
“What do lips do Veronica?”
—Dr. Bostwick
“They bleed.”
—Veronica
I stare at Veronica’s full, healthy lips that she probably never even thinks about, as she comes at mine with gauze. She presses. I feel pressure, but no pain – not since they shot me full of Novocain – or whatever it is they shoot lips with.
“This biopsy is long overdue; now we’ll know exactly what’s causing your lips to swell, form these pustules, and peel. And, we’ll finally know how to treat them,” Dr. Bostwick says. He turns to Veronica as he exits, “Have Dr. Blahblahblah at UCLA analyze that.”
Veronica’s eyes go wide, “Wow, he’s having Dr. Blahblahblah do it – that’s big – he’s the chief resident – or whatever (I’m paraphrasing).”
I drive back to work on the freeway with a stitch in my swollen lips – wailing and sobbing and feeling horrible for myself. I cry the way a kid cries when it’s been a long day and life has stopped making sense – a tantrum. I throw a tantrum, while driving 75 miles an hour on the 10 freeway.
Back at work I sneak into the ladies room to clean up my weird rash-y, swollen face. I try to smile – I don’t mean like I try to buck myself up – I mean I physically try – it hurts. I sigh and head into the writers’ room.
I work on a sitcom about 40-year-olds who drink wine and are mean to each other. Our writers’ room, like most, is a place where everyone enjoys hitting each other in the dick with a dry-erase marker. I don’t have a dick – strike one. I have a weird, sad mystery illness – strike two. And, I’m horribly depressed about it – strike three.
“Great news, they did a biopsy, so I’ll finally know what it is,” I say, adding a winced half-smile. They act enthusiastic, but it’s been months of things only getting worse for me physically and emotionally, and they’re tired of me.
I don’t blame them. I’m fucking exhausted of me.
Months ago, back before my lips broke, I was really happy. I lived in a world of delusion where I was awesome, and things like lips didn’t break.
I was so convinced of my own awesomeness that I pushed away people who I thought were less awesome and weak — this Included my older brother Matthew, a ski bum who’s way into Buddhism.
Matthew would always try to bring us close by reading from his Zen phrases pocket book, “’The journey of a thousand miles must begin with a single step.’ Huh, what do you think that means?”
“I don’t know, man. But, if it’s a thousand miles, sounds like you should book a ticket on Southwest.”
I was a bitch. A really, really happy, bitch.
The biopsy results come back:
“Dr. Blahblahblah thanks Dr. Bostwick for sending him such an interesting case…” It actually says that on the biopsy report – what a dick. He goes on to describe the results of the “leg” biopsy – typo – he made a god damn typo – it’s my god damn lips you motherfucker. What follows is three paragraphs of medical jargon that boils down to, “I have no idea what this thing is, bra.”
Fuck all of you. Fuck everyone. Nobody knows fucking anything. What’s the fucking point? FUUUUUUUCK!
Right about now my therapist would interject with, “Kate, you’re depressed, you’re focusing on the negative. Is there any positive here?”
“My bloodwork says I don’t have lupus. They don’t think I have cancer, but they don’t know for sure - when I press them, they can’t guarantee it. No one knows. No one has any idea. I wish I at least had diabetes. Then I could say, ‘See I’m sick – I’m really sick.’ And, I could wear a colored ribbon, and run a marathon, and maybe even get goddamn, fucking treatment.”
It’s hard to focus on the positive.
In desperation I turn to the Internet. If the doctors can’t figure this out I’ll just figure it out myself.
I find out there are other people out there with a similar thing. They say it’s called Exfolative Chelitis, which means the lips continuously peel in a never-ending cycle. Doctors don’t really know what it is, and there is no known treatment for it. It’s really just a symptom of a larger issue in your body. It could be caused by a vitamin deficiency, or an allergy, or physical trauma, or just a plain old mysterious skin disorder.
One woman has had it for 10 years, others for 4 or 5.
One professor lady takes pride in her fragile body, “The most creative people have delicate constitutions. It’s a blessing to be so sensitive and aware – my lips are like the tips of a grasshopper’s antennae.”
Wow, she has taught herself to focus on the positive. Know what might be just a tad bit better? If our lips worked.
There’s a grandmother who writes that she’s just made Christmas dinner for her family, and then her tongue spilt in half. She asks if anyone else has experienced this. She’d like to be able to talk and eat with her family this Christmas, but instead she’s sitting in front of her computer typing this desperate plea. Jesus Christ… I rise out of my self-pity long enough to weep for her.
Then, I click on the next link. Must. Solve. Lips.
One guy says he tried coconut oil and that worked.
Another says she stopped using anything with Sodium Lauryl Sulfate - that worked.
Another stopped eating chicken and eggs - worked.
They appear in my mind like skydivers whose chutes have opened; they float up and away while I continue to plummet.
A friend tells me to go to UCLA. She says teaching hospitals are on the cutting edge of treatment, they’ll be able to help.
UCLA Dermatologist: This is Rosacea.
Me: What is Rosacea?
UCLA Dermatologist: It’s a chronic inflammatory skin disorder.
Me: It effects the lips?
UCLA Dermatologist: Not usually, but it could.
Me: Why would it effect my lips when it doesn’t usually effect lips?
UCLA Dermatologist: Rosacea is poorly understood.
Me: My nostril was also swollen for a while.
UCLA Dermatologist: Well, I don’t know what that is. But, try taking an 8 – 12 week course of antibiotics – that should clear it up.
Me: Is it bacterial?
UCLA Dermatologist: The antibiotics work as an anti-inflammatory.
Me: Really? Why? How?
UCLA Dermatologist: We don’t really know.
Me: Huh…
I fill the prescription, but having taken several long courses of antibiotics through out my life to treat acne, and because I keep getting yeast infections, I wait to take them. I want more opinions. There’s got to be another way.
Another friend gets me an appointment with a fancy Beverly Hills dermatologist. This guy is the best — this is the guy all the movie stars go to. Even though he’s expensive, I don’t care. It hurts to talk, laugh, and eat. I’ll do anything. Just fix me.
He enters with his cell phone ringing - turns it off annoyed.
Fancy Derm: Ugh, Obama again. He’ll have to wait, I have a famous TV writer to see. Cougar Town, huh? (he turns to his nurse) That’s with Courteney and Busy. Yes. So, what can I do for you?
Me: My lips.
Fancy Derm: (he looks at me, then to his nurse) Tell Kinoche to get in here.
The nurse rushes out and returns with a woman wearing a white turban and a magnifying glass headset - the kind jewelers or welders wear. She flips down the headset. Her pupils look like black marbles through the thick lenses.
Kinoche: This is yeast.
Me: I was told I have Rosacea.
Kinoche: Yes, it’s yeast.
Me: I thought it was skin inflammation.
Kinoche: Yes, but do you know much about Rosacea?
Me: I know that it’s poorly understood.
Kinoche: Exactly, this is yeast.
Me: Huh…
She turns out to be his in-house esthetician and Eastern medicine guru. She recommends a diet of mostly vegetables and lots of supplements.
I bring up antibiotics. She says, “Absolutely not – you have Candida.”
Candida. Candida albicus. Fungus. Yeast.
I remember in college hearing about a woman who could only drink buttermilk because she had a system wide yeast overgrowth. I remember thinking, “What a poor jacked-up slut. Ha ha.”
Now, Western doctors don’t think Candida overgrowth is a real thing – well, they do, but those patients are almost dead – like they’re dying of AIDS and they’re going to be buried by Friday, so all kinds of shit is growing in them anyways. But, as long as your immune system is mostly functioning, “real” doctors don’t think you can have an overgrowth.
On the other hand, Eastern doctors are all about Candida. It’s their answer to any symptom: itchy skin, bloating, gas, nerve damage, feet falling asleep, insomnia, sensitivity to fragrances… all of this could be caused by Candida, which, raises its own suspicions.
So, Western doctors say take antibiotics. Eastern doctors say don’t take antibiotics. I don’t know what to believe. I fall deeper down my rabbit hole of despair. Ha ha.
I call my mom. I need help. That’s new for me. Needing help. Saying I need help.
My parents and my brother Matthew fly out to be with me. Matthew gives me a book by a Buddhist nun, and a heart shaped crystal. He points out that the crystal has a little crack, and says, “I figure it’s okay, because we’re all flawed in someway.”
I carry the crystal in my pocket, and I pour over the pages of the book. It helps me feel less alone.
For months I eat vegetables, and take fistfuls of supplements hoping something will help. I don’t see much improvement…
Every once in awhile I hold the bottle of antibiotics in my hand and contemplate…
Then, a friend with lupus tells me she seeing an Ayurvedic healer who has helped her. She refers me.
I feel a little silly seeing a healer, but I’ll try anything. Just fix me.
Marcela is from Columbia - the country not the University. When we meet she puts her finger on my pulse and listens. She says I have too much heat in my head and stomach. She’s going to bring down the heat, when she does the yeast will come down too.
Even though this sounds crazy, it also makes sense. The West says the problem is inflammation – heat. The East says the problem is yeast, and yeast thrive in an inflamed environment. But how do you bring down the heat without antibiotics (which make the yeast worse)?
Marcela recommends 7 – 11 days of Panchakarma – a 5,000 year old treatment that cleanses not only the physical body, but the emotional one, as well.
I don’t know what to expect, but what I find is life-changing.
Every morning Marcela takes my pulse to see what’s happening in my body. She asks questions like, “What’s going on with your ears today?” I’ll say, “Um, they’re ringing, and the sound kinda goes out every once in awhile.” She stares at me a beat while feeling my pulse, then says, “We’ll work on it.”
Then she’ll ask something like, “There’s a lot of sadness today. Why are you sad?” You tell her why. She feels your pulse again, and tells you it’s going to be okay. You believe her, because the pulse tells her. You’re telling her. And she just knows.
Once she’s decided on the treatment for the day, she picks out the appropriate mantra on her iPod and presses play.
Then, she starts the massage.
She and one of her helpers rub both sides of your body with oil in a synchronized massage-dance.
This massage-dance does more than unlock your muscles. It unlocks everything inside you.
Day 1, I sobbed and snotted, and felt like I’d been tossed out of the ocean.
Day 3, Marcela grew frustrated with the tension she felt when she touched me and asked, “Kate, were you mean? Did you say mean things with your lips?”
“Yes,” I cried.
“I need you to say beautiful things. I need you to say ‘Love, love, love, yes, yes, yes.’”
By Day 4, I had forgiven everyone in my life who had ever hurt me. I’d forgiven myself for anything I’d done to hurt myself. And, I’d prayed that everyone I’d ever hurt would forgive me.
On Day 5, I found God. I’d conceptually understood all that stuff people say about us all being connected by a life force greater than ourselves, but it turns out it’s true. I’m being serious. Seriously, serious.
Suddenly, a little rash and lip peeling didn’t seem like the most important thing in the world.
I mean, I don’t have lupus. I don’t have cancer. I don’t even have diabetes.
I’m incredibly fortunate.
Maybe the solution to an unsolvable problem is to stop seeing it as a problem (learned that on Day 10).
I called my brother, “I love you Matthew. I love you so much.”
“I love you, too Katy.”
I can’t believe I ever thought I didn’t love him. I can’t believe I thought he was weak. Real strength comes from allowing yourself to be weak. And, my hatred of weakness in others was really just fear of my own (Day 7).
As Pema Chodron, the Buddhist nun my brother introduced me to, says, “Weakness allows us to soften our hearts to others, and the challenge is to keep our hearts soft as we get strong again (I’m paraphrasing again, but I’m pretty sure that’s close).”
I hope, with Marcela’s help, that I continue to get stronger, but that my heart grows softer and softer.
What do lips do?
Maybe sometimes they break so they can heal.
Love, love, love, yes, yes, yes.
Kate Purdy writes for TV. She’s written on Cold Case, Mad TV, and Cougar Town.
**Names in this essay were changed to protect people, but several folks have asked for information on Marcela. I asked, and she said it would be okay to tell you her name is Martha Soffer. You can find out more about her work at suryaspa.com.