#it's kind of surreal that I had this phase in 2018-2019 where I was just making music nonstop

[onebizarrekai]

I'm thinking of reuploading all the old ds music (among other things) into post form in addition to all their variations. there's a lot that didn't ever get put online, plus a lot of other music that never got put on here in the first place, so I'm just sort of feeling that right now

[dippedanddripped]

It’s rare that it reaches 100 degrees in the suburbs of Portland, Oregon.

Even rarer still is the presence of an all-gold Dodge Challenger, its reflection giving the appearance of a bejeweled shooting star pulling into the parking lot.

This one also has a vanity license plate – “Sammyy” – that enhances the car’s extraterrestrial appearance.

The Challenger’s occupant exits and joins me at a table. As she takes a seat across from me, a group of 20-somethings not too far away becomes intrigued.

More stares start to accrue from the outdoor mall goers. Next up is a young couple pushing a stroller, followed by the employees at the coffee shop I had just exited.

A minute ago, neither myself nor the table I was at seemed to warrant much, if any, attention.

You can get the sense that “somebody” just entered the premises, even if they’re not quite sure who that somebody is.

I can tell that the attention phases me more than my recently-arrived guest. Despite the now fishbowl-like dynamic between the two of us and the mall-goers, she seems to barely notice.

Then again, when you have more than 2.5 million followers on instagram and nearly half a million more on Tik Tok, being recognized by random passerby doesn’t come as a surprise like it would for most.

Rockstar? No, influencer

I distinctly remember the plethora of classmates I graduated high school with who promised to one day grow up and become “rockstars.”

Unsurprisingly, I haven’t heard from any of those classmates since. What is surprising is how anachronistic the notion of being a “rockstar” has become.

The reality is that “rockstar” should probably be replaced with a new term – ”influencer.” Sure, it’s not quite as catchy, but it’s far more accurate when describing the world’s latest (and perhaps most enviable) celebrity class.

These days, very real rock stars have nothing on the modern day Influencer.

Influencing by the numbers

What little data on the subject tells us is that, in 2016, social media influencing was just under a $2 billion industry ($1.7B, for those with a penchant for exactness).

This figure grew to $3B in 2017, and $4.6B in 2018.

In 2020, estimates tell us that the sector is likely to surpass the $10B mark.

While that may not seem like a lot of money, think of it this way – in a little under 4 years, the size of the influencing industry grew 500%.

Should the industry continue on its current growth trajectory, it will become a $50B industry by 2024.

To put this in perspective, Goldman Sachs estimates that the total value of all recorded music streaming will grow to about $30B by 2030. That means that it will take some years for music to reach just half of what influencing brings in annually.

By some metrics, influencers have become more relevant as celebrities than their musical counterparts. It’s happened quickly; adults who use social media religiously often can’t see it.

But real professional influencers are out there. As a crowd begins forming near our table, I begin to witness firsthand what these ridiculous financial statistics truly mean.

Who is Sammyy02k?

Since 2014, Samantha Krieger has gone by a number of different names. These days, she’s known as Sammyy02k.

Despite her reluctance to do in-person interviews, she’s agreed to be the subject of an Artvoice feature on the rise of social media influence.

And while Krieger can exercise her massive reach with just a few taps of a smartphone, a lot of misinformation about her continues to circulate.

As part of her agreement to the interview, I offer to help clarify the basics about just who exactly she is.

Samantha Krieger, AKA Sammyy02k

Samantha Krieger was born in Portland, Oregon. For some years, she was no different than you or me, working tedious retail jobs and driving a non-gold car.

At Lakeridge high school, she was dealt with taunts from wealthy classmates. It’s likely these experiences would activate whatever latent stardom was already within her.

After graduating from Portland State University in 2014, Krieger had a vision.

She suspected, correctly, that it doesn’t take much to at least get started as an influencer.

You need photos and/or video, sure… but given the prevalence of acceptable cameras on the backs of phones, finding a suitable recording setup was simple.

The second ingredient Krieger inferred was something less tangible – the courage required to be exceptional.

Despite her natural shyness, she had ambitions that extended beyond what she thought her bachelors degree would help achieve. Then, one day, it clicked.

“You could say I decided to become an ‘antisocial social media star.’”

“I did what I wanted to do, and I knew there was going to be a way to make it work for me.”

From 0 to 60 (thousand followers)

Like any new profile, at one point, @Sammyy02k had 0 followers.

Constant content and connection with followers helped drive things quickly, however.

A few hundred followers within a month turned into one thousand, and one thousand turned into tens of thousands in less than a year.

While impressive to most, Krieger knew there was more to be gained.

“Once I hit 50 or 60 thousand, things started to snowball. I hit the gas.”

@Sammyy02k posted more content, becoming more aware of her developing voice with every post.

At 500k followers, the contracts rolled in.

Brand building, Sammyy02k style

Krieger’s first contract of note was in Spring 2018, a lucrative deal with clothing brand Fashion Nova.

Now, instead of developing a brand on her own money and time, Krieger had companies competing against one another for the privilege of paying her to do what she loved.

The Fashion Nova contract was quickly followed by others, and within just a matter of months, Krieger’s lifestyle had changed dramatically.

She quit her last remaining part-time gig and moved into a luxury 2-bedroom apartment in Portland’s famed Pearl District.

With newfound status, however, came the need for significant soul searching.

Overcoming obstacles, digital and personal

Not too long after inking the Fashion Nova deal, Sammyy02k was offered to do a paid appearance at a party in downtown Portland. While there, she got a call from the police.

A gray Dodge Charger registered in her name had crashed into a median in China Town. The driver had fled, and the car was totaled.

Krieger immediately had a suspect in mind: a reckless boyfriend who had started taking advantage of her recently-acquired celebrity status.

Boyfriends weren’t the only concerns that Krieger had to deal with – even some of her own friends had started to become jealous, the relationships turning toxic.

To her friends, Krieger was still known as just “Sam”. People in her circle had difficulty comprehending the controlled entrepreneurism required to run @Sammyy02k.

They’d ask for shoutouts or suggest off-brand posts, not understanding that the Instagram profile required attention to detail and discipline.

Old friends becoming enemies seems like an overplayed Hollywood trope.

For a young adult who now could command thousands of dollars for just a few minutes of work, it was reality.

The type of loneliness that hides in shadows of success began to stretch further and further into Krieger’s personal life. The totalled car was the last straw.

While on the phone with the police at her first paid party appearance, Krieger took a deep breath and decided that staying on her desired path would require serious changes.

“I saw this as an opportunity where I could come back, and make a statement.”

It turned out that ditching the car (and the boyfriend) would be one of her best career decisions yet.

A car is born

A few weeks after the incident, Sammyy02k returned from a luxurious all-paid overseas trip to the Seychelles with a new travel sponsor. Krieger decided that she “needed a new whip.”

By now, Krieger had registered an LLC in her name. Business was coming fast and steady, and it wasn’t uncommon for her to be recognized on the street – not only in Portland, but in Los Angeles and even cities as far away as Kansas City.

Krieger elaborates:

“At this point, I was really stepping into my role as an influencer. This is when I really refined my style, my brand, and my image.”

For you and me, “refining your style” might mean picking up a few shirts from a department store.

To Krieger, it meant buying a brand new custom Dodge Challenger R/T wrapped in metallic gold with scissor-doors, the kind you’ll find on a Lamborghini.

According to Krieger, the car represents the essence of her brand, and the luxury of travel. It’s now one of the most recognized facets of her style.

Sammyy02k all over the world

Sammyy02k’s influence, today, is international.

With sponsorship deals taking her to the Seychelles, Dubai, Abu Dhabi, and beyond, she is now recognized in 4 continents.

She prides herself on showing her fans different places around the world. The path less traveled, the freedom to be everywhere, the luxury lifestyle that many in our always-connected society dream of.

“I feel connected to the road, and traveling to exotic locations”

The opportunities that sudden stardom has afforded her seem almost surreal, even to her. Normalcy is a mirage in the rear view mirror.

Responding to criticism

In mid-2019, Krieger was the main guest on a Portland Fashion Week panel. Already an influencer to influencers, she insisted that whatever secret ingredients success exist come naturally.

During a Q&A, she fielded numerous questions regarding her chosen career path. Not all of the questions were softballs.

Some questioned the materialism and sexuality often used by influencers.

The response was simple:

“Your opinions don’t pay my bills.”

Always on the go

With more followers pouring in every day, Sammyy02k stays busy. She recounts tales of distant travels, and the types of perks that I thought were originally reserved for a few select people who orbited high above in the LA movie industry.

Thirty minutes into the interview, I notice that a distant crowd has accumulated around our table like rings around Saturn.

Krieger barely seems to notice. A reminder goes off on her phone, a notification about another engagement she has back in the city.

After a polite exchange of thank yous and goodbyes, she heads back to her car.

I hear the exhaust note of the Challenger float away from the parking lot as I gather my notes and get up from the table.

As I glance up, the crowd has already dispersed. The only people left pay me no mind as they stare at their phones.

[searchingforthestage]

Goodreads Reading Challenge - 2019

it make I challenged myself to read 12 books for the entirety of 2019. The goal post was so low because I had just started University and I didn’t want to add on unnecessary stresses on top of my new course load, and one book a month should have been a walk in the park. 

Sincerely, I did not expect to be finishing the final book on literally the last few days of the year, but what are you gonna do? Below are the books I read and a short blurb about what I thought of them!

Black Comedy - Peter Shaffer

I started off the year cheating a bit, but who’s really counting? I was stage managing this production and since I wasn’t in it but still had to read the script, then no harm no foul. This is a hilariously put together play that shines in its slapstick comedy, but allows for plenty of wordplay that just flies by, one pun after another. Absolutely worth stage managing again, 10/10.

Turtles All The Way Down - John Green 

A very interesting exploration of mental health and how it can spiral out of control combined with a subplot of solving a murder mystery, and how getting to the resolution of things never feels as quick, easy, or simple as you imagine. I got this as a 2018 Christmas gift because it became well-known that, at least teenager me, had/has a strong John Green phase. I have read every one of his books and I can say that this has a completely different feel then his previous works, and I feel like my tastes have changed as I grew older.

The Portuguese Kid - John Patrick Shanley

Since Doubt is my favorite play, I was very excited when this play shipped through DPS’ quarterly book-club, and I read it immediately! This explored relationships formed through age gaps and how hard it can be to get a real connection nowadays, and I believe that just reading it is not the way that this should be consumed. 

Not Someone Like Me - Susan Rice

This play was. .  . a lot to read. This is a collection of monologues, based on events that actually happened, of women telling their stories experiencing rape and assault. It brought me to tears, it made me shake - it felt so real. 

The Play That Goes Wrong - Henry Lewis

Take almost everything I said about Black Comedy and multiply it. A fantastic comedy where every aspect shows a different level of humor, and there’s something for everyone in the audience to laugh about. My personal favorite joke is the actor playing the corpse not doing a good job, because he’s literally corpsing.

Scissoring - Christina Quintana

I enjoyed how it tells a story that is very relatable and down to Earth, but adds enough surreal elements to give it a feeling of a story known throughout time. It also made me go down a rabbit hole regarding the gay history surrounding Eleanor Roosevelt. Very fun!

Speak - Laurie Halse Anderson 

I picked this book up at a thrift store exclusively because my friend was shocked that I didn’t read this in high school, and because it was released stating it’s paired with The Outsiders, I knew that I would like it. This is a classic, and I don’t have anything else to say about it. Speak is one of my favorite books that I have read this year.

Everything’s Fine With Virginia Woolf - Kate Scelsa

A feminist parody of Who’s Afraid of Virginia Woolf, this felt like an interesting take on a classic. It pairs well with the original, and the snarky humor reminds me a lot of writing styles of my friends. The excerpts about fanfiction are the funniest, especially after I’m already reminded of my friends. 

Aura - Carlos Fuentes

I read a lot of fantastical realism this year (even more after this) even though its not really one of my favorite genres. I don’t dislike this genre, but it is hard for me to forgo its usual tropes. I didn’t particularly enjoy this novel and I think it was because of my personal bias - the reincarnation aspect just read to me as a story of how women getting older and “uglier” is the most horrifying thing the main character can think of. 

 Sing, Unburied, Sing - Jesmyn Ward

Another fantastical realism one! But more in the southern gothic part. Telling the story of 3 generations of a family and the ghosts that are haunting them (metaphorical and literal), this was a wild read. I love books that make me feel sympathy towards characters doing all the wrong things, and this worked for me. 

It’s Kind of A Funny Story - Ned Vizzini

Fun fact: this was written by the same guy that wrote Be More Chill! I got this novel several years ago when it was all that my bookish friends could talk about, and i started it at least 4 times and haven’t been able to finish the first chapter. I picked it up one more time and was able to read the first 200 pages in a flurry - it was a book that I could not read when not in the right headspace for it, but now that I am it is the perfect book for 2019.

Simon vs. The Homo Sapiens Agenda - Becky Albertalli 

Adorable! I’ve been looking forward to reading this as soon as I saw the movie and it did not disappoint! Truly the best book to end the year on as it was what I needed to give me a positive outlook for 2020.

[jordancat]

Malec (aka Matthew Daddario and Harry Shum Jr.) Say Goodbye to 'Shadowhunters'...for Now

On that epic finale, fandom, and weddings...onscreen and off.

by EMILY TANNENBAUM MAY 7, 2019

https://www.cosmopolitan.com/entertainment/tv/amp27375054/shadowhunters-malec-wedding-finale-matthew-daddario-harry-shum-jr/

Please give the link a hit to show your interest in the show ans these two actors.  

But I always like to put the actual text of an interview or article in my posts in case the link moves or the article in taken down, so here it is.

********************************************************************************

As I corral Harry Shum Jr. and Matthew Daddario around the Cosmo offices, Matt bounces on his heels, pointing to random objects—like a fancy golden coffee table and fuzzy pillows—asking me if he can bring them home with him (the answer is always "no"). Harry is much more calm, back straight and confident, happy to just laugh at his co-star.

It's jarring how their roles are almost the reverse of their characters: For the last three years on Freeform's hit series Shadowhunters (based on The Mortal Instruments, by Cassandra Clare). Matt played Alec Lightwood, the stoic half-angel leader with a heart of gold, while Harry embodied the eccentric Warlock Magnus Bane, always moving, portaling somewhere or changing his look...not to mention throwing shit around his beautiful New York apartment.

As they say, opposites attract, and Matt and Harry captured the hearts of the entire Shadowhunters fandom as a certified power couple. Malec has certainly had their share of rom-com moments (they share their first kiss when the warlock crashed Alec's first wedding) and dramatic breakups (don't remind me about 2X18). But last night, Shadowhunters gave Malec the happy ending they deserve, complete with gorgeous wedding and happily ever after as the Inquisitor of the Clave and High Warlock of Alicante.

A wedding finale is hardly unheard of in the TV world, bordering on cliché, but for Shadowhunters there was truly no other option. The union of a strong gay man and proud bisexual has been the cornerstone of this fandom throughout its run, inspiring countless LGBTQ+ fans and landing a GLAAD Award for Outstanding Drama (not to mention sweeping the 2018 People's Choice Awards the same year as its premature cancellation). How else do you celebrate their legacy, if not by throwing a giant party and giving our boys one more showstopping kiss?

Of course, as surreal as it is to discuss the end of Shadowhunterswith the ship to end all ships, it's even tougher for them to say goodbye. Here, Matt and Harry talk about the Malec wedding, balancing fandom with real life, and why Alec had to stay mortal.

THE MALEC WEDDING

Tell me about the wedding. You’ve built this relationship for three years now, and you’ve seen how massively people have reacted—what did it feel like to give them that milestone?

Harry Shum Jr.: It had to happen. It was a great moment to bring everyone in and say, "Look at this joyous moment."

It was nice to have everybody back on-set. It really felt both, for the show itself and for us as a whole, that this was a great ending. Because it was the last thing we filmed. I'm happy that we got these two episodes so that we could do it because it would have been really unfortunate if the fans hadn't gotten that wedding. And then fans can play in their heads now, Magnus and Alec are married and doing whatever.

Matthew Daddario: You know, it's like the end of a chapter.

Harry: We're safe now.

So correct me if I'm wrong, but Alec is just a Shadowhunter still? He's not immortal.

Matt: Just a Shadowhunter? [Laughs] Yes, I am.

Some fans were really rooting for Immortal Husbands...like, intensely. How do you feel about this?

Matt: This is the thing I always have trouble understanding is that people want the immortality. And this is a topic that's been written about and discussed for thousands of years, and everyone comes to the same conclusion: the curse of immortality. It is not always the best thing in the world to live forever. In fact, that's close to this kind of a godliness that is considered almost like a living hell.

For Magnus, he's living and living in this endless loop without the repercussion of the totality of life. And if Magnus was instead mortal, would we not celebrate their wonderful life? But it's because he's immortal, we worry about what happens after the fact.

Harry: But here’s the difference: It’s not the immortality that you get shot and you can’t die.

Matt: Right. You can get killed. They're immortal, and then they get the shot off the top of the castle walls, and you're like, "Whoa, that's screwed up." But at the same time, every mortal has to deal with that. [Turns to Harry] So it's not your mortality that you're upset about when you first lost your powers. You're not upset about the mortality, you're upset about the loss of your identity.

Some fans just want Malec on an even playing field. But I find it really sad that Alec would have to live and lose like Jace and Izzy—

Matt: Right. Magnus lost people constantly, and he was kind of a shell of a person at one time. Up until meeting Alec, he's filling his life with debauchery, anything to heighten the senses. And, you know, trying to find places where he can take care of people. And he does get involved with helping vampires because they're immortal as well. There is a kind of emptiness to him in the first season.

Harry: No, for sure. And I think then there is the big switch.

Did you get emotional reading the final episode?

Harry: Everyone did at the table read. One of our producers reading off the narration, he couldn't even get through and actually walked out and someone had to take over. And then there was this silence in the end when the last words were spoken. I think that silence spoke volumes.

ON FANDOM

Has the end of Shadowhunters hit home for you yet?

Matt: I think it will hit me when I don't think about it for a week. If one week passes without me thinking about Shadowhunters, I will say, "Shit."

We think about it every day. This is a huge part of our lives. This is three years of this. And this show, it's a hit. People are talking about it, people from around the world. It's hard to deny that.

Will you still engage with Shadowhunters stans, or are you emotionally ready to move on to another world?

Matt: Look, we're done filming Shadowhunters, but the fans of the show are always welcome to ask questions and all that kind of stuff. But eventually, we're going to run out of new answers.

I'm always happy to talk to a Shadowhunters fan because they are enthusiastic, they care about what they're talking about, and many of them have built friendships off of it, so it matters to them, and therefore it matters to me.

Harry: Because you gave a part of your life.

Matt: Your job is to have an effect on people, and therefore you have a certain responsibility to engage with the people who are affected by this. You can choose not to, you could choose to go completely incognito or to ignore it, but to dismiss it is, frankly, insulting and kind of silly and maybe slightly narcissistic.

But I think that you do need to have an understanding that you're not any different or special because of this involvement with culture. And why would you want to be miserable about it? Why wouldn't you embrace it?

Matt, you kept your own wedding a secret until your one-year anniversary. Was it harder to keep the details of the finale secret or your wedding?

Matt: [Laughs] It was definitely easier to keep the wedding secret. I just told everyone no one's allowed to take photos. And people did a pretty good job with that.

Harry: Yeah, sometimes I think it's a nice...regardless of what your profession is, but particularly ours, to have something just for yourself.

Matt: Not to say that people don't deserve to know, but I think that anybody would feel like, hey, I would like this moment just to be mine for a little bit.

People can be a little bit demanding. One time this girl is walking down the street, I'm walking down the street, she's on the phone, it's the middle of the day, she's FaceTiming somebody.

She sees me, she stops me by the touching me on the shoulder and says, "Oh, whoa, wait, look! Look who's here!" and hold the phone up like this and goes, "Crazy!" and then keeps walking. And I'm like, fuck you. Like, what the fuck?! [Laughing] You don't do that to someone.

It just felt so invasive. It just feels a little bit like, you're not a human. You're the thing I see on TV. But I guess it's just excitement, whatever.

IS IT REALLY GOODBYE?

You obviously know about the #SaveShadowhunters campaign. What would you say if suddenly, some other network wanted to pick up the show?

Harry: I think it's a conversation. You know, we love playing these characters. But as time passes, things change. Like introducing a baby into your life, or whatever the next phase is.

But it's also a wonderful group of people. So, of course, instead of saying, "Absolutely not," it's definitely open for conversation for me.

Matt: Honestly, the ending is successful. And, you know, there's a danger now. What if you screw it up? [Laughs]

[itsfinancethings]

October 09, 2019 at 08:00AM

Carter Roberts’ motorized wheelchair didn’t arrive until the day he died.

It had been a long time coming and his parents had fought hard to get it. The chair cost more than $32,000 and the insurance companies wouldn’t cover it, so the family went to court. One insurer eventually agreed to pay for some components of the chair but not the whole thing. And then none of it mattered anyway. On Sept. 22, 2018, the Roberts’ doorbell rang and the chair was delivered. Also on Sept. 22, 2018, Carter died, just three months shy of his sixth birthday. He had been largely paralyzed for the final two years of his life. The family is only now beginning to pick their way through the horror of what happened.

“Our eight-year-old daughter believes she can speak to him,” says Carter’s mother Robin. “She was playing video games the other day and she’s looking up and going, ‘Carter are you seeing this? I need your help.’”

By any measure, the Roberts family of Richmond, Va. was spectacularly unlucky. They lost their son to a disease that science first recognized only in 2012. It’s new enough that it didn’t even have a formally accepted name until 2014. When it got one, it was one of those names that is more or less just a clinical description of what the disease is: acute flaccid myelitis (AFM), a sudden inflammation of spinal tissue resulting in flaccid paralysis of the muscles of the limbs, neck, face and often diaphragm. It’s a lot like polio but it’s not polio; it’s a little like meningitis and Guillain-Barré syndrome but it’s not them either.

Ilana Panich-Linsman for TIMEBraden’s nurse and mother set him up for treatment.

Indeed, no one knows exactly what it is. For the moment it remains rare: In the U.S., where AFM is closely tracked, the disease attacks fewer than one in a million people even in peak years, and it very rarely kills. But in the past seven years, it’s been striking more and killing more, and there is a tick-tock certainty to when it will hit next. As with polio, AFM is seasonal—though unlike polio, it arrives in late summer and early to mid fall, rather than in the spring and summer. Also unlike polio, it runs in an every-other-year cycle, peaking in even-numbered years.

While spotty outbreaks of AFM have been retrospectively diagnosed in the U.S. from 2005 to 2012, it was in 2014 that the disease established its current pattern. That year, there were 120 confirmed cases scattered around the country; in 2015, the total fell to 22 cases; it climbed again in 2016 to 149 cases; fell again in 2017 to 35 cases and jumped back up last year to 201 cases. So far in 2019, there have been 20 cases of AFM in nine states.

Now, as an even-numbered year inevitably approaches, there is a growing feeling of looming menace. When 2020 arrives—and then 2022 and 2024 and on into the future—more and more children are destined to be claimed, unless science gets a handle on the disease fast.

“This is our generation’s polio,” Carter’s mother, Robin Roberts says flatly.

That’s not just the opinion of a grieving mother; doctors admit to feeling daunted too. “I can’t think of a single disease that had this pattern that we’re seeing, with modern laboratory diagnostics not figuring it out,” says Dr. Nancy Messonnier, director of the CDC’s National Center for Immunization and Respiratory Diseases.

As with polio too, the medical community has mobilized. Back in the 1930s through 1950s, the work was led by the National Foundation for Infantile Paralysis, the non-governmental consortium of scientists that included Jonas Salk and Albert Sabin, who developed the two different versions of the polio vaccine. This time it’s the U.S. Centers for Disease Control and Prevention (CDC), which last fall formed a task force consisting principally of 17 epidemiologists, neurologists, pediatricians and other experts from teaching hospitals and health departments across 10 states, as well as from the National Institutes of Health and the Bill and Melinda Gates Foundation.

Ilana Panich-Linsman for TIMERachel Scott helps her son Braden walk down the stairs in their home.

The task force had its first meeting in December 2018 at the CDC’s headquarters in Atlanta, and the gathering had the feeling of a war council. Every seat at a massive conference table in a windowless room was full, with doctors and other staffers lining the walls and epidemiological maps and graphics on display screens.

“This is obviously complicated or we wouldn’t be in this place,” said Messonnier in her opening remarks.

Lending urgency to the task force’s work is that AFM seems not only to be getting stronger, but crueler too. As recently as 2014, the median age of AFM victims was seven years old; then it fell to five and now it’s just four and a half—kindergarteners. Like polio, it strikes at just the point when children are fairly defined by their happy, kinetic energy—and then it takes it away from them.

“It was kind of surreal to be like, ‘Wait, how rare is this? One in a million? You’ve got to be kidding me,’” says Jeremy Wilcox of Herndon, Va., whose four-year-old son Joey contracted AFM in September 2018 and lost the ability to walk, but has largely—though not entirely—recovered.

Roberts and Wilcox were in Atlanta in December to address the task force. Their ostensible purpose that day was to describe the nature of the disease to the doctors, who at this point understand it far less well than the lay families living its terrors. But the more pressing and powerful reason was to humanize the problem—to establish the mortal urgency of solving it.

“AFM has changed my life,” says Rachel Scott, mother of a third child, Braden, who is battling the disease, and who also attended the meeting. “It’s changed my children’s lives; they’re growing up in a completely different world than they would have. This is not something I ever would have dreamed of.”

Braden Scott, whose family lives in Woodlands, Texas, first came down with what seemed like a routine summer cold on July 4, 2016. But the next day, when he tried to eat so much as a single potato chip, he couldn’t keep it down—not because his stomach was upset, but because the muscles that control swallowing had begun to fail. “He got weaker over the next few days and we came to realize his swallowing was paralyzed,” says Rachel.

Ilana Panich-Linsman for TIMEMuscle-stimulating pads are placed on Braden’s back for treatment.

Eventually, the paralysis spread throughout Braden’s entire body below the neck, including his diaphragm, which meant he had to be intubated in order to breathe. He spent seven months in the hospital as the most acute phase of the disease receded and he received in-patient rehab, but even now that he’s home, his walking remains unsteady, paralysis continues in his left arm and his swallowing is still so poor he must be fed a liquid nutrient four times a day through a port in his stomach. Merely controlling his swallowing enough to clear saliva is a challenge, and though he’s back in school, a nurse who accompanies him must periodically suction his mouth so that he doesn’t choke.

“Every day when he comes home from school, we say, ‘OK, how many mouth suctions today?’” says Rachel. “Sometimes it’s only three and we’re like, ‘That’s amazing!’ The things I celebrate are absurd.”

Like so many AFM patients, Braden was at first misdiagnosed. When his parents rushed him to the hospital with fever and spreading paralysis, the doctors said his problem was mononucleosis and strep; they prescribed him antibiotics and steroids and sent him home. Joey Wilcox was first suspected of having Bell’s Palsy—his face was partly paralyzed, so what else could it be? The doctors eventually sent him home with no medicine and a vague diagnosis of a virus, one they said was likely to pass on its own. Carter Roberts’ family was told that he was merely tired and needed rest.

In many cases, the correct diagnosis doesn’t come until full paralysis has set in and doctors finally conduct an MRI of the spinal cord looking for a lesion or some other localized explanation. By that point, the extent of the disease can be startling. “Carter’s cord was so inflamed they couldn’t even distinguish between gray matter and white matter,” says Roberts.

If the damage AFM does shows up clearly on a scan, the cause of the disease doesn’t leave clear fingerprints, though experts have good reason to believe it’s a viral illness. Its seasonality is consistent with viral behavior—the way colds and flus strike in the fall and winter and polio in the spring. The biannual peaks are not unusual for a virus either. “Measles before vaccination was every two years as well,” says Dr. Thomas Clark, the CDC’s AFM Incident Manager.

Ilana Panich-Linsman for TIMESome reminders of Braden’s treatment hang on the wall in the Scott family home.

But measles—and polio, chicken pox, rubella, and other childhood viral diseases—are very different infectious beasts because they are all caused by a discrete virus, which can be detected in the blood and neutralized by vaccination. AFM is murkier. It’s thought to be associated with at least two different enteroviruses—viruses that incubate in the gut. There are hundreds of enteroviruses (including polio and influenza), and so far the ones designated EV-D68 and EV-A71 have been most widely implicated in AFM paralysis. But “widely” is not even close to “universally.”

During peak years, no more than 30% of AFM patients show some traces of EV-D68; another third show EV-A71 or other stray viruses; another third show nothing at all.

Even if the two enteroviruses turn out to be to blame, no one knows exactly how they do their damage. While the poliovirus directly attacks the ventral horn cells in the spinal column, it’s entirely unclear what EV-D68 and EV-A71 do to the central nervous system. The best analogy might be to Guillain-Barré, an inflammation of the peripheral nervous system that usually results from a misfiring of the immune system after an infection with a stomach or respiratory virus.

The mention of Guillain-Barré predictably gets the anti-vaccine crowd chattering, since a slight increase in the risk of the disease has been observed among people who receive the flu vaccine—on the order of one or two additional cases for every million vaccinations. (The CDC stresses that the risks associated with severe influenza—including death—are far worse than the far smaller risk of Guillain-Barré.) There is no evidence at all of any link between AFM and any vaccine, but the CDC all the same is investigating any possible connection, simply because good epidemiological sleuthing requires no possibility be overlooked.

“We’ve always thoroughly looked at vaccine safety in all of our programs,” says Patel. “Currently, we don’t have any evidence to suggest that there is an association.” Clark adds that the children who have developed AFM have generally been vaccinated in the same way and on the same schedule as the tens of millions of children who don’t get sick.

Ilana Panich-Linsman for TIMEOne of Braden’s nurses, Carly Westcott, RN, helps prepare him for therapy.

The more epidemiological avenues that reach a dead end, the more researchers are concluding that they are coming up against a disease more complex than they reckoned. “AFM can��t have a simple answer because if it was, all these smart people would have figured it out,” says the CDC’s Messonnier.

What alarms the CDC is the possibility that the medical community could face wave of cases before that figuring out can happen, and polio offers a precedent. The earliest documented polio outbreaks were mild: four cases in the U.K. in 1835; ten in Louisiana in 1835. In 1894, a major outbreak struck Vermont, when 132 children fell sick—and after that, the disease exploded. There was an epidemic of 27,000 cases in the U.S. in 1916, including 9,300 in New York City alone. In the years after, there were thousands—sometimes tens of thousands—of cases every summer in the U.S., with the peak coming in 1952, when 57,879 polio infections were recorded. The epidemiological fever didn’t break until 1955 when the first polio vaccine was approved.

If there are similarities in the AFM and polio infectious profile, there are big differences in the prognoses. Polio paralysis always seemed intractable—sudden and effectively permanent—while AFM patients can regain much of their function. That may say less about the infectious agent and more about the therapeutic options that are available in the 21st century and weren’t in the 19th and 20th.

Patients have access to a far better array of prostheses and far more thorough physical therapy programs than they would have 100 or even 50 years ago, with kids today sometimes working up to five and six hours a day to regain mobility. Braden Scott receives regular muscle therapy, which he refers to as “zapping,” and it’s a fair enough term for what the seven year old goes through several times a week. In each session, medical technicians paste 48 electrodes to his arms and legs, which send synchronized signals to various muscle groups mimicking the electrical commands the brain would normally send the muscles to get them moving. Regardless of the source of the signal, the impact on the muscles is the same: the motion serves as exercise, preventing the atrophy that can occur when a limb is unused. The nervous system benefits too, with the signal channel between the spine and the limb remaining open.

Ilana Panich-Linsman for TIMEBraden uses his toes to reach for a LEGO on a break inbetween physical therapy treatments.

Braden also underwent a relatively new surgical protocol known as nerve transfer, in which a healthy donor nerve from elsewhere in his body was left connected to the spinal cord but was rethreaded to his left arm, where AFM destroyed an existing nerve. Three years out from his symptoms, he continues to improve—but slowly. The tracheostomy tube that helped him breathe will soon come out, but his improvement in eating and swallowing normally—which takes the complex interplay of multiple muscles in the head and neck, as well as coordination with the throat to protect the trachea—has been much slower.

Inevitably in the U.S., any disease—especially a newly identified one with treatment protocols that are by definition unproven—will run into the wall of the health insurance system, with parents dividing their time and energy between tending their sick child and fighting simply to get coverage.

“It’s hell,” says Roberts, who battled for the wheelchair that came too late for her son. “You’re just dropped blindly in the middle of a labyrinth that is health care. You’re grasping at walls and corners trying to feel your way out, and no one is willing to hold your hand or give you a GPS.”

Toward the end of Carter’s life, his doctors recommended a drug to ease his breathing, but the insurance company refused to pay for that, too. “I pushed back as far as I possibly could until a final denial after eight months,” says Roberts. She wonders to this day whether the drug would have made a difference.

Ilana Panich-Linsman for TIMECaroline Casanova, LVN, one of Braden’s nurses, checks his blood sugar as he watches TV with his brother.

Joey Wilcox has mostly recovered, a year out from his initial symptoms. He still has some paralysis on the left side of his face and a bit of a limp in his right leg, but when he first got sick, he was so weak he referred to himself as a “floppy human.”

“I’m thinking it may have come from a video game,” says his father, Jeremy. “He said, ‘Am I always going to be a floppy human?’ My wife said no. I didn’t answer and I don’t know if I would have given the right answer because saying to your child, ‘I don’t know’ is not comforting or reassuring.” If medical history is a guide, comfort does come, reassurance does come—cures and vaccines do come. But they come only with time and only with work—as the calendar moves inexorably to the next even-numbered year.