A really nice water color of an alligator

Go Viral Or Die Trying

I have to get my face out and get my story out when I can

This piece appears in my book Welcome to Hell World: Dispatches from the American Dystopia available now. It originally appeared in Esquire two years ago and nothing much has gotten better and in fact it seems things have gotten somehow worse pretty cool shit.

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In late February 2017 Senator Tom Cotton stood before his constituents at a town hall meeting at Springdale High School in northwest Arkansas and attempted to explain why the free market won’t necessarily kill them. The capacity crowd bristled with energy and frustration in the type of scene that became common throughout the country at the time when angry voters demanded answers from their representatives about what a long-promised plan to repeal and replace the Affordable Care Act would actually look like. Many Republicans like Utah’s Jason Chaffetz the House Oversight Committee chairman dismissed the crowds as disingenuous paid protesters. In truth they represented what has become an all-too-typical strain of worry which is people frightened about what will happen to them if they get sick or as in the case of Kati McFarland a constituent of Cotton’s at the meeting what will happen if coverage for a preexisting life-threatening condition is eroded.

McFarland who was a twenty five year old photographer and student at the University of Arkansas waited for her turn at the microphone to confront Cotton. Suffering from a genetic disorder called Ehlers-Danlos Syndrome she has trouble walking or standing without severe pain and sometimes blacks out but she summoned her strength to ask the senator point blank: Did he intend to leave her behind? She was nervous because of the size of the crowd she told me a few weeks later but also because Cotton “is a Republican, Tea Party senator and I am like this liberal Episcopalian borderline socialist person.”

“Without the coverage for preexisting conditions, I will die,” she told him. “That is not hyperbole. Without the protections against lifetime coverage caps, I will die. So my question is, will you commit today to replacement protections for those Arkansans, like me, who will die or lose their quality of life, or otherwise be unable to be participating citizens trying to get their part of the American dream? Will you commit to replacements in the same way you’ve committed to repeal?”

Cotton thanked McFarland for her question then moved on as the crowd erupted in boos. “Do your job!” they chanted. Momentarily abashed he made a half-hearted stab at addressing the question assuring her that he wanted to make sure all Americans have access— access—to affordable care.

McFarland’s stance garnered immediate and widespread attention with coverage across cable news. On MSNBC the next day she explained her thinking. “If they’re going to do this, if it’s going to possibly kill me in the next couple years without health care, I have to get my story out and my face out when I can. Maybe if I put a human face and voice on it, give them something they can really recognize, like their daughter, or their niece, then maybe it would change their heart. Or at least change other Americans’ hearts.”

Like many Americans who suffer from rare and expensive diseases or those who simply cannot afford the associated and unexpected costs that accrue from the most mundane ones MacFarland had set up a fundraising page on YouCaring. It’s one of many crowdfunding services focused entirely on helping Americans defray the costs of their health care by appealing to the kindness of strangers. In a post from November 2017 she said she was excited to receive $265. It was a small amount but enough to cover a motel for her next trip to Dallas to see a specialist unavailable in her state. A few days before the town hall she posted a more alarming message.

“Hi y’all — unfortunately a dire update. Here’s the situation: if this fundraiser doesn’t do better I could soon be homeless, lose electricity/ internet/heating to my house, or lose my health insurance . . . My benefits won’t cover all bills and premiums, and I’ve had to spend so much savings on medical bills that I have none left from my dad’s estate . . .”

The TV hits were a boon for McFarland. Shortly after the town hall her fundraiser had grown from $1,500 to $24,000. She watched in shock as it continued to grow refreshing the page continually.

Around the same time as Cotton’s town hall three men were shot in a Kansas bar in an apparent hate crime leading to the death of Indian American engineer Srinivas Kuchibhotla, and the injuries of his friend Alok Madasani and bystander Ian Grillot. Four separate fundraisers were launched in the immediate aftermath of the attack which eventually combined to bring in more than a million dollars to cover medical expenses and recovery costs and memorial services for the victims. That was thanks in no small part to the sensational horrific story becoming international news.

After trying their hardest Republicans weren’t quite able to dismantle the AFA which is some small solace but not exactly a cause for celebration if only because a broken system wasn’t made worse. Regardless of what transpires with health care down the line, at a time when more than half of the country has less than $1,000 in savings in case of an emergency it seems guaranteed that more and more people will turn to the aid of their Facebook network for health care.

For a steadily increasing number of Americans including millions who now regularly use sites like YouCaring and GoFundMe health care has in fact become about competition. No not the kind Republicans usually talk about but a competition for individuals in the marketplace of virality.

“I won’t lie, a lot of [the money I raised] is because I shoehorned the link to my fundraiser into my appearances on TV,” McFarland told me. “I feel bad about that, but when you’re in dire straits like I am, with no savings left, no family, I was going to lose my home, you do what you have to do.”

The advice for best practices most of these sites share are to tell a good story and spin a narrative and appeal to people’s interests which becomes almost absurdly macabre when the subject is human lives. McFarland is a unique case in that she proved an especially effective advocate for herself: She’s young and photogenic and internet-savvy and has a heartbreaking story having lost both her parents at a young age. Many others are much less fortunate.

On top of managing your health and your expenses now you have to make sure you present your malady with authenticity. Think of your cancer as the origin story a tech startup tells about itself on the About section of its website. And then start hoping a celebrity takes an interest in your plight online. It might be a shorter wait for that than a doctor anyway.

While smaller forms of crowdfunding as we now know it stretch back at least to the turn of the millennium—initiated most notably by artists and musicians hoping to raise cash for creative projects—it wasn’t until rewards-based crowdfunding sites like Indiegogo in 2008 and Kickstarter in 2009 began in earnest that the concept became a regular part of life online.

Around that time the idea of raising funds for those experiencing life-changing events—often medical—began to take root. GiveForward which specializes in medical causes was among the first major crowdfunding sites in 2008 and has since raised hundreds of millions. GoFundMe followed in 2010 then YouCaring in 2011. Indiegogo has since launched a medical and personal-issues spinoff called Generosity.

From its inception GiveForward realized there was a space for this type of charitable giving CEO Josh Chapman said. Today around 70 percent of the company’s fundraisers fall under the medical category. Its first successful fundraiser in 2009 focused on two sisters one of which required a kidney transplant. Since one of them had had another organ transplant earlier in life her life-insurance policy had been maxed out. The younger sister was a match but there was no way they could pay for the procedure out of pocket. They turned to GiveForward and raised $30,000 to make it possible.

The platform has managed a number of high-profile efforts in the years since including one for Jessica Kensky and Patrick Downes who were victims of the Boston Marathon bombings who lost limbs. A fundraiser for the couple who were portrayed in the Patriots Day film pulled in almost $900,000. Another successful fundraiser collected money for Billy Ray Harris a homeless Kansas City man who returned a diamond engagement ring to a woman who’d accidentally lost it when putting money in his cup. Onlookers who saw the story in the media came together to donate almost $200,000 to Harris.

YouCaring has also seen steady growth in the medical category according to Jesse Boland the company’s director of online marketing. YouCaring now raises around $200 million a year; 40 percent of that is for medical-based needs he said.

“Medical fundraisers typically do better than a fundraiser for a pet or a mission trip because the need is very clear, and it’s a dire situation, Boland said. “They’re typically more viral and the ask is very clear, so people typically give more.” Among the most common fundraisers on YouCaring are for people suffering from cancer including pediatric cancer and leukemia and and lymphoma as well as ALS and Parkinson’s disease and birth defects and traumatic injuries such as car accidents.

The industry leader by far is GoFundMe. Over the past five years the platform has raised more than five billion for various causes according to CEO Rob Solomon. It’s an amount that’s increased exponentially year by year with medical remaining in the top three categories.

“Medical is a very interesting category, it’s really what helped define and put GoFundMe on the map,” Solomon said. “A lot of people perceive it as a place for just medical bills, but in reality there’s a lot of nuance. Traveling to get treatment when family come to town is a big part. We see a lot of fundraising for foundations and charities. People are living a lot longer, so we’re seeing elderly people try to raise money for their care.”

But while everyone I spoke to in the crowdfunding industry is proud to be able to provide aid to users it’s also not an easy job. “It will break your heart to see some of the things people are going through,” Boland said.

It’s that heartbreak that’s one of the major factors in the seeming ubiquity of medical-based crowdfunding in our social media feeds. The large number of fundraisers as observers of the industry say has become a self-fulfilling growth engine. The more people see others doing it the easier it is to realize they can ask for help themselves.

“There is a little bit of an avalanche effect: One person does it, it works, another does, it works better, and a platform develops around it,” Anupam B. Jena, a professor at Harvard Medical School and a practicing physician at Massachusetts General Hospital in Boston told me. “The first time it was probably a strange thing, now it wouldn’t be uncommon to hear about a young family with a child with cancer who is trying to crowdsource funds for treatment.” The money for the people in need is important Jena said but it’s the interaction with the community that can often be the real emotional or spiritual uplifting salve.

Dennis Disbot remembers his last beer. It was in August of 2016 a year and a half after he’d been diagnosed with testicular cancer. Then he found out it had recurred in his liver. He called a friend and they went to the Barrelhead a local brewery in San Francisco where he lives with his wife and young son and decided he needed one last hurrah. “It was a very symbolic gesture,” he said. “OK, now it’s time to get down to business.”

When we spoke a couple years ago Disbot had just wrapped up seventeen days of treatment at UCSF medical center where he was undergoing another round of chemotherapy and cell transplants. His aggressive cancer had recurred twice within a two-year period after Disbot had been first been diagnosed in February of 2015 which was the same week his son was born.

While Disbot and his wife both had health insurance at the time of his diagnosis they began accruing large expenses almost immediately draining their savings accounts. Child care and rent and lost wages began to add up quickly. They tried raising funds on a smaller level by soliciting friends on Facebook and hosting events and so on but in November they realized they needed a boost and started a YouCaring page. He’s since raised $46,000 of his $75,000 goal.

The biggest hurdle Disbot told me was is the inherent reluctance many people have to reach out. “It’s challenging to stand up and keep your head high and say, ‘Hey, we need help. I am maxed out.’ It’s amazing, because people in our community, nine out of ten times they’ll say, ‘Let me know how I can help.’ Being as specific as possible allows one to align their needs and feel heard and seen.” Seeing people from so many networks and times of his life from kindergarten to college coming together has been exceptionally moving, he said.

“The secret prize for people who raise money on the site is they find out how much people care about them,’ YouCaring’s Boland said. “The money is the primary ask but they end up being better off for having connected to their community, so they get a sense of peace and belonging.”

For Glenn O’Neill who lives in Columbia, South Carolina that community has proven larger than he ever could have imagined. His daughter Eliza was diagnosed at three years old with Sanfilippo Syndrome which is a rare terminal and rapidly degenerative disease sometimes referred to as Childhood Alzheimer’s. The family crowd-funded almost $2.1 million to establish a non-profit 501c3 called Cure Sanfilippo Foundation which has been busy funding clinical studies. The work has already given the O’Neill family hope that their daughter and others like her may find some relief. But they couldn’t get there without solid production value.

Both O’Neill and his wife Cara who is a pediatrician for special-needs children had quality health care but even the best of plans don’t prepare you for rare diseases with no known cure or treatment. “Since it’s a rare disorder, people don’t just give millions to these types of things,” he said.

“Government grants are difficult to get, the lead time is years. We knew we had to act fast.”

After six months they had raised $200,000 on their own which was still a relative drop in the bucket so they turned to GoFundMe. They posted a video of Eliza at the end of 2013 which brought in another $40,000 but “it wasn’t going viral,” O’Neill said.

He began researching how to make things stand out online. Eventually he came across a photographer named Benjamin Von Wong who said he wanted to help. He came to the O’Neills’ home with a crew and spent a week shooting forty hours of footage then emerged a few days later with a professional video that sits atop the fundraising page today. Within fifteen days the family had raised $500,000. By the end of 2014 they had $2 million which they spent funding pre-clinical work for clinical trials.

“GoFundMe was everything to us,” he said. “That link [to our fundraiser] was in every media story about our effort. Every parent deserves the same chance we got and that other kids will get.”

O’Neill doesn’t understand why 35,000 people around the world felt touched enough by Eliza’s story to donate but he remains heartened by everyone who did like the people who comment saying they are out of work but wanted to give $10 to the cause.

“I knew people were good, the majority of people, but I never knew how good until what’s come into our lives,” he said. “They were strangers to us before the diagnosis, but come into our lives and say they just want to help. I’m always taken aback by that. I have a stake in this, my daughter has it, but why would you be doing this?”

The O’Neills like others who’ve had success with crowdfunding realized that successful crowdfunding is about storytelling. Having a sick child in and of itself isn’t enough to galvanize people—we collectively ignore the plight of millions of sick children every day. But it’s when the specific story of one individual can be harnessed that we feel moved to take action. One sickness is a tragedy. A million is merely a statistic.

“It’s about allowing donors to be part of something bigger and I think that’s what these campaigns do,” O’Neill said.

I often joke lately that I used to think I’ve wasted my life on Twitter but it might actually come in handy when I inevitably need to crowdfund an operation. You have to hustle. You have to market. You have to build your brand.

“There’s a lot of people who believe you just post a fundraiser and donations are going to immediately come in, and that’s not the way it works,” Chapman said. “We have thousands of pages posted every week on our site. The big thing is spreading the word. Once you get that momentum going the key becomes providing updates, what the money is going towards.”

“A picture is worth 1,000 words, a video is worth maybe a million,” GoFundMe’s Solomon said. “It’s really a storytelling platform, the more interesting and compelling the story the better these will do.”

In essence, crowdfunding is all about becoming your own agent and publicist and advocacy group all rolled into one whether you’re raising money for a social media robot dog or trying to stave off your impending demise.

“You capture the heart and the mind will follow,” Andrew Dix the CEO of trade site Crowdfund Insider told me. “I think presenting a good narrative that shows a pressing need, and a challenging situation can compel people to contribute to somebody they really don’t know, they don’t have a relationship with.”

Specificity is important he said as is appearing credible. “The last time I contributed to one, I noticed the person had gone to the same university I went to. I read the story, did a little fact-checking, and I said I want to help this person because they’re trying to do what’s right.”

“I think a lot of people have story fatigue Amy O’Leary the editorial director of Upworthy a site that often featured crowdfunding campaigns said. “At this point in human history, we see more stories every day than any generation ever before, so I think it’s a real challenge. There’s compassion fatigue, especially when seeing the same kind of stories over and over again. Sort of the same principles for really great story telling apply to how you get people to care about an issue: vivid details, and a character that’s relatable that you can come to care about through story.”

While it’s undeniable that crowdfunding has saved many lives it’s hard not to wonder how we got here and whether this new piece- meal health care workaround brings other types of ingrained biases. Two recent studies have found that race plays a role in the success of crowdfunding projects although those focused on the more entrepreneurial and equity side of services like Kickstarter.

“I think it’s unfortunate we have a healthcare system where people need to do this,” Harvard’s Jena said. But he added that even in countries with socialized medicine people still need extra money for health care. “If you’re in the U.K., which has a national health service there may not be access to certain treatments that are too expensive to be provided by the federal government, so people may crowdsource funds to come to the U.S.”

Among reporters who have covered campaigns like these for years, the entire operation can seem especially perverse. Hudson Hongo an editor at Gizmodo at the time who covered the phenomenon of viral stories said the decision about whether to feature a crowdfunding story often hinges on the individual’s social capital. “Local indie legend needs transplant, or whatever,” he said.

In the absence of another viable alternative Hongo was often sucked into the piecemeal health care lottery game as much as the rest of us governed by our own whims and biases. “Last week I gave to an acquaintance from back home for a medical recovery crowdfunding thing because I like him. But it’s not like assholes deserve to not be ruined by medical problems.”

Stephen Bramucci who was an editor at Uproxx said he hopes he applies a different standard to life or death stories. If he were considering covering a story about someone crowdfunding to travel the world which is something he sees a lot of as a food and travel editor he’d ask if there is a good hook? Do they have a strong sense of their brand? Are there good photos? Will they give a good soundbite?

“With travel the concern is always the same: They get funded super quick when it’s a really hot couple we can relate to in some degree and we want to see them posting pictures on Instagram of each other’s butts. If you’re holding people’s health to that standard it’s really fucking scary.”

“What if it’s some [old sick] guy who doesn’t have a daughter who’s a good writer?” Bramucci said. “I’m an editor and I get pulled in because it’s someone who can tell a story. That means this guy doesn’t get funded? It’s a fucking minefield.”

And what happens to the people too shy or attention averse to share the intimate photos of their physical suffering? Upworthy’s O’Leary was reminded of a hugely popular story her site covered a few years ago about a young man who’d had lap-band surgery, but now lived with excessive loose skin. “What was remarkable about it was he took pictures of himself and showed everybody what it was,” she said. “Once he saw his story was picking up viral steam there was a crowdfund that started. He was so open and vulnerable by sharing those photos I think people were moved.”

Abby Ohlheiser who covers digital culture for the Washington Post said that she tends to write about campaigns that have already gone viral or have a large potential audience looking for them because they’re already part of a larger news story. “I do see these campaigns shared into my own various social media feeds at a sobering pace,” she said. “And when I see a celebrity retweet or share one of these campaigns, it makes me wonder how many equally deserving requests for a signal boost like that were missed.”

Chapman and the other sites’ representatives agree that ideally they wouldn’t have to exist but say that even with a health-care system that covered everything people will never stop needing funding in times of poor health. Nonetheless it’s tempting to see the pawning off of caring for citizens onto others’ charitable impulses as keeping with Republicans’ gutting services for the poor and needy while justifying it by saying they also give at church.

“Given the current political environment, we’ve definitely seen a lot of apprehension and fear of what is going to happen in the coming months and years,” Boland said. “There are a lot of treatments that aren’t covered by insurance, a lot of experimental treatments that people want to try so only crowdfunding can help them. But we are definitely seeing people who are a little apprehensive.”

Both times she appeared on television Kati McFarland explained her thoughts on the Affordable Care Act. It isn’t perfect she said but it saved her life by keeping her coverage despite her condition. But she’s uncertain about what’s going to happen down the line: even with the ACA’s provisions remaining in place, her costs of coverage are almost insurmountable.

“It’s so sad I have to come on these things and spend time talking about the issue saying ‘go to my fundraiser’ because that’s what we have to do in this country, and that’s abhorrent to me,” she said. “I know people think socialized medicine, that’s a nasty word, but if that was the case we wouldn’t have to do this. If they spent a fraction of what they spend on the military on the ACA—not even socialized medicine—then the premiums wouldn’t be high, it wouldn’t be the mess it is now.”

She read a funny joke on Tumblr the other day. “It was something like, ‘What if we put in a GoFundMe for everyone’s health care all at once, and everybody in the country paid for it, and the money it raised went to help everyone?’”

I was rigid in the chair crying from both fear and shame

It was so bad I would sit on a cold winter basement floor in pain swigging whiskey to dull the pain like I was a cowboy

Thanks to Longreads the only good website for including Welcome to Hell World on their holiday gift book guide alongside some other great ones.

“Luke O’Neil’s Welcome To Hell World is a vital and despairing collection of essays on modern American life,” they say and that is nice although questionably true.

As always if you haven’t already please feel free to chip in here if you can it helps a lot and I appreciate it more than you know.

If you missed this edition of Hell World the other day you should go back and read it.

Ok here’s todays thing bye.

I remember it being so much more violent than I was expecting. The dentist or oral surgeon or whoever it was it could’ve been a hot dog vendor for all the skill involved needed to generate so much brute physical leverage to pull my tooth out. It was like when you’ve got a flat tire and you’re trying to unscrew the rusted lug nuts and the fucking thing won’t turn goddamnit and you’re putting all your weight on the tire jack getting sweaty there on the side of the road.

No offense to hot dog vendors.

Although my mouth was numbed up pretty good when a bone is being ripped out of your face you can still feel it reverberating throughout your body like your skeleton knows that something really bad is happening. Before we even got to that part though I remember the guy basically crushing the external part of the tooth with pliers. Imagine if you had to personally figure out on the fly how to get a tooth out of someone’s head right now. You’d stick the pliers in there and just smash and smash blindly and then there would be a little bony nub poking out when you were done smashing and you’d be like well now what. That is pretty much what the fancy tooth doctor does too. Then he looks at you like you’re an asshole for putting the two of you in this position. Look what you made me do he thinks.

That was roughly seven years ago I guess and it followed a couple of root canals I had had over the previous five years which were not much more pleasant. For the root canals I went to a dental school they have in Boston where it’s supposed to be a lot cheaper in theory but it’s still like three or four grand all told and what happens is you have to offer up your food hole as a training specimen for the students so the process requires a bunch of superfluous visits to get somewhat of a discount and when you are some random fucking schlub freelancer and waiter like I was for most of my life getting a thousand bucks knocked off a bill for something you can’t afford in the first place is a pretty big deal.

People always say haha well it wasn’t like getting a root canal to indicate that something wasn’t too bad but the root canal was preferable to the smashing and yanking in retrospect. The part where they have to yoink the deep nerve endings out one by one with tiny tweezers like you’d pluck your eyebrows out with wasn’t great I guess. Imagine each eyebrow was somehow connected to your entire spinal column and brain and it could shoot lightning throughout your body.

Teeth are fucking weird man who designed this idiot shit.

The reason I ended up needing all that work done was because for my entire twenties I didn’t go to the dentist or to the doctor for that matter because I couldn’t afford it and when you don’t go to get your teeth cleaned or looked at all the problems tend to compound themselves and next thing you are fucked. I am far from alone in that pattern of avoidance in America. Our teeth are all basically fucked.

Check this shit out:

In 2016 around 74 million Americans had no dental coverage according to the National Association of Dental Plans.

In 2017 15% of children aged 2-17 and 36% of adults aged 18-64 and 34% of adults 65 and over did not go to the dentist in the prior year according to the the Center for Disease Control and Prevention. From 2013-2016 17% of children aged 5-19 let a dental issue such as a cavity go untreated while almost 32% of adults aged 20-44 did the same. A lot of you nice people fall into that category I have come to find out and we’ll get to your stories later on hold on a minute.

The reason people don’t go to the dentist may be in part because dental insurance basically isn’t real (?) It’s the opposite of what we think of when we think of medical insurance in fact where you pay a lot in premiums and out of pocket costs but the idea in theory at least lol is that if something really terrible happens it will be capped off so you will only have to pay say $10,000 for a five minute ER visit and not the full $100,000 they want to charge.

With dental insurance your checkups and cleanings and other preventative shit like that is often free but if something really bad happens and you need a root canal or an extraction or replacement teeth or whatever you’re on the hook for thousands of dollars. The idea is that by getting the regular routine care you will prevent ever needing the serious shit down the line I guess. I don’t know dentists are fucking wild man who even knows anything.

One reason the numbers for dental coverage overall are so low is that Medicare doesn’t offer it. 65% of people on Medicare do not receive dental coverage according to the Kaiser Family Foundation. You can be on Medicare and you still have to purchase add-on level up loot crates to get your teeth looked at.

Because of that Kaiser says “Almost half of all Medicare beneficiaries did not have a dental visit within the past year (49%), with higher rates among those who are black (71%) or Hispanic (65%), have low incomes (70%), and are living in rural areas (59%), as of 2016.”

“Almost one in five Medicare beneficiaries (19%) who used dental services spent more than $1,000 out-of-pocket on dental care in 2016” they add.

Dental care is of course not just about the teeth and studies too numerous to list point to all manner of serious illnesses that can arise from tooth issues not to mention all the indicators of diseases that can go unspotted when people avoid dentist visits in the first place.

It’s weird that we even think of teeth as a separate thing in the first place isn’t it? Why do we have to say things like if you don’t take care of your teeth it will lead to real health problems in the other parts of your body that actually count like I did in that paragraph above?

We do that with eyes too for that matter. And our brains. Dental and vision and mental health are all basically treated like bonus features that come with a new car. Oh cool it’s got a fuckin… blue tooth and… heated seats.

People online like to joke that teeth are essentially luxury bones and that is pretty accurate as far as jokes and truth go. It’s certainly a luxury to be able to have them taken care of.

I was curious how many other people let their teeth go to shit over the years like I did whether it was from fear of the pain or fear of the costs or fear of being shamed by the dentist and what other sort of general dental care nightmares people had experienced so I collected a bunch of stories which I will share below.

A curious thing about dental issues I heard from a lot people is the shame involved in taking your care of your teeth or the lack thereof. I don't think anyone is usually ashamed if they get sick in another type of way or break a bone or something but dental care comes with this inherent sense of moral failure on top of the pain and financial stuff. That has a lot to do with how dental hygiene has long been seen as a class marker of course as this fine piece in Dissent The Class Politics of Teeth points out.

Inequalities in oral health and dental access reflect our deepest social and economic divides. The “Hollywood Smile” has become a status symbol around the world, and better-off Americans routinely pay for elective procedures ranging from teeth whitening and veneers to complete “smile makeovers” costing many thousands of dollars. Meanwhile, more than one out of three low-income American adults avoids smiling because of poor oral health, according to a poll conducted for the American Dental Association (ADA) in 2015.

Ashamed and stigmatized, the poor are shut out of opportunities for social advancement as well as work that could help them escape poverty. “If you have lousy teeth, you can’t get a job,” observed Philip Alston, United Nations Special Rapporteur on extreme poverty and human rights. Alston was speaking in Washington, D.C. in December 2017 at the conclusion of a fact-finding mission to study extreme poverty in the United States, one of the world’s wealthiest countries.

So what is your own personal dental nightmare I asked readers. Did you avoid treatment for so long that it lead to something serious? Do you not have insurance or if you do do you still have to pay thousands of dollars to get work done? These are the stories they told me.

  • I haven't been in six plus years and I can't afford what needs to be done which is more than $5,000 of work. The last dentist I went to hinted that my teeth issues were from drugs. She hurt me and I’ve never gone back. I’m waiting for my two bottom front teeth to fall out. I wake up to excruciating pain if I grind them in my sleep. I get really depressed about it, worry about getting jobs, and just the general embarrassment of being toothless.  I worry my partner will leave me and I wont be able to be loved anymore. Anyway, Medicare For All all day.

  • I need to see a dentist but I can’t because I’m broke. I know like five days before I get money I’m going to crack a cavity tooth or a crown is going to fall off or some horrible bullshit. I’ll live in hell and then be immediately broke again.

    It’s just been forever. I can feel cavities getting bigger every day in multiple teeth, and my fucking gums bleed. It’s gross. And I need one last wisdom tooth pulled because it’s crowding. But I’m not in actual pain again yet so I have the luxury of spending all my money on rent.

  • Why is the mouth not considered part of the rest of the body? This year I had to pay my own huge dental bill when I thought I was covered. My work’s HR fucked up my enrollment and only did medical, and I’m thankful for that, but not dental. I found out when I needed a root canal. $1,682 for the root canal. $2,190 for the crown at a regular dentist.

    I would have gone to a dental school if I had realized I was going to pay out of pocket. I had a root canal and at least one crown done at a school about five years ago, but it's further away, and takes at least half a day for each appointment.

  • I had to sell my car to pay for my wisdom teeth removal. I got my first cavity ever after I started freelancing. That required a root canal and wisdom teeth removal because of the position of the cavity. I needed a crown but I put that off because of money until the molar cracked. I had to get it pulled too. It was $6,000 even with a friends and family discount, with zero help at all from my $700 a month marketplace insurance of course.

  • I found out last night I need at least $10,000 in dental work, maybe more, and 90% of it isn't covered by insurance. Life always brings us delightful surprises. I need implants for missing teeth and veneers for six of them. The enamel didn't form right on my teeth, but they consider my very real need for them “cosmetic.” It’s so dumb that they can't differentiate between needs and wants. 

    I have dental insurance but it's new so it doesn't cover anything but exams and cleaning for six months. Even after that $8,750.00 won’t be covered at all.

  • I’ve got top tier insurance and I’m still looking at $15-20,000 of work to repair and replace all the dental work I got as a kid that is currently falling apart.

    Basically all of the molar fillings I got thirty years ago started disintegrating at the same time. I was the sole income in my household and I couldn’t afford to take care of anything so I put it off and now I’m missing six of them. Two might be able to be saved, but under my current coverage cost per tooth (for implants) is still close to $3,000. My other option is extraction and a bridge/dentures which kinda sucks, but might be all I can afford.

    Also just thinking about starting this process sends me into this shame/anxiety spiral that just makes everything feel worse

    I don’t even know where to start but I really need to do something soon.

  • My teeth are ugly because of crowding and I constantly had cavities which no one ever said was genetic. Also my mom did not instill brushing habits at all, so I’m still bad about it and I’m deeply ashamed but I can only fix one thing at a time.

  • Last week I had to cut my gums open to remove bone spurs. They had been sticking out, as solid as an actual tooth, like broken glass while they horribly gouged the bottom of my tongue. Deep lacerations on my tongue would remain open and constantly keep my mouth full of blood. I couldn’t talk or eat properly because the pain was unbearable. My extreme depression and anxiety fueled the shame, while no insurance ensured that I’d be living with it. I could no longer take it and sterilized my pocket knife. I pulled three sharp little pieces of broken bone out. I can’t go to the dentist and it’s been severely personally damaging. The holes will heal now.

  • I used a textbook and the internet to teach myself to repeatedly drain a dental abscess, over the course of two years, when I was in college. How I didn’t die is beyond me.

  • I haven’t been to the dentist since I was in college about four years now. The last time they told me I had seven cavities. I haven’t had coverage since. I’m not in pain yet but there is something terrifying for sure happening to my end teeth in the back because I can see the discoloration. I’m supposed to have “full coverage” dental insurance from my job but I tried to use it and I would have to pay for anything and everything up front in full and then wait anywhere from three to nine months to be reimbursed in pieces.

  • I was missing a front tooth for a whole year back in 2009 because I was a waitress with no insurance and had to get it done step by step when I could save the cash. I got an implant at the Tufts Dental School and it took forever. It made my 2009/2019 decade photos a real no brainer.

    It wound up being around $3,500 broken up by procedure. I needed an extraction, a bone graft, the implant post, and then the actual tooth. I worked a lot of doubles and learned to smile with my mouth closed. A decade later it’s still in perfect shape, they did a great job.

  • My husband's bottom front tooth was completely dead and not attached and he kept putting it in the hole so that it would look like he had most of his front teeth. He finally came up with the funds for a partial thankfully.

    He would take the tooth out, brush it, and put it back. When he called the denturist finally he was horrified and told my husband he was going to make a gaping hole that would never go away. Now under his partial there is a gaping hole that has not gone away. I did not know these details about the hole until he just told me.

  • My dentist growing up didn't think I should get my wisdom teeth removed. I think because he was retiring. So I put it off for twenty years due to poor or no insurance. The last five years were spent with migraines, constant sickness due to infections, and pain.

    I finally did a GoFundMe. It raised about half of what I needed. I went to the supposed best dentists. I came to the in the middle of the procedure when she was using what felt like a mini crowbar to get one out.

    When she was breaking off part of my jaw to get one out she did a poor job sewing up one of the holes and it has never fully healed. It’s two years later and I'm hesitant to go back due to money and the memories. Four wisdom teeth and all the other things I needed to have done was just under $3,000.

  • This is real fucking small beans compared to what a lot of people go through but I always feel this one as being just real American Health Care Hell World in its banal cruelty.

    I had just gotten a job in the mid-2000s after not having one for a while, and of course you don't get insurance right away, you have to wait, for “reasons”, that I guess amount to “Well, what if it turns out he's a shit head and gets cancer right away, we don't want to have to pay for a shit head's cancer treatments.”

    Like the week I got the job, and thirty days or so before I got coverage, I shattered a tooth. It didn’t hurt at first, so I tried to just roll with it, eating soft foods only, chewing on the other side of my mouth, all good stuff. But eventually I just can't keep going. The pain is just excruciating. I can't sleep. It's affecting my work at my new job…So I call around where I lived on the south side of Chicago to find a dentist who would a) Take cash and b) Take this goddamned thing out of my mouth now.

    I find a Korean strip mall dentist at Ford City who says he'll rip the tooth out for $50. That's a lot of cash for a guy who just got back to work after a long layoff, but I need this thing out, so I pay it and he clambers up onto my chest with some dental pliers and just goes to town ripping the mess out by the roots. After a really long painful time, he hops off and says “almost done”, but he's a jokester and he shows me two long shards of tooth and pile of tooth rubble and says “Just kidding, we’re all done.” Haha I guess.

    I felt like shit for being a pussy who couldn't hold out two more days until I had coverage and also for now having yet another gaping hole in my gums where a tooth should be for a tooth that other dentists have since told me could probably have been saved. Thanks for that useless yet somehow blame-giving knowledge, other dentists. 

    It was great to think of that whole episode again today as I paid out a mere $150 for a basic six month cleaning and wonder what people who don't have my reasonably “good” health insurance that covers fuck all for dental or vision do when shit like this happens.

  • I've never had dental insurance, plus I grew up with a mother who had a phobia of dentists — her childhood dentist didn't use novocaine for her fillings — so I’ve literally never been to the dentist. I got my teeth cleaned by a visiting hygienist at my elementary school once but I don't think that counts.

    I brush and floss and am anxiously awaiting the inevitable mind-rending pain.

  • I avoided going for years then I got married and insured and went. I was absolutely taken advantage of with multiple root canals and expensive as fuck crowns, not all of which were necessary and one I explicitly said I did not want.

    Dozens of procedures and thousands of dollars later I'm back to avoidance. I'm walking around with two holes in my mouth where crowns used to be. Crowns I didn't want because they weren't visible in my smile and there was enough tooth left for fillings. But the dentist insisted… I relented and they were garbage and so they fell out.

    If I get insured again I should go back. But how do you know a dentist isn't predatory beforehand? How do you even know some are predatory until you read an article about it years after it's happened to you and you just sit in shock with it for a night?

  • My partner's uncle who was on disability for a long time and worked part-time hourly at a local hardware store suffered, and still suffers, from a debilitating brain abscess that stemmed from an un- or under-treated severe tooth infection.

  • I never liked taking care of my teeth and right now on my fridge is a different kind of dental plan. It's the oral surgeon's plan to take eleven of my teeth out for replacing next year when my insurance pays for this thing.

    My first band practiced in the basement of my guitarist's parents house for like a long time before we got a practice space and we were definitely too old to be doing that. My wisdom teeth were coming in and eventually one of those things got rotted and abscessed. The reason I mentioned the band was I would carry a fifth of Jim Beam with me because the pain was so bad I would sit on a cold winter basement floor in pain swigging whiskey to dull the pain like I was a cowboy or some shit.

    I finally went to one of these Gentle Dental places. The dental assistant finally says ok, open it up, say ah all that shit. I open my mouth and they look in there, and without skipping a beat, calmly but quickly turns around, picks up a literal phone and says, and I'll never forget it, “You need to see this guy RIGHT NOW.”

    I'm whisked to another room, loaded up with novocaine, and they extract a rotten abscessed tooth that could have easily killed me from the infection itself.

    I haven't had a drink to dull the pain in over ten years and I look forward to these new chompers I'm getting if I get up the nerve to go back to this new guy. Wish me luck on taking advantage of every benefit available to me while I have it. Since everything is terrible you never know when it goes away.

  • I was working in Mexico last year and took advantage of a full dental exam and teeth cleaning done by an actual oral surgeon herself for sixty bucks. Walked right in. Wasn’t insured in USA at the time. It would’ve been impossible.

  • I had to have a ton of work done when I first got into the military. The few years after getting out, but before getting insurance, coincided with the expiration of most of that work. I put off the smaller problems in order to deal with the big things and root canals.

    By the time I got insured the smaller problems had become big ones. All dental insurance is a joke. It won't even cover a whole root canal, and you're on your own for the crown. Can't afford the crown? Might as well have had the tooth pulled to begin with because it's going.

    From about fourteen to sixteen, knowing we had no dental, I ignored an exposed cavity until the resulting abscess had me sobbing. I had an emergency root canal at Gentle Dental with the meanest fuck in dental history. Getting a permanent crown was out of the question and I was so traumatized from that procedure anyway that I refused to even think about the dentist. By the time I joined the military at twenty two that tooth had long become just a hole in my gums. I'd gotten pretty used to not getting food down in there. Lucky me, it was in the very back, because when the military dentist pulled it, the one above had to come too. Without a lower contact it was migrating downward. Wisdom teeth came out on that side too because why not? It wasn't a bad experience, despite the novocaine-only procedure.

    That's all only because I'd been able to get past my trauma a couple months earlier, when they fixed the six cavities that had occurred over six years without dental care. I was rigid in the chair crying from both fear and shame.

    What fixed it? The insane empathy of a dental team that had seen who knows how many young troops (read: more likely to be working class/poor) like me. You wouldn't expect a military dental technician to be the one stroking your forehead and taking all the time you needed, but there we were.

  • I make an average salary for my area and I put off the dentist for four years resulting in multiple root canals and cavities over ten visits. The worst was the money obviously but second worst was telling my boss I had to go to the dentist ten times in a year and feeling like a dumb ass. It was $5,000 out of pocket with one more root canal to go. My dental insurance maxes out at $1,000 so I’m waiting until next year to get it covered. I will also need an implant eventually but I’m putting that one off.

  • I didn't have any insurance but thought I was going to die because my mouth hurt so bad. In retrospect that probably doesn’t happen. There is this place in Nashua, NH that will give you antibiotics if your mouth is infected or other minor things. They hooked me up with antibiotics but couldn't do anything about the wisdom teeth until I got this other tooth out. I don't really remember. I loosened the tooth and pulled it out myself like maybe two months after but I didn't even end up getting my wisdom teeth out until I had union insurance like five years later.

    I waited so long to do anything I ended up having to pay like $5,000 to get all my other teeth fixed when I had money.

  • Here’s my nightmare. I got root canal a year and a half ago. It was $750. Turns out they didn’t do it correctly, so I had to get it done again. Hopefully it was right this time. It was $2,000 this time because they had to destroy an old crown. It’s worth noting both of these were done and covered under “good insurance plans.”

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I thought no one is going to believe me I have to somehow document this

I want you to know that I have loved you since the moment I met you

"Three Princesses" 2018
(All photos courtesy of Tom Kiefer and Redux Pictures)

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Dora Rodriguez grew up in a small town in El Salvador called Santa Ana and when she was a teenager she belonged to a church group she says. It had never occurred to her to come to the United States she loved where she lived she was a happy child she says but then in October of 1979 “it was the first time we got hit by the soldiers in our area,” she says. 

“That night we were coming out of our meeting, and Jose, our president of our little group, got murdered in front of us.”

That was when she started planning her trip. 

Dora relaid her story to the artist Tom Kiefer while visiting his studio in Ajo, Arizona earlier this year. It was thirty nine years after she and a group of migrants were rescued after being lost in the desert for four days near the border. Of the twenty six that started out in her group only twelve made it.

The video in which she shares her story is a companion piece to Kiefer’s ongoing photography project El Sueño Americano | The American Dream which is being exhibited until March at the Skirball Cultural Center in Los Angeles. For the project Kiefer has photographed many of the thousands of items confiscated from migrants by border officials that were deemed “potentially lethal” or “non-essential” items like toothbrushes and bibles and love letters and CDs and perfume.

For years Kiefer worked as a custodian at a border facility and he methodically saved the objects from the trash knowing he had to do something with them some day but unsure of what until he had the epiphany to start photographing them sometimes one by one sometimes arranged in sweeping visceral patterns.

“Belt Labyrinth” 2014

As she speaks with Kiefer Dora pauses to touch some of the items he’s collected like key chains and rosaries and water bottles and lighters. She has a photo of herself in the hospital after her group was found with her. Her hair was burned from the sun she remembers. On the back she had written “I spent five days in the hospital. I look so ugly right?” and as she reads it aloud she laughs.

Kiefer had no idea he would eventually turn the results into an art project he says but he knew he “could not in good conscience let those items remain in the trash.”

Then Dora picks up a tiny notebook and reads from it. “Blanca, I want you to know that I have loved you since the moment I met you,” it reads. “You know I love your beautiful eyes. They hypnotize me. I will belong to you forever.”

When someone arrived at the border they took that from Blanca and threw it in the trash. Fuck you Blanca.

A lot of the women Dora came across with were trying to keep themselves looking good on a walk they thought wouldn’t be all that long Dora says as she’s contemplating a collection of perfumes Kiefer has assembled.

Dora says her uncle would tease one of the women on her journey about having rollers in her hair. The woman would say “Well tomorrow I’m going to be in Los Angeles with my husband.”

She died in the desert. 

“We were drinking cologne by the second day in the desert,” Dora says. “That saved our life too, that spiced cologne.”

Picking through a pile of blankets and cloth satchels Dora finds one that says siempre te amare.

“I wonder if this person made it to the United States or if they stayed in the desert?” she asks.

“Billfolds and Wallets” 2014

I spoke with Kiefer about his project and about his years working at the border facility.

How does someone come to be a janitor at an immigration facility? What brought you there?

I moved to Ajo, which is forty miles from the Mexico border, and about one hundred miles from the California border, in 2001. I had lived in LA for twenty years beforehand. The reason I moved was so I could own my own home, control my living environment, and use this as a base camp to do my photography. My project was to photograph America. I know that kind of sounds like… What does that mean? Are you familiar with Walker Evans? He was a definite inspiration for me. And Robert Frank. I sold an antique business I had in the nineties. I was like well I’m not getting any younger. Let’s do what I should have been doing all my life. 

After a year and a half living here I needed to have some kind of money coming in. I saw an ad in the local newspaper: Custodian. Border Patrol Agency. $10.42 an hour, which, back in 2003, was big bucks. 

Pretty good!

Right, all you could find was a minimum wage job of $6.75 here. So I applied and I started working after about six weeks after the security clearance. 

“Nail Clippers” 2015

Were you particularly political at that time in your life?

Taking the job was not a political act. It was just a necessity. I didn’t have any grand plans of doing what came to be. It was about my fourth year working there, and I was just starting to get really agitated, angry, upset, disturbed, by seeing all the food that the migrants and those seeking asylum, the food they carried in their backpacks, was just being thrown out. I thought hey we can do better. Let’s at least bring the food to the food bank. When I started working there the agents were actually doing that. In our local newspaper, when there would be enough food, the agents would pose in front of it. 

So it was my fourth year and I asked and was given permission to collect the food. And that was when I felt the horror and the shock of what else was being taken away and thrown away from the migrants and asylum seekers: bibles, family photos… I thought this is so not right. I started to discreetly, along with the food, collect these other items. 

That started in 2007. It wasn’t until about six years into that that I finally figured out how to arrange the objects, the belongings, in a way that showed my deep regard and respect, and just like...wow, these are sacred objects. It was a slow process. This type of photography, studio work, still life, assemblies and so on, I had no experience in that. I was just doing outdoor work. It was a completely different approach to working with the camera. I just kind of figured it out along the way. And I continue to shoot. This is just the beginning. There’s so much more to photograph. The underwear, the shoes, the jeans, the jackets… There are no shots of those yet because I haven’t figured out how to shoot the underwear. How in the hell do I do that?

“Nuevos Testamentos” 2014

I guess the thinking behind my question was you didn’t come into this like I’m going to get in there and I’m going to do this piece that exposes how people are being treated. You just came to that realization gradually over time?

Yeah. I knew instinctively seeing these objects in the trash was not right. But I didn’t even know I was going to photograph them. The larger items, like blankets, and jackets, and jeans, and shoes, I actually donated a lot of those to our local thrift store at the beginning. Then I thought, you know what, no one is going to believe me. I have to somehow document this. How do I do that?

It’s just been a very long process. It wasn’t until 2013 where I had all the black combs and brushes in a box. I just started selecting some of the objects, putting them on a black background, and took the shot. I went Oh my god! This is it. I’ve cracked the nut, so to speak. Then I assembled the pink combs and brushes on a pink background… 

“USA! USA! USA!” 2019

The toothbrushes I did back in 2014. I did what I thought was going to be my toothbrush shot. It was hundreds of toothbrushes and toothpaste. It looked like a big sea of swimming brushes. It was a very colorful kind of pop image. I thought I was done with the toothbrushes. Then last year I started noticing that there were all these children’s’ toothbrushes. I thought I need to do these individually. Really in your face, one toothbrush, one color background. Then I thought, wait a second, look at all these red white and blue toothbrushes...I did that shot this year, fifty red white and blue toothbrushes. 

That one is “USA! USA! USA!”?

Yeah that one. I wanted to underscore the craziness of who is making the decisions on who we let in. Not only that but the millions of people who are living in fear for their life. It’s just absolute insanity. 

Obviously that title is ironic and angry. 

Busted.

When did you stop working there?

I resigned in August of 2014. It just got to the point where I had to make a strategic decision. Ok, I have to devote everything to this work, give up a steady paycheck, and eventually go public with this. 

You weren’t there for Trump. Everyone is very mad about the way the Trump administration has been handling migrants, but we haven’t been doing a very good job of it through Bush and Obama… The years you were there it wasn’t exactly very humane then either was it?

Well it was not inhumanity on steroids. 

So it’s gotten worse?

Yeah. And they keep on moving the goalposts about seeking asylum. You present yourself at the border for asylum, and now it’s take a number and stay in Mexico. It’s just insidious and cruel. 

Did you have many chances to interact with people while you were cleaning?

No.

Was that by rule or circumstance?

Well I wasn’t there to interact. I was there to clean the cells and take out the garbage. Sometimes I would make furtive eye contact. There were times when it was just heartbreaking. We’re not talking about rapists and smugglers by and large my god no.

A migrant will often carry a keepsake or memento of a loved one when traveling or returning for work. If unlawfully entering the US personal belongings are confiscated and discarded. A child's shoe recovered from the trash. #claudiagonzalez #elsuenoamericanoproject
June 6, 2018

I think that’s what your photographs are telling us. I’m looking at the baby shoe one. Obviously, intellectually, we know there are children making this journey and suffering through it. But there’s something about isolating the shoe that a baby was wearing that has a different sort of emotional impact. 

It also doesn’t mean that particular shoe was… It was most likely carried as a keepsake to inspire, to give that person faith and hope, like this is why I’m doing this. I’m risking my life for my son or my daughter. And then to take that away and throw it in the trash? I mean, come on. 

And some of these love letters and bibles. Taking someone’s bible… That seems at odds with everything that our country supposedly stands for. 

It doesn’t seem at odds, it is at odds. It’s vulgar. 

Vulgar is a great way to put it. Have you had any contact with government officials aware of your work? Have they expressed any displeasure? Any worry you might get in some kind of trouble?

The era that we’re living in…who knows? It seems like my extreme worry about doing this has kind of passed. But who in the hell knows. Senator Jeff Merkley from Oregon posted shots from the exhibit on Instagram. He said some incredibly eloquent, stirring words about this. 

It's easy to get lost in the scale of the cruelty. But every item you see is a story: a child’s, a mother’s, a father’s. Someone who owned a tube of toothpaste, who wore Velcro baby shoes, who made a playlist of “super sappy songs”. We can't lose sight of them. Photographs from @tomkiefer.photographer, article by @latimes #familiesbelongtogether #immigrantswelcome
December 3, 2019

I met with lawyers back in 2011-12 just like, ok, how am I putting myself at risk here? What could happen? Could I be thrown in jail? There was some obscure state statute on the books where if I were found guilty -- I can’t remember what it was -- I could serve up to six months in jail. The likelihood of being convicted of that… But that was 2012. Who is to say a perfect storm of events and pissing off the president couldn’t…

You’ve been involved with Scott Warren of No More Deaths. That’s like what we’re talking about here. Who would have ever thought someone would be prosecuted for leaving water in the desert? Thankfully he wasn’t found guilty but… What’s your relationship with him?

I donated a piece for a benefit auction for him. I’ve known Scott for ten years. He’s a neighbor. He’s been to my studio several times to talk to different groups of people, visiting students from the university, or other aid organizations. 

You talked about the food at first, but was there some object you came across that was the epiphany for you that you had to do something?

The first thing I ever collected was a bunch of toothbrushes. I thought they should be recycled or repurposed. Then it was a rosary, a bible, a wallet. A wallet that still had identification and credit cards! I thought this was lunacy. 

The word you chose, vulgar, that just speaks for all of this. What do you hope that people who see your work take away from it?

I’d like it to inspire them to act however they can. It could be volunteering. At your church or humanitarian aid group doing water drops. For me it became pretty obvious how I could make a contribution to the whole conversation about all this. Imagine if we got mobilized? The power…

There’s this one wonderful woman named Marilyn who lives in Olympia, Washington. About a year and a half ago she contacted me and wanted permission to print out a number of the images and create a walkabout in the back area of the woods behind the church, like a pathway, like the stations of the cross. And at each station would be a photograph from El Sueno. One shot she used was a toy car with a bunch of smaller gray cars. It was on a gray background, and it mimicked an imaginary pileup of all these cars.

The fact that she did this, and displayed this at her church, it got people that were completely removed, who would never probably go to a place like a cultural center to see an exhibit. That kind of grassroots, homespun activism. Then they redid it in a different area in Olympia. I thought, wow, wouldn’t that be cool if this happened in every state? This grassroots thing to create a conversation about this. We need to do something. We’re not going to let these policies that have been bastardized and re-worked to be criminal… It’s not right. 

I’m getting kind of activist here aren’t I?

Well it’s good! This is a very angry newsletter. You haven’t tipped over the edge quite yet. 

At the same time, I’m not confrontational by nature. It’s just not who I am. But how do we work this out to the point where it doesn’t get ugly? I like to think of myself as just a kind, gentle, quiet artist. 

I used to think of myself like that, as a writer, but now I’m wondering if art and writing isn’t going to do the trick anymore.

“Gloves” 2014 

This country is unequal still

And history continues itself

Welcome to Welcome to Hell World the newsletter about predatory capitalism the carceral state and addiction and mental health that’s also an emo and post-hardcore music blog for some reason. If you can chip in to support my work please do. Paying subscribers can listen to a recording of this interview here.

If you’re new here due to today’s musical interlude with the on and off again beloved Massachusetts band Piebald you may appreciate previous pieces like this one with my top 118 emo-ish songs of the decade or this one about YouTube comments being the last sincere place online or this one where I talked to a bunch of punk and emo favorites about the lowest moments in their careers.

Regular Hell World readers will know that from time to time in the midst of relaying one stomach-churning story about police violence or healthcare bankruptcy or what have you I often meander off into stories about my own shitty past including anecdotes about my cokehead Boston scenester twenties but one thing I forgot to mention is that more often than not the music playing in the background of most of those scenes the diegetic music if you will was from a band called Piebald and in particular their 2002 album We Are the Only Friends That We Have which is pretty much a perfect record start to finish.

Being from Massachusetts and roughly the same age as the band watching them and other bands in the scene like Cave In and Converge develop over the years and go on to bigger things was pretty exciting to behold because people love it when bands who are from where they are from succeed although only up to a point and then fuck them. That’s particularly true in Boston where we all have an inferiority complex combined with an underlying belief that we’re better than you.

To be honest I don’t have a very good sense of to what extent Piebald actually “succeeded” I should ask about that.

Although they’ve popped back up to play some shows here and there over the years including the one in the posts above in Boston in 2016 at which I believe I cried on a couple of occasions their recent release Piebald Presents to You, A Musical Christmas Adventure is their first new music in roughly twelve years or so.

I spoke with the band’s Travis Shettel on the phone from New Orleans where he lives because I guess he thinks he’s too good for Massachusetts now but instead of doing a regular band interview I asked a bunch of other bands who are also fans of Piebald to write the questions themselves which is great because it’s different and also I’m lazy.

Even if you don't know and love Piebald like you should this is a great chat about being a band lifer and sort of making it but not quite and Christmas music and New Orleans vs Boston and LA and what being part of it means and more.

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Cat is out of the bag! Here are some headlining dates we’re playing before and after the Dashboard Confessional tour in February! Party time! #ragewithmyfriends #stuartcannotbetagged
December 3, 2019

Before we get to that though you should know that fifty years ago yesterday Fred Hampton was assassinated in his sleep by the pigs in Chicago and here is why.

Imagine that?

Another thing you should know is this week the Trump administration approved a rule that will remove 700,000 people from federal food assistance inserting a work requirement into the program and here is what I think about that.

There are fucking “liberals” who think like this!! The only thing I tell myself is maybe they can be convinced. Actual conservatives are fucked from birth and doomed to hell and there’s no point talking to them about anything.

Ok let’s talk about music!

I always say the best time to interview a band is right after they’ve been to the dentist.

Yeah… I’ve just been to the dentist. But it’s the LSU Dental School. But it’s the dentist. I got a cavity filled. That’s dental stuff.

I used to do that when I needed a couple root canals, I went to like Tufts up here.

Yeah it’s a lot cheaper.

It’s funny, I’m working on a piece for the newsletter where I ask people to tell me a bunch of their dental nightmare stories. A lot of people, and I’m sure a lot of band dudes especially, never went to the dentist for like ten years in their twenties. Does that apply to you?

Yeah I mean I didn’t go very often. Like every few years. My teeth they feel like they’re made out of oatmeal anyway. I don’t know what’s going on there. I have tons of cavities. They look nice, but they didn’t age nicely.

Yeah I have that thing, people tell me I have nice teeth. Yeah, in the front. In the back it’s like a fucking horror show.

Yeah. Look inside all my teeth. It’s not pretty.

When did you go down to New Orleans?

I moved here three years ago.

For any reason? For a job or family?

No, just cause, every time I had been here it had been a magical experience. And it’s a very unique place. And I didn’t know anybody so it was a big challenge for me. I just felt it was my time to leave Los Angeles.

Do you still get after it at night and stuff?

Yeah for sure, I mean, I’m a bartender. I work at a bar, sometimes my shifts start at midnight here. It’s really kind of wild here.

Jesus Christ.

Yeah it’s a weird… New Orleans is a different land. It’s not the same.

You came through LA, but compared to Boston it’s gotta be like night and day.

It’s very different. It’s very European. Actually though, I would say it’s closer to Boston than it is to LA. Just the vibe, and the historical… It has a lot more age and history than LA does. LA got like mob-built in fifty years. New Orleans and Boston are hundreds of years old.

Right, that part I get. So the idea of this thing is instead a regular boring interview I’d get a bunch of bands who are fans of Piebald to ask questions. But before that I have a couple. If you were going to re-write the first couple lines of King of the Road today, how different would it be?

Not very.

Was that accurate.. mostly accurate?

Yeah some things were a little embellished. But, you know, Andy did get sick of Newbury Comics, and he did go back to school. Aaron is a little heftier than he was when I wrote it. Alex keeps playing drums, but instead of Van Halen he’s in American Nightmare and other bands. Uh, let’s see. John did get married to Laura. I do not teach their kid… I’m probably the furthest off! They had a couple kids, but I don’t teach them. And Luke. He’s here too now. That’s it.

I hear you guys were batting around the idea of doing Christmas covers, but it didn’t work out. Were there some that you tried?

Not really. We had just kicked around the idea before we recorded three of our own songs that we would make one of our own songs and record a Christmas song and then we just never did it. Over ten years ago now when we were doing the Christmas shows in Andover, MA and we did one with Cave In, I think we were on WBCN and I played The Christmas Song… the one that goes “Chestnuts roasting on an open fire…” I heard that radio broadcast the other day so maybe I’ll bring that one back.

We had a phone call the other day and I was like So do we want to do any Christmas songs? And Aaron was like we just wrote three what are you talking about? …

So this newsletter is usually political but I’m also a huge fan of punk and emo and hardcore so every now and again we do a music edition. I don’t know that I ever would have thought of you guys as a political band overtly, but was it in there?

Yeah for sure. I think it still is in there. I think there’s like a do things yourself. Make the best of what you can. The system may not look out for you and probably isn’t going to. There’s huge inequalities. I’m trying to spin it in the most positive light in a song because I gotta be honest, nobody wants to hear political rhetoric for a band’s entire set. I know I don’t. But there are moments where I feel politics needs to be discussed. Songs like the Marcus Garvy song. That was a wake up call to me in college. I’m reading about these people that I’ve never heard about because… Who didn’t want me to tell me? All the people in charge who are rich, mostly white people who have historically controlled this land. That’s why I didn’t hear about it. And that’s sort of how American Hearts is too. I ran into a homeless dude and he started yelling at me because I didn’t have anything to give to him. It was my conversation with a homless guy that really didn’t go that well. So there are moments of political… I don’t think of us as a political band, but it is in there for sure, and I hope that people pick up on some of those things.

It’s sprinkled throughout for sure. And you know, this country is unequal still, of course.

It is. Worse than when I wrote that song. It’s horrifying.

Here’s a weird question — and it’s always awkward to cast yourself as a big fan, but I am, and I don’t usually want to say that because it makes the energy a little different when you’re interviewing somebody — but I don’t have a good sense of how big Piebald ever was if that makes sense. I’m from Boston… I would go to the shows and they would be huge and everyone would be stoked. But was it like that everywhere else?

No. No it was not. Boston is certainly our home and gives us the most props in the nation. Probably the world. That’s like our place. We feel like we’re from there, and Boston lets us know that we’re from there. But we’ve had incredible shows in New York, Los Angeles, Philadelphia… But then there are places where it’s not as hot. I also think our popularity has gone in waves over the course of our career. There were times when we were really hot shit. Now I think we’re living off of this, like, people living off of these past emotions. And it’s great. It allows us to have this future and this present. I would not change anything. We’ve had times when we just weren’t as popular. The mid-2000s was a downtime for us. That, I think, caused us to take a big break because it was hard. Well it was hard for me I’ll tell you that much. I can’t really speak for anybody else but I had a tough time with what was happening with Piebald in the mid-2000s.

Well that’s a thing I’ve always been fascinated about, as a music journalist, and a musician myself, never breaking through to the next level, but, I’ve always had that appreciation for bands that like… tasted it a little bit.

Yup. That is pretty much where we’re at. We never made it to like Taking Back Sunday level, or like Jimmy Eat World level. But we are obviously bigger than tons of bands that existed at that time, before, or after. So we’re somewhere in the middle. But we can’t live off it. We do it because we love it. We’ll be able to pay for Piebald, do you know what I mean?

It’s self sustaining?

Exactly. But I don’t think it would be a wise decision for us to quit our day jobs if you know what I mean. But we’re lucky enough to be in positions where people respect our band in the places where we work. They’re like, well you told us from the get-go you were a musician, so, we’ll figure this out.

I have people come into The Saint, and we weren’t very big in New Orleans — maybe Piebald played less than ten shows here — and people will come in and say Are you the dude from Piebald? And like, I can’t believe that’s happening. That happens and it blows my mind.

The bar you work at is The Saint?

Yeah. The Saint is like an awesome dive bar.

Well any New Orleans readers are going to have to come in now. You’ll be happy to hear — I also do Emo Night Boston here — and we get a couple hundred kids. Around midnight or so we’ll play American Hearts, and all the twenty five year old kids seem to know it, so that’s a good sign right?

That’s great! At this point, it’s wild, but I have a feeling older brothers and sisters introduced younger brothers and sisters to it. And parents introduced their kids to it at this point! Which is crazy! I never thought we’d be talking about Piebald in an age… People who went to see Piebald shows in the late 90s have kids that are coming to see the shows now.

It’s crazy. Ok, well I got a lot of questions from other bands so let’s get to them. This first one is from Jeff Rosenstock, who’s great by the way. “So many of your lyrics are these perfect one-liner immediately quotable non-sequiturs for my friends and I who would say Hey you're part of it! like all the friggin time. How much editing goes into your lyrics? Is it stream of consciousness straight off the dome stuff or is it an endless quest to find the perfect sounding words? Or is it some sort of third option I'm not considering?”

I think it’s mostly the third one. If I like how something sounds I’ll write it down and sneak it into a song somewhere. Even if it doesn’t really fit the vibe or the construct of the theme of the song. I feel like it’s more about finding the perfect words.

I remember trying to pull lines that felt like they went together to make a song so it seemed like it was a little more streamlined. But I do think it’s more like searching for great one-liners over and over again.

He also wants to know if that changed over the years?

Not intentionally. I feel like that’s how I still am lyrically, or think I am, or feel like we are? I hope we’re witty and full of one-liners still.

Like some of the jokey titling type of stuff you guys were doing. Fall Out Boy and bands like that were doing those long jokey titles too, but were you doing that before?

I don’t know about before all of it. But I remember we put out Friends… and it had all these witty titles. Then I remember — I don’t want to say Taking Back Sunday again — but it was like Cute Without the ‘e’… Songs like that sort of had a similar vibe. It may have been at the same time. I really can’t go back and say we did that first. I think a lot of that was in the same ballpark. Maybe we were sitting on the same things at the same time.

Yeah it was in the air at the time. These next couple are from Christian from The Hotelier, who, if you don’t know, are one of the most exciting bands out of Worcester, MA in the past couple years. He says “So The Hotelier coming out of Worcester was surrounded by a lot of hardcore, and in a sense our music was a response to that scene. I’m wondering, coming up in the Merrimack Valley HC kehd, if you find that Piebald has elements that were honoring, pushing back against, or responding to the local hardcore scene in any way?”

I’d say all of it. All those things. We responded to it. We pushed back against it, but that was after a time. Only musically. Not the vibes of the hardcore scene, but the music. We were like, we started getting into Sunny Day and Weezer and it changed what we wanted to do musically. I was saying this in an interview the other day, we realized you could still be really heavy, but you don’t have to scream. You can walk away from a song and still want to punch a wall, but you can also be singing at the same time. There can be some harmony in there!

My favorite thing in the world is a band that started out as a hardcore band and decided they wanted to write songs. All my favorite bands were hardcore bands who decided, well, maybe we could sing a little bit…

Right. I think it’s just a natural growth. Look, when Piebald started it was 1994. I was sixteen. I just had less life experience and had heard less music, so the hardcore scene was super motivational at the time. And it still is. It’s why any Piebald thing existed and grew us to where we are at now. I am very proud of that history of us, that being what our youth was. Going to all ages shows, VFW halls and seeing touring bands play with Converge and stuff. I don’t know…It was awesome. It was inspiring.

Christian wants to know if there’s anything uniquely New England or specifically North Shore, MA about Piebald.

Not intentionally. But I don’t think you could take that out of us. I didn’t intentionally write Massachusetts or New England vibe songs, but Fear and Loathing on Cape Cod is screaming at me right now. It was just an experience I had on Cape Cod. Because I’m a Massachusetts kid I do think there are some things that are very Massachusetts, Boston, and New England about us.

Did you guys ever play at the Beach Combah kehd?

The Beach Combah! I don’t think we ever did. Sadly. But I’d love to play the Beach Combah.

You missed out. Did you have a Massachusetts accent? And did you lose it as you moved around the country? This is me asking.

No I didn’t really have a whole lot of an accent but I grew, and so did, well Luke grew up in Connecticut, but the rest of the Piebald dudes grew up in Andover, MA. I think it was because it was more of a suburb, so the Masshole accent was around, but I didn’t get it as much because of being in the burbs.

Here’s another one from The Hotelier. “Piebald’s sound feels defined by its humor and playfulness. Sometimes even its sincerity feels like a joke. This is a thing of music where you hear a piano breakdown or key change on the last chorus you think, ‘That’s funny.’ And Piebald has never really shied away from that. I’m interested in hearing about what is in that. What is Piebald’s artist statement, or what do you feel Piebald’s mission is, and how does this humor fit into it?”

Humor is huge. I also think I don’t like when things are a joke of themselves. There is a line. We try to draw it where, yes, we are goofballs, we want to have fun, yes, we laugh at ourselves, yes. But at the end of the day we hope what you remember us for is a really fun show, us being awesome, and everybody singing along. The humor part can be remembered, but I hope that’s not all you take away from it.

Ok this is from Kyle, from a younger band in Boston called Actor/Observer, a really god post-hardcore band. “After 25 years, things in the Boston scene and the overall music business have radically transformed; what would you say is the most striking change and what has changed the least? Both locally here in Boston and in the business?”

OK… the biggest change is how people listen to music. And what has changed the least is that people still love live music. It’s a simple answer but I think that’s really it.

This one is from a dude I think you guys played with, Max, from the band Signals Midwest. “What was it like being in the studio together for the first time in a decade-ish, maybe more? Did you click back into it pretty seamlessly?”

We pretty much clicked back into it. We’ve been playing shows the past couple years, so we’ve warmed up a little bit. So it was pretty natural. 

He says “I was wondering if you could talk a little bit about how the band operates these days. As I get older I'm finding myself becoming more and more interested in the longevity of creative projects, especially bands like yours and mine who are separated geographically and who don't do music full-time. For us, the hardest thing isn't coming up with the ideas - it's just making space to be in the same room and get the chemistry going. How do you see this playing out as the band picks back up and re-enters your lives in a bit of a bigger way?”

This one might be hard to answer but… I think the newest thing that Piebald has done, and it shows our maturity because we were never able to do this before, is that all of us help out a little. We all have our tasks. I think that has been turning it around for us lately. We talk to each other regularly now. It’s a phone call every other week… Andy you gotta do this, Stuart rent the van, Luke you gotta do this… I think divvying up tasks and knowing everyone has a role has become an important and powerful thing for us because everybody feels like they have a place in the band. A purpose. Then the music is this other thing that we really get to enjoy. Nobody feels like Oh, I’m doing all the work. I gotta do all this crap and nobody is helping me, which I have felt before, but I don’t any more. I think it’s seriously helping a lot to, not only relieve me or somebody else who’s doing everything, but it also makes people feel like they have a part in this. 

It probably also helps being forty three or whatever as opposed to being twenty three. 

You’re right that helps too. When you’re all in a more mature state of being. Where we’re like -- well all the other guys in Piebald have kids. I’m the only one who doesn’t have a kid. That alone, that changes who you are! That makes you more mature. Even if I was a fucking little twenty five year old fuck up, I have a kid now, and I gotta pul it together. Not everybody does that, but a lot of people do. 

One more thing from him. He talks about touring pre-smart phone days. Do you remember the early days of that and the logistics of touring?

Oh yeah. Everybody had a physical map and you’d have the promoter’s  number. You’d get to the city, find a payphone, and call them to get directions the rest of the way.I also remember scheduling time to call my mom on a payphone too, which sometimes you didn’t find. You’d be like, alright mom, I’ll try to call you, when I think you’re home from church on Sunday, if we stop, and I find a payphone, so… If not I’ll leave a message whenever I can… That was very real. It also coincided with people recording to tape. Now you can record an album that sounds beautiful in your living room. Before you had to book a studio or know enough to make your own studio. Digital things have really made a change in culture and music and everything. 

It’s a lot easier in some ways but there’s also this pressure to always be… I follow a lot of younger bands on Twitter and it feels like they have to remind everyone they exist every day or else they’ll…  die. 

I think that’s a different thing. It’s less about music now and more about being seen. It’s not the bands’ fault. It’s how we take in data.. Everything, information. How we enjoy things. 

This one is from Brendan from a great Boston emo band called Save Ends I really love. “Travis is one of the few musicians to hide under a drum riser during a show. Can you describe the experience?”

Haha I’ve put myself in trash cans too I just go wherever I can. If I fits, I sits, as the cats say, right? 

What was that show?

I think it was the Fest in Florida. It was a secret show we played at the Wooly, and I saw I could just squeeze under the drum riser so I did. 

This is from Kinsey of the Baltimore-based band Us and Us Only. “Is it your official opinion that American Hearts should replace The Star Spangled Banner as our National Anthem?

Uh.. No but if he wants to try to push for that I would vote for it. I’ve never thought about that as a question.

They could play it at baseball games and stuff.

Yeah it’s a little less uplifting. It’s still pretty fun. Maybe they can play, like a b-side, like after. It’s still pretty fun. Maybe they can play, like a b-side, like after. 

Yeah at the 7th inning stretch they play America the Beautiful. They could replace that. 

There we go. Or create a new inning stretch. The 3rd inning stretch. 

So he wants to know if the “world is going to end soon? And if not, can you lie and just say that everything is all good?”

Everything is all good!

Just to be clear, you are lying. 

Yes I am! I think we’re in trouble. It may not be in my lifetime, but I think we’re kind of screwing ourselves here. Greed has conquered, and I’m not sure there’s a way back from it. I hope so, but I’m not sure. 

I don’t think so. Ok what else… In the history of the van, RIP, what was the most frequently played record? These guys also say they play a lot of Weird Al in their van. 

There’s probably a few. I remember listening to Queen’s Greatest Hits and Tom Petty’s Greatest Hits a lot. A lot. Jawbreaker Dear To You I remember all of us jamming that. 

That’s a great one. I actually saw them on their reunion…

I wish I could have seen them I have not been able to. I’m sure they will play again. No one ever thought that were going to play and they did so I’m sure they’ll keep doing it. I don’t know that they’ll come down to New Orleans though. 

It was like this really cliche thing. It was a few months ago. I was exhausted. I didn’t want to be out and I went to the gig. They were playing late. You know I’m pretty old now too and I was like I can’t be out this late. I was trying to sneak out and my friends were like Oh you’re going to come to the next Jawbreaker show?? And I was like fine. You’re right. I stayed and it was great. 

Sometimes you need to hear that from your friends, because you can’t see that. You’re like I’m just tired, or I just don’t want to be here. But you need somebody to be like Hey this isn’t going to happen for a while

Well I think that’s how I felt at the Royale a couple years ago when you guys played. 

We thought that too. We were like, ok, we don’t know when we’re doing this again. This is possibly a one and done. Then things kept rolling and we kept having little things happen. It won’t be the last time we’re playing in Boston for sure. Well, we’re playing in like two weeks… 

Ok these questions are from Pet Symmetry, a great band. 

Yeah I know Evan. 

Evan’s a big fan I’m told. And he’s all over the place, the new emo scene. 

Yeah he does lots of stuff. 

They ask “What exactly are we a part of?”

Well, to the man I was talking to, the inequality of humanity. I am a peg in… rich people’s machine, and he called me on it. 

It’s weird, that song, it’s like… triumphant and joyous in a way. But it’s also accusatory. This is me asking. 

Yes. It’s triumphant cause we hope for change. But it is accusatory because it’s like Hey we are fucking this up. We’re not even giving humans healthcare… and food! Maybe they’d be productive members of society if we took care of them a little bit. 

For sure. They also ask “How has your opinion of Holden Caulfield changed over the years?” 

I’d need to read the book again. It’s been a very long time. But he was kind of a prick. 

Yeah he seems like a prick in retrospect. 

And he hates everybody. I think it’s wild  because you’ve never read a book like that before, but looking back on it I think about him… there’s one time he thinks about shooting someone… There’s maybe better ways to deal with this bro… I’d need to read it again to give a full review. 

Seems like a prick. 

Yeah I’ll stand by that one. My statement. 

They talk about King of the Road. “If you were going to write the obituary for your old van in the Boston Globe what would the first line or two?”

Of Melvin? The first line… Thank you for allowing Piebald to go thousands of miles!

Ok one more from them. “Is it hard to write a Christmas song?” 

I think it’s easier than writing a Piebald song. With a Christmas song I feel like I was able to throw cares to the wind…With a Christmas song it was like, ok, it should be fun. It should be pretty happy. It should be sing-along-y. It doesn’t really have to do anything with Piebald. The freedom there we had I think helped me feel a little bit better. That’s what is partially scaring me, writing actual Piebald songs. 

If I’m anticipating your emotions here a little bit, it’s like, it provided you with a sort of cover. You might have felt anxiety about it being an official Piebald song. With a Christmas song it’s not really…

Yes. You nailed it. I can only speak for myself but it eased my mind about what Piebald is. I’m thinking about it as a holiday EP. We just tried to fit that theme and I didn’t have to worry about how Piebald it was. Was it enough Piebald? Too much Piebald? I didn’t have to think about that.

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