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Sex and Dating After a Spinal Cord Injury: Personal Experiences with Paralysis
Social Life and Sex After Spinal Cord Injury
It was scary at first, I mean, because you’re so used to things being in a certain way, and that’s just not that way anymore. You have to get to know yourself again. What might have worked before doesn’t work now, and vice versa. So, you have to find other things that may work for you. I didn’t think I had any feeling for over five years. I was devastated by that. And then discovering I did have feeling it’s just different, you know. So, that was quite an experience. Yeah, I went a long time thinking, “oh, because we do it normally, I can’t feel it normally.” So, it kind of shut me and my ex-husband off. And his basic thing was he didn’t want to hurt me. I’m like, well, I’m already in a chair, so it’s not like he could hurt me anymore than I’m already am hurt. So, it wasn’t until I met my current husband that discovering different things. You know, just trying out different things and being more trial by error.
Nothing changed in the performance, it just lasts longer. You know what I mean, that’s just it. And I mean I was told by doctors “be prepared that there might not be any performance.” There’s no problem there. We’re lucky. I mean, we’ve gone to groups and stuff, and they’re like, “that’s one thing that we miss.” I’m like, “just work on it,” you know. There’s classes you can go to and stuff, but we were lucky. That was one thing that we didn’t have to worry about. He’s taking me on a date next week. So yeah, I’m excited. I don’t know what’s going on, but I just know we’re going on a date.
I have learned that after spinal cord injury, you need to develop a whole new set of skills. There are issues that you need to communicate about that you never had to do before. A skill that’s been helpful to me is you’ve got to be the one to make people feel okay when they’re nervous, or they feel like your disability is awkward to them. Often in their head, no one ever thinks they’re going to date someone with a disability, and again, you have got to feel comfortable enough to be open about it, to provide education, to communicate, and answer the inevitable questions that people are going to have for you.
I’ve been doing the online dating thing recently because people don't approach me. And I don't know how much is that because I’m pretty and that's intimidating, or because I’m in a wheelchair and that's intimidating. You just put them together and that's a lot of intimidating for folks. But, at the same time, it's not like I would want to date somebody who wouldn't have the nerve to approach me. You know what I mean? So, I feel like it weeds out a lot of assholes because, you know, if the chair is going to be an issue, I want to know upfront that the chair is an issue.
But I’ve had a couple of dates, yeah; I’ve actually had some dates. They weren’t people that I met; these are people that I already knew. So, but no relationship really formed from it, but I wasn’t even sure if I was ready for a relationship. So, I’ve kind of started thinking, “okay, I just want to focus on building a friendship with somebody and seeing if it can go to a relationship.” But at the moment I’m comfortable, I feel like I look good.
Before we got married, we talked, and I didn’t know if I could have kids or not. But luckily, with medication and all, we were able to be intimate, and we had kids the old-fashioned way. There was no artificial or anything. And it’s funny, because even early on, I didn’t know, and I was always curious, “okay, what’s next? Will this be a barrier for dating or for getting married?” And again, small town, I knew I wasn’t going to stay there, but you never know when you are going to fall in love. So, when I met Kim, and then we dated a year, and then I went off to college, and she stayed home, she was still nursing. But then she came to Tuscaloosa, and it was a friendship, and it grew and there was nothing off limits.
I dated when I was in high school. Let's put it this way, I think having a positive attitude is rule number-one. And, I think by having a positive attitude, accepting my disability, you know, I dated a lot in high school, frequently in high school. You know, I guess maybe I didn't have a problem meeting girls because I always had a place for them to sit, right here next to me. After I got married, my wife and I wanted to have children, and I was very concerned with the fact that I went through all the chemotherapy and the radiation therapy at such a young age, you know, how was that was going to affect me being able to father a child. And, you know, went through all the appropriate tests I needed to do to make sure I didn't have any defects or anything like that, and had the ability to father a child. I have a beautiful girl, young girl, named Hannah, she's six-years old, and I have a fifteen- month-old son named Jack, and they are the joys of my life.
I actually just stared dating a guy. He’s actually been my neighbor for 10 years, and then after my accident, he was the one that stayed close to me. He’s actually one that has helped me more than anybody throughout this whole thing. So, we actually just started dating in June to try it out, so I am excited.
I've had a couple of girlfriends since then. It's different, for sure, because a lot of girls, like I said, aren't sure how to start the conversation, or, "should I say 'hi,' or should I flirt with this guy, I'm not sure...He's cute, but he's in a chair, I don't know what to do," you know, it's kind of like that. Like I said, you just have to start the conversation, and if you let them know it's okay, then it will be okay
I was always fearful that I would never have the ability to perform. But you know what, there is different things, different emotions, that become—it’s, I think it’s more romance, more passion; to be able to hold, to be able to be with someone. It’s unfortunate that it happened, but allowing yourself to find the beauty in love, to find the beauty in romance and passion, and finding a different way to have sex is ok, because it makes it twice as good, like you’re feeling that emotion come on. Because boy I’ll tell you, I love it. It doesn’t happen a lot, but I love it.
I don’t know that we—I’m sure that we had a specific conversation, but at the same time, I think it was just, it was as much about allowing things to develop and unfold. Obviously, there’s a physical limitation, and, you know, in exploring what can be done relative to that, whether it be through drugs, or stimulants, or prosthetic or whatever. But at the same time, it’s that really the communication was just more a matter of, it just kind of developed naturally. And even today, as we’ve been together for a fair amount of time, but we’re also both older, and we have got a lot of pressures of life, and kids and everything else. The conversation is really no different now than it is for anybody that’s in this stage of their lives, able bodied or not.
The chair is just another part of me; I'm still the same person. So, relationships shouldn't be harder for people who can't walk than people who can. People still like you for who you are because you're still the same person.
I have dated off and on. I’ve had a nine month relationship, another nine month relationship, and a couple of shorter ones. I’ve had more luck online than I have not on online, and the reason for that, I think, is because I know all my friends’ friends already, and I’m not meeting anybody new through them. So, I get online, and lots, and lots, and lots of first dates, and a few that won’t even make it to the first date part when I mention them wheelchair. You know, it’s okay if it is a deal breaker, then I don’t even want to waste my time. But that works. Sex happens; if it’s a good relationship, then it’s definitely part of the relationship.
Dating, well you know, I was 44 when I had my accident. I was married, I had children, I knew what sex was like, I knew what good sex was. So it wasn't a priority for me, because I was older. To say, "oh my gosh, now I have this spinal cord injury, my life is over, I can't sex," on, and on, and on. Which, of course is not true, because anybody with a spinal cord injury, anybody with anything can have sex, and can enjoy sex. But, dating was not a big thing on my list after my divorce. So I would say, I've had a couple of relationships, but they were, they were never long term, they were for pleasure of someone's company. And they weren't to try to find out whether I could have sex, or how good it would be, or anything like that. It was really to enjoy the person. Now, I have to say that while sex can be very good, it's not the same—for me, for me, for other people, perhaps. But for my body and my sensation, what I'm able to enjoy and feel, it's not the same, but it's good, and that's what's important.
Early on, you feel that all of the sudden, you're unlovable. That, you know, you've been destroyed, you've been ruined, you've been maimed, whatever your, sort of, self-description isn't really the case. And, you know, the relationships that I've had since then, and I've had a number, I almost made my disability a bigger thing than any women has. And, you know, that's pretty amazing. But, yeah, as in the rest of life, it's sort of get on with it, and there's a way to deal. Now, maybe you're not going to be, you know, an athletic porn star, but most women I don't think really want that.
That's another thing, a big thing that I was, like, upset about because I used to be quote-unquote out there like a player, which nothing to brag about. And the thing is, there's a whole lot of ways of doing what you got to do, all it is about is communication with your partner.
I would love to date. I was single prior to my injury, but I was in the prime of my dating, I was 42-years-old, and I was dating. I didn’t have a significant other, but I would meet guys, and we would go out for coffee or things like that. But there was no special someone, but I would love for there—for him to find me. I really would.
I remember watching a videotape when I was a patient at the Rehabilitation Institute that a young woman on the videotape was complaining that nobody would approach her because her wheelchair was a barrier between her and the rest of the world. And, the more I watched her, I realized that the barrier was her attitude; she was afraid of the rest of the world, and she put the barrier up, and so therefore, people didn’t cross that barrier. The trick is understanding that not that much has changed if you have a spinal-cord injury, and that might sound like a crazy thing to say, but it’s true.
The friendships, as far as female, the injury was a gift. It spared me the shallow women of the world. I never bought dinner for someone that didn’t care about me as a person. So, in many ways it was a huge gift.
Well, my husband today is who the intimacy happened with from the beginning; I never dated anyone except for him. I was so nervous that I sat down with him. And because I was nervous not only for the intimacy, and people in wheelchairs will appreciate this, the other stuff that goes on, the bathroom. You can intermingle the two because they go hand-in-hand sometimes because you don’t have any control. And so, I was so scared that that would interfere, that I was like, “okay.” I sat him down when we were dating, and I was like, “okay, sometimes I pee my pants, sometimes I have accidents.” And he’s like, “I don’t care, and I’m like, “oh wow, you are just like heaven-sent.” Like I couldn’t believe it, he just didn’t care, and he still doesn’t. But our situation is a little bit different. Like I waited until marriage to have sex. But he was so understanding, and it was all new, like I didn’t know what was going to happen. And so, for the first while it was like, “okay, how do we figure this out? How do we do this?” And we did, and it kind of made it fun and interesting, it wasn’t just normal boring—not boring, but it’s all great. But it was different for him and for me, and so we just kind of learned together.
I was dating someone for a few months since the incident, and this is a lot to take on for someone. So, I think that it’s going to take someone very special to be a good match for me.
Well, when you get home, you know it was—you just got to experiment, try different things. It may not work anymore, there’s different ways to make it work, you know. And I don’t think it’s all about the sex part, it’s just being together, you know what I mean. Me and Hope just, me and my wife, it’s not about the way it used to be, it’s still love no matter how you do it.
Prior to my injury, there was a way of life that I knew to be. Post-injury, I had to realize that I could still have that way of life, I just had to flow with it, if that may be a word. Meaning that some things did change but I didn’t change as a person. I was still the same guy, there were just some things I had to do differently. So, I do have a relationship now that is very significant to me in my life, and all that we do is just learn how to handle things and problems as we go. Sometimes, a lot of my friends, or you know we encounter things in study groups, different things like that, and we always say, most of us get to hide our problems. But they say Jeremy, “you don’t get to hide yours, yours is out in the open and everyone can see it coming.” And with that, in relationship to relationships, I couldn’t hide it. So, it was something that was evident, and it was out front, so there was basically the first thing that we had to deal with. She saw me coming in a wheelchair, and to this day it is so amazing, she says,” Jeremy because of your personality and your spirit, I never saw your wheelchair.”
I was challenged to date again, and found out that people still like you even if you’re in a wheelchair. So it was the eye-opening thing that “yeah, I can have a normal date life as well.” So, that’s been a good adventure I have to say.
I don't have a problem dating girls. You know, I guess, you know, you just have to, I guess, weed out the people that can't see past the wheelchair. Because, there's always the, you know, the girl who's like, "err, you're in a wheelchair, I can't date you." You know, but, it's actually, it's actually all right, you know, because I never really had a problem getting girls before, so it's not really an issue now.
During the process of my rehabilitation, the opposite sex started to come towards me, I started to draw them in. So, it would actually change my mind and my outlook, "Oh wow, maybe I'm not that bad."—"Oh, maybe a wheelchairs a good thing."—Or, "Maybe it's just that thing that, that opens that person's eyes, or turn that person's head, or makes the difference to that person." So, that was one of the things that helped me get over that barrier.
Definitely the male plumbing does not work the way it used to with the level of paralysis that I have, but that doesn’t mean that my wife and I can’t still be intimate and be together. And it’s thinking things through from a different level as to what that intimacy looks like. We don’t rely on the actual physical act of sex to have that happen, we have to be creative and look for other ways to be close.
I had a boyfriend at the time, that didn't last very long. We broke up a month after I got back to school, and so, so that was then, I was like; no one's going to love me anymore because obviously, he couldn't. You know, for a while it was, really threw me for a loop, and I didn't know how to be. And I think that that's a hard thing you have to learn, you know, and I think a lot of people go through that when they're younger. I think eventually you have to be comfortable with yourself, and confident in yourself and be comfortable with your disability and how it affects you for anyone else to be—and that's friends but it's much more important with intimate partners is that if you're comfortable with yourself, then they can be too.
Of course, I was in a relationship, but my partner never left me, and I kind of was pushing him away, but he never left. But we just broke up, maybe like three years ago, so it kind of I guess made him closer to me , where I wanted to be not close to him—because I knew there was going to be some issues that were going to be kind of strange to face, where I would just rather have not.
Dating is a funny thing, you know. And especially for a woman who've had children before, and someone who was married happily for a long time to say, "Oh, how about dating?" Because in the front end of my injury, it was definitely not on my radar. I skipped the sexuality class because it's like, "Oh, my God! That's the last thing on my mind." But, I think once you acclimate into living with the spinal cord injury and doing all the things that needed to be done first, you know, I did selfishly think about, you know, “where do I go from here as a woman?” You know, because I was 37 by then, and I still had so much love to give and receive in my opinion, but, you know, I have a finite amount of time. If I sit around and wait for someone to ask me, it may take a lot of time and I might not like that person, and so on and so forth. And so, I decided to give myself worth, that I wasn't going to put myself on the clearance rack, and that I am capable of speaking my mind. So, I actually did the asking so that I can pick and choose who I wanted to be with. Sexuality after injury was very scary for me. You know, I can count how many people I've been with, you know, in my entire life with one hand and have few fingers left over. So, you know, it's a very personal thing for me and I’ve got to say the way I looked at my body was very different. You know, with an injury, it's relatively low, and you know, I’ve had two C-sections. So, you know, my body has “life marks,” is what I say. So, I don't think I went in to the physicality of sexuality until like much into my dating, because it felt so much more private to me. In order for me to let somebody in that privately, like, I have to “know you-know you” kind of thing. So, for me, it took a lot longer than probably other people, because I needed to be comfortable to be that vulnerable.
I know that a lot of people always say, like, there's guys out there that don't care if you're in a wheelchair, and to me it's just like, well where are they? Because, like, I don't know, I find it, like, it does make a difference that now I'm in a wheelchair, I'm not going to say like, "Oh my god, I was the prettiest girl at my school and oh my god, I had all the guys." But back then I was, I felt attractive. And you know, now that I'm like this, I'm still look the same; if I'm still the same person, why aren't guys attracted to me now?
They’re attracted to who you are, not who you are (motioning to wheelchair). It’s a big difference. And, I learned that over the years, because this analogy—Barbie’s best friend is actually in a wheelchair, it’s Wheelchair Becky. You can Google this. And, there was this analogy—years ago this girl told me, and she said, “Why date wheelchair Becky when you can have a Barbie?” So my first thought was, “Oh my God, why date wheelchair Nick when you can have a Ken?” The reality now to this day, there’s many reasons why to date wheelchair Nick. Because, I bring much value and I have much assets, and I can bring much more to the table than just the average guy. And, I am in confident who I am, and I know who I am. It’s not being cocky, it’s being confident.
I was single for a few years and that in itself is scary. Trying to take this confidence that you’ve bolstered in yourself, and take it out to the dating world in your mid- thirties with a disability for the first time. I found that people were very receptive to me, and that once you start speaking with somebody, that they start paying attention to your character and less to what you’re sitting in, or how you’re getting from here to the door. So, that bolstered my confidence as well. And then I fell absolutely in love. It was beautiful. A storybook romance, absolutely.
Unfortunately, when I had my first situation, when it was about intercourse, you know, it was mechanical because I was reading; I was going through my mind in the manuals that we teach people about sexuality. “Oh, you got this communication, this is going to happen, and if there’s medicine.” So, it was kind of like, it wasn’t like it was back in the day. So, I went through a stage where I didn’t want to date. I was just like, you know, “Screw women,” no pun intended, not literally. But just forget about that, you know, I’m just going to focus on this, I’m going to be, because I can do that, I’m not even going to worry about that. But, you know, Goddamn, women are so beautiful, and they keep coming back in your life. And then you start accepting things, and you find other ways to make things fun and exciting.
You know, I was worried about what my wife might think. And not being able to perform, especially as a guy, I mean that’s your number one thing. I mean there’s nothing worse than feeling like your partner’s disappointed. But, like where as my wife, she wanted to make sure that I was happy just as much as she wanted to make sure that, or I wanted to make sure she was happy. But definitely at first, you’re like, “how does it all work?” And you’re trying to figure out how to get satisfaction, and it just comes in a different way and it’s just one of those things that takes time.
Well, as far as sex, like I said, I was a very sexually active person, and when I first woke up with the injury, the only thing I was worried about was why this catheter was in me and I can't feel it. To be honest with you, being on a wheelchair teaches you something else. It's like, for one, the feelings that you get when you see somebody that you're attracted to is not physical, it's mental—because I still feel the same way if I see somebody I like, I still get the same urges but the physical aspect doesn't happen. And another thing is, just like your senses if you're blind or something else, your other sense get heightened. I just learn my way around and found out you don't need to be pouncing on somebody for somebody to be feeling good.
When I first woke up, that’s one of the first thing I asked, and it was like, “no, you’re okay, you can still have sex, still make children, and this and that.” I was always okay with that, and like I said, based on my lifestyle before that with football and gang activity, it’s like I always had lady friends so that was never just a problem. I’d say about three women that I actually liked in college and one probably in Atlanta that I really liked. One reason she didn’t want to be with me, she was like—she loved me, and she liked the person, she loved hanging out, she loved talking, loved everything about me, but her main concern was would she have to take care of me once we got older. And so, that’s the one time that I know that really affected dealing with the wheelchair. But outside of that, most of the girls just thought—they look past the wheelchair—they just thought I was a ladies’ man, so it was kind of trust issues. But yeah, that’s like the only one that I can really say was affected by the wheelchair.
During the early convalescence, while Mike was still in those first few months, still living in nursing homes, he and I absolutely still cuddled, and kissed, and felt very boyfriend and girlfriend, and wanted to sleep together and be close to each other. And, the question of two things: sex and driving—when are we going to have sex, and when are you going to drive again. And those were, kind of, the two interesting things that we, kind of, covered. So, we talked about the options with several different medical personnel along the way. Probably when he got to Ohio was when we first started experimenting, so five months probably after the accident, with different, both with the Viagra and Cialis, options. He even did injectable, oh; I can't even remember the name of those now—Caverject, injectable, Caverject, and then a penile pump. So, we were absolutely all about what's going to work and how are we going to get this back.
Sex and dating. So, I got out of a long term relationship, I was in a relationship for about a year, so it must have been six months since I’ve been single. Sex and dating—dating right now is a little sparse, but it’s happening. I tried OkCupid, tried some online dating but there is something about that online dating that I just don’t like, it’s just super uncomfortable. So, now I just go out, and hang with friends and meet people as I meet them. And sexual activity, I have a friend that sometimes we have sexual intercourse with I guess. Marriage? Yeah, if I can find that lucky woman, notice that I said that lucky woman because I am the charm. And children, I’m not interested in children right now, so that will be something you would have to ask me in about 10 years.