Uncle George may have told it like it is, but we got the unadulterated exclusive. Erica gave us her exclusive account of “Fungal Goes Viral: Losing My Eye to Glitter and “Going Viral” Without My Consent”
About a year ago, I lost my eye to a piece of glitter – but there’s actually a lot more to the story than that. By the time this article is over I’ll be a Nigerian Cyclops who is a member of the Illuminati, but I’m getting ahead of myself. In the beginning I’m just a mother crafting with her kid so let’s start there.
**The Actual Incident**
Valentines Day 2015 is coming up soon and my first grade daughter wants to hand make cards with all of the expected first grade stuff; adorable misspellings, backwards letters, kitten stickers and (of course) glitter. They’re the cutest. Bedtime rolls around and I clean up the art scraps. This is the point at which I make the first decision that would play a major hand in what happened. The kitchen trash doesn’t have a lid and I knew that as soon as anyone threw anything else away in it that glitter would get everywhere. I didn’t want glitter all over my kitchen, so I decided that instead of throwing the art scraps into our kitchen trash, I would take them straight to the outdoor bin. Those of you who don’t know me personally will need another key piece of information here to understand why things are about to go downhill fast. I’m approximately the height of a ten year old. At only 4’10 I’m the reigning queen of Munchkin Land.
So I munchkin-march my way to the outdoor trash cans and, without giving it a second thought, I lift the lid and drop the scraps in. These trash cans are on the tall side to try and discourage raccoons. Unfortunately “on the tall side” for a trash can means that the lip of the opening is at the perfect height to send glitter rocketing back out of the trashcan like ninja stars straight for the eyes. You know how they say that right before accidents time slows down for you? The thought process went something like:
“Oh that glitter is coming straight for my eyes. Look away! Blink! Jesus my eyes are taking forever to close… Oh crap, this is happening. Owwwwwwwwwwwwww!!”
I didn’t know it at the time, but that was the moment that would eventually leave me blind. What I also didn’t know (because I couldn’t see into the bins) was that there were yard clippings in there. If I’d had that knowledge maybe things would have gone differently. Unfortunately that’s one of those pieces of the story that the audience gets but the protagonist doesn’t find out until later. What I did know pretty much immediately was that this was not the normal “thing in your eye” pain. This went all the way to 11.
I rinsed my eye with a giant bottle of sterile saline as soon as I got inside and tried to lay down to see if it would calm down. It didn’t. Off we went to the E.R. Some tests and dyes later they found the eye to be swollen but with no signs of a hole or a scratch. The doctor prescribed some antibiotic drops and told me “It’s going to get worse before it gets better” That, boys and girls, is what we call foreshadowing.
** “Well, that’s one angry eye.” **
Two days later, I noticed the eye was milky and grey when I went to put in my nightly drops. Some people are OK with that sort of thing. I am absolutely not one of those people so I headed right back to the ER. Doctors are trained to keep their cool and not seem shocked by anything so that the patient stays as calm as possible; the doctor I saw in the emergency room that night must have missed that day. As soon as he pulled the lids open to look at my eye he made a hissing groaning noise and pulled back involuntarily the way people do when they get to the big reveal at the end of the movie Old Boy. If you haven’t seen the movie, why are you reading this? Go watch the movie! I’ll wait.
I KNOW RIGHT!?!?! THAT ENDING!?!?!?
If you have seen the movie then you’ll know exactly the response I’m talking about. It’s a combination of disgust and fascination; pity and curiosity. He coughed to compose himself before saying “Well that’s one angry eye. One angry, angry eye.” He then called for a bunch of morphine. I hadn’t told him I was in pain, but I’m decently sure anyone who looked at me could tell I wasn’t exactly comfortable. I don’t really remember the first round of tests because morphine. I do remember being told that there was now a hole in my cornea and that they were calling in a more advanced eye specialist so I should rest because I’d be there for a while. The ER staff got me pillows and a blanket and some of those hospital socks with the little nubbies on them.
Drugs do different things to different people and apparently the thing morphine does to me is turn me into a pop star who really really REALLY loves her socks. My husband is used to me living my life like a teen musical so he didn’t bat an eyelash when I started loudly singing an ode to how amazing my hospital socks were. The hospital staff, though, were quite a bit more receptive and appreciative of my musical talents. One even poked his head into the room to ask “Are you singing about hospital socks? Nice song!” My husband just sort of nodded. I threw down a few more fresh verses and eventually fell asleep. Morphine is magic.
I don’t remember much of whatever exam the advanced eye specialist did. I do remember him looking at me very seriously and telling me I need to leave and go to another hospital; not the next day, not in a day or two but right now. Yes it was 2 in the morning at this point, but that didn’t matter. I needed to go NOW. He even checked to see if the two hospitals were contracted to work together so that I could be taken by ambulance or helicopter to the other. They weren’t, so I would need to travel by car. It would take about an hour and I needed to go right now. He called the other hospital and told them to expect me and that I needed to be seen IMMEDIATELY, no waiting, just straight to being examined. If ever there was a moment to harsh my morphine-induced mellow, that was it. I was, apparently, in some real danger.
Ladies and Gentlemen, shit just got real.
**Treatment and Surgeries**
You all already know how this story ends – they couldn’t save my eye. What you may not know is that the team at Bascom Palmer Eye Institute (which is the top eye hospital in the country) tried everything they could think of and then some. It started the night I got there. My husband handled paperwork, I was taken straight back to see the doctor who was on duty. To say they were concerned with the way things looked was an understatement, but at that point nobody was really even considering the possibility that I might lose the eyeball. Or, if they were, they didn’t let me know.
Exam, eye drops, go home. Come back in three days or if it seems worse. Also, painkillers.
The pain medication let me sleep. The drops did pretty much nothing. At my next appointment the hole in my cornea had grown from 1 mm to 7 mm. This is the point at which things become a big blur of pain. Taking swabs of the eye, shaving off the outer layer of the eye for testing, injections into the eye, biopsies of the eyeball and about a million more eye drops all got to be really stressful. My days at the hospital quickly hit a point where the staff all knew me and would say hi when they got there for a shift and goodbye as they were done with that shift – with me still there being tested and prodded. More drops. No answers. More drops. “We don’t know why nothing is working, your tests are all coming back negative.” More drops. “Sorry about the pain. I don’t understand what’s happening. Let me call some of the other doctors for a consultation.”
Before I knew it I was up to several teams of doctors and twelve different eye drops, some needing to be used every hour around the clock. My insurance covered most, but not all. The expense was not small – there was one medication in particular that had to be custom made for me and another that the out of pocket cost was quoted at a thousand dollars per round. Treatment days regularly ran ten to twelve hours (pretty much every day) plus the two or three hours of drive time there and back home for a nap only to head back the next day. I would have been better served getting an efficiency or hotel room for a month in Miami, but I wanted to come home to my kids. My husband couldn’t work. Drops. Drops. Drops.
Then it happened; literal insult to injury. I was in the shower trying wash my hair when I felt it. A clump. A wad. A … something. The eye drops had been dripping down my face leaving chemical burns on my skin, but it never occurred to me that they would be soaked up in my hair. Sure, it seems obvious now – but it wasn’t something I thought about at all until I was holding a melted wad of hip-length hair in my hands knowing there was no saving it. I finally cried.
My friends rallied and before I knew it a stylist was in my living room cutting off all of my hair, trying her best to leave as much length as she could. I think we ended up with maybe 2 inches left at best. She was kind, she cared, she’s since become the official family hair stylist and colorist. At that point, though, she was just a woman I didn’t know who heard what was happening and wanted to help. She swooped in to save the day and offer a hand when I needed it. Lil Jen was also one of the first people outside of my family and doctors to see how bad it really was. If she was grossed out, she kept it to herself.
I had gotten to a point where I was light sensitive, so much so that I needed to wear super cool welding goggles any time I set foot outside of my bedroom. The eye leaked constantly so I would have to tuck a paper towel under the goggles to catch the fluid. I had no vision left, was in constant pain, was disgusted with the things my body was doing and had lost my hair. I was still no closer to any answers than I was the first day I showed up at Bascom Palmer.
My first surgery was a disaster. “Emergency Corneal Transplant under local anesthesia.” Local anesthesia works by traveling through the tissue to numb it. When the tissue is being squeezed and blocked off by insane amounts of pus, that numbing can’t happen. I felt the surgeons cut into my eyeball. I’m not a violent person in the least bit, but drugs designed to disorient you combined with blindness, pain and total confusion make a person do and say things they normally wouldn’t. More local didn’t work. I ended up needing to be put completely under – which I also woke up from. This time much more groggy and calm enough to just say to the nurse by my head:
“I can feel that again”
She was a beacon of calm and asked me to please un-ball my fists if they were balled and to breathe and relax, she would fix it. She did. Drugs are magic.
When I woke up (after I apologized for the pain and drug induced attempted murder I had just committed) they explained that they ended up having to do a little more than they initially intended. The plan going into surgery was to do a cornea transplant. Once they got into the eye they realized the glitter had sliced much farther back than they thought and implanted the infection to the back of the eye, which is why all of the tests from the front had come back negative. They needed to remove the lens of the eye as well as a good amount of the vitreous in order to clean out the pus and the decaying tissue. At this point, even if the cornea transplant worked and restored vision, I would be unable to focus on anything. The swabs from this surgery revealed that the infection was a fungus – specifically a plant mold. My eye was molding in my head.
Surgery two followed just a few days later. This time it was an emergency procedure to put my iris back in the right place. The pressure from the vomiting and the way the pus came rushing back managed to push my iris out from between the stitches. I didn’t even know that was possible, but I guess fungal infections hit hard and fast. The transplant was obviously failing. This time they took out as much of the vitreous as they could with the hopes that the eye would create more healthy fluid and refill itself.
For a week or so it looked like it might and like things might be improving since the corneal transplant looked like it was trying to heal.
It never did.
Healing stalled, the fungus took over again and the eye started forming opportunistic tumors and collapsing in the back. After being at the hospital almost every day for a month the surgical and medical team was visibly upset when they had to sit me down and tell me there was nothing more they could do to try and save my eye. More than one person apologized, feeling like they had failed me. My husband and I thanked them for having tried as hard as they did. We had been expecting it and, truthfully, were looking forward to things just being over. I had the enucleation surgery – surgery to remove my eyeball – that same day. I was fit with an internal prosthetic sphere that the muscles are stitched over to allow some movement.
A few months later when swelling was reduced I had a beautiful external prosthetic (what people think of as the “glass eye”) done by SNG associates. Insurance declined covering that so my family had to take out loans to get it done, but it’s a beautiful piece of artwork, in my opinion. A year has passed since then and I do need some adjustments and follow-up surgeries, but I’m no longer in any immediate medical danger. I don’t hate glitter, I know this was a freak incident. I do think small children should wear craft goggles when using it to protect their eyes.
THAT is the real story of how I lost my eye, and had I written this article a few weeks ago when I was first asked that would have been where it ended… but it turns out that’s actually only the beginning.
** “Awful Make-Up Accident” **
The first few times I was tagged in articles that were being written about me I laughed. They were ridiculous trashy rag-mag sites that nobody actually reads seriously. Then Women’s Health, Cosmopolitan, Good Housekeeping, a few celebrities and finally a click-bait site designed to share viral stories got a hold of it. That click-bait site owns 1.4 million other sites and it ran a false version of my story across them. Suddenly friends and family were sending me multiple articles a day. The articles and stories changed a little over time. Sometimes I was getting ready for a date, once I was even a Nigerian socialite. I wouldn’t mind this so much if they were telling the story with any kind of accuracy, but in most cases they weren’t and in all but ONE case I wasn’t asked, consulted for clarification or even notified – but because these are “news” publications and I uploaded the images to a site that could be considered public, these sites didn’t have to ask. It was all fair use.
The unofficial rule of internet is “don’t read the comments section” but I’m not exactly one for playing by the rules. “General Joia” read the comments right along with me and spent days hunting down articles to correct the story – Punky Moms band together that way. She stood up to the people who said I was trying to get something for free because I had a GoFundMe. She was the one who had set it up for me to begin with because she knew I would never ask for the help. She was quick to jump on people who said it was my fault or that I deserved it.
I “deserved” to lose my eye and to be painted like a fool across the internet… what an interesting thought. These sites took my images without asking or even notifying me. These sites added images that were not mine to “support” the new story they were running with. These sites spread that story all around the world. All I was guilty of was trying to keep my friends and family updated in a way that was easy for me to do quickly and give the link to a few people knowing they’d give it to others. I found out later there was a way to do that without making the images public, but I didn’t mind other members of the site being able to see and learn from what had happened to me. There was a message and a warning in the original story.
This new fabricated story, though, was the one that went viral. Like I said, because the sites are “news” sites, they don’t actually need to ask before taking anything and if they’re international then the rules apply even less. The lie is what caught on and the floodgates opened. Before I go any further into why I found this so interesting and what I think we can learn from it, I want you to grasp the sorts of things that are being said, so here are some snippets from the last few days:
“Welp, don’t be fuckin stupid”
“She should have had about 12 pounds removed from her face. A better headline to this story would be ‘one eyed woman has diabetes’.”
“Someone basically put glitter on a water buffalo and then we are supposed to act surprised it didn’t work? Come on be realistic.”
“I think most people will agree that she is lucky. We have to see that train wreck with both eyes! She only got to look in the mirror with one.”
“It’s not a makeup accident. It’s a stupid cow not going to the doctor issue. Don’t blame the glitter!”
This next one is the final paragraph of an actual article written about me. I opted to leave the grammar assassination just the way it was published.
“Now she got one more reason, or (one less) either way you cut it, to collect more welfare. You know damn well this b*tch prolly acted hard before the incident, now she milkin the system on GoFundMe… Word to the wise, you see a thot with chest tattoos, run the other way! Them girls are DANGEROUS & got more miles on em then a 99 Honda…”
“Rusty looking tattoos on a hog with one eye and three chins, smh.”
“That’s why I don’t wear makeup all the time. She’s gross. Skank.”
“My friends, please show this to ur wifes so they stay natural”
“Serves her good. Let others learn from this whore.”
“Shame. But what did she expect putting all that crap on her face?”
“She had it coming.”
“I love learning about such idiots. Too bad the glitter only killed one eye, you think the twit still uses glitter? Now she can’t work so she gets a welfare check for life, or at least until some parasitic lawyer sues the makeup company for this girls stupidity.”
“Fuck outta here. Beauty is natural. Fucking immigrant.”
“Well that’s her fault for putting on makeup. Keep it natural. She’ll never get a husband painted like a prostitute.”
“This story is bullshit. When people are missing left eye is because they pluck them out to join the illuminati like Fetty did.”
“Blah blah blah cry me a river.”
“Dat serve her right”
“Women need to leave their eyes the way God created them.”
“No love here, fuck her stupid people nowadays wanna do anything to themselves. Well face the consequences.” (someone explained to the commenter that the article was wrong.) “Well I’m sorry bitch if I was wrong come suck my dick.”
And about a million jokes comparing me to the rapper Fetty Wap. Usually “Fatty Wap”. Originality is not the internets strong suit.
This is going to sound crazy, but I think losing my eye and my hair uniquely prepared me to deal with this. I came out of those surgeries stripped of the things I thought were beautiful about myself. By the time it was all said and done I had lost an eye, lost my hair and gained 65 lbs. It also made me stand face to face with all of my real flaws, real fears and to find my real beauty. I had quit performing years before because I was too short, too fat, too ugly to deserve to be on stage. Being faced with the possibility of death-by-glitter has a way of waking you up. I’m not any taller, any thinner or any prettier than I was when I quit performing, but I am back on stage. I sing in a rumba-punk band called Askultura. I can do that – I can follow my joy – because I know exactly who I am and who I am not. Not everyone who deals with this is in that position.
**The Culture of Keeping it Quiet**
As I began speaking on these comments and sharing screenshots of them on my social media, I started to notice that aside from the expected anger response from my friends, a pretty decent chunk of people told me that I shouldn’t talk about it. The reasoning behind it, usually, was that they felt that discussing or sharing these comments gave them more power and a stronger voice or that talking about it somehow made it cut me more deeply.
My opinion on it is different. I think it’s important for people to be made aware of what gets said to and about people whose stories “go viral” without their consent. There are lessons to be learned here about the complicated reality of “going viral” and what the “news” can and cannot use with or without you wanting them to. In my case, I’m a self-assured woman in my thirties who has a quick wit and a biting sense of humor. My friends and I had been joking about my evolving identity as these stories came across our desks. Some will ask me if I know that Nigerian Prince who used to email them all the time. Some have joked about whether or not the illuminati gets you good discounts. One even calls me “50 Camel Goddess” because of some messages she has seen. These mean-spirited comments being made on or in articles aren’t going to say anything about me that I haven’t heard or maybe even joked about myself before.
Can you imagine the impact on someone younger or more vulnerable who “goes viral” or becomes an unflattering meme; especially if the story includes some sort of sexual aspect – even if the sexual aspect is a violation of the person in question? Go ahead and re-read the comments I shared with you earlier, this time paying special attention to the way that a completely non-sexual story was reacted to with sexualized insults. This is cultural conditioning. This is what happens when we decide that female value is in “virtue via virginity”.
This story had nothing to do with sex, but in order to insult me the comments chose to focus sex and my appearance. Why? Who cares? I’m not sure if the people who comment with these things even know themselves why they chose to say what they say. It’s just ingrained in people that when you attack a woman, you attack her appearance and her sex.
I am, by no means, an expert on internet-shit talkers. But I wonder how can we have honest discourse and conversations about this or how we can educate one another( and our children who will entering the world of internet use more heavily soon) if we don’t just put this behavior out there on the table for everyone to see? If I don’t post them people don’t know it happens to me. If others don’t post screenshots or talk about it so that the “negativity” can’t win, how can we learn from it? I understand that those who say to ignore negativity mean well, but not everyone processes things that way.
What some of you may see as giving the trolls validation and a voice, I see as shining a light on them and showing people exactly what kind of ugly is spouted. Silence, anonymity and the fact that people don’t talk openly and matter-of-factly talk about this is part of what allows these people to continue doing what they do. If, every time this happened, people just threw it out on the table for the world to see I don’t think it would happen as much. Cockroaches prefer the darkness. The culture of keeping it quiet enables this kind of behavior, and worse – but we will save worse for another article. Just make a mental note that Erica has a BIG problem with the culture of keeping it quiet.
If this is an open talking point then it becomes something we can prepare ourselves and our young people for. I don’t mean with the trite “if you don’t want it stolen don’t post it” victim blaming kind of conversation; though I do think awareness of terms of service and online privacy (or lack thereof) is an important point. I also think the knowledge that things that seem immoral are often perfectly legal is another thing all of us could benefit from. But more than that, I hope to make sure that people understand that this sort of behavior isn’t acceptable for them to DO either. Even “just a comment” can have an effect and there IS a human being on the other side of these memes and stories.
How many times have we heard about vulnerable people being driven to self harm because of the way they have been targeted online? How many times have those stories included the family saying they were surprised at how vicious the comments were or that they had no idea anything was being said at all? When no one talks, no one knows.
We can do better to prepare young people for the things that may be said to them or about them if they end up “going viral” or even on just a random picture or post. We can do better to instill self-worth and self-assurance that rises above a place where the words of others can cut to the bone. We can do better to understand that reaching that point is a journey and that people will get there in their own time, just because you or your friends and family don’t care doesn’t mean someone else is wrong or weak because they do. We can do better to not shame those who haven’t gotten there yet and who do still worry about the opinions of others. We can do better to bring up a group of young people and to try and educate adults to be more capable of abiding by Wheaton’s Law. The culture of keeping it quiet keeps people thinking it only happens to them, it keeps them isolated from the group, it makes it easier for people to be convinced that something like this is THEIR fault.
These conversations cannot be had if nobody puts the negativity on display. So I do it, proudly. I had my story taken and twisted without my consent and that lie went viral. That was legal. People said horrible things to me and about me. That was legal. No, I don’t usually feel bad about it. The comments don’t typically cut me, though there have been some exceptions. I know that these comments would hurt some of you if you had to hear or see them constantly. I know that some of you or some of your kids or friends do hear and see comments like these, and if it hurts you I respect that. I’m here to talk to you about it if you need an ear.
You’re not alone. Let’s talk about how we strengthen ourselves to deal with it and how we can work towards maybe stopping it altogether one day. Who better to have in your corner than an unintentional Nigerian Cyclops Illuminati member?
Because Erica is an amazing and humble lady (well, in some ways, and larger than life in others), she did not add a link to her GoFundMe to this article submission. I am intentionally adding it (with her permission). Between what her insurance refused to cover, and lost wages between herself and her husband, shit adds up, and it adds up quick. Been there, done that, recently, with a not nearly as scary medical emergency, in my own household. A little bit of help would have been amazing, a “lot of bit” of help would have been a miracle. So if you have a buck to share, please consider sharing it. If not, please consider sharing this article to get the official word out. Punky Moms stick together. <3 Jenn
Wife, mother, beach-bum and ass-kicker; Erica has learned to embrace her particular brand of awkward and hopes to use it to inspire others. She’s a writer and owner of NerdSwag by day and a rock star by night (and sometimes mid-to-late afternoon, depending on rehearsal schedules and how her eyeliner is winged) when she sings with her band Askultura. She’s always available to speak open-mindedly about religion, feminism, sexuality, psychology, empowerment and keeping ones eyebrows on fleek.