When Erin Barker is diagnosed with two chronic illnesses, she has to say goodbye to four of her favorite things.
You can find the original version of Erin’s story here.
Erin Barker is the artistic director of Story Collider and cohost of its weekly podcast. As a storyteller, she is the first woman to win The Moth's GrandSLAM storytelling competition twice. She has appeared on PRX's The Moth Radio Hour, and one of her stories was included in The New York Times-bestselling book The Moth: 50 True Stories. Erin has lived with interstitial cystitis and vulvodynia for more than ten years. Read more about her thoughts on storytelling about chronic illness here. Follow her on Twitter @ErinHBarker.
This story originally aired on September 24, 2019 in an episode titled “Before and After: Stories that evolve over time.”
Story Transcript
When I was in my early 20s, I was diagnosed with two very painful conditions: interstitial cystitis and vulvodynia, that affect this area, the lady parts I think is the scientific term.
So my doctor brought me into his office and he told me that because the medication that treats these conditions takes so long to work, usually years, sometimes never, that I was going to have to go a very long time, possibly forever, without four very important things. Those four things, tragically, are:
Alcohol. That’s one.
Caffeine. That one hurts.
Pants. That’s a weird one.
And the fourth one — this is the really big one, everybody — sex.
To which I of course responded, “Oh, just those four things? Just the four things that make life vaguely livable? Cool.” So I was really upset about this.
I’m leaving his office with this prescription for this medication that may or may not work and he slips me these two business cards. One of them is for a vaginal physical therapist, which is too weird for me to even think about in that moment, and the second one is for a vaginal surgeon which is, like, a nightmare to me, the idea of having surgery there.
I just leave his office feeling so overwhelmed and upset and, honestly, frustrated. Like, what is the deal, medical science? We can put a man on the moon but we haven't uncovered the mysteries of the human vagina yet? Let’s start here on the ground.
So I did what every New Yorker has done at some point: I cry on the subway all the way home in public. And it’s New York so no one talks to me. And I’m really devastated because, if I’m honest, I really don't think that my boyfriend of three years, Justin, is going to stick around for all of this. He's really supportive but who really wants to sign up for an indefinitely sexless relationship? Not a lot of people.
Even really good people. Even people who have seen every Jason Statham movie ever made with you or bake you a Funfetti cake every year for your birthday, or clean you up after you shit your pants and barfed over a Kroger’s grocery store. All of which may or may not be things that Justin had done for me over the course of our relationship.
And it felt like every time I turned on the TV or I opened up a magazine, I was just bombarded by messages that if your relationship doesn’t have sex, it’s not good. It’s not real. It’s not healthy. And I couldn’t help but think, Is Justin thinking the same things?
My doctor would always try to cheer me up after all of our appointments by giving me some encouraging advice, but it always just ended up depressing me more. There's really nothing like having a 60-year-old gynecologist remind you that heavy petting and oral sex play can be just as enjoyable as vaginal penetration. Thank you so much, doc. Also, no. No.
Even aside from that, I felt like I was losing part of my identity because I am a blue-jeans-and-beer type of girl. I’m not a skirts-and-chamomile-tea type of girl.
I tried really hard to hold onto my old habits for as long as I could. When we went out, I would still order a beer. I would just spit it back into the bottle instead of swallowing it, which it turns out is kind of a turn-off for some people. Who knew?
And I kept wearing pants to work but when it got too painful I would undo them under my desk. As long as I remembered, everything was fine. Except of course, inevitably, one day I did not and I ended up in the hallway face to face with my boss’s boss with my pants hanging wide open. My favorite part of that incident is that I never explained myself. I just let that one lie.
There were times when I felt like maybe I should explain to my co-workers what was going on with me, but I just couldn’t picture myself going through that explanation. Like, “You see, Carl, my bladder doesn’t produce lining on its own anymore and the inflammation irritates my vagina.” It just doesn’t feel like a professional conversation.
After this, though, after the pants incident, I decided maybe try dresses. Maybe it’s for the best. So I went to work one day in a dress that my mom bought for me, one of two dresses probably that I owned at the time, and I just felt really uncomfortable all day. I couldn’t be myself, like I was pretending to be somebody that I wasn’t. And I left work at the end of the day just feeling so bummed out, like I was doomed to be this lady that I wasn’t, forever.
I’m walking to the subway and I walk by this guy and he goes, “Hey, where are you going?”
I’m in such a bad mood from this day that in this moment when I would normally just keep walking or laugh, I glare at him and I go, “Fuck you,” and I storm off.
But then he comes after me and I’m like, Oh, God. What’s happening? I thought I had brought closure to this exchange.
But he stops me and he goes, “Erin, it’s Dan from class. I didn’t mean to freak you out.”
It was my friend Dan. He had gotten a haircut and I didn’t recognize him. I thought he was saying, “Hey, where are you going,” but he's actually just saying, “Hey, where are you going?”
At this point, it became clear that I was on a downward mental spiral. I was hallucinating street harassment, which was a serious problem, so I decided it was time to start telling people about my condition and what I was going through.
They were surprisingly supportive. My boss even let me start working from home part time, which was really helpful. And I took out one of those business cards that the doctor had given me. I still wasn’t ready to think about vaginal surgery, but I started doing vaginal physical therapy.
It was just as weird as I thought it was going to be. You should try it sometime — having a casual chat about the latest Matt Damon movie with someone whose entire hand is inside your vagina. I can’t say I recommend it.
But I certainly made a lot of progress. Between that and the medication, I started being able to have a cup of coffee every now and then or glass of wine. I started being able to wear pants. Do I amaze you?
But at a certain point, I hit a plateau and I stopped making any more progress. At this point it had been two years and I still hadn’t gotten to that fourth thing. Sex still was not a possibility.
So I broke down and I told Justin, “I understand if you want out. You deserve to be with a normal person. You're in your 20s.”
And he looked at me and he said, “Erin, I love you. We've been together for years. Do you really think that I’m going to leave now just because things aren’t easy?”
For the first time in two years, I realized how lucky I actually was.
But if I’m really honest, there was a part of me that didn’t believe him, that thought, eventually, he would get sick of it, especially when two years turned into three years, turned into four years.
Until one day in 2013, in front of all of our friends and family, when he got down on one knee and proposed to me. I thought, Wow. How real must this be if despite everything he is willing to commit to me for the rest of his life?
So I decided to match his sacrifice with a sacrifice of my own. I took out that card for the vaginal surgeon and I made an appointment. I went in and I filled out the intake form. They had that section where you had to rank your pain on a scale from one to ten, and I circled all tens because I wanted them to know I was serious.
He examined me and he told me that I was not a candidate for vaginal surgery. My heart sank because this was the very last thing that I could think of to do. There was nothing else.
But then he told me that I was a candidate for a new experimental procedure and that is how I ended up paying $5,000 to have a great deal of Botox injected into my vagina. That’s right. My vagina is very wrinkle free. It’s like Billy Crystal’s face down there. Sorry, Mom.
But here’s the amazing thing. It worked. Thanks to the magical powers of Botox, I have a fully functional vagina. In fact, and I don't mean to brag or anything, it functions on a pretty regular basis. Thank you very much.
And so even though I would never want to go through any of this again, I wouldn’t wish it on anybody. I hope that medical science catches up and uncovers the mysteries of the human vagina sometime soon. I still can’t help but think that in some ways it’s a blessing to know that the person that I have now been married to for five years truly loves me unconditionally. Thank you.