This is super long and unedited, but if you want to read about my sexlife, this is probably your only chance.

...and if you don't want to read about my sex life, skip it.

I just wrote a long series replies to a long series of emails, and I'm just going to post it.

The email is from someone I know and it was a part of a several larger dialogs, so I'm condensing (ha!) and cutting a pasting. It says in part:

I know this is none of my business, but I'm confused. You can tell me to go jump in the river, but I'm just going to ask. Are you and D a couple that are romantically linked? You say you've been together for 12 years but then you talk about dating others during that time. I'm just going to ask this, and again, you can ignore me. You talk about your lack of sex life, then you talk about you and D as a couple, then you talk about dating? Do you and D have it set up so you can date other people because he can't have sex? Are you friends with him and having sex with all those other guys? Would you two be married if he weren't disabled?I'm uninformed, so I'm asking to educate myself. I'm not trying to judge you. Something doesn't jive right for me with your blog.

And Demi Moore? Really? Was he friends with Bruce or Ashton? What did he say about her?

Well, first of all, I never said I had sex with all those other guys. Can I just get that in right off the bat before it makes me crazy?  I know I'm being defensive here, but I did not, in fact, have sex with every guy I ever dated, even some of the ones that were more longer term relationships. Okay? Okay. Sigh. Now I feel better.

Second, yes. Demi Moore. But neither Bruce or Ashton. This was in-between. I think the guy's name was Ollie something. Someone who reads more People Magazine than I do can probably figure out who it was. D.R. was heavily involved in a martial arts organization that this guy was also involved with, same for Chuck Norris. And get ready to laugh: all he said about her was that she wasn't that big of deal and I was better looking than her. Translation: Lisa, please accept this colossal bullshit lie of a compliment so you will forgive me for sipping cocktails in beautiful mountain resorts with drop-dead gorgeous actresses and rich people rather than spending my week saving you from the ghetto bus you have to ride to your ghetto job.

Okay, moving on now. Many other bloggers have written about this issue you raise about confusion with aspects of their stories. Autobiographical writing is extremely tricky. You want to tell the truth, but in the end, it is only your truth through your perception of reality. You want to do it in a way that doesn't hurt others and invade their privacy, but that is a land mine that as hard as you try not to, you will eventually inadvertently trip at some point. You also have a limited amount of space and time to write (and limited audience in that people will only read so much) so you round corners and edit to make things fit nicely into the topic at hand. I've been told many times that my posts are too long and go off on too many tangents. I know this is true. But I keep trying to make sure all the loose ends are cleaned up and it is impossible to do.

You end up writing not your life story, but little pieces of a huge jigsaw puzzle. Then you round off the rough edges of the pieces to make it fit nicely into the current topic at hand. Then eventually someone comes along and says, "this puzzle piece doesn't fit with the one you wrote six months ago." And they'd be right. This happens in real life, too. For example, several years ago I went with D to look at a house that his parents were interested in buying. His mom introduced me to the real estate agent as D's wife. I let it go. When was I going to see this real estate agent again? I was just a peripheral part of what was going on, the buying of someone else's house, so my marital status was irrelevant. Then, a year later, my parents used the same real estate agent to buy a house. I met him again and he asked me about my husband. "Your HUSBAND!" my mom exclaimed. I politely said that D and I were not married but just lived together. My mother said something to the effect that we were just friends and roommates. Both the mothers come from a generation where there needs to be an explanation for a man and a woman living together. They both took two different tactics to smooth out their own perception of reality. I let it go again. Another year passes. I meet this same real estate agent on the street in my neighborhood I'm now living in with my dad. I am visibly pregnant. We small talk and I end up telling him that I am living in my father's house. With D? Well, no. He says nothing more about it and we both go on our way. So, who knows what he thinks, right? At what point am I supposed to sit down with the real estate agent and sort it all out for him, you know? Your life circumstances are framed by other's own perceptions of them. It is easy when you fit the mold. Like if I was married to D and we lived in a house and had children. But since I don't, and I can't explain everything to everyone every time, I know that we are going to cause confusion.

That is part of the reason that I have a blog. So at least somewhere I have a forum to tell people what is really going on. At least autobiographical writing in a blog is done in real time with a forum for other people to comment. There have been a few occasions when I have written something and real life people with comment or email me and say, "That isn't the way I saw what happened that day." or "That was not what I meant by what I said." This is a good thing, because then you can modify your blog to make it more accurate. I have done this at times. But it is still tricky.

Your confusion about D's and my relationship probably comes partly from me and my rounding of the corners of entries so that they don't exactly fit with other entries to the close observer. But it also comes from what I assume is your perceptions of reality that are different from my reality. You assume that D and I can't have sex or can't have a relationship, or have a compromised relationship that in some way needs to be supplemented by my dating other men. You are not the only one to assume this. I have fielded questions for several years from people (strangers, friends, family, even professionals in the rehabilitation field) about D's and my sex life. People think they can come right up to me and assume things out loud about us all the time.

Interestingly, I have asked D if people make these kind of comments and assumptions around him and he says that no one has really ever asked him about his sex life except for his mom, who has been known to paper clip articles and even advertisements for sexual function gadgets and medications for him. (For which he says has scarred him for life and cringes in horror whenever she does stuff like this. I just think its hilarious. If I have to field the sex topic from the public, at the very least he should have to have to deal with his mom.)

So then this is hard because on the one hand, I don't have a strong desire to go on and on about my sex life on my blog. But on the other hand, I think disability and sexuality should be discussed. I think it is stupid that it is taboo, I think that disabled people are thought to be asexual beings and that isn't right. I think there is a lot of misinformation regarding the physical functioning and specifics of how or whether disabled people can have sex. But then, do I want to put my life out there as the poster child of disability sex? Not so much. But obviously I blabbed about it just incoherently enough to confuse you, and I do appreciate that you just came right out and asked, so I'm going to try and answer your questions a bit here.

First of all, a bit of disability sex 101. I'm going to share this as long as we understand that I am writing not specifically about me and D but about people with spinal cord injuries in general. This is what I've learned from books, hospital staff, other partners of people with spinal cord injuries that I've talked to, personal experience, and whatever else. Here is a funny story to start us off:

When I was in college, before I met D, I was asked to be on a panel for a human sexuality class. It was me, a guy who was shot in Desert Storm and was a paraplegic, another women with a disability that completely escapes me now, and a high quadriplegic middle-aged man. I don't know why I was even asked to be there. Blind sex is no different than sighted sex, you know? So mostly I just talked about dating. The para, who was pretty newly injured, said point blank, "When you are in a wheelchair, face it guys, you just Don't. Get. Laid." He said it sucked but that's the way it was. I took it as word.

Then not 15 minutes later, the quad takes his turn to talk. He was much more disabled looking and actually much less good looking than the para. He happened to be doing his doctorate research on SCI and sex. So he actually has a VIDEO of himself having sex with someone that he shows. The TV was behind me and I couldn't see it anyway. To tell you the truth, I didn't even look. But I could tell that this quad guy had just rocked the world of the newly paraplegic guy. He was next to me and his mouth was just gaping open. And then, if this weren't all funny enough, my guide dog-- who had been resting quietly under my chair--all the sudden got up and started barking and growling at the video. It was hilarious. I actually think my guide dog kind of broke the mood of embarrassment we all felt and lightened everyone up. But, anyway, that was the first time I ever considered the possibility of guys in wheelchairs being able to have sex.

So, guys with spinal cord injuries can have sex. Depending on their level of injury and severity of injury, they can either have just plain regular functioning like anyone else sometimes. Or they can have erections but not ejaculate, or they can have trouble with erections, yet ejaculate, or they can do both yet they have a very low or no sperm count. Wheelchair does not equal no sexual functioning in spinal cord injured men. However, they can have a myriad of different levels of functioning. Also, many men have success with things like medications for erectile dysfunction. I am not going to tell you what D's functioning is specifically, but I will say that we did go the infertility treatment route because he had very low sperm count.

From the woman's perspective, (I'm considering what other women have told me or I have read about in addition to my own experiences) it's not as big of deal as you think. It's not that different. You work around things and really, there is not that much you really have to work around. In addition, there is the possibility of certain advantages, in that hey, it can--ahem, be all about you--you know? That's not such a bad thing. I know I'm going to come off sounding slutty here, but you know where I've only ever seen a problem? It's when a woman has only ever been with a man with a spinal cord injury and she wonders what it would be like with others. I understand the romance in saving yourself for just one person, and I respect people's decision to remain virgins until marriage, but sometimes I just think there is a lot of advantage to having a bit of experience and seeing what's out there. You get to see what the differences are and see what you really want. You get to decide for yourself what is a big deal to you and what isn't. Because, although some men are shall we say, "naturally talented," the vast majority of men can be trained in. If you really love 'em and are willing to provide on the job training then there is really no make or break thing about sex. I'd like to tell these young girls that who are dating a guy with an SCI and are curious about others. It's not that big of difference. Really. And as far as my bitching about my lack of sex life...well, in the past two years, I've been pg, had a huge healing cesarean scar, or had two little rugrats around. D has been hospitalized for months on end. On top of that we live in different locations and lack childcare. You do the math. Our circumstances are far beyond a little old spinal cord injury. Most of the time it is not a big deal to me in the least. But, yeah. Sometimes I go for long stretches where I miss it. Many times it has more to do with missing his presence and affection than the actual act of sex.

People don't see disabled people portrayed in sexual ways anywhere in the media so they can't (or don't want to) imagine that it exists. I think of myself and my perception of gay (male) sex over time. I don't remember ever having a problem with lesbian sex. But when I was younger, I thought male sex was disgusting to think about. Well, lesbian sex is all over the media because of the patriarchal obsession with watching sexual acts without having to watch other men perform it, so lesbian or female-female sex is more accepted and everywhere. Just look at any Girls G*N* W*LD commercial. Male sex has not been portrayed much. Now that I've known some gay men personally and have seen more men kissing and stuff on TV, it is much more acceptable to me now. I'm desensitized to it, or sensitized to it, whatever the case may be. It seems much more natural and healthy to me now. If disabled people were portrayed in more sexual ways, people would also come to see it as natural and healthy.

Switching gears now, finally I'll give you a quick and dirty chronology of D's and my relationship. This will be full of rounded edges, by the way.

In 1994, I met D and his brother, Q. Q was interested in me. I liked Q. But Q was a former marine and at the time I had a Marine-phobia, due to the fact that I pretty much associated people in the Marine corps as being people who would rape me. (I wrote a lot about this on my other blog, and it was so long ago I don't really feel the need to talk about it much anymore. But this was a date rape situation that happened to me in '89. But besides that, what is it with all these marines always raping people? It's not like I was totally out in left field here.)

Because of my Marine-phobia, I drafted D into being Q's and my constant chaperone. This is illogical on many levels, as Q had never done anything to deserve my fear, and on the outset, D had never done anything to earn my trust, either. I just felt like wheelchair = safe. Like just because he couldn't overpower me meant that he could save me from someone who could? Anyway.... Then I found that I really liked hanging out with the both of them much more than I liked hanging out with any one or the other. So then I tried to figure out how I could frankenstein them into one morphed together perfect boyfriend. Q was fun and outgoing and kind of adventurous. D was quiet and reflective and mature and intelligent. I wanted all of it. But that didn't work for very long, and I needed to make a choice. I highly suspected that Q would be over his infatuation with me in about six and a half more weeks time, if even that long. That's just the way Q worked. And I was getting to understand more about D and his disability. So I chose D. It took D a little longer to choose me back, but he did. By fall of 95, we were dating.

We dated for two years exclusively until 97, when we both moved here. He moved to school two hours away, and I moved to the city to work. We decided to stay friends but give each other the freedom to see other people and see what would become of our new life. During this time, I dated D.H. and J.R. and had a brief sequel with N.O. D heard about all of these guys. We talked nearly everyday.

Which was a problem. But made me realize that D would probably end up being my true family. I realized this slowly, over time. D had came up and stayed with me one night when he had to come to the doctor or something while J.R. was living in my apartment. J.R.said he was fine with it. D couldn't get into my bathroom himself at this place, and could only sleep on my bed. So I asked J what he wanted to do. He could sleep with D, I could sleep with D, or he and I could sleep out on the living room floor, but he would have to tell me when D needed to get up and go to the bathroom. J chose to have me sleep with D. So I did . With the door open. The next morning, D and I were talking and J was sulking in the corner. Later, I asked if he had a problem with the sleeping arrangements. He said it wasn't that, it was that he was watching D and I finish each other's sentences, know each other's thoughts, and live on each other's vibe like J and I had never been able to do. He said that he (J) was the wrong guy for me.

I protested, but D.H. and N.O. said the same thing. Except without the sulking. I eventually started thinking that maybe they were right. I kept coming back to D. In late 2001, we moved in together and I have not dated anyone else since. D and I have never gone more than about 3 days without speaking in 12 years. We have never gone longer than about 6 weeks without seeing each other and those were from out of town hospital stays.

Our relationship is not perfect and it has been a lot of work. But most of the time it works. The wheelchair aspect of it is not a big deal, but the health stuff has been challenging to get through. We are committed to being a family and raising our children together.

Would we be married if we were not disabled? Impossible to say. It's like asking if you would be with your husband if you were born in Africa to AIDS infected parents. You'd be a completely different person. We do not marry specifically so that D can keep his military health insurance that he receives because his father is a retired marine and he is considered a disabled Dependant. If we married, he would no longer be considered a dependent. The loss of that insurance would be financially devastating and would be unrecoverable. So there we are. A better question to ask would be if whether there were decent health coverage in this country would we be married? Possibly, though I'm not kidding when I say I like being single. I don't think we need the government to give us a piece of paper that tells us we are a government approved family. We already know we are a family.

Comments

[AmericanFamily]

I am absolutely amazed I have anything to add to this post, but I do.

I watched Murderball with my husband and there is a part where they start talking about quad sex. I have to admit it was right about the point in the movie where I started wondering if they had any functioning left in that area.

After they started talking, it was very clear they could get busy. AND, these guys are HOT. Really Hot. Amazing athletes, kind of bad boyish. Hot.

At that point, I turned to my husband and said, "Dude. I would TOTALLY do those guys. I bet they have groupies after this movie." I bet they do have groupies too. Damn were they hot.

That reminds me that I want to look up when the quad rugby competition comes to town because that was a really interesting sport too.

[American Family]

Oh, and good for you for getting some. No reason to be embarrased about that at all.

[baggage]

What American Family said. No reason for you to be embarrassed. I loved your post. Thanks for taking the time to explain things.

[Lisa]

Oh, I'm not embarrassed about getting some, I'm just embarrassed about writing about it!

Yeah, Murderball, Amber...some of those guys were hot! It has gotten some critisism for being a bit masogynistic and I did cringe when the girlfriend said she had a mothering instinct. I am not D's mother nor do I want to be!
But I was glad they did at least talk about it.

Thanks, ladies!

[art-sweet]

This was a great post.

Thanks lisa, for making what are to me (at least for right now) abstract concerns, very human and very real.

[luolin]

I'd give a shout out to the sexuality section in my copy of Our Bodies, Ourselves. To the extent that I thought about disabled people's sexuality in the past, it was because it's included in that book. (Now I'm trying to remember if the character in the wheelchair in Dykes to Watch Out For got any sex.)

I was a little confused when you mentioned lack of sex life, since I figured the disability wasn't the problem. I don't know why the whole mother-of-twins/partner in the hospital thing didn't occur to me.

[Linda]

Here I thought I was going to be all unique and mention Murderball. What a great movie. And I agree with the hotness.

[bint alshamsa]

I just thought I'd chime in and add that I am also of the opinion that those murderball athletes were pretty dern sexy.

Thanks for talking about the sex and disability issue. My partner and I are in a similar situation regarding healthcare. If we got married, I'd lose my coverage and seeing as I have cancer, lupus, and a whole host of other problems, there aren't any insurance companies that are willing to cover me at any rate I could possibly ever afford. At first it really bothered me but now I'm pretty okay with it. I can't imagine things being much different even if we had spent one day of our lives all dressed up and paraded in front of our families to prove we really are serious about each other. If nobody has caught on to that fact after all these years, then I don't think getting married would change anything.

If it works for you guys, then I'm glad that you've found happiness.

[Kai]

Great post! Thanks for sharing and educating all of us.

I'm TOTALLY checking this movie out now LOL

[imfunnytoo]

This was the greatest post to read.

Someone else who had/has similar experience, and who figures "workarounds" are no big deal. :)