely medical. I would never in a million years have a pixie cut by choice. But my body decided that it was going to misbehave and thus resulted not one but two unplanned surgeries.

I like my long hair not only because I have gorgeous hair, yes that is a conceited statement, but more importantly, because it has been my security blanket for 31 years. And now I am completely exposed to the world, and I do not like it. I used to be able to cover the right side of my face and not be seen, and now, I have nothing! I am forced to go out into the world without my protective shield.
Ironically, everyone and I mean everyone loves my short hair! This I do not understand! Nor do I want to because the pixie is not staying.
Yes, I feel more comfortable and confident than ever before, but that does not change that fact that I feel the most secure when I have long hair. That will never change.
So thank you all for the compliments. I  appreciate it and trust me, your kind words do help, but you will not change my mind.






Saturday, September 8, 2018

Face

Not too long ago I told someone that I was still getting used to my new face, he looked at me and said,” your face looks the same.” I looked back at him and just stared. I didn’t understand how he did not see that I had a new face, I  got irritated at him because he was unable to see how different I looked. I was annoyed that he failed to see how my surgeries had improved my face. How is he unable to see the same reflect that I see each time I look in the mirror? A more symmetrical and beautiful face. A face that I like a lot more.

I then heard that tiny voice in my head say, “ To him, your face has always been beautiful.”
He shared that he really wished I was able to see just how remarkable I am. He held my hands looked into my eyes and  said," You are beautiful, intelligent and the strongest person I know."  I looked away into the distance, he pulled my face towards his and repeated it. 

In the eyes of many, my face has not changed, or if it has, it is minor. However, for me, it is day and night.  I no longer have the large fibroma on my right temple, nor do I have the protruding plate on the side of my head. My eyes also appear to be more leveled than before.  I now find myself enjoying makeup a lot more because I do not have to hide scars or a fibroma.

I know that to many of my friends and family the changes in my face are minimal, but to me they are significant. Between August of 2017 and March of 2018, I had four surgeries that in my opinion vastly improved the appearance of my face. I feel like my disfigurement has been reduced; to me, I have a new face. And like my friend Izzy said to me not long ago, I live with this face so I will notice the changes more than anyone else.

Even though I have a scar running down my forehead, like Harry Potter as an acquaintance has described it; I have never felt more confident with my face than I do now.

Saturday, July 14, 2018

Motherhood Part 2

 As  I was recovering from major surgery in January, I received the most fantastic news ever, not once, but twice was I told that I would become an aunt! Both my sister-in-law and friend gave me that happy news that they were pregnant. I cannot begin to express the excitement I feel towards this new title I am earning! I have sheer joy and cannot wait to hold my niece and nephew (of course not at the same time). I am going to enjoy every second of being an aunt because I know I am going to rock it!
After I digested the fact that I would become an aunt to two babies this year, I asked myself, if becoming an aunt would or could replace my yearning for motherhood. I have yet to find the answer, and I do not know if I ever will.

In Motherhood Part 1, I shared an experience I had in a previous relationship where the possibility of becoming a mother was very likely. How different would my life be right now if that pregnancy test would have been positive?  Would I still be in the same relationship? Would I have been promoted to supervisor of Gateway Services? Most importantly, would I have had four surgeries in seven months?   I really do not want to consider having an alternative life to the one I am currently living. I still believe that it was a real blessing that it was only a scare because I was not prepared for motherhood at that time and honestly, I am not ready now either.

I do not know how different things would have been, so all I can imagine is living this same life, having had the same experiences but only with a toddler. If that were the case, then, I would be a single mother with an incredible support system because I would not have been able to go through surgery alone while raising a child. But all this is just hypothetical of course.
Motherhood is in my future, but for now, I am going to enjoy aunthood to the fullest!!



" Do you even belong?"


I was born in Barranquilla, Colombia, a city on the northern coast of the country; the same city that Shakira and Sofia Vergara call home. My family and I immigrated to this county when I was six years old, I became a citizen at the age of sixteen; but to some, that does not matter because to them I will always be an immigrant and they will always question my legal status. 

Imagine being a kid and having a classmate say to you, " How did you get here? did you swim over?"  Or, how about being told to go back where you came from because you do not belong, this had happened to me and not just once or as a kid. As an adult, it has happened.

I am one of the blessed immigrants in this country that has had it "easy" because my parents were able to do things "right."  I have never lived with the fear of being deported for not having a piece of paper that gives me the false protection of being here. I never had to question myself after graduating high school about life, because I knew I could go to college if I wanted to. However, I knew many classmates in high school that lived with that fear. I had a handful of friends that questioned themselves because they did not know what they would do after graduating. 

Being an immigrant in this country is not easy, it will never be easy. But currently, it is not just not easy but also dangerous. I turn on the news, and all I hear is the continuous hate speech and not only towards immigrants but all minority groups. It has to stop. No one person is better than the next. No human has more rights than another.




Sunday, May 13, 2018

Speechless

Candice and I after our presentation
On Saturday, May 12th, I attended an NF symposium at John Hopkins All Children's Hospital. I was eager to attend not only because I wanted to learn about new research findings on NF but more so because my hero and friend Candice was going to speak.
As I was sitting in the second row, sipping some coffee, I saw Candice approach the podium to speak to the host. They spoke for a few minutes, I figured they were talking about Candice's presentation and the other presenters.
A few minutes before the symposium was to begin Candice called me over, I figured she wanted me to meet the host for the day.
I was 50% right.
I was asked if I felt comfortable, if I could speak on my life and how NF has affected it. It took me less than 30 seconds to say "yes".



Giving my speech
So, I gave an impromptu speech on how NF has played a part of my life for almost 31 years. It was a cathartic experiance and at the same time exhilarating. I realized after giving my speech that I want to continue doing this, what can I say, I am hooked!





Thursday, May 3, 2018

Motherhood Part 1

In March of 2015, Joe and I had a scare. What followed were three weeks of anxiety and stress. I was so overwhelmed that I got sick with strep throat for the first time in my life. When this first came into play, we discussed our options and ultimately decided that we would wait to take a pregnancy test and go from there; I took two, and both gave a negative result.  If I am 100% honest, I was relieved that I was not pregnant. This does not mean that I do not want to become a mother, in fact, it is quite the contrary, I cannot wait for motherhood.

However, I want to adopt instead of having biological children. I made this tough decision when  I was in my early twenties, and I am not changing my mind. I know of many women with NF that have chosen to have children, my own mother for instance, but that is not a choice I want. I've had many conversations with my mom on this subject, and through them, I have learned that my mom at first was not aware of the risks for her or the baby.

My mother had three children, my two older brothers and myself; Francisco and I have NF. After each pregnancy, my mother developed more and more fibromas. She tells me every time we have this conversation that she does not regret having my brothers and me because we are her life; reassuring me that if she knew then what she knows now that she would still have my brothers and me. That I find very courageous and admirable.

Four months into my relationship with Joe, I told him that I did want to have biological children. I told him this after he made a comment one morning as he was getting ready to go to class. I asked him what he wanted for lunch, and his response was, " I can't wait to have you pregnant, barefoot and in the kitchen."  I knew he said that with no malice but his comment sunk my heart.
Here I was with the man, I then thought was my future husband, and he is letting me know that he wants me to carry his child. After he left, I cried because I knew I had to tell him and I knew I would run the risk of ending my relationship with him because of this.  Nonetheless, I found the courage I needed.  Once again I cried as I told him that I would not be giving him biological children and how I understood if he wanted to end our relationship before it got more serious. As he kissed and wiped my tears away, he said that he could live that, after all his dad and aunt were adopted.

I believed him.

Unfortunately, throughout the three years we were together he would ever so often mention the topic. He would say that he did not care if our child had NF or that he did not care if I got more fibromas. And no matter how many times I would explain to him that I was not changing my mind and how his comments hurt, he would still bring it up.

So, when the possibility of me being pregnant presented itself, I was faced with the possibility of making another tough decision. Ultimately, I decided that if it turned out that I was pregnant that I would go through with the pregnancy.

Yes, I want to be a mom. No, I do not plan on getting pregnant, but if it happens, it happens; and now, I am okay with that.

Sunday, April 29, 2018

Flashing Yellow


I've come to a moment in my life in which I have realized that I need to stop proving myself to others and just live my life freely. This has been a tough lesson to learn because by focusing on proving myself to others I have in actuality been failing myself. 

This, I realized very recently, As I began shutting down and creeping into a depressive phase.  I was scared of being depressed once more and of not having the strength to pull myself out of it. It took me a very long time to dig my way out that when I did, I promised myself I would not be in that hole again.

When I spoke to my therapist about my current mental and emotional state he told me that I was, in fact, exhibiting the warning signs.  The way he worded it was that I was flashing yellow and that I was able to turn it around to prevent the light to change to red.

I don't want my yellow to turn red. And so, I need to focus on me and not on others, which always seems to be the most challenging thing for me to do. 
For someone that dislikes being in the spotlight, I genuinely do a  disservice to myself by needing to prove to others that I am capable of everything. I know I can do anything and everything I set my mind too I just need to do it for me and not for them.



Saturday, March 10, 2018

And Now to 21


 I went more than a decade without having a single surgery. I had become accustomed to a life free of operations. Of course, a few times I thought of the possibility of having some fibromas removed and even spoke to a doctor, but, nothing came out of it because the timing was not right.

So, let's rewind back to June 2017 when I was reintroduced to surgeries.  I went to Dr. G. because he had operated on two other friends that also have NF and both spoke highly of him.  Since he had successfully removed fibromas from my friends, I had complete trust in him even before I saw him for my first consult.  I was right in not having any apprehension, he far exceeded my expectations.

I never thought in a million years that I would have the face that I have today because passed surgeons said it would be impossible. In fact, those same surgeons spoke of a painful surgery that they considered necessary when in reality it was not.

From the moment I met Dr. G, he has been honest and straightforward. He told me what he was able to improve and what he saw as unnecessary pain for me. Instead, he gave me an option to enhance the appearance of my right eye.

On March 7th Dr. G, operated on me for the fourth time making this my 21st surgery. Yes, this was a surprise for the both of us! Another unplanned surgery. This time two tiny tips of titanium were poking out, this was attributed to my surgery in January. Out of anything that could have happened after that major surgery this was very minimal. Both Dr. G and I were much more relaxed going into this one because we both knew it was a simple but necessary fix.

Dr. G operated on me for the first time in August, seven months and four surgeries later and these are the results...

Saturday, February 24, 2018

Cupid's 2018

What an amazing day! Angie's Awesome Angels raised $1,760!   The amount raised just blows my mind, I cannot begin to express my gratitude for every single person that donated.I am forever grateful for your contribution towards finding a cure for NF. 

I would just like to thank my Awesome Angels because you made my day so very special. This year Cupid's Undie Run was more significant than previous years because I was recovering from major surgery. I was embodying the reason we need to find a cure.  I do not want to have to go through another scary impromptu surgery because of my NF again; nor do I want anyone else to go through a similar procedure either.  

So without further ado, enjoy some snapshots of our Awesome Angels.




















And now to prepare for Cupid's 2019!!! 

Saturday, February 3, 2018

My First Boyfriend

My 'first' boyfriend was a high schooler, had long brown hair, beautiful brown eyes, and was a bit taller than me.At least this is what I told some girls in middle school that would bully me by telling me that I was too ugly to have a boyfriend. They would say to me that I was too skinny and unattractive because my face is disfigured.
So one day, I got so tired of their bullying that I told them that I did have a boyfriend that was a freshman in high school. I still remember their doubtful faces as I shared with them my fairytale romance with an older boy!  One of the girls told me that she wanted to see a picture of this 'boy' that I was so calling my boyfriend.  So, without flinching, I agreed to bring in a picture of Juan and I together.
Related imageA few days later I went to school with picture in hand. The truth was that Juan and I grew up together, we were more like cousins than friends. He and I spent pretty much every weeked together. Juan knew very well of the bullying I indured in school, many times I would just cry in his arms as he did his very best to console me. When I asked Juan if he would prentend to be my boyfriend and show some bullies a picutre of the two of us, he agreed right away. I do not know if my bullies believed me or not, and honestly, at this point it does not matter but the girls did stop taunting me, at least for a few days.
Through out my adolescense many classmates and so called friends told me that I would never find love. They would say that men would only see me as a friend. Instead of believing Juan and others that would say that they were wrong, I chose to believe my bullies. Afterall, I went through middle and high school without been kissed.

I had my first kiss and boyfriend at the age of 22.


Friday, January 26, 2018

Post 20th

Surgery went great! I cannot begin to express how happy I am with the results of this operation. Even though I am still puffy, I can already tell the difference. I once again have a nice round head thanks to two amazing surgeons, and best of all I no longer have an open wound on my right temple.
During pre-op, my surgeon told me that I should expect to stay in the hospital for a minimum of five days, this did not make me very thrilled.  Thankfully, my body remembered how to bounce back after major surgery and I was able to go home two days after surgery.
While in the hospital one of many wonderful nurses jokingly said that I looked like Sally from Nightmare Before Christmas. After looking in the mirror, I agree!
So I currently have a shaved head and stitches running from my forehead down to my right eye and back around my head. I thought that having a shaved head would be awful, but it's not.

Pre-surgery

post-surgery



To get a better understanding of this post, please read the following two posts.
 20th Surgery 
Surgery Update

Saturday, January 13, 2018

Surgery Update

Today I found out that I am having surgery on Wednesday. That is Wednesday, January 17th. Yes, that is less than a week away but when you are talking about two surgeons having the same available date and an operation near my brain... you take what you can, even in this circumstance.
So, I am left with four days to adequately prepare myself and to make sure I leave as many things organized at work as possible.

To say I am anxious is to minimize it, even though this is my 20th surgery I can't help but feel this way. Afterall, I am having major surgery and that is not easily digested.

I will keep you all posted with any and all updates, but for now, I will leave you with this song because it has taken me many years to get to this point and I am not about to let a surgery push me back!





One more thing, go donate to my Cupid's Undie Run Page!!