Social Rejection

 This week, I have felt an overwhelming amount of sorrow. I cannot identify an exact trigger that has caused me to feel this way, but I cannot ignore it. I don't know if this is the start of episodic depression or if it's my subconscious is filtering into my conscious, and my fears and insecurities are sipping through. That annoying, horrific voice is taunting me, and I am doing my best to silence it. After introspecting, I realized that Brianna Solari's story affected me more than I initially realized. 

I strive to live and redefine society's beauty standards, but I am struggling. I surround myself with incredible souls who love and support me unconditionally and always uplift me. With them, my mind is quiet, but when I am forced to be with my thoughts, my fears and insecurities creep up. I first learned of Brianna Solari on Instagram. I quickly read her story, making a mental note to read further, wanting to get the full story instead of an excerpt. Yesterday, I did, and I made my own post on Instagram. Why, I do not know? I have no idea how my anger and complaints against Southwest will make a difference. My voice is not loud enough. All I can do is share her story in the hopes that it will not be forgotten and that no one else with NF or any other physical difference has to experience discrimination and humiliation like that again. 

I understand the fear of communicable diseases, especially after COVID-19. However, that does not give anyone permission to discriminate and spew hatred because someone's physical appearance makes them uncomfortable. On the day of Brianna's flight, she stood precautions, wearing a headband and a mask, effectively covering most of the scabs on her face. The scabs were the result of surgery she had the day before to treat her NF. Now, if the scabs were wet or secreting puss, I would understand Southwest taking precautions. However, Brianna is a nurse, so she would know better. Also, her doctors would not sign off for her to go home if she was not healing according to plan. 

Yes, Southwest did not handle this well, but I assure everyone that this happened because one passenger complained and threatened with something; the crew member did not see another resolution other than escorting Brianna off the fight. Brianna was booked on a flight five hours later, but not before having to disclose her medical condition and her surgeon providing a letter confirming that she was healthy and did not pose harm to anyone. All of this could have been prevented if the flight crew had agreed to read over Brianna's discharge papers, but they refused, insisting that she needed to be seen by EMS. Per the various articles and news stories I have seen over the last 24 hours, she was not checked by EMS at the airport. 

I know some may think or say that I am obsessing over this incident, but I do not think so because this could be me, my mom, anyone in the NF community, or anyone with a facial difference, and that makes me angry and hurt. 

I hope Brianna knows she is not alone and has a sister in me. I wish I could give her a huge hug and validate all her feelings. 

So, this week, I am filled with sadness. I'll bounce back, as I always do. 

The Eye Test

 I've been failing my self-administered eye test. A few weeks back, my friend Chantal took me out for my birthday. Our first stop was CW's Gin Joint, followed by Hotel Bar. When we walked into Hotel Bar, we found two empty stools by the bar and planted ourselves there. We casually started talking to the mixologist and another patron. After getting our drinks, we casually continued speaking, but I suddenly turned my attention to a conversation that was being held by the mixologist and with a gentleman I later learned was named Alex. After a few short minutes of back and forth, the bartender exited the conversation to attend to new customers, but Alex and I continued speaking. 

CW Gin Joint

He looked at me and said, " You know, I know you." I was taken aback as he shared that he attended USF's This is My Brave; his friend and fellow member of This is My Brave 2024, Ciara, invited him. I was in awe as he went on to say that as soon as he walked into Hotel Bar and saw me, he wanted to talk to me and thank me for sharing my story. He urged me to continue sharing it because others needed to hear it. He went on to say that my face was the first one he saw on the show's playbill and that he was intrigued but in awe after he heard me speak. It was during this conversation that I learned about the eye test that atheists are put through. 

I have to admit, I've been revisiting our conversation on and off since that night. Not because he showered me with compliments but because he taught me a huge lesson. Since 2022, I've simply been making quick decisions and judgment calls based on my current state. I have been dismissive of all the collective attributes that I possess and instead have been telling myself I am not worthy. 

Honestly, the negative talk has been excessive. The saddest part is that I am so good at it that it catches me off guard at times. Even though I have actively worked on correcting the negative talk this year, since my conversation with Alex, I've been more conscientious about my internal conversations. Yes, my body is different, and for the better part of a year and a half, my body was rejecting a foreign
object that was supposed to keep me safe. I was on two strong antibiotics, and I was underweight, depressed, and anxious all the time. I was not okay. 

Today, I am better. I am not 100% sure, and that is okay because I am aware that every day brings its own challenges and, more importantly, rewards. My new goal for this 37th year of life is to pass my own eye test.

This is My Brave: I Dare You

 On Friday, April 5th, I participated in USF's This is My Brave College experience. I stood on stage, vulnerable and naked ( figuratively), and spoke my truth. I performed an original poem titled, I Dare You. I was inspired by the events after an influencer "blessed" me with cash. I used the cruel words from strangers as a tool to write this piece. 

Below is my poem, enjoy. I will share the link to the performance as soon as it is available. 

Look at me.

Go ahead; I give you permission.

I’ll stand still.

Quiet

Look at me. 

Go ahead; I give you permission.

You can laugh

You can point

Look at me!

Go ahead; I give you permission.

Call me names.

I've heard them all:

You’re an abomination 

You’re fu-gly 

You’re a monster

You’re a mutant

You’re ugly

I said, 

Look at me!

Go ahead; I give you permission. 

Look at my droopy face.

Look at my protruding right eye, 

It’s a prosthetic 

Look at my scars.

You done? 

Now, See me.

Go ahead; I dare you.

Do you see me?

The woman, standing before you?

Here I am, despite you,

I am not afraid.

I am Standing tall.

Outspoken. 

Unbroken,

Brave.

See me.

I dare you.

Social Media-ing with NF

 I have been contemplating sharing this experience because I felt ashamed for being such a fool and was angry at myself because I fell victim to a wanna-be influencer on Instagram. While I never intended to talk about it, NF has gotten in the way, so I will be vulnerable and share. 

The day before Thanksgiving, I was walking into my local grocery store when a man approached me. I noticed him and his companions a few feet away as I exited the car. The man, let's call him LeFou, still walking behind me, asked me if I wanted a blessing; I turned around, and he again asked if I wanted a blessing. I thought he would say a prayer because, in the past, this has been my experience. Suddenly, one of his companions got right before us while the other two popped confetti canons as LeFou blessed me with cash. In the video, I am in complete shock. I took this cash and am ashamed and angry for doing so. I still have the money; I feel dirty for having it and do not know what to do with it. The whole interaction took at most 30 seconds. In hindsight, I should have said no. I should have given him the money and asked him to delete the video, but I didn't because, at that instant, I did not consider the events that would follow. 

For those 30 seconds, I forgot all about NF and my facial difference. I know perfectly well that if I did not have a facial difference, this post would not need to be written, but alas, NF...

Two weeks later, my little sister sent me a message on Instagram and asked me about a confetti shooting video I was in and a man giving me cash. Ironically, she was not talking about the video that LeFou made but one that another Instagram influencer did; we shall call him Timon. Timon has made his mark in the world of social media by making satire and commenting on videos like the ones LeFou makes. Timon claims I was "hired" because he knew Lefou would profit from the video. Timon also argued that LeFou was not being genuine with his actions. My little sister, being her incredible self, reached out to Timon and cleared up a few things about me and what had occurred in the video. Her interaction with Timon led to Timon and I communicating on Instagram. 

So, now I am not on one but two reels on Instagram. Both platforms have well over 500k followers, and although the intentions of both reels are different, the outcome is the same: me. I have become the punch bag for awful and hurtful comments. Both platforms have put me on center stage and left me there for their audiences to do as they please. After speaking with Timon, I asked him to give me LeFou's Instagram, and I regretfully decided to view the clip. I was disgusted at the clip's presentation, but even more so at the comments, people made. I've read comments on both platforms, and Timon's followers are not as ruthless; if anything, the comments are more geared towards LeFou and how distasteful and disingenuous he is than on my physical appearance. Also, Timon has responded to a few of his followers and "defended" me.

After talking with Timon, I messaged LeFou, hoping he and I could clarify a few things about the video and his followers' comments. It has been almost three weeks since I sent him a message and crickets. This, unfortunately, proves Timon's point that all LeFou cares about are views, likes, and comments, even if they are at my expense. The vast majority of comments on LeFou's platform are beyond disrespectful. Seeing the GIFFs and others laughing at them hurt me to the core. I do not understand how someone who is "blessing" people allows followers to leave comments filled with hate. LeFou is not a kind human being; his blatant disregard for my message and inability to stop cyberbullying only prove that he cares about himself and not the people that he claims to be "blessing."

After feeling like I lost a bit of myself due to social media and the desire to gain views and likes, I decided to take control of the narrative as much as possible and commented on both videos. I first commented on Timon's platform, not expecting much but hoping that my comment would not backfire; it didn't because I have received likes, comments, and followers.

Yesterday, 01/05/2024, I decided to view the comments on LeFou's video; I think that subconsciously, I knew that I needed to see the painful words to snap and comment. To take back control, so that is what I did. Surprisingly, I've received likes, comments, and a few followers as well. 

I do not know what is to come due to these two clips that are now forever part of the social media realm, but I know that I am more determined than ever to spread my message of acceptance, tolerance, and love for all. People need to realize that words hurt. Words have the potential to cause irreparable damage. I know this because I still have vivid flashbacks from middle school, and I am an adult woman in her 30s. 

The Culprit is Gone

One month post-up, and I feel amazing. Recovery from this surgery has been so different when compared to my traumatizing previous surgery. With this one, there was no ICU and, most importantly, no trach. In recovery, as a nurse checked my vitals and dressing, she asked how I was feeling. I nonchalantly  responded with, " I am good, but the doctor didn't give me boobs." The nurse stopped what she was doing, pausing to ensure I was okay before laughing. I followed up by saying, "So if you were giving me a neurological test, I just passed it, right?" This time, she continued working on me and said, " Yes, yes, you did." 

By 8pm on 10/16/23, I was transported to my room. Unlike my previous surgery, I was cleared to consume clear liquids. After 20 hours of not eating, I wanted to put food in my stomach, but unfortunately, the cafeteria was closed. Thankfully, my friend Pachy, who had accompanied my parents in the waiting room during my surgery, offered to get us food. That evening, I had the most delicious wonton broth. After my friend left, I settled down ( as much as possible, given I was in a hospital bed) and attempted to sleep. I was surprised that I could sleep on and off throughout the night, only waking to readjust and when the nurses would check my vitals. 

Early the next morning, Tuesday, 10/17/2023, Dr. Tran walked into my room as I fell asleep and enthusiastically announced that I would be going home by the afternoon as long as I continued to progress. Challenge accepted! Since I had been tolerating water and broth, I was cleared for a regular diet; I ordered scrambled eggs, bacon, and tea for breakfast! Later that morning, after I had consumed my first real meal in 48 hours, my nurse came into my room for my morning exercise. I knew that if I did well on my loop around the nurses' station, I would get brownie points, and the chances of being released would increase, so I did two loops. I know I am an overachiever. 

Shortly after lunch, my nurse walked into my room with a huge smile and informed me that I would be released that day! Both my surgeons and Dr. Yasukawa ( with infectious disease) signed my discharge paperwork. I was only being held back by the hospital pharmacy for my medication; other than that, I was set to go. I made it home just in time for the evening news! 

For the last four weeks, whenever I have been asked how I am feeling, I have responded with, " I feel like me again." My family and friends who have seen me have shared my sentiment, adding that my entire face changed, including my facial expressions. Even though I still have facial paralysis and a skin graft that protrudes, for the first time in almost two years, I like the image that stares back at me in the mirror. 

Now that the mesh is gone and there are no open wounds, I can focus on other aspects of my life, such as renewing my Colombian passport to visit my family! I honestly do not know how I pulled myself together enough to pass my first semester of graduate school with two A's because the level of depression and anxiety that I was going through was severe.  I would like to think that I managed work, grad school, chronic infection/wounds, and my mental health because I have a whole lot more self-awareness than I did in my twenties and because I reached out to my people when I needed to talk. Whatever the reason that has gotten me through these last 20 months, I am grateful and thankful and pray for continued strength because I know this was a battle win, but there is much more to come. I am ready!

Removing the Culprit

 On October 16th, I walked into Moffitt for surgery number 24. The purpose of the surgery was to remove the titanium mesh. It's ironic how the mesh that was supposed to protect my brain and keep me safe and healthy caused havoc in my life. My body ultimately rejected the titanium mesh. Thankfully, despite the rejection, the skin flap remained healthy. 

I did not want another surgery. I was traumatized from the last surgery, and for the first time in my life, I was afraid of having surgery. However, after 40 sessions of hyperbaric treatment, MediHoney, collagen, and transplant of cellular tissue, the wounds not only remained open but had gotten bigger. The entire medical team at the wound care clinic did everything imaginable to help my body heal, but nothing worked. 

These past 18 months have been beyond difficult for me. My depression and anxiety were evident. I was not in a good place. My thoughts were dark. I was hopeless. I felt as if I was an intruder in my own body. I was angry that after everything I have been through, my body was failing me for the first time, and I did not understand why. I found it challenging to look in the mirror and see how surgery #23 drastically changed my face. Facial nerve paralysis, a bulging skin graft on the right side of my face, and a trach scar were the reasons I feared going back into the operating room. If those were the results of surgery #23, how would I look after another? My typical sunny disposition lessened as the wounds remained open and more prominent, and the infections remained. For well over a year, I was on two antibiotics; from July to October, I was taking two different antibiotics to kill and prevent the re-emergence of infections. I feared that I would have to take these antibiotics for the rest of my life and the adverse effects they would have on my liver and immune system. 

In mid-August, I spoke with Dr. Patel, head and neck surgeon, and agreed to surgery. His initial plan was to only remove the exposed mesh, leaving the majority intact. He spoke of using a wound vac and other grafts, such as cadaver skin. I left that appointment feeling defeated. When I got home that afternoon, I sat on the sofa and cried. I cried because I was afraid. I cried out of anger. I cried because I felt powerless. I cried because I missed being me. I cried because I was tired of having to be hypervigilant with the wounds. I was tired and wanted the mesh out of my body, but my doctor did not believe the entire mesh needed to be removed. 

In September, I spoke with Dr. Tran, the neurosurgeon. He proposed removing the entire mesh because that was the only way to prevent my skin from opening again. He explained that my body rejected the titanium and that having a persistent infection does not allow healing. I expressed that I agreed but that Dr.Patel only wanted to remove the exposed section because he did not want to lift the entire graft and risk the graft being compromised. Dr. Tran informed me that he would speak to Dr. Patel and recommended that the whole mesh be removed. I left that appointment feeling less defeated but filled with uncertainties. 

I sought a second opinion. I initially attempted to speak to Dr. Johnson, a surgeon at Shands Hospital in Gainsville, but that proved more difficult than I imagined. This surgeon's office is antiquated as they only accept referrals via fax. I spent the greater part of three days and over 50 attempts sending the required documents to two different fax numbers to Shands from my work fax to no avail. I finally sent the documents to Dr. Johnson's office from my PCP's office. I called Dr. Johnson's office the following Tuesday, and they confirmed they had received it; I was informed that I would receive a call within 72 hours telling me if my case would be taken. Two weeks passed before I heard from his office. 

While I waited to hear from Dr. Johnson, I was connected to Enzo. Enzo is a friend of my parents and a plastic surgeon that operates in Brasil and Colombia. He and I spoke about my previous surgery, the wounds, and my body rejecting the mesh. He explained that he did not have experience with a case such as mine but offered to speak to a fellow surgeon in Brasil that did. With my permission, he sent her a brief medical history with pictures. Within 48 hours, I talked to Dr. Cardim; she explained how she would handle a case like mine, stating that she would remove the entire foreign object and allow the body to heal before operating and, if needed, placing something else in the area. In my case, she explained, she would not operate again due to having a history of rejecting foreign objects. Dr. Cardim advised me not to pursue surgery with a new medical team; she explained that Dr. Patel and Dr. Tran know my case and body best and that a new surgeon could potentially be more damaging because they were not part of the medical team that did the skin flap and mesh. Deep down, I knew this, but hearing this from a surgeon eased my anxiety. 

Part 2 coming soon. 

My NF Life Update, First Half of 2023

My last post, Finding My Attractiveness...Again. It was written half-heartedly, an attempt to publish a post since I have not been as active on my blog this year. My friend Izzy mentioned my lack of blog posts during Cupid's Undie Run in February. I considered removing my latest post but opted not to because even if I am not a fan of what I have written, it helps at least one reader. 

Cupid's Team 

 I've been away because I'm uncomfortable in the body I am currently in. I have been in and out of depressive moods since I was released from the hospital last year. I do not identify with the reflection I see, which devastates me. I desperately yearn for my smile. I am exhausted mentally and physically. 

In December of last year, I was referred to a wound clinic for medical care for the two temporal wounds. Since January of this year, I have undergone 40 hyperbaric chamber treatments and various therapies, such as Medahoney and topical medications. Additionally, I am getting lymphedema massages through Moffitt to aid in the reduction of the lymphedema I developed after surgery last year. 

 Overall, there have been improvements to both the wounds and lymphedema, which is reliving. My medical team is doing everything possible to prevent me from undergoing another surgery, number 24 or 25... depending on who you ask! In order to tolerate the hyperbaric treatments, I had to have a tympanostomy tube, AKA ear tube, placed in my left ear. It was a five-minute procedure completed at my ENT's office, I do not consider this a surgery, but my mom disagrees. What do you think? 

So, this has been my 2023 thus far. It has been a challenging year, but nothing I cannot handle. I know better things are coming to me; I must first overcome this health hurdle.