by Ben Sachs
This month Cunningham takes on the role of film programmer. On Saturday at 7 PM at the Nightingale, he'll present a rare underground film called The Age of Insects (shot in New York on a variety of video formats throughout the 1980s), and on Sunday, December 16, at 7:30 PM he'll present a documentary about Lyme disease (Under Our Skin, from 2008) at the Siskel. Cunningham himself has been afflicted with that condition for more than a decade; these two screenings are to raise money for his medical treatment. I spoke with him the other day about living with Lyme disease and how he discovered The Age of Insects.
Ben Sachs: How's it going?
Nate Cunningham: Pretty good. I just got off the phone with some Lyme people.
Who are the Lyme people?
The patient advocacy organizations [I'm in touch with]. Lyme disease is in an odd spot politically because a lot of state tourist boards don't want it publicized; they don't want people to be discouraged from camping or doing other outdoorsy things. And insurance companies aren't crazy about paying for the expensive treatments necessary to fight chronic forms of the disease. There's a lot of subterfuge in diagnosis of Lyme, so these advocacy groups have come together to fight against that.
How successful have they been?
I would say they've created a slow tide that's going in the right direction. As an example, if you looked up Lyme disease on Wikipedia maybe five or six years ago, you'd read that "some people claim" there are chronic forms of the disease, but it hasn't been proven. Nowadays, if you go to the Wikipedia page, you'll read that there are chronic forms and they're debilitating. Public awareness seems to be shifting. More people know that Lyme can be a deep problem if you don't catch the disease right away.
You've had Lyme disease for how long now?
I was diagnosed at the end of 2003, but I'm pretty sure I've had it since 2001. A lot of people who get it, they aren't aware that they've been bitten by a tick. In my case, I had all the symptoms, but I ignored them because I was young and healthy.
I was about 20 years old. . . . I was backpacking in eastern Europe, and I had a climbing accident. I hurt my leg really badly. And while I was recuperating from that, I found a tick in my bed and a little bite on the back of my neck—then I got a crazy fever. Someone even noticed a rash on the back of my neck. I ignored all of these things, because after the fever goes away, you don't really feel bad for a while. It takes a month—or, in my case, over a year—before the symptoms start to get bad.
This happens to a lot of people, where they're not sure that they're sick until after a year or two, when they start noticing more things going wrong with their bodies. But if you don't get the antibiotics in you right away, then the disease has a chance to spread to your tissues and it becomes difficult to eradicate.
What are some of the things that go wrong with your body? I haven't read that much about the disease.
It has the potential to affect any system in your body. Mainly the effects are neurological, which can affect almost any function. The most common symptoms are fatigue and chronic pain—nerve pain and often joint pain as well. They call it "Lyme arthritis" because your joints swell up and hurt. Your muscles become easily fatigued . . . in my case, I've had a headache since one day in 2002; it hasn't left since then.
I've also had a lot of gastrointestinal difficulties—that seems to be more common with people who catch it in Europe. I've had to severely limit my diet because I've developed something called gastroparesis. My body can't really process fat or fiber, which makes it hard to find proper nutrition.
Nearly everyone with chronic Lyme disease agree that they find it hard to multitask. It's hard to do multiple things at once because you always feel overloaded and exhausted.
Tell me a bit about this new treatment you're undergoing. That's what the screenings are raising money for, right?
Yeah. It was developed by a fertility specialist in New Delhi—it involves embryonic stem cells that were originally donated by one of her fertility patients. These cells are able to differentiate into any cell type once they're in your body—that's what stem cells do. They think that they're part of a developing embryo, so they go where they're needed in your body and form nerve cells, muscles cells, any kind that's required.
The fertility specialist has had success treating people with spinal-cord injury and things like that because she's been able to literally regenerate the damaged cells. She's also had success with patients with neurological damage for the same reason. For someone in my case, that damage is rampant.
The treatment's still extremely controversial. [The doctor's] going for an international patent instead of publishing. She'd like to create a product that can be distributed around the world, something that anyone could get at a pharmacy. This inspired criticism at some stem-cell conferences, but the physicians who have gone to her clinic to check it out, they've been impressed by it.
So I'm excited to go, because I've tried everything else and nothing's really worked. When you have Lyme, you end up trying all sorts of things. If you go onto Lyme message boards, you'll see people talking about all sorts of out-there stuff. I think the weirdest things I ever tried were hyperbaric oxygen therapy—which is where you sit in a chamber that hypersaturates your body with oxygen—and induced-fever therapy, where you sit in a hot tub for a long time to try to raise your body temperature to a level that's uncomfortable to the bacteria. But this new technology sounds more encouraging.
And you can only get access to it at this clinic in India?
There aren't as many regulations over there. In the States, the only comparable work is being done on animals; it'll be at least another several years before we'll see anything like this here. And when you're very ill, you don't necessarily have time to wait.
You're showing The Age of Insects to raise money to go to India. What is this movie?
It's from what they called the "video club" scene in the 80s. There were these small-budget movies that were made to be distributed via video tapes in the mail. It was a club you signed up for; you got a weird tape in the mail every three months or so. Age of Insects was part of that. It was never given a proper release. It screened a few times in New York, but that's all. This will be the first time it's ever played in Chicago.
It was made by a guy named Eric Marciano. He filmed it throughout most of the 80s in the East Village, so there's a definite no-wave element going on. It's inspired by exploitation films and sci-fi, and it's shot on a bunch of different early video formats—I've been promised a skid-row David Cronenberg vibe.
Have you seen it?
No, I've never seen it either. I've only gotten to hear about it. But everything you can read about it on the Internet makes it sound very intriguing. I've wanted to see it for years, and this [fund-raising effort] seemed like a good excuse to contact [Marciano] and get the movie. And now a bunch of people will get to see it.
Do you know what the plot of the movie is? Does it even have a plot, or is it just some surrealistic freak-out?
No, it has a plot. The protagonist is a juvenile delinquent, and his rich parents decide that the only way he'll shape up is putting him in the hands of this mad scientist who runs a therapy called "orthopodization." I believe he uses insects and hallucinatory drugs to change the kid's consciousness and/or body to resemble that of an insect.
When I talked with the filmmaker and told him what it was for, he said he hoped the movie wouldn't parallel what I'm about to undergo.