Life, NF, and 2020

Where has this year gone? In January, I started a new job, and as I was getting my sea legs with Vocational Rehabilitation, Florida, I went into quarantine. I think I can speak for the majority of the world population when I say that this year has been unfathomable. COVID has wreaked havoc across the world, killing millions in its trail. I am blessed that I have not lost anyone in my inner circle due to this virus; however, 2020 has not been free of death for me. 

Towards the end of January, my friend Kathy passed away due to NF complications; her death shook me to my core. It was the first time that I saw my mortality; for the first time, I realized that NF could one day be the cause of my death. 

In September, one of my closest friends lost the love of her life. He was only 30. He was a healthy man by all accounts, but he had a pulmonary aneurysm one night in early September and did not recover. An autopsy later revealed that he died due to heart failure. Two weeks after his death, I received a phone call from Colombia; Uchi, the woman that had been my nana, was in a medically induced coma. She had suffered a pulmonary aneurysm and two seizures within hours. Doctors ran multiple tests, but there was no brain activity. She died two days after the aneurysm. I decided not to share the death of Uchi with my friend, she was mourning herself, and I could not burden her with my loss. 

I most recently experienced the loss of my fourteen-year-old boxer, Ki-Bo. On November 28th, I said good-bye to my most loyal companion. A month after his passing, I still expect him to be at the door when I get home. I miss hearing his snores. I miss his licks and wet-nose kisses. I miss his head on my lap and his puppy-eyes digging into my soul. Ki-Bo, helped heal my broken heart after my dad left and kept me company as I recovered from surgeries. He forced me to get out of the house and go on walks when I was depressed. Ki-Bo had the most fabulous happy dance, those that were lucky to witness his wiggle and four-legged jumps know what I am describing. He will forever be my fur-angel. 

COVID altered many plans, for example, my trip to Paris, France, to visit my best friend in September. My trip has forcefully been postponed until this pandemic no longer is. I also planned on taking the GRE in October, but a week before my exam, the test center closed due to COVID. Now I am taking the test in March 2021. I am not too bombed about my exam being rescheduled; I actually need the extra study days. However, I have not taken advantage of this gift that COVID has given me; instead, I find myself with what I have named twenty-twentyities. Do you recall seniorities? Well, same concept but for the entire year of 2020. 

Despite everything that happened this year, I have many reasons to be grateful. I choose to hold on to those instead of gravitating towards the moments of 2020 that shattered me. It's the same concept I utilize when dealing with NF. I know that this concept is hard to grasp for many but think about it, by actively choosing to look at all the good in your life, life becomes a little easier; this does not mean that you ignore the hurt and pain; it just means that you acknowledge it but choose not to make it the center of your life. 

All I have seen in social media is how eager people are for 2020 to end. However, when the clock strikes midnight, nothing changes. Time is relative, and unless you actively change, 2021 is and can be just like 2020. We are currently living through a pandemic, and despite having multiple vaccines, it does not change the fact that COVID is alive and, for lack of a better word, thriving. The only way that this virus will weaken is if we all play our parts and consciously make an effort to wear masks and keep gatherings small. I do not want to get political, but this year has highlighted how racially driven this country is and how racism is a pandemic itself in the US. There is so much that needs to improve and change for humanity to continue because we will self-destruct at this rate if nothing changes. 

For now, my goal for 2021 is to be a better version of 2020 Angela. I am happy to send off 2020 with my family and start 2021 with them. 

Happy New Year! 

Ki-Bo

Ki-Bo means hope in Japanese, and that is exactly what he did when he entered our lives. Ki-Bo became part of our family in October of 2006 at four months old. This past Saturday, November 28, at 14 years old, I had to say good-bye to him. My heart is shattered, and I cannot begin to express the sadness and emptiness I currently feel. I woke up Sunday morning and was startled when I did not see his sleepy face lying on his bed. Tears immediately poured out as I realized that I will never again wake up to his snores or his cold snout. I miss him terribly. 

My mom, brothers, and I got Ki-Bo a month after my dad left. A few weeks before my brother Fransico brought him home, our friend Dai helped pick out a name for the soon to be the newest member of the family. I still remember the five of us huddled around the kitchen island, my mom, my brothers Andrés and Fransico, Dai, and me. My mom asked Dai, what the word for hope was in Japanese, he responded, Ki-Bo, and it stuck. 

His first weekend with us, he got stung by a bee above his eye during his first trip to the park. His face was so swollen, but it did not diminish his spirit of curiosity and playfulness. Ki-Bo was not the typical dog that chewed on shoes; instead, he ate plants. He once ate five orchids my mom had bought on sale.  He was bilingual and responded to numerous names, always coming to the person that called him with big happy eyes, floppy ears, and a huge smile. 

Ki-Bo brought life back to our home after my dad left,  with his spunkiness and clumsiness, tripping over his oversized paws. He filled the void left behind by my father. He helped heal the four of us. I grew accustomed to coming home to his happy dance and kisses, making his loss so much more heartbreaking. I miss him, I miss playing hide-and-seek, I miss walking with him, and I even miss waking up at 3 in the morning so he can be let out to pee. 

After twenty months of battling cancer and arthritis, Ki-Bo is resting and in puppy-heaven. I came home Friday to find him lying under the coffee table, unable to get up. I helped him up, but his hind legs gave, and he fell. I thought it was because his legs were numb, but I was mistaken. He lost his ability to walk and was in tremendous pain.  My handsome 14-year-old pup gave me one last wet- cold snout kiss as I gave him his medication on Friday night. He slept through the night and woke up with more pain on Saturday. I called the veterinary's office early Saturday morning and took him in at 9:30 am. He was gone by 10:30 am. 

My house feels different, odd, empty, too quiet. I know it's going to take time for me to become accustomed that he will never again wake me up at 3 in the morning to pee or give me puppy eyes so I can give him some of my food. Ki-Bo may no longer sleep at the foot of my bed, but his essence, his spirit will always be with me. 

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.