Lily Simon, 33, of Brooklyn, does not have monkeypox. She has neurofibromatosis type 1, a genetic condition that causes tumors to grow at her nerve endings. These tumors were surreptitiously photographed by a TikTok user while Ms Simon was on the subway on Thursday in late July while commuting.
In the video, Ms. Simon is sitting on the train wearing shorts, a T-shirt and a leaf-adorned mask. She looks at her mobile phone, unaware that she is registered.
The video was later posted to TikTok with a monkey emoji and a question mark at the top, suggesting that Ms Simone may have been riding the subway with an active case of monkeypox, and the virus was recently declared a global health emergency by the World Health Organization.
A few days later, Mrs. Simon’s sister called her. You have seen the video. “Some of her friends have reached out to her,” said Ms. Simone. She said the news hit her “like a pile of bricks.”
“I’m not new to people dealing with this condition,” said Ms. Simon, the project manager who used to work at The New York Times School, an education program that is part of the New York Times. “I’ve had it since I was a kid.” Last in cases of monkeypox, I thought something like this was “inevitable”.
A common symptom of monkeypox is a painful rash that turns into raised blisters that eventually peel and fall off as the virus continues its course. While most people who contract the virus will develop blisters, experts say there may be only one lesion or the blisters will be localized to a person’s genitals.
In the TikTok video, the person who signed up enlarged Ms Simon’s arms, legs and ankles, as her small tumors appear as raised bumps on her skin. As a child, Mrs. Simon said she was called a “leper” and her elementary school classmates joked about her having smallpox.
She was initially weighing whether or not she would respond. “My heart was pounding and suddenly I had to make a decision,” said Mrs. Simon. “Do I like fighting it? There is no hiding that it is me. Or do I like how I can respond to it?”
In the end, she decided to craft her response to the initial video. (In TikTok, fitting a video means adding a new video to an existing clip on the app. In this case, viewers can see a few seconds of the original Subway video before Mrs. Simon appears on screen and tells the whole story.)
“I will not let anything like this go,” Mrs. Simon said of her choice. “I can’t seem like a coward, and I’d rather stand up for myself than just let it go.”
What do you know about the monkeypox virus?
What is monkeypox? Monkeypox is a virus similar to smallpox, but the symptoms are less severe. It was discovered in 1958, after outbreaks occurred in monkeys kept for research. The virus has been found primarily in parts of Central and West Africa, but in recent weeks it has spread to dozens of countries and infected tens of thousands of people, mostly men who have sex with men. On July 23, the World Health Organization declared monkeypox a global health emergency.
“The tumors are benign, but they are still spread all over my skin and cause me a lot of physical and mental health complications,” Ms Simon says in the video. Speaking with the New York Times, Ms. Simon added that she was diagnosed at the age of eight, had undergone several surgeries and had tumors growing in her brain and eyes. There is currently no cure for neurofibromatosis type I. It is not contagious.
These complications also include scoliosis, which she has been able to control with activities like yoga, sports and stretching, and several tumors growing inside her ears, affecting her hearing, Ms Simon said.
Tumors can be itchy and painful, and they often need regular visits to their doctors. “Dealing with the general public with her, for example, has caused me sort of anxiety, depression and PTSD a little bit, and that situation definitely didn’t help,” Ms Simon said, noting that she had “a lot of mild version” and she’s in the “early stages.” From the situation.
“I will not allow any of you to reflect on any years of treatment and recovery that I had to endure to deal with the condition, and of course to be around people like you,” she says on Tik Tok. Ms Simon said she chose to use “buzzwords” to make her ordeal more expressive of her plight. “I knew people would hesitate with her no matter what they were going through“ She said.
Her response video has been viewed over a million times on TikTok. The original TikTok video has since been removed, but not before that collected a huge number of views. (It is unclear whether the original video was removed by TikTok or by the original publisher.)
Social media platforms like TikTok are a thing of Hydra. Cut off one head and three more grow back. However, in this case, delete one video and multiple reposts will appear in its place.
Before it was removed, the comment was initially turned on, which means anyone with a TikTok account can influence the video. Ms Simon said the comments ranged from genuine concern to threats of physical violence against her. TikTok did not respond to a request for comment for this article.
Mickey Oestrecher, general counsel for the National Press Photographers Association, said it was legal to record videos like those of Ms. Simon. “When you’re in public, there’s no reasonable expectation of privacy. It’s how we distinguish, you know, what’s public and what’s private,” he said. “When you are in your home, this is the time when you expect the most privacy.”
He noted that privacy laws vary by state and emphasized that New York “may have less privacy than other states depending on what you’re photographing.”
However, what a person does with the recording after picking it up can change the situation. “The thing I tell people all the time is that it’s a completely different set of rights when you use a photo and do something that might be defamatory or put someone in the wrong light,” said Mr Osterreicher.
“I think, you know, the fact that this guy scored it, that’s fine,” he said. “But what they did to her after that, she might have a very good reason to take action against that person for doing what he did.”
Getting monkeypox, or even believing that you have monkeypox, can come with an emotional cost. “People fear being associated with them because of social stigma, ostracism, and assumptions about their sexuality or intimacy,” said Alexander Bursa, a doctoral student in medical social sciences at Columbia University and a researcher in the Harvard GenderSci Lab. Mr. Bursa was also part of the New York City Department of Health and Mental Hygiene’s working group dealing with monkeypox.
Mr Bursa highlighted how some TikTok videos, such as those of people talking in detail about what it means to have monkeypox, can be a positive use of the app. But he also noted that it wasn’t surprising to see the platform being weaponized in this way, with many LGBT people seeking guidance and therapy information online.
For now, at least, Ms Simon’s response video is the one that demands the attention of the fickle TikTok algorithm, and I’ve since heard from a number of strangers whose lives have also been affected by neurofibromatosis type 1.
“I don’t think I would honestly put myself in a place like this to find these people otherwise. It’s aloof, and there aren’t a lot of people to talk to, especially, you know, in front of me, at least, or at least in my community and in the places, the places I occupy Mrs. Simon said of her condition. “I don’t even talk to my friends about it. So again, for these out-of-nowhere strangers, I kind of felt… this part felt just fine.”
In order to send a direct message on TikTok, both parties have to follow each other. Ms Simon said the person who posted the original video has followed her account on TikTok since then, but she is not interested in reciprocating. “I was going to say exactly what I said in the video,” Ms Simon said of the two potentially connected.
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