Q&A: What sex advice and information was most helpful to you?

There's information out there, but maybe because I didn't marry Jim disabled; he became disabled—he's physically not the Jim that I feel in love with, with his disability. And that intimacy is just not there, that sexuality. Interviewer: Do you miss it? Athena: Oh, it's horrible, it's horrible.

There’s a lot of things to go look at. I mean, Viagra and stuff. You’re going to have to experiment—and they recommend doing penis pumps. But, one thing that really helped in the beginning was a ring, and I don’t mean to be vulgar, but they call it a cock ring. So, what happens is with the guys—this is going to be an important thing for guys—what happens is when they’re lying on their back, they lose a lot of blood circulation, so the circulation goes down. So if they wear their ring on the base, then when they do have blood, they can have a much bigger erection, therefore, last longer. So, that’s one of my biggest advice, because then you actually feel more of a man that lasts longer.

Not really, you had to just figure it out on your own. And I mean it’s just, you know I had a wife, so I wasn’t trying to go out and find a find a girl. It was kind of hard at first, but you learn ways to, new ways, new ways to go about it differently. So, that hasn’t changed a bit, I guess, but not much advice at all, if any. We had one little class about it, but more less, it said figure it out on your own.

The education of it was the most important aspect. When I say the education of it, it wasn’t so much “alright, we’re going to educate you about sex. We’re are going to educate you about what’s happening to your body.” And that was one of the greatest things that I encountered because I got to see and experience some details of what my body was going through, and it allowed me to grasp a better perception. And it helped me also educate her so that we can both be on the same page and then we could partner together.

After you're injured, you just can't function like you did before. We tried Viagra, Levitra and all these, these other drugs that seem to work in other spinal cord patients, but didn't really seem to do anything for me. I had a doctor that prescribed a pump for me, so at least I could, you know, have a sexual relationship, and I think it was the biggest thing, that I was still able to perform, you know. Obviously it's not going to be like before. If you got a spinal-cord injury, some things are going to work for you, some things aren't; you just have to find out what the one is that is going to work for you, and go with that.

Make sure that your spouse is not the person taking care of you all the time, because that's almost like a relationship breaker. A lot of stress goes into that, and a lot of the romantic stuff goes out the door— because the person kinda ends up feeling more like a caregiver than a partner, or a spouse or a lover.

I didn’t get a lot of that advice. There was one lecture in the day program here at Shepherd, but it’s so general that it’s one of those things that doesn’t really help you in real life. And so, I don’t think that I got much good advice. My girlfriend was very open to point around, and see what was possible, and so, she is the one that made me realize that,” hey, this doesn’t work.” And so once I realized that, then now it’s just a matter of conveying to any potential partner that, “okay that just things might be a little different.” Because I can’t really help out getting into certain positions, but it’s fun, and it’s playful and it can happen.

Obviously, during my hospitalization there was a lot of information about whether, you know, I could have an erection, whether I could ejaculate, whether those sperm would be fast enough, and enough of them and fast enough. And so, my wife and I had had a conversation before we got married, and said “we want a family, whatever way, we’ll see,” right. And so, when we decided to try to start, I went and got checked to see, and there weren’t many, and they were slow. And there were things we had to do to stimulate ejaculation that wasn’t like before. But yeah, so she got pregnant first time.

We call her the sex lady at the Rehabilitation Institute of Chicago, her name is Diane Hartwig. She taught me to see intimacy through a different angle, and I think that, well I know that's what made a difference in my life. She showed me how to feel sexy in my own body and, and once I got that, it was probably one of the biggest components, one of the biggest missing components of my life that I needed to feel, to get back to the sense of normality. And, she's the one who introduced me the medicines of, of sexuality—whether it be the Viagra, the Cialis, which I will pop like Tic-Tacs.

Well, they told us “even though you may not have physical feeling, it takes time to come back, but it’s still there.” They said, “be aware that you can still get pregnant, still just safe sex if you’re planning.” Like, you know, anything you would tell anybody who wasn’t in this situation, same rules apply.

There's not a lot of information, a lot books especially geared towards women with spinal cord injuries, so it was really just trial and error. So, my advice would just be if sex is something that you're ready to face so far, just find somebody that you really trust and feel comfortable with. It really bothers me that there's not a lot of information about sex and sexual issues with women at all.

When I was in rehab, they wanted me to go see a psychiatrist, and I was—they had one in-house or whatever—I really had no use for that, but they made me go anyways.   But, I think the lady wanted me to open up, and break down, and bawl my brains out, and do all this stuff, but none of it happened.  But she did give me some information on sex.  Viagra, and Cialis, and stuff like that works for me; other people it might not work for, or I heard it doesn’t work for.   Intimacy is, me and my wife aren’t as intimate as we used to be, but I think more because she knows that I don’t really get anything out of it. But, I’ve tried to explain to her that I don’t get any sensory out of it, but I sure get a visual out of it, and it doesn’t change any of my perspective.  But, she feels she’s being selfish if she’s intimate with me because it’s one sided, but I’m telling her it’s not one sided.

When I was in rehab, there was a gentleman working as a counselor at Shepherd Center named Wayne Ware. And he gave a class about intimacy and sexuality, and basically covered the mechanics, the medicines that you can use to help, pumps and injections, padding and positioning, equipment, intimate rider, products available, websites, books, reference materials. And then a little conversation about being vulnerable and being able to be vulnerable with confidence with your intimacy partner, your sexual partner. So, that you could accept that this was kind of a new beginning. And that the first time we ever had sex as young adults or maybe even teenagers, that we probably weren’t any good at it and there was a steep learning curve there. And that we were going to need to kind of start in that same position, back to the beginning of that steep learning curve. And that we needed to allow ourselves the grace to not be as good at it as we were before our injuries. So, that was really good for me.

He was in rehab, we had met through a friend of a friend another person who had been injured—he fallen out of a tree—and him and his wife actually came and talked to both of us.  She had said that the best thing for a relationship is to try to continue as much as normal as possible.  You know, continue hugging and touching.  That was probably some of the best advice that I had heard.  

I honestly, I know I went to a sex education class. But you know, for a long time, of course I’m a young woman, I was worried I would never be able to enjoy sex again. But that’s not true, it’s definitely not true. And intimacy, it kind of you know, for someone to be intimate with you, it’s a different level of caring and acceptance. And therefore, again just like with friends, it helps you weed out who’s real and valuable in your life. And even picking a partner in that aspect, because it does take a level of acceptance to be with somebody disabled.

You know, I had no idea, because you can't really ask somebody, "So well, what parts work and what don't?" So we just learned each other's bodies, and it was wonderful, I mean it's different, but it's thrilling and comforting. I'm married to a great guy.

Be patient, be patient and don’t rush things. And don’t get frustrated because it will happen when it’s time. And don’t make them feel like they’re inadequate because believe me, they’re trying. They are trying their hardest.

That would be one of those times when I would think I would have a lot of questions, go to a sex and intimacy class. And they would really cover a lot of things, and it’d be a lot of information that you feel like you’re kind of—sometimes I kind of wish I wrote my questions down. But I feel like it just took practice and experience to kind of figure out where you wanted to be, which is really tough thing to do. I mean it’s tough to kind of try to be intimate and learn at the same time because you want to be slick and cool. At Shepherd, they had a sex and intimacy class and it was done by other people in chairs, which was great because obviously those people went through the same struggles you went through. So, I’m trying to think back to initially, definitely you know initially, it takes time to kind of relearn how to be intimate, and there’s a kind of difference between sex and intimacy. It actually with my wife and I, it has definitely made our relationship a lot more intimate just because of how things would operate. It’s not quite like what it was before, so you’re going to be a lot closer, a lot more intimate, things might go slower and things like that. So, we actually in a way, we enjoy it more because we have more intimacy. There’s certain things about it, certainly I’d still love to feel below my level of injury, but I mean I can look at it with a positive spin on it for sure.

Not that it's great to hear sex advice from, like, your doctor, but I think it's an important part of rehab. And, like, if someone had just, like, come in and been like, "you can still have sex," just blunt like that, that would have been great, but, you know, I figured that out anyway. But, I don't know, most of, most of the sex advice has been from friends and other people with disabilities, or mentors, sort of like, later on in the process. But, it's not that complicated, and just make sure you're comfortable with your partner and comfortable with yourself.

I think we all kind of talked about it a little bit while I was a patient, and a lot of it is trial and error.  I was engaged at the time, and it didn’t quite work out.  But, I knew eventually that I would find someone that could realize the person I was inside, and that I was no different than I was before.  And, I think trial and error was the best way to try and learn.   

I think the biggest, you know, resource and little bit of knowledge that I, you know, carried with me, sort of came from meeting other people who had a spinal-cord injury or another disability who used a wheelchair who were married, who had kids and families and had them whatever—post-injury, post-disability—and that their lives were really full, and well rounded, and included partners, and families, and friends and jobs. You know, it's part of, a sort of a, more holistic look at it, that was sort of, that was my rock.

Yeah, they put us in a class and it was pretty much, “you can still have sex, you can still have babies.” And I was like, “is there anything else?” Anyway, but when you get to the point where you’re trying to start a new relationship, or something like that, I think it’s a common anxiety that you don’t feel attractive, you don’t feel like somebody, you know, who a non-disabled is going to be interested in dating a person in a wheelchair. I struggle with that, everyone I’ve talked to they struggle with that in some ways. But I’ve also been told that many people met their spouses or started their families after a spinal cord injury. It takes work within to get yourself confident and comfortable. I think that as early as you can, you should try to start getting back to yourself. It took me a while to get back to dressing nice, trying to care about my hair, care about how I looked because to me it didn’t matter. I was just, all I saw was, I am a disability. But, you have to realize you’re just a person that sits in a wheelchair, you still have a lot to offer somebody.

Honestly, not a lot. I think that mostly the message that we got was that it’s possible, and to explore it but not a lot of specifics. I don’t know if it was that the resources were there, and I didn’t know where they were, but in the early days I definitely didn’t really know what that looked like. But I think that’s where peer mentoring came into play a lot, I really turned to people that I had become friends with in the community to ask them questions. You know, people that have been doing it longer than us to ask them questions about how do you experience intimacy in that way with your significant other. Like logistically and emotionally, it is different. And that was the most helpful thing because it is going to be different for everybody and suddenly you have to ask people—and usually it’s strangers and so it feels like uncomfortable and a weird space to be. So, I think it’s mostly that it’s a hard conversation to have. Everybody wants to know the answer, but nobody wants to really talk about it because it’s personal. But just to know that it is possible, that was really comforting.

Probably just knowing that I was still able to, because at first, like you know, I didn’t, I thought that was it. Like knowing that I was still able to—just the scary part was like, “you could still get pregnant,” I was like, ah, that’s a red flag. It’s just different because most people just don’t understand that part, and I just trying to explain it like you can.

I was 15, and, like, you already have this in the news now where, where they're still trying to debate if we should talk to the kids about sex, you know, in schools and things like that—contraceptives and, and condoms. I didn't get any thing. No one talked to me about sex, no one said anything that, no one told me how my body would work, I just experimented, figured it out on my own. When I got older, I pretty much learned from Schwab. Due to my line of work, we, we have to explain certain things about the body to the kids, and it was new to me. When they were teaching me how to explain stuff to children, that was the first time I learned exactly how, what, what's supposed to happen. That they have equipment out there if, if you're not functioning properly, that they have places for you to go, you know, where you, that you can talk to, you know, to explain it better to you.

Having the confidence in oneself to re-enter society and to get back to normal, whatever "normal" means, is a big step in that direction. I didn't have a lot of trouble dating after my disability; I don't know why, but I didn't. And, I think it had to do—when I think about it—I think it probably had a lot to do the fact that I had confidence. I was also in an environment where disability was not alien. But I ended up leaving that environment, and I still didn't have trouble, but that was years later and I think that confidence helped in a very big way.

I think in rehab at 17, I was so mortified, I was embarrassed, I was nervous, I was scared about what that intimacy might look like in my future. I was sad, and it was difficult at times. I feel like I probably tuned out everything that was coming at me like, “I don’t want to hear that, I’ll face it later.” And when it came up later, I was like, “okay, this is hard, like maybe I should have paid attention in rehab more.” Yeah, I kind of tuned it out.

I did not get any information about sex. Like, I mean, just general sex ed stuff, but nothing as it pertains specifically to being paralyzed. I wasn't ever taught anything, I didn't really search out any information about having sex as a paraplegic because I hadn't done it not as a paraplegic. So, I didn't have anything to compare it to. It's just, you know, how I learned to do it. I mean, it's like sex for everybody, right? Like, something works for you doesn't mean it's going to work for me. That's no different whether you have a spinal cord injury or not.   

Sometimes, like if you have spasms and stuff like that, and you need to take any type of pills, I would suggest that. Because whatever is going to help you be able to still live comfortably and enjoy yourself and do some of the same things you did prior to your injury. There’s plenty of things out there that you can take to able to help a man. And then, another thing they may feel like sex is boring after you had an injury and in a wheelchair. But it’s other things that you can Google like “IntimateRider,” it’s like a sex chair that helps you to be able to get into different positions. So, there’re much things out there to be able to still have excitement any time you’re in the bedroom instead of just like thinking negative, “I’m in a wheelchair so now it is going to be boring.” That’s not the case; you can still have fun in the wheelchair just like you did prior to the wheelchair.

I guess the best advice for me came many years later where somebody said, “You just explore all areas of your body.  Don’t make an assumption because you can’t feel it, it might not be a sexual spot.”  You just need to be adventurous and try anything.  

The word “possible” because it kind of gets back to that—when I woke up, I did not know what I was able to do, or would be able to do, but I knew that it would be okay. The term “new normal” is a byline for somebody with a spinal cord injury. So, what the “new normal” is, it’s not just a consolation prize, it’s the spice of life. So, it changed but it’s still good.

I attend some agencies, like RIC, where they had the Women's Center. And in there, they would show us the female condoms, and show how to, how your partner can help you put it on for you, and how to always to be open minded and have a very good communication with your partner in regards to the things that your partner can help you do.

Yes, it’s good to know that it’s still a possibility. Whether it’s been applicable to my life, I couldn’t say right away. But it’s good to know that sexual relationships are still a possibility.

When I was in rehab, and had the sex talk with one of the nurse practitioners, who was great, but, you know, 17 it's like, "I don't want to talk about this with you, no." So, she gave me her thing and did a great job, but I didn't take a lot of it. And, it was really just, once I got back home, and you know, just started getting more independent, and started driving again, and just getting back into a normal daily routine, and getting back with my friends and staring college. It was really kind me just pushing myself and just kind of taking the bumps as they come along with it.

I met this lady that was also paralyzed, and that was helpful because she was in my same position. So, she was able to, you know, we were able to just talk about things. It was great, her being a lady, you feel more apt to talk to someone of the same sex than to talk with a gentleman about it. So, it was really helpful talking to her about it, and her being, you know, she’s in the same position as myself.

I think the overarching theme that probably, and it’s true, and resonated the most is just the communication, and being willing to recognize that your body functions differently now. And outside of just the simple limitations that are most obvious, your body can actually respond. And you start to develop more of an acute awareness of how intimacy and sexuality is as much mental as it is physical. And so, really tapping into that I think is probably, it was touched on initially, but as I have over my life explored that more and more, and I find it to be really true.

We did get some sex education but we didn’t get much about fertility.  And what we did get about fertility was, “Oh, you may or may not, we don’t really know.”  It was really difficult to find that information.  We struggled finding a fertility doctor that knew anything about it. We struggled really even knowing much about it.  And thankfully, Andre is so great with looking into things online, that he’s found a lot through that outlet.  And then, we found the Miami Project out in Miami, Florida.  They were the ones who helped us with our fertility

Viagra had just came out, and everybody was all excited. So I was, like super excited, I'm like, "all right, this works." So, you know, they just told me that I'm still able to have sex.

I do remember like kind of chatting with peer support here at Shepherd maybe once or twice about like what do they do. I mean also I’ve talked to some of my rugby teammates about like what medicines they use, so that’s how I got an idea about what type of medicines they use for their ED, or erectile dysfunction. So that kind of gave me a conversation starter once I got to my urologist like “I heard this, I heard that—what’s best for me?” And then that’s when she kind of decided what will be best and her and I work together on that.