Hard: Softening Expectations
Hey, it’s Anna. This is the final episode in our three-part series called Hard. If you missed either of the last two episodes, I’d definitely recommend going back and taking a listen first. And I want to give you a heads up that in this episode, we get pretty detailed about sex. Like, more than usual on the show. So hold on to your hats.
CARSON TUELLER: I absolutely know that there is a sense of loss and grieving that comes when you lose physical function. So if you could previously have an erection and have penetrative sex with your partner in a really fulfilling way, and you can't anymore, the grief and the loss from that is totally legitimate. But that doesn't have to mean that something's wrong with you. It just means it’s time to learn how to have sex differently.
Carson Tueller knows both the loss and learning that comes with a big change in physical function. Nine years ago, he was in an accident that left him paralyzed from the chest down.
ANNA SALE: Do you, as somebody who takes Viagra sometimes, do you identify as having erectile dysfunction?
CT: That's so funny because I actually don't, even though I absolutely do. I think it's because I know it's a symptom of paralysis—so I a hundred percent do. It's just a part of the package.
AS: Uh huh. Yeah. If you were speaking to somebody who, uh, who has struggled with erectile dysfunction and who has, um, has sort of turned inward and away from romantic connection because of the pressure of that, um, what would you say?
CT: I would say let's name this. Let's name what's happening here. And I would say you are experiencing the impact of internalized ableism. That's what you're experiencing. Which is adding judgment to your physical function. Because what's so, what is true, is that your penis works the way that it does and the way that it doesn't. And there's nothing good or bad about that. There's nothing wrong or right about that. And then I would tell this individual, you can have a better sex life than you have ever experienced or ever had without the use of your penis or without it working and popping up the minute you think about something. There are so many ways to have sex and it would be of great benefit to you to consider that sex is so much more than you've ever considered it to be.
I’m Anna Sale… and this is Hard.
A series from Death, Sex & Money about Viagra…
CONOR CREIGHTON: I had to go to the bathroom and put cold water on my erection.
DR. GAIL WYATT: Sometimes you shouldn't have an erection.
and the ways we do and don’t talk about sex, relationships and our bodies.
OCTAVIA LEONA KOHNER: I like to keep things as messy and complicated as possible so you can't pin me down.
For the past few weeks, we’ve been hearing from people who’ve experienced erectile dysfunction… and from people who were involved in creating Viagra, the first pill to treat ED. In the past quarter century millions of individual sex lives have been impacted by Viagra and drugs like it.
And as we heard in the last episode - the messaging in Viagra’s ads evolved over the years, and became less about the problem of ED… and more about the idea that Viagra can help you have “better sex.” Sex, though, is complicated. And there are a lot of parts of a sex life that Viagra has nothing to do with.
Producer Katie Bishop is here with me… hi Katie.
KATIE BISHOP: Hi! Yeah - this is something that I heard over and over again from psychologists and sex therapists that I talked with – including from Dr. Jenn Bossio who practices in Ontario, Canada.
DR. JENN BOSSIO: Certainly Viagra doesn’t teach people, what are the ingredients to having this really enjoyable sex life? Like good communication, like novelty, like not sticking to one particular sexual script, but kind of switching it up now and then.
KATIE BISHOP: So you might remember from earlier in this series that before medical interventions like Viagra were available… ED was mostly seen as a psychological issue and people were referred to therapists or couples counselors for help. But that couldn’t really solve an equipment problem for people who had underlying medical issues… like those stemming from prostate cancer, for example. Then as more was learned about how erections worked… ED became something that doctors could treat with drugs. But this left a lot of therapists concerned that all these other critical elements of a healthy relationship and sex life that you might talk about if you did see a counselor – could be sort of skipped over if you’ve got a pill that can offer a quick fix.
JB: I think there is really good evidence to suggest that perhaps something like Viagra and therapy in combination might be really helpful. This pill might help, but what might be even better is if we look at all parts of you, the brain, the body, and your relationship, and then from there, we get a really good idea of what's going on. What's contributing to these sexual health problems and we start building up tools that yes, might help with, uh, you know, more enjoyable sexual response, but really it's also helping reducing stress, learning ways to manage the stress of living a difficult human life. It's learning tools to help manage mood. Learning tools to help manage anger, assert yourself in relationships, build healthy relationships. And all of those are the foundations to really good mental health. There's a ton of these psychosocial elements of having this good sex life, that a pill can't address.
OCTAVIA LEONA KOHNER: I was noticing an effect on Viagra and that was really helpful, but that wasn't fixing the core problem I was having, which was feeling like shit or feeling like nothing.
Octavia Leona Kohner is 30 and lives in New York. About 10 years ago, she says she started struggling with her mental health. She’s a trans woman, and had started hormone replacement therapy… and then her doctors prescribed her an SSRI. When she started experiencing ED, she asked her doctor about Viagra.
OK: I think the thing that caused the most erectile dysfunction, if it was not the SSRIs, it was sort of the constant, like verbal and physical assault I was experiencing as a trans woman giving me extreme anxiety and depression and PTSD. I was like, you know, really going through it. It was the early 2010s, which were like, you know, not the hardest time to be a trans feminine person, for sure. But definitely not the easiest time.
AS: And did your interest in medication like Viagra, was it prompted at all by any of your partner's reactions to you?
OK: Um, I mean, you know, you're in your early twenties and you're sleeping around and there's people are going to be like, hey, why can't you get hard? Because I think there is that sort of idea that if you're in your early twenties, you're going to be able to get hard, fast and keep it. Um, like virility and youth and all these other things are just like, if you can't do this, then it's noticeable.
AS: Yeah. And what did you notice when you started taking Viagra? How did your body work differently?
OK: I was able to maintain an erection easier and/or achieve an erection easier. So I did notice a change in the efficiency for my erections, but I - like, I noticed that, but still was very much like, hmm, maybe if the problem is medication, I shouldn't have to fix it with medication. Maybe, actually what the solution is, is that I skill build and learn how to deal with my problems in a way that doesn't super require SSRIs all the time or different SSRIs.
AS: Did you discontinue taking Viagra?
OK: Eventually, yeah. I've since done it occasionally, um, especially at times of like high stress or at times where I'm maybe on different medication. I tried taking it recently, for example, because I was on medication that I think was negatively affecting my - I'm going to rephrase that. Not negatively affecting, but I was on medication that was making it difficult to achieve and maintain an erection. And so I had tried it again recently and it worked fine. Um -
AS: Octavia, I want to just pause and just talk about words for a minute. Um, because we've been using the term erectile dysfunction, is that a term that you're comfortable using?
OK: Um, I mean, I think that's why I keep stopping myself when I say erectile dysfunction, because I, I understand that it is a sort of direct descriptor of like dysfunctional erections. Um, but I, I think I'd rather - I try, in my best, in my, like most saintly of days, I try my hardest to describe the mechanics of a situation, uh, rather than using perhaps words that people associate with like judgments such as like "dysfunction." Like if you hear someone's dysfunctional or something's dysfunctional, I think that is like, you know, not the most savory of words one could use. I don't really want to use that language because I think that language will inform my own feelings and I don't want to feel bad about not getting hard sometimes.
AS: How do you think about that term? Erectile dysfunction?
CC: I don't know. I kind of, personally - I prefer to say floppy dick.
CC: Do you know what I mean? Let's bring a little bit of humor into it. Erectile dysfunction sounds like, you know, something that, you know, might happen in a factory. "Oh my God. The cranes won't come down. We have an erectile dysfunction."
Conor Creighton is in his early 40s now, but he started experiencing erectile difficulties in his teens. He remembers vividly the first time he wasn’t able to maintain an erection. He was 17 and having sex for the first time.
CC: I don’t know if I technically lost my virginity then. It was an interesting thing, where I kind of, I had an erection for part of the experience and then lost the erection. So for me, I was like, oh shit. Um, am I a virgin-ish? Or did I lose it a bit?
AS: "Did I lose it a bit?" [Laughs] "Did part of it float away?"
CC: I didn't know what to make of it.
AS: And what did you think was happening inside your body?
CC: Oh my God. I thought I thought I was defective. I, and, uh, it was, it was horrific. It kind of, it completely - I mean, I was always quite anxious. I, I sometimes say that I feel like I came out of the womb, chewing my nails, and it was clearly like anxiety was a big part of my ED, but then what would happen is that, you know, sometimes I would meet someone who I really liked and they liked me and then I would almost, you know, avoid going further with it because I just felt like, oh, fuck. Like I can't, um, I like, I can't, I can't face the potential humiliation of not been able to get it up for someone who I really like. So on those moments, I would sometimes kind of, um, then go home with someone who I didn't like as much.
AS: Did you ever have a partner shame you for not being able to perform in the way that she thought you ought to?
CC: Oh, God. Yeah, but that was back in the days when I used to date alcoholics. But I mean, those relationships were also just a reflection where I was at that time. But yeah, there, there was - I remember one partner, in fact, we were, we were having sex and she just sort of stopped me and she goes, "You're just not brave enough." [Laughs] Or something like this. And stopped the sex. And I don't think we lasted very much longer after that.
AS: That would kind of ruin the mood, I would say.
CC: Yeah, yeah. Kind of, right? More than a fart.
Conor eventually started taking Viagra. He says he first stole a few from his dad’s sock drawer, and then in his mid-20s asked his doctor for a prescription.
CC: The conversation was very brief. I just said, yeah, I sometimes get erection problems. And just like, is it possible for you to prescribe me something? And, um, yeah, he did. And didn't really, you know, he sort of didn't really ask an awful lot about it. You know, I think he, like, he checked my heart and checked my blood pressure, you know, things like this. But, um, there was no, there was no question about like, are you anxious? Or are you stressed out? Or do you have problems or anything like that.
Conor told me he’d typically use Viagra at the start of a relationship to build up his confidence, and then stop using it. But then in his 30s he decided he didn’t want to take it anymore.
CC: This is also when I began to meditate and when I began to kind of take my mental health seriously. And part of that was just sort of allowing myself to be, um, you know, whatever lover showed up, I was okay with that. I was becoming better at like, if I didn't have an erection being able to say, oh, hey, like - you know, little things like I would just say, oh, hey look, um, I'm kind of just a bit nervous. Can we - do you mind if we hold off to the next time? You know, things like this, I became sort of better at saying that. And, and, um, that helped a lot, actually, that helped a lot. And I generally found that that was always really well received.
AS: Do you think it was helpful for you to have Viagra available when you were in your early twenties and trying to figure out how to have sex?
CC: Um, I mean - I mean, yes, like definitely it was, it was helpful in that um, maybe I would have turned away - I don't know what, uh, what else I would've done at that time. Um, but I think like, kind of having, having an environment where people could talk about anxiety and mental health issues in young men would have been much better than having Viagra. It was very useful at, uh, uh, helping to tackle the problem. But the, the real curing that I needed, I just didn't feel that there was anything available at that stage. I think also you gotta consider that when you are taking these performance enhancing pills, you're not really in your body. You're not really in the moment. Like if it's all about performance, you're just, you're missing everything. You're missing all the nuances of sex. There's something extremely, um, I want to call it a capitalistic about like performance enhanced sexual interactions, because it's very much like result orientated. Um, as my more mature understanding of sex is that it's sort of - sex is, is a much more copacetic and, and enjoyable experience when, when it is about the experience rather than results.
CT: You know, I will tell you, I have so much sex right now that does not include me having an erect penis. Um, and it's just really fucking fantastic.
We hear more from Carson Tueller about exploring new ways of finding pleasure… while also taking drugs to have his body work the way it once did.
This is Hard, from Death, Sex & Money. I’m Anna Sale.
Dr. Gail Wyatt is a clinical psychologist and sex therapist based at UCLA. She’s been conducting research and seeing patients in private practice for 50 years.
GW: I don't think that penetration has to be the only method of sexual pleasure or gratification.
Dr. Wyatt told me… when she sees patients, she wants to really understand the details of their sexual history… and their current sex lives. But when Viagra became available in the late 90s… Dr. Wyatt says she noticed a shift in what some of her patients wanted.
GW: They would only see the absence of a firm erection as the issue. A general that I saw that when he wanted direction, he wanted an immediate rock-hard erections. And I said, you know, it's not like you're saluting, that's not how the body works. So, a lot of people just want it to be, they wanted a technician. "Just give it to me." I don't prescribe medicine, so I obviously wouldn't be the person to do that.
GW: And as a couple grows older, I think their expectations need to change. Some couples do that begrudgingly, but they, you know, they find their way. It's not easy. Uh, you know, it's like saying, well, my partner has only one arm. So what do I do? You know, do I begrudge the fact that that's gone or do I find new value in the partner, no matter what my partner has or doesn’t have?
CT: I hate the idea that disabled people think they're relegated to, like, poor sex lives. And that also translates to, um, able-bodied people, because if you have the privilege of aging in this life, you will become disabled.
I called up Carson Tueller at home in Salt Lake City. He’s from there originally – and moved back there from New York after ending a relationship last year.
He works as a coach and professional speaker. He often gets hired by companies to talk about resilience… empowerment… and disability.
CT: If I'm talking about, you know, ableism, anti-ableism, disability in corporate settings, they're not usually eager to hear about like how my penis works.
Carson became disabled in 2013. He was at a trampoline park with his family when he landed in a foam pit and shattered one of his vertebrae. He was 23 years old, paralyzed from the upper chest down, and newly out of the closet.
AS: Had you had sex with a man before your accident?
CT: No. Nope. I had only kissed a man or held a man's hand. I, when I was coming out, I was so deliberate because homosexuality or an LGBTQ identity does not mesh well with the Mormon experience. And so I had - I was very deliberate about not doing anything that I would regret later. Um, and the irony is, is that I, you know, chose not to have sex with my then boyfriend and then became paralyzed and, um, never - and I will never know now what it's like to have sex with an abled body. But yeah, the irony is that sometimes I do regret that, the decision to wait.
AS: What - have you always, since your accident been able to, uh, achieve erection?
CT: I mean, yes and no. So I can achieve manual erection on my own, just by manual stimulation. The only time that erection is hard enough to be functional would be - and I mean, like, um, functional for penetration, for example - um, would be in the morning. Later on in the day or in any other moment, I am using a Viagra to sustain an erection for sex.
AS: And when you take Viagra for sex, does it, does it feel good from the physical sensation in your penis?
CT: No. Nope. I don't have much sensation in my penis. Actually, I have some, um, here and there with like certain kinds of touch, certain kinds of pressure. But my penis itself does not have much sensation.
AS: So if you don't, um, feel, feel it in your penis, uh, why do you take Viagra to have penetrative sex?
CT: Yeah, I do it for a couple of reasons. One is for my partner, right? So if we're going to have penetrative sex then, um, having, uh, like using my own penis is both exciting, it's arousing, it's validating. Um, it helps me feel like I'm in touch with my body still because, you know, there are some disabled people who are born with a disability and I happened to acquire a disability. So there's still large parts of my identity that are linked to how I used to feel, how my body used to function. Um, and so I feel like me, I feel like myself, I feel at home when I'm in touch with that part of me or when I can see that my penis is working the way that it used to. Um, so it's a psychological piece. I find that so much of the sexual experience is deeply psychological. Even seeing myself again, kind of erect or having, you know, penetrative sex and ejaculating is all incredibly arousing. Even if it doesn't feel the same way that it did previously.
AS: When you think about who it's for, when you're having sex with a partner and you are penetrating your partner, do you feel like it's more arousing that you are pleasing your partner? Or is it arousing to look down and see that your body is capable of this?
CT: It's both of those pieces. It's definitely both of those pieces. Um, the visual of it, um, and also like the connectedness, right? There's something about, for me, penetrative sex that is, um, connected, right? Like parts of bodies inside of other bodies, um, is both connected and intimate for me. So I love that piece.
AS: Say you're with a partner and you have had, you've had sex, penetrative sex, you've topped, and you're up for feeling more. Um, what do you ask for?
CT: I ask for, um, any kind of stimulation in the places that I feel. So I don't, I don't have a lot of skin sensation anymore. I think probably 85% of like the real estate of my body, like my actual epidermis, is no longer sensitive. So when I am aroused or am in like a sexual experience, I, all of that becomes like heightened and incredibly sensitive and responsive to touch. So, um, any kind of stimulation, like just rubbing hands across my chest when I have chest hair or even, um, a little bit of like, um, stubble on my beard or on my neck, especially on the back of my neck. Sometimes I, I will intentionally make sure that I have hair because the sensation is all that much higher and intense. So I will ask for a partner to like rub a hand, like an open palm across the top of my chest. That always literally kind of makes me gasp with pleasure. Um, uh, sometimes kind of like actually the inside — this is so, in talking, this all sounds so, I'm like listening to me say this and I'm wondering what abled people must feel — but when it comes time for me to actually experience the height of pleasure, um, I usually am asking or training a partner to kiss my, kind of like the front of my neck, um, up to my ear. And while they're on my ear to take their fingers and run it against my scalp on the same side of that ear. And there's something about that combination that literally takes me from like, if I'm like at a six of pleasure and arousal to like a nine and a 10, where I am - with, with that sequence and staying there I am, uh, climaxing within probably a couple of minutes. And then, um, if a partner just stays there and continues to do that, I will continue to stay in that climax space, um, for as long as that partner is there or until it becomes unbearable for me.
AS: And when you say like climax space, is it, is it orgasm? Is that what it feels like?
CT: Yeah. Yeah. It feels, it feels different from how I experienced orgasm as an abled person. But, um, it like, it feels like the, the way I've explained it before is it feels like there's sunlight in my veins. Like everything inside me, turns white and euphoric. My whole body kind of disappears into this state of pleasure. It feels like, I'm injected with pleasure, uh, down to my toes, um, in a way that is like, um, pretty indescribable. I used to think that disabled sex and sex as a paralyzed man was always going to be somehow a demotion or a step down from the pleasure that I would have experienced otherwise. Um, but paralysis - like the pleasure I feel during sex, there is no piece of that that feels inadequate or not enough, or that I leave wanting more of. Um, it is completely and entirely fulfilling. Um, and it also lasts so much longer than my orgasms used to be when I was abled. So I can orgasm now for like much longer periods of time and repeatedly because of how my body works now.
AS: And it sounds like also like how you've practiced and gotten to know your body.
CT: Yes, yep. A hundred percent.
AS: Um, I, I was struck, you said, um, if I'm, if I'm instructing or training, I think you said?
CT: Mm, I said training, yeah.
AS: Training, a partner, what to do, um. That kind of communication, um, do you, do you think that being able to be so, uh, clear and direct about what you like and what brings you pleasure, do you think you would have been able to communicate like that in sex had you not become paralyzed?
CT: I think I wouldn't have, because I would have had no need to. Right? Like I would have had a feeling penis and I would have found a male partner who probably knew, uh, or had, um, a natural inclination to focus on my penis. Right? And so I, I just would have, I think assumed, oh, this is how sex is. It's very like genital-centric. Um, and this is just how it goes, you know, A plus B equals C and then you both climax. And that's what we call sex.
AS. [Laughs] Mmhm. Yeah.
CT: So, so now, because none of that works on me, right, someone will go like go to town on parts of my body that I don't feel very much of. And so I have to say, well, if I'm going to experience, um, pleasure, which is my intention here, and connection, uh, then we're going to have to do that in a different way. And that's going to require exploration and a lot of communication because there's no way that an individual could kind of just deduce how I'm going to get off. It's different for me.
AS: So you're - it sounds like you're sexually active now. You're single and sexually active. Is that right?
CT: That is correct. I would like to be more sexually active. I've been working through my own internalized ableism, Anna!
CT: Um, yeah, just kind of like leaving a relationship, like a monogamous relationship where I just didn't have to explain this shit to my partner. We could just be together, get each other off, have a good time and now it's like, it feels exhausting to think about a hookup or anything like that because of everything we're talking about, both like - I have to come in thinking, okay, what does this person know or not know about my sexual function? What questions might they have? Um, I'm going to be a disappointment to them because they're going to want to just like, get in, get off, get out. And that doesn't work for me. Or, you know, is this person even the kind of person that wants to take the time to learn how to get me off? So sometimes that whole piece just feels so emotional and heavy and too much that I'm just like, ugh, forget it, you know.
CT: But it's an investment. And so I'm constantly talking with myself and I'm like, like, look, bitch, if you want sex, this is how it's going to work. Right?
CT: This is how it has to go down. You're going to have to have a conversation and like it's worth it. So like just do the work and put in the investment. And that's going to pay off.
AS: Oh, that's - oh, "Look, bitch. This is an investment." That's going to be a mantra that I come back to for many parts of my life, Carson. You've given me a gift.
That is Carson Tueller, in Salt Lake City.
Thank you to everyone who shared their experiences as a part of this series. If you missed any of the previous episodes – I’d highly recommend going back and taking a listen. And if you want to tell us about your own experiences with Viagra or ED, write to us at firstname.lastname@example.org.
This series was reported and produced by Katie Bishop. Andrew Dunn composed the music, in addition to mixing our episodes, as he always does so wonderfully. The rest of our team includes Afi Yellow-Duke and Emily Botein, and a big welcome to our new producer Zoe Azulay who joined us starting this week. Our intern is Gabriela Santana.
And special thanks to Mike Barry, Michelle Xu, Theodora Kuslan, Andrea Latimer, Kim Nowacki, Dalia Dagher, Caitlin Pierce and to Radiolab’s Lulu Miller, who suggested that we reach out to Carson.
Death, Sex & Money is a listener supported podcast. Please make a contribution today at deathsexmoney.org/donate. If you’re new to our show – we have a starter kit of suggested Death, Sex & Money episodes to check out at our website: deathsexmoney.org. And we also have a weekly newsletter! Sign up at deathsexmoney.org/newsletter.
I’m Anna Sale… and this is Death, Sex & Money from WNYC.