Becoming “The face of Leishmaniasis”

Monsters Inside Me: How I became the face of leishmaniasis

On a grumpy day in May, 2011 Shalynn began clicking around on the Animal Planet website. A friend had told her that I should submit my story to the show “Monsters Inside Me.” I didn’t think it was that funny, having a tennis ball of oozing scab stuck to my face and a scrape down my throat caused by the monster inside me at the time. But Shay took the initiative and sent a testimony to the generic comments form on the Discovery website. I was sure that it would never find its intended destination in the endless fabric of the internet, and that that would be the end of that.

But we got an email back. We had a Skype interview with one of the producers, and soon enough they decided to come film our story! Suddenly in the bleakness of the indeterminable parasite we found something to look forward to. I immediately thought that the attention from being on national TV would help out all the non-profit organizations I made videos for, and I was determined to make the story stick to the fact that we were there doing amazing things, and not just about having a parasite.

They were really interested in the part of the story about getting engaged at Machu Picchu. In their eyes it became a romance that went wrong. A beautiful misfortune.

Two producers and two cameramen flew out from New York in August of 2011. We started out with reenactments of when I first noticed the parasite. I was in a jeep on a tour of the Salt Flats of Uyuni, so we piled into their rented SUV and they filmed me looking at the left side (unparasited) of my face in the side-view mirror with a parasite wound beginning to show up in red marker. Then they would flop the video in editing to make it look like my right cheek. We were lucky because the cloudy day matched perfectly with the clouds over Uyuni that fateful day, and I had on my same Tie-Dye shirt.

We went from there to the scene where I was bitten by the parasite. I was on the bank of the Heath river, which forms the border between Peru and Bolivia. For the reenactment, I swatted at imaginary sand flies at Zumwalt Park on Fern Ridge.

We drove from Bolivia to Corvallis to interview my doctor and to do the fake biopsy scenes. They had made me a corn starch wound to put over my bandage and as I lied down in a hospital gown to “receive” my drugs through my arm, under the hot lights of the shoot I closed my eyes as the producers said: “Put more ooze. I think more ooze. Alright add a bit more ooze…” as they applied my “makeup” for the scene. No egg salad ever had as much mayonnaise.

They wouldn’t let me wear any of my T-shirts that had the logos of the organizations we worked for in South America, so my wardrobe ended up being a mix of solid colors. In plain blue and pea soup green I received worried calls from my doctor, sighed heavily, and looked up at the sun through the window to question the Gods for my fate. I wore bright green going to my primary care physician who couldn’t figure out the parasite. Shay comforted me in many colors.

The “Monsters Inside Me” crew was great. They knew that I am trying to get into the documentary film industry, and were encouraging me to check out their gear, ask questions. We all got along really well and they were so gracious for us to share our story and our home with them. One of the cameramen filmed my solo-reenactment scenes just he and I, and we had a fun time getting into my role. It was almost like the Austin Powers director: “Ah yeah baby that’s great! Yes! More despair! This is the stuff!” Working off of his energy I really hammed it on. I am really looking forward to the scene in which I am grossed out at seeing the wound after partying all night at Carnaval. I stumble, pretending to be hung over, and really repulsed by the wound having opened up after too much immune system degradation (cheap Bolivian alcohol).

I learned a lot about interviewing people on camera from being interviewed. I sat down knee-to-knee with the producer for about two hours. This was probably the fourth time interviewing me and getting the whole story, but the first time on camera, and she wanted to get every detail again… but told in the way she wanted. When asking me about how gross it got, she contorted her face and emphasized strong adjectives – sticky, oozing, festering. Then she’d bring it down, somberly, fearfully asking me what the worst part was:

Me – “We went on this trip as a volunteer, and I filmed our projects and our adventures because my dream is to someday host a show about volunteer travel. So when my face was so bad, and I looked at myself in the mirror at the horrible infection, wondering what I would look like, I worried that my dreams would die along with my cheek if I became too disfigured to host a TV show.”

“Did you think… were you afraid you were going to die?”

“Oh no. I mean, it got bad, but once we knew what it was and had a plan for treatment I knew it was never going to get that bad.” (Was “I was afraid my dreams would die” not enough drama for you?)

“But you could have died…”

“Yeah… if I didn’t get treatment for like two years.”

“So – were you afraid you were going to… die?” 

“Yes. I was afraid I was going to die. Next question.”

The most fun part was recording a couple party scenes with our friends. We all dressed up in our clothes from South America and decorated my mom’s house like it was Bolivia. It was at the end of the shoot, and having my friends get up in my face and point out how gross the wound was, joking around about Bolivian parties, and playing bad pan flute music was a ridiculous way to celebrate the parasite. I’m sure in the show the scene will be presented as an embarrassing flashback, set to tense music, but to me it sums up my perception of the parasite.

As you watch my dramatic episode please think about who I am. I am not a dramatic person at all. I was joking about this whole parasite experience – “who gets a flesh-eating parasite?!” My approach to Monsters Inside Me has been casual. I’m not ashamed about having gone through this experience, I don’t want pity from people seeing how bad it was. I just thought, well I have to go through this experience anyway, might as well share the interesting story. So as I watch the chiaroscuro lighting, the tense music, the douchey “biologist” talking about leishmaniasis, and watch as our romantic story about a wonderful trip gets molded into a grotesque, near-fatal medical mystery, I will be laughing at the ridiculousness of participating in the dramatic time-eater that sells pet food and constipation treatment today that passes as Animal Planet. Have fun with it! Laugh jeer, and soak up the comedy!

8 Replies to “Becoming “The face of Leishmaniasis””

  1. Hi! I just watched you on Monsters Inside Me and then I was wondering how long it took your face to heal completely. I googled the parasite and was surprised to see your website. I just wanted to wish you well. Are you finally married? Good luck with everything! Stacey

    1. Hi Stacey! Thanks for following up! The Monsters Inside Me crew filmed in August of 2011 and my face finally healed in April of 2013. I actually had to do another two rounds of treatment after the filming, and went to the jungles of Costa Rica and West Africa with the wound still healing for more volunteer film work. Shalynn and I got married in August 2012 and then moved out to Washington, D.C. where she is studying conservation biology and I’m working for National Geographic and also as an on-camera reporter! Which is pretty cool considering if you Google “A parasite ate my face” I come up!

  2. I’m in the same boat you were but luckily with the lesion on my hand. I’m in the CDC stage, waiting for species identification. I hope I can take the less toxic miltefosine, an orally administered drug recently approved by FDA.

    Hope you are fully recovered by now and back out happily in the field!

    1. Hi Tony! Good luck! I hope miltefosine works well. I believe it arose in curing visceral leishmaniasis in India but supposedly it is a much safer and more effective method of treatment. I have returned to the jungle a couple times – hope you get back too!

  3. Hi, Adam. I tried to leave a message some weeks ago but I am not sure I succeeded as I was having some browser issues thanks to a virus.

    Anyway, I am waiting for a definitive diagnosis from the CDC myself.

    I’m interested to hear about your treatments. You said you had little luck with pentostam and were treated twice with ambisome.

    I am curious as to how pentostam didn’t work. Did you not respond to it or was the drug just too toxic?

    Also, why were you treated twice with the ambisome? Was your bug especially hardy? I hear the South American variety can be difficult to treat.

    Did the CDC do the PCR test for you? I have been waiting over 2 weeks but I had heard that the PCR takes only 3 days at most. But I am not sure they relay the results separately. They might wait the full four weeks and report everything at once.

    I’d be interested to hear any thoughts you have.

    Thanks.

    Amanda

    1. Hi Amanda,
      Sorry to hear about your guest. Where’d you get yours? They CDC did the testing – it took them about 3 weeks. Even though the test only takes a few days, they are often back-logged for other reasons. Ebola’s probably keeping them busy. I had to quit the Pentostam early because it was too toxic for my kidneys, even 8 months after the first Ambisome and fully healing. I did a third round of treatment (2nd Ambisome) because the wound still hadn’t healed. In retrospect, I think I prolonged the infection with poor wound care. I was super stingy/not wanting to be wasteful and would cut sterile pads to use the unneeded parts the next day and might have allowed a superficial infection that prevented the wound from healing even while the parasite was gone. Don’t worry about that yet. Just start preserving your kidneys for the treatments, and best of luck!

    1. Hi Charlotte, I went through three parasite treatments with an intravenous PICC line inserted into my heart to disperse the medicine.

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