Penny Lane’s new found-footage film THE PAIN OF OTHERS is an expository narrative of the creepy-crawly symptoms claimed by sufferers of Morgellons disease. People with Morgellons attest to subcutaneous crawling sensations, and to open sores or lesions that sprout fibers. Lane’s film is at once intimate and public, nearly entirely comprised of YouTube vlog entries by three of the thousands of people who claim Morgellons disease, sharing with their followers their experience of the disease and at times offering advice.
Morgellons has not yet been thoroughly studied by the scientific and medical establishment, and recourse includes cognitive behavioral therapy to treat what some believe is a delusional disease. Lane’s film is in no way a definitive look at the disease; she is not seeking to prove a thesis about its existence. Rather, she poses the question, “what kind of belief is necessary to feel compassion?” Said another way, by Leslie Jamison in a 2013 Harper’s piece about Morgellons, “inhabiting their perspective only makes me want to protect myself from what they have. I wonder if these are the only options available to my crippled organs of compassion: I’m either full of disbelief or I’m washing my hands in the bathroom.”
THE PAIN OF OTHERS made its world premire at the International Film Festival Rotterdam, and its New York premiere on June 28 as part of BAMcinemaFest 2018. Science & Film spoke in person with Lane afterwards, on July 3, in Brooklyn. We first spoke with Lane prior to the 2016 Sundance premiere of her feature documentary NUTS!, about the charlatan scientist John Brinkley who marketed a goat-testicle cure for impotence in the 1920s. Richard Linklater is producing a feature film about story, with Robert Downey Jr. cast as Brinkley.
Science & Film: So you know about Sexually Transmitted Diseases? Well, after seeing your film I started thinking about whether there should be such a thing as Internet Transmitted Diseases.
Penny Lane: The STD example is a good one, in a funny way. How do you get an STD? You get it through sexual contact. We should talk about whether Morgellons is a real disease, and let’s talk about that later. Morgellons as it exists in my film, which is accurately representing the way it exists on the Internet, is as an empty category into which all kinds of other stuff goes. People get it by hearing about it; it’s not just social media, it could be your local news station, or watching my film. Honestly, Sonia, I didn’t really think about that. But you were there at the end of the screening [at BAM]: a lot of people started to get itchy, I had a friend who the next day had a rash and she freaked out. So even the film is doing the thing.
S&F: What was it like for you making this film? Did you start to feel the thing?
PL: This particular illness has so much specificity around the grossness, and there’s a kind of attraction repulsion because people do like to pick at their skin, some people like to pop zits, really gross stuff that is also weirdly attractive to some people. I, full disclosure, do not have whatever it is so I can’t even speak to it. I don’t have the hypochondriac thing. People will say, you know how when you go on the Internet because you feel sick and then think you have every disease? And I’m like, no. Actually no.
S&F: You didn’t have a WebMD phase?
PL: I always look. I had a thing recently and I looked on the Internet. But I was like, well it seems unlikely that I have every disease. But that’s a thing I understand but don’t possess. I probably couldn’t have made this film if I possessed it. Even more specifically, I don’t feel itchy when I hear about Morgellons. I’ve never once had the experience of becoming conscious of whether I feel something crawling under my skin. However, many, many people do. It’s very real.
S&F: So did it surprise you when people started having that experience while watching your film?
PL: That’s the only thing I feel like I can say that I’m very surprised by. The idea that I might be transmitting Morgellons kind of didn’t cross my mind. I think there are many people who couldn’t have made this film because they would have thought they were insane and had Morgellons immediately.
S&F: Me being one of them.
PL: I think most people, it turns out! I just was unaware of how sticky it is.
S&F: Given that, to what extent did you believe the YouTubers as you were making this film?
PL: It seems clear that you don’t need to scratch very deep to find what seems to be pretty clear evidence of delusional thinking, certainly irrational thinking. There is a lot of violating of Occam’s Razor in this film. There is a whole scene where Tasha [one of the three women whose YouTube series Lane culls from] is describing these weird silvery white hairs at her temple; it’s my favorite part of the movie because I’m like, you know that people get gray hair, you live in the world, but she completely sincerely believes the obvious explanation is not that she’s getting gray hair, but that Morgellons has taken over the hair shaft and is kicking out her real hair and replacing it with its own thing.
S&F: She is a really interesting character to bring up because she says as much in the film!
PL: I know! She says, “looks like hair. Close up camera, kinda still just looks like hair.” So when you see that kind of thing play out over and over, it doesn’t feel like I’m making some kind of unfair leap to say that there is a lot of clear evidence certainly of irrational thinking, a comfort with believing clearly pseudoscientific claims that are easily disproven. Do I know what’s in their skin? No. At the start of making the film, I expected that there would be more physical evidence on the YouTube channels. It just wasn’t what was there. It was much more, let me share my experience with you.
S&F: Why did you decide to include footage from news sources?
PL: The choice to use them was basically twofold. The first version of the film didn’t have them and the feeling I wanted to create of this claustrophobic, alone in a room thing, was overwhelming. So having little breaks where you can be like, there’s a world, there are other people in it, was helpful for the experience of the film. Also, there are three or four moments where [the news footage] is in the film, and the clips get more convincing each time. That was on purpose. I was trying to structure the journey of the characters a bit as a descent into madness. You could read it two ways. I gave each of them a happy ending, on their own terms. But the way most people experience it, once we get into pee drinking and the toenail clipping magnet machine then most people feel like we’ve entered into a kind of rabbit hole of craziness. But the news clips progress the other way. That’s meant to continue the unease because even as you’re maybe more convinced that what you’re seeing is maybe not people getting closer to the truth but maybe people getting further away from the truth, the news media stories get more convincing.
It was very important to me that the film would not read to anyone as any kind of definitive statement on the realness of the disease. It had to be unsettling and then unsettled. So I wanted those two different registers to push against each other. Hilariously, Inside Edition is the last news clip and is the most compelling: it has the best footage of the fibers, it’s got images from the Morgellons conference where people all come together and you can see it’s not just two people on the Internet and that it is a phenomenon and people are struggling and trying to help each other and seemingly finding real physical evidence. It’s different than what I see on YouTube. That doesn’t mean YouTube is right, that’s for sure.
S&F: Did you ever think of shooting this film rather than using YouTube footage?
PL: Of course, the thought was entertained. I couldn’t have done it.
There is a feeling that many people have when they watch the film, which is that the film is ethically transgressive. Most of that I think is misplaced. I think people are uncomfortable and feel bad about that, so are looking for an explanation for that discomfort. They don’t want it to be, I’m laughing at crazy people, or I don’t know how to feel empathy for someone I think is crazy. So they instead say, well, you are an unethical person for making me feel all these ways. I think that’s not an accurate problem to have with the film. Part of the issue is that people also feel like it was wrong to look at [the footage]. Like you, filmmaker, have made me look at this and it was wrong to look at this because it feels private, it feels too intimate. All I can say is, I didn’t make these images. If I had made the images, then I would feel a different kind of ethical burden. Are these images that should exist, would be a question that I would have to ask. I can say, this exists and I’m showing it to you, and that felt very different. So that’s why I couldn’t have gone out and then met people, and connected with them, and created the images, and then had to feel all the different feelings that you have when you’re a documentarian and you’re putting something on film that didn’t use to be on film. I couldn’t have done it.
The more prosaic reason is, I’m not sure how I could have done those interviews. Am I supposed to interject and say, it seems like maybe you have gray hair? As an interlocutor the goal would be so different.
Someone brought up the idea to me when they saw this film about the difference between interviews and testimony and I think actually that’s relevant. I was looking at testimony, I wasn’t conducting interviews.
S&F: THE PAIN OF OTHERS is also similar in form to your other films, like NUTS! And OUR NIXON, where you’re working with archival material.
PL: That’s the other reason: this is what I do! I just feel comfortable doing this and I enjoy it and I don’t have to leave my house and that makes me happy. [laughs]
S&F: Do you think there is something different about seeing this footage in a movie theater rather than on YouTube?
PL: It doesn’t feel like it’s some obviously different audience to me. [The videos] are public on YouTube. You are part of the public therefore you are part of the audience. Older people, I guess generationally, do not get that these are public videos. So many older people have been outraged at me for using these videos and I don’t know how to explain any other way than to say, you don’t know what YouTube is. This was meant to be looked at. This isn’t a private thing. They’re begging you to share and like [their videos].
S&F: I liked what you said during the Q&A at BAM, something along the lines of questioning what belief is necessary in order to feel empathy. Can you say any more about that?
PL: This is maybe a weird parallel, but it’s what comes to mind. I have had friends very upset, crying upset, about experiences that they’ve had that they attribute to a certain cause that I think is the wrong cause. You sit there, and you have all the empathy you have for your friend, but it is in fact tempered in some weird way and I don’t even know, no one knows what to say about that, including me. I’m not any closer to it [after making this film]. There is no question that people [with Morgellons] are suffering. You don’t not believe them. I’m watching this season of PROJECT RUNWAY and there is a pair of twins who are so reality-TV ready—they’re performing themselves in such an elaborate way. I don’t feel any of that with these people. Of course they’re performing, the same way we all are, but they’re so sincere, so I don’t get the feeling that they’re doing anything other than being completely honest about what they’re thinking and feeling.
S&F: And they’re desperate.
PL: Yes. That desperation for answers is pretty heavy. I can only imagine what it would be like to have an unexplained ailment that is serious and ongoing and to have no one able to tell you what it is.
S&F: In the film, Tasha calls Morgellons an invisible illness, like Lyme. I don’t know if you saw the documentary UNREST about chronic fatigue, which might also be described as an invisible illness not well understood by the medical or scientific communities.
PL: Yeah, yeah. I think that would be very insulting to Jennifer Brea [director, writer, and star of UNREST] if anyone said her film had anything to do with my film, but there are some relationships.
S&F: I won’t try to say that, but I will say that the experience of watching her document her own illness, because nobody was taking her seriously in the scientific establishment, I understood why film was the most effective way for her to tell that story, which maybe is similar to the people with Morgellons making videos on YouTube.
PL: The part of Jennifer’s film that is most related in my opinion is the part where she starts taking every supplement under the sun and she knows most of them probably aren’t going to work but doesn’t know what else to do. There’s a scene where she’s got that huge pile of, all the crap I’ve bought on the Internet that supposedly might help me. That’s the part that feels related, when you’re desperate and you don’t know what else to do.
S&F: THE PAIN OF OTHERS as well as your last film, NUTS!, both deal with the medical and scientific research establishment with a degree of skepticism. Was one a direct line to the other?
PL: Yes. Because when you’re making NUTS!, at a certain point you have to confront the question of what it means to ask, did it work? Which everyone asks. Any time I would tell someone that I was making a movie about a guy who claimed to cure impotence with goat testicles, pause, two beats, and then they’re like, did it work? Every time I’d be shocked because I’m like, no! Of course it didn’t! But everyone asks that question and I had to realize that the answer is more complicated than just saying no, because of course it worked. For many people, it probably worked to the extent that impotence is one of many things in your body that can be affected by your mental state. There is no doubt that someone paid the equivalent of $10,000, which is like a Brazilian butt lift today, and then maybe felt better and Brinkley probably gave them a great experience. It was in my mind but it wasn’t in the movie, so when I found out about Morgellons I was already ready to like take that on in a different way.
From NUTS!, I learned that if the medical establishment cannot help with a problem, how quickly that void gets filled with pseudoscience and conspiracy theorists and conmen—people with bad faith intentions—all go in that fast. So the Brinkley of now is peddling something that they’ll call gene targeted therapy and it won’t be, it’s just whatever, but that’s something that we’ve heard of in The New York Times and we heard that was the future. With Brinkley, it was hormones in the 1920s. The person who discovered insulin had just won the Nobel Prize and we were just starting to understand what hormones were and how they affect us. So for Brinkley to say, I’ve got something related to that, was right on message. There’s a whole history that I didn’t put in NUTS! about all the real science that failed that had to do with similar stuff. But of course, real scientists publish their results—we hope—and then add to the knowledge that their experiment didn’t work. But the quack person just takes it and sells it right away.
I knew from the very beginning of looking into Morgellons that I probably was not going to resolve the question of if it’s real. So then I was going to have to deal with what it means to ask that question, and that’s what I wanted to do.
PL: Because I felt uneasy. I’ve always been a skeptic. Then you start looking at the way illness works and there is no way you can just keep that armor up all the time.
Someone said to me once that if you need any evidence that your psychological state has an immediate impact on your physical state, think about what happens when you get sad and this water comes pouring out of your eyes. Like, do you really need me to tell you that the things you think have an impact on your body? And I was like, that’s a really good point. [laughs]
I wanted to chip away at my own certainty and my own ability to say, it’s not real because doctors say it’s not real. It’s really hard to walk that line without instantly falling straight into the pit of pseudoscience. I think it’s possible and really necessary to try to do it. You know? It seems really hard. I don’t know many people that are doing it.
S&F: That are doing what exactly?
PL: That are trying to explore boundaries to understand what most scientists will acknowledge, that we don’t know much, and to say that without saying, well then who cares about science? That’s what I’m getting at. That’s why the film ends with this little gesture of, “if you think you have Morgellons, please seek information from evidence-based sources such as the Mayo Clinic.” That is my way of putting one little card on the table, saying, just because this is confusing doesn’t mean you should consult YouTube for your medical advice.
S&F: Are you interested in continuing in this vein of work in the future?
PL: I got as far as understanding the question is it real is not the right question, so that was good, that took me a while. I finally realized the question is it a disease with a physiological etiology is a very different question than is it real. About Morgellons, I will say what I said at the Q&A which is that there are people trying to study this in a real scientific way and are publishing peer reviewed research. Sonia, I don’t have the ability to gauge the quality of this research. It is in fact peer reviewed. I know that it doesn’t seem crazy to me, and I have seen enough just from anecdotal looking at material that there are some people that seem to have these things in their skin, and you don’t have to believe they’re bioterror or from chemtrails. It is possible they will figure out what Morgellons is and the entire discussion will be proven wrong. Because at this point, as I was saying, this default skeptic response is: that’s not real these people are nuts. I haven’t put the resources intellectually or time-wise to understand the status of the peer reviewed science but it exists and in this case it wasn’t my role because there is someone else making a normal documentary about Morgellons and I was like good, he can handle that. On the one hand there’s this weird thing that we don’t understand but has real physical evidence associated with it, and on the other there is a large number of people who are maybe delusional or who have other problems who associate themselves with the disease. I think it would be great if it turned out that the mainstream skeptic response is wrong, because I think it would be cool if we, society, could learn that you could hold those two things together.
S&F: Is one of your goals for this film for it to be useful for people with Morgellons?
PL: No. I don’t think it could be. I don’t think anyone with Morgellons would look at this film and get anything from it that would be helpful to them. I mean, it’s called THE PAIN OF OTHERS so what does that tell you about the intended audience? When it really comes down to it, there’s a kind of assumption I’m making about who is watching.
S&F: Right. You weren’t making this film as a journalist; you were making it as an artist.
PL: With verbal or with written language, you can tell the truth or you can tell a lie. A lie is a whole other set of things—maybe you don’t know what the truth is, maybe you’re trying to tell the truth and you’re wrong, I get that, but in essence I can say I have brown eyes and that’s a lie, or I can say I have blue eyes and that is true. With images, no such thing exists. I can take a selfie and I can change the color of my eyes to brown, and that’s not a lie, that is something else. So then you’ve got movies, documentaries especially, where you’ve got pictures and words and in one register it is possible to lie and in another, you’re just making art. I learned this with OUR NIXON, which is all archival footage; I did a lot of juxtapositions that were not true. I kind of made it seem like this event happened and then this event happened, but I didn’t put on the screen with text, later that day, because that would make it a lie. So with THE PAIN OF OTHERS, the lack of commentary is really intentional because I don’t want to be wrong and I don’t want to lie. So if I say, look at these delusional people, Morgellons is clearly a psychological phenomenon, that could be true or false or wrong or right, I’m just trying to stay out of it. So I feel like that’s part of what’s confusing people about documentary is that there are two different things going on. I’ve been thinking about this for a long time because I’ve been trying to figure out this thing about what is true and what is a lie in film. I realized at some point that it was almost the wrong question.
THE PAIN OF OTHERS is available to watch on Fandor. Penny Lane’s other films include NUTS!, for which she won Sundance’s Special Jury Award for Editing, and OUR NIXON, which was selected as the Closing Night Film at New Directors/New Films. She is a member of the Documentary branch of the Academy of Motion Picture Arts and Sciences.