Cyberbullying

 

I find myself having difficulty writing this post because every time I start typing a knot forms in my throat and my eyes fill with tears. Last week, Lizzie Velásquez, an influencer, anti-bully advocate, author and, public speaker, spoke up against a horrific new trend on the TikTok app. 

Users of the app use a Snapchat FaceTime filter to conceal their faces with someone else's face. The idea is to use a  silly, innocent picture to be funny. However, this trend has quickly gotten out of control. As Lizzie shared, she has once again been the target of bullying on social media. A mother, a TikTok user, thought it was acceptable to misuse a picture of Lizzie to show her young son his new teacher. In the video, you can see the mom smile as she turns the phone around, and then you see his horrified reaction. Like myself, Lizzie was born with a genetic condition; her physical appearance is atypical, like mine. I want to clarify that this is just one example; this was not a one time misuse of the trend. 

This mother and anyone that partakes in this trend should be ashamed of themselves. Do they not realize what they are doing is called cyberbullying? Just because you find an image online does not permit you to use it maliciously. Even if the owner of the image never finds out, it is still wrong. Do these people not consider the long term effects of their joke? The mom who showed her son Lizzie's picture is teaching him to be scared of people that look different and that it is acceptable to make fun of others.  

As an adolescent, my classmates bullied me. My haven was my home; I loved Friday afternoons because the bullying would stop with that last bell, and that meant I would have two whole days where I would not have to see my classmates. Unfortunately, with apps like Instagram, TikTok, and Snapchat, among others, it is difficult to escape from bullies. I consider myself lucky because cyberbullying was not as prevalent as it is today. Maybe, I am mistaken, but at least I did not experience this form of bullying. I cannot imagine not being able to escape from my tormentors and not being able to shot it off.

When will society as a whole realize the repercussions of bullying? When will adults recognize that children mirror their behavior? If that behavior is bullying, then it is cemented in young minds that it is appropriate to ridicule others. This time we are having this conversation due to TikTok. Sadly, it is just a matter of time until it is another social media platform. 

I ask that you not promote trends that have the tendency to harm any living organism because, quite frankly, bullying does not stop at humans. Trends like the TikTok one, cause unforeseen harm that participants do not take into account. Please be vigilant if you see something inappropriate; I ask that you report it because that is the only way to make it stop. Lizzie is an incredibly brave woman; she has become the Joan of Arc of antibullying. 

NF & COVID

Living with NF and now through this pandemic, I have realized that the two have some significant similarities.  To start, neither NF nor COVID discriminate as to who they inflict harm to. Additionally, no one with certainty can tell anyone living with NF or diagnosed with COVID how exactly they will be affected; like NF symptoms, the symptoms for this virus can be mild to severe. Moreover, death is a possibility for both.  This is where the similarities end because there are more differences than anything else between the two. 

Neurofibromatosis is a genetic condition, meaning that it is not contagious.  No matter how hard I try, I do not have the mental ability to magically give NF to the small-brained-ignorant rude people that gawk at me. I inherited NF from my mother, as did my brother. In my mom's case, it was a spontaneous mutation of the genes. If I choose to have biological children, there is a 50/50 chance that my child can have NF. However, I will be affected by pregnancy because NF loves hormones. 

COVID is a virus, meaning it is  100% contagious. Let me put it this way, it is passed down from human to human. It is not contained in the genes and does not need a parent to have it to pass it down to their child. Once again, it can attack anyone, that is why it is so important that everyone does their part to reduce contamination.  And yes, some people are more susceptible to the virus, but that does not mean that you cannot stop the spread of Coronavirus. Besides, even if you appear to be healthy, you may have an undiagnosed underlying health condition that puts you at risk. 

We are living through a pandemic that has already taken too many lives.  As a people, we need to come together and do our parts to reduce contamination because that is the only way this virus will stop causing so much havoc in our lives.  I do not think this virus will altogether disappear but evolve like the seasonal flu does. We will adapt, and our bodies will build immunity, but this takes time.

Unlike NF, we can all play a part in how the Coronavirus interferes with our daily lives by practicing social distancing, wearing masks,  and having proper hygiene. There may not be a cure for COVID yet, but unlike NF, we can all contribute towards reducing the death toll. 

A Life without Neurofibromatosis

Have you ever thought of the person you would be if you did not have NF? Well, today, I thought of just this as I walked Ki-Bo, my 13-year-old boxer.  I know I, for one, have wished many times not to have Neurofibromatosis. I pray and hope for a cure in my lifetime, but wonder what that would look like for me and everyone living with NF.  I am optimistic that this will happen, but I do not know how it will affect me. Will I be able to take a pill that will prevent fibromas from developing, or will I take a pill that will dissolve the fibromas that I already have?  These are questions I hope to have answers to soon. Unfortunately, I do not think I will ever have sight in both eyes, nor will I not have a bone deformity.  So, even with a cure, I will always have a trace of NF; regardless, I will be content, knowing that my body will be free of tumors. 

Even though I genuinely would relish an NF-free life, I would honestly not know who I would be. Let's face it, the person I am today has a lot to do with Neurofibromatosis; despite not letting this relentless condition control and dictate my life, it has played a role in shaping the person I am today.  What I am more curious to know is if I would have had the same or similar life experiences if NF had not had the significance it has had or even better, had not been. Would I have been bullied in school? What would I have been made fun of if not NF? Truth be told, my tormentors never even knew I had NF, all they knew was that I looked different, and that gave them the right to be cruel. Their jokes and gawks were uncalled for and left emotional scars more profound than the ones caused by surgeries. Maybe I would have swum in my high school's swim team for all four years instead of just my freshman year. Or actually been an active member in the Thespians club instead of being in the background. 

Furthermore, would I be at the same point in life I am today if NF had not played a role?  Maybe I would have another career or altogether would have studied something other than psychology and sociology.  I could very well be married with children. So many more questions are left unanswered when attempting to imagine a life without Neurofibromatosis.  I may not be able to answer any questions above; however, something I know for sure is that I would not be writing this if I did not have NF. Moreover, my blog would not exist, and therefore, I would not be able to make an impact on those that are needing support. 

I cannot choose what personality traits I would have if I was not born with NF, just like I cannot decide how this condition will continue to affect me.  I do not know the person I would be or the life I would live without NF. What I do know, whole-heartedly, is that the life I have is one I treasure. 

                                                                                                                                                       

 

Cupids 2020

I was suppose to publish this a few weeks ago, better late than never !

Another Cupid's Undie Run has come and gone, and I cannot wait for Cupids 2021! This year Angie's Amazingly Awesome Angels welcomed two new members and raised over $600! This year Cupid's was more heartfelt than the past years. This year, I dedicated this day to my friend Kathy; she passed away due to complications with NF. Kathy was an intelligent, vibrant, beautiful, funny, and full of life and goals.

For some, Cupids Undie Run is simply a 1.5-mile run that raises money for the Children's Tumor Foundation. I'd go out on a limb and say that some participants do not even know full heartily what this event is for and why thousands of people run in their undies every year, even in frigid temperatures. Despite this, I enjoy every second of the day, seeing all the fun outfits ( some of them inappropriate) all the dancing, laughing, smiling, and of course, the run!

I do not like to think or even consider the fact that the cause of my death someday could very well be due to NF, but I cannot entirely dismiss this possibility, especially when my friend Kathy died due to NF. By every sense of the word, she was healthy, living her best life and not letting NF rule her. I will forever carry her in my heart and promise to live my best life without letting NF interfere.

So, why is Cupid's  Undie Run so crucial to me? Because I do not want any other Kathy's have to die because of NF. I believe that there is no better death than one caused by old age. I will always do my part in the crusade to finding a cure to Neurofibromatosis, even if it means running in a tutu and underwear. My wish is that in the near future, medical students will be reading about NF and how a brilliant team of tenacious individuals found a cure!

Kathy

NF has taken a warrior. Tonight I learned that my dear friend Kathy has lost her battle with Neurofibromatosis. I am still in shock and do not want to believe that she is gone.

How does this happen? Last time I spoke with her she was fine by all accounts, we talked about Cupid's and the possibility of her joining my team, we left it at maybe, but never brought it back up.

I was really hoping that my first blog post of 2020 would be more positive and motivational, but sadly it's not. Instead, I will dedicate this post to my friend.

 Kathy was and will forever be a fantastic, amazing and beautiful human being. We became quick friends, connecting through CTF and meeting for the first time in our native Barranquilla, Colombia. We talked sporadically, but had a deep connection from the start.  Last year she and I were interviewed by a local journalist in the Tampa Bay area, we shared our life experiences with NF and how we do not let this relentless condition control our lives. Kathy talked about her foundation and her goals as a fashion designer. Unfortunately, despite not allowing NF to run her life, it took it. 

Kathy, my dear friend, I love you and promise to continue spreading your message. Rest in Heaven. I know we will meet again.

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.