A Mature Love
By Roxanne Furlong

How does a marriage survive when complications make it doubly difficult to go on? When sex all but dies?

When Stacey and Duane first met in 1991 — they were 27 and 32 respectively — Stacey was working in a kite shop on the beach of touristy Marina del Rey, Calif. “My buddies and I had been invited to fly kites on the beach for a magazine photo shoot when we stopped in to buy supplies,” Duane says. “I thought she was cute. I paid with a check and she asked for my ID and goes, ‘Oh my gosh! Our birthdays are the same day!’ I knew then, she’s the one. That was the first time we met face to face.” She was dating someone else at the time, says Duane, “But I knew he wasn’t going to last.”

Duane invited Stacey to watch the photo shoot and noticed it was difficult for her to walk in the sand. “I just thought it was hard for her because she wasn’t a real muscular person,” he says. “I could see she really concentrated on what she was doing. She’d say, ‘Don’t talk to me while I’m walking!’”

They began dating right away. One night, while having dinner, he just came out and asked her why she walked the way she did. Stacey told him she was diagnosed at 16 with facioscapulohumeral muscular dystrophy. The most noticeable symptom was foot drop, but it was more complicated than that. She explained what FSHMD was and told him about the surgery she had to fuse her scapula to her ribcage — to give her better range of motion in her shoulders and upper arms.

“That really intrigued me because I’m a mechanical guy,” he says. “I was like, ‘Wow, they can do that?’”

They were married in 1993. Over the first 10 years of their relationship, Stacey went from walking on her own to using a cane, then a walker, then a scooter. By January 2002 she was using her first wheelchair, a power chair.

“At first it really didn’t seem like a disability,” he says. “She just didn’t walk as fast as I did, and I thought so what, and slowed down a little.”

In the early days, instead of walking on a sandy beach, they’d stroll the boardwalk. When Duane suggested they go bike riding, he rented a bicycle built for two and let Stacey steer. “She said she didn’t have the strength to pedal, so I told her she didn’t have to. I could see that it was tough for her. I wanted her to be in the front so she could steer. I told her she didn’t have to even try to balance it, I can do it. We rode it a couple times, but I could see that it was easier for her to be in the back. Then she could lean more on her arms and support her upper body.”

Duane loved her from the beginning, and that love never wavered, even as her disability progressed. It was something else that threatened to bring their marriage down.

Facing Reality
Stacey started drinking in junior high, raiding her parent’s liquor cabinet. “I would put all the different liquor in a jar and bring it to school and drink.”

“I can’t ever remember feeling I was pretty enough,” she says. “I always felt insecure about the way I felt, like when I was dating.” It was also related to how she felt about her MD, that persistent feeling of being less than.  “Alcohol made me feel better, more attractive, more daring. It gave me that bravado that I was lacking, false confidence.”

Then her mom, diagnosed with breast cancer, died when Stacey was 20. “It was the single worst thing I could imagine happening. She was my best friend, my biggest supporter. She got me through surgery, she got me through everything.”

Another reason to drink. At 24, she got a DUI with a blood-alcohol reading of more than twice the legal limit.

After their marriage in 1993, like any newlyweds, Duane and Stacey had an active sex life. In 1997 Duane’s job brought them out to Florida to work for Disney, installing Animal Kingdom. Duane’s two boys from a previous relationship (he also has a daughter from an early marriage) came to visit them. It was during this time that Stacey’s alcoholism grew worse.

“She didn’t drink around the kids, she was a closet drinker,” Duane says. “She’d have dinner ready, we’d eat, she’d go to her room and drink. First it was a lot of wine, then it turned into hard liquor until she was drinking vodka straight. She had a room upstairs, not the greatest situation, had a TV up there. It was easy for her to get away from the family, but she never drank herself into a stupor in front of the kids.” It became apparent to Duane that the problem was getting worse.

“Her drinking was hard,” Duane says. “For me, a lot of it was fear, fear of her falling. She was fairly mobile then, and I was so afraid of her going into the bathroom and falling and smashing her face on the sink or something. I played the role of ‘the Protector’ to the point where she’d say, ‘I need some more vodka’ and I ran out and got it.”

Protector. Enabler. Ironically, the motivation for both roles comes from the same place — a heart that loves and wants to be loved.

In time Duane hit his breaking point. One night, back in their Northridge, Calif., home, after Stacey begged him to get her more vodka, he reached down into his gut and told her, “I’m not going.”

Desperate, a drunken Stacey got on her scooter at 10 p.m. and rode down a busy street to the liquor store. “That was the hardest point in my life, to let her go like that,” Duane says. “It was dark outside, a miserable night, it was late. Our neighborhood is fairly safe, but it was very hard for me to just sit at home and let her go off by herself. I kept saying to myself, ‘I should follow her, I need to know she’s OK.’ I wanted to be the Protector. To this day I wonder how I did it. I should have disabled her scooter so she couldn’t go,” he says. “But she would get downright nasty … that wasn’t the Stacey I knew, it wasn’t the Stacey I married.”

As difficult as it was, Duane’s refusal may have been just what Stacey needed. “He was a classic enabler for years,” Stacey says, “and he finally said, ‘I’m not buying you alcohol anymore’ — and I know this was really hard for him, plus I’m bossy. I’d been drinking for a week straight. I couldn’t drive so I got on my little scooter and drove down Reseda Boulevard to buy a couple bottles of vodka. I was crying all the way there, crying all the way back. I hadn’t had a shower in three days, it was disgusting. The next morning I woke up, came to, and called AA.”

On April 20 Stacey will mark nine years of sobriety. Today their marriage is solid, but stability didn’t come easy. With the drinking came a lack of libido for Stacey. During the last few years of her alcoholism especially, their marriage suffered, so they went to a counselor. Anti-depression meds wiped out whatever libido she had left.

“My take was, what am I doing wrong?” Duane says. “I just didn’t understand.”

As Stacey made progress and went off of her meds, their sex life rekindled, but they have learned that a deeper, more mature love is what holds them together.

When they make love now, Stacey says it’s always in bed — “Not up against the wall or anything terribly exciting like that,” she jokes, “it’s missionary style.” Duane holds her legs up so they don’t fall to the side. “The way that he is with me,” Stacey says, “no matter what, he always wants to have sex more often than I do. A lot of that is my age, I’m 47, haven’t had my period in almost two years. I’m probably in menopause. Or being too tired. But the fact that he always wants to have sex makes me feel desirable.”

Tired or not, she says she tries to remember that if she’s saying no for the third or fourth time — “if I was the one wanting to have sex and he was saying no, I would feel bad. And every time we have sex I’m glad that we did.  Maybe I don’t want to going into it, or I may do it because I want to make him feel happy, but once we get started, he always brings me to orgasm, and I’m happy I made the effort.”

“I don’t press the matter anymore,” Duane says. “I throw hints out there: ‘How about we have a date night?’ But I don’t want to push it. It’s not what our relationship is based on, and I don’t want it to be based on that.”

During the times when they’re not sexually active, how does he satisfy her need to feel attractive?

“I tell her that she’s beautiful and that I love her all the time, and I’m not saying this because I feel I need to, but because it’s true,” Duane says. “In my eyes she’s beautiful. She has people tell her that on the street and I say,  ‘See? It’s not just me.’ Yesterday we went to a little football game for our grandson, and she said she didn’t have a hat, so I said, ‘well let’s go to Target and we’ll get one.’ I grabbed this little fur hat with ears on it, little stubs.  She put it on and I was like, ‘That’s it! That’s the hat.’ She said, ‘It looks funny,’ and this lady walking by said, ‘No, it looks cute.’ I said, ‘See? She even thinks so!”

A Mature Love
Ever the Protector who keeps an eye on the way his wife moves and anticipates potential problems, Duane, with his acute mechanical mind, recently designed and contracted an accessible bathroom for Stacey, even though she worried it would diminish the resale value of the house.

“I look to the future and wonder about her disability,” he says. “She tells me, ‘You don’t realize how bad this is going to get.’ I say it doesn’t matter, I’m going to be here and I’m going to make it so you can do things. It’s all about what she can do, not what she can’t do.”

It’s also about a love that has lasted. “Stacey, she’s just a beautiful woman to me, she always will be,” he says. “I know she doesn’t like that I have to help her in the bathroom or help clean her up after an accident happens. I just do it, it doesn’t matter. It’s all part of our life now.”

As is something as seemingly simple as crossing a street: The Protector looks across the street to see how his bride is going to get up to the other sidewalk. Is there a curb cut? If so, where is it and is it too steep?

“I’m always looking to make sure the path is clear.”

But, now and then, an underlying fear surfaces.

“I still have a fear that I’m going to come home and find her drunk, like many times before,” he says. “I’ve never expressed this to her. But on days when I get home from work and the house is dark, it flashes in my mind, ‘Oh shit! She fell off the wagon and she’s drunk somewhere in the house!’ But I’ll find her in bed watching TV. It’s the last thing in the world I want to have happen, she’s fought so hard to this point. I don’t think she’ll ever touch it again, it’s just in my mind.”

Now 47 and 52, Stacey and Duane spend every Saturday with their two grandkids. Though they don’t travel often — their airport has tarmac access to flights that requires dealing with stairs or weird ramps — Duane says he’d love to take his wife on an Alaskan cruise. But spending time in the comfort of their home where they will grow old together is just fine with him.

And with her: “As we get older we change,” she says. “People get heavy, people get wrinkles. He quit smoking a few years ago and he gained some weight, and I was like, ‘Oh, I wish he’d lose some weight,’ but then I realized, How dare I!? He loves me as I am, I will love him as he is.”

Sounds like they are in this relationship for the long haul.

“Over the course of 20 years there’s been a lot of points where things were not so good,” says Stacey, “but we weathered those times. I can’t imagine being without him, he’s the person I enjoy spending my time with. I know I’m worthy of his love, but I don’t know what got him through all that drinking. I think it’s hard for him to express his feelings about that. Why did he stay with me? Why does he love me so, and how can he still find me attractive after having seen all that?”

For Duane, the answer comes easily: “Because I love her.”

Finding What Works for Your Sex Life
By Ellen Stohl

Candlelight flickers across the silk sheets. Perfectly proportioned lovers embrace and fall to the bed; rose petals scatter across the room. The camera zooms in on long, lean legs tangled together in sheets.

In mainstream television and film, the sex scenes are always so elegant. The lovers have incredible physical interactions that last for hours. Their lovemaking involves a variety of Cirque du Soleil positions and multiple orgasms. Yet once finished, the room is barely mussed, and the lovers emerge with nary a hair out of place. It is all so graceful and tidy; it is all so unreal.

Bobby Rohan shares a dance with his wife, Ellen.

Bobby Rohan shares a dance with his wife, Ellen.

Real sex, if it is going to be good, is messy. It involves a lot more than inserting tab A into slot B to achieve the big O. It involves awkward positions, strange noises, bodily fluids and good communication. This is especially true for people with disabilities.

Dr. Linda Mona, a licensed clinical psychologist who has advocated for the sexual rights and sexual expression of people with disabilities for the past 15 years, believes there is no “right or wrong” way to have sex. The key is communication. Being able to talk about what works and what doesn’t enhances the pleasure we can give to one another. There are no “norms.” Nondisabled people and people with disabilities express themselves sexually in a variety of ways. “We have got to let go of the ‘movie script’ and find our individual sexual voices,” Mona says.

Mona, who has lived with her mobility impairment for over 40 years, became interested in the topic of disability and sexuality when she was a teen. “My high school journalism assignment was to interview someone at a teen advocacy program,” she says. “During the interview I realized all of the issues the director of the program was talking about were not on my radar as a disabled teen. I had never thought about my sexual health. My experience as a teen was very different than nondisabled teens. It is fair to say I likely subscribed to the general belief that people with disabilities were asexual, and even if we could have sex, who would want to? It had not occurred to me to think about those issues.”

After the interview the director encouraged her to become a peer counselor. During that time she met a woman who specifically worked in the area of disability, relationships and sexuality. She recalls how this chance encounter changed her life. “She encouraged me to work with other teens and became my mentor. I had never met another woman with a disability, and I realized that teens with disabilities had similar yet different issues and needed information, advice and support. This led to my career and helped me become an advocate. Besides, sex stuff is just fun!”

And sex should be fun, regardless of physical dexterity. It just takes some creative thinking along with the good communication.

Bobby Rohan and his wife, Ellen, agreed to discuss with me the evolution of their relationship, sex and all.

“Ellen and I were friends for about six months before we became romantically involved,” Bobby says. “That friendship gave us a solid foundation to build from. We’re not sure who kissed who first, but once the kissing started, things happened rather fast.”

Like most men, Bobby was hoping to round third the night he invited Ellen to dinner. “I was going to a fundraiser and thought getting a hotel was a good idea; I did not want to drink and drive. I also thought maybe I’d get lucky — and I did!”

Ellen laughs as she remembers their first time. “Bobby was my first wheeler.”

“And last,” Bobby chimes in. “Once you go quad, you never go back!”

“I thought Bobby was very attractive and very sexy,” Ellen says, “but I was a little scared. I had been out with him enough to know that somehow he peed out of a tube. I thought he might have a Foley catheter inserted in his penis. I was concerned that I would have to take it out and put it back. So once we started fooling around and he told me he had Viagra, I asked him about the tube. He showed me his superpubic catheter, where a tube is inserted into his bladder through the abdominal wall. It had nothing to do with his penis. I was a bit relieved, but even if he had had an indwelling catheter, we would have dealt with it.”

The Viagra helped give Bobby the wood he needed to hit a home run that  ?night, and it alleviated some of Ellen’s initial concerns about sex with a man who uses a wheelchair. Ellen blushes as she talks about what made that first night so special. “The neatest thing about that night was Bobby’s confidence. You know how when you’re first with someone, you worry about that little roll of fat. But here was this guy whose body worked differently, and he was totally comfortable with himself. That self-assurance made me feel more comfortable with myself. We were very open with each other and very willing to find ways to please one another.”

“Disability alters what works,” Mona says. “Positions change, sensitivity changes. People are forced to reassess their values and find ways that work. It can be tough, but it is not impossible. People with disabilities need to make themselves open to the possibilities that still exist. Being sexually fulfilled is about expanding choices — what’s available, what’s out there, and what works for you. Then — experiment, experiment, experiment.”
Bobby and Ellen began experimenting more as their relationship matured. Ellen recalls that their initial encounters were pretty tame. “We started out using a lot of Viagra and had a great time, but we weren’t as creative as we are now. Back then we focused more on traditional intercourse, and for that, there is really only one position that works — me on top.”

Bobby and Ellen Rohan keep their sex life fresh by experimenting.

Bobby and Ellen Rohan keep their sex life fresh by experimenting.

But after about four years, the Viagra wasn’t working as effectively, and it was giving Bobby headaches and heartburn. He had already come to terms with the fact that sex after his injury was never going to be the same, so he and Ellen weren’t about to let “ascension deficit disorder” ruin their connubial classroom.

Bobby attributes their ever-expanding sexual repertoire to willingness, trust and good communication.

“It’s great that there are so many ways to achieve sexual pleasure,” he says. “There are a lot of options available if you’re willing to explore. We have become quite well-versed in oral sex and toys. I like the long glass dildo because I can either hold it or put it in my mouth so I can manipulate it and control her pleasure. We also found the Cyberglass Head Gear Chin Strap and the Accommodator — that uses an elastic strap to secure the latex dong right to my chin. It seems goofy and looks ridiculous, but it gives me control and helps me be an active participant. I can tease, thrust or wiggle around to heighten her pleasure.”

But Ellen is not the only one who is getting off. Bobby assures me that his physical satisfaction is a priority, too.

“When we have intercourse, I don’t ejaculate all the time; it is about 50-50. However, I feel a physical release almost every time. My mind plays a big role in the process. My neck has become hypersensitive, and sometimes when Ellen kisses me there, I can feel waves of pleasure. If we want more spontaneity, we often use dirty talk and roleplaying to get our minds in the mood, then she’ll self stimulate, kiss my neck and we both walk away with an orgasmic-like release.”?

Finding What Works
Mona thinks it is important that people with disabilities take charge of their sexual gratification. She says our thinking about sex and disability has changed. “At first we were focused on letting society know that we were sexual and we ‘did’ it, but that focus has shifted from do we do it, to how, and how do we make it fun. Too often we fixate on functional mobility and forget it is supposed to be fun and filled with pleasure. We need to think about adaptive equipment and strategies to make sex more pleasurable, and what is pleasurable is really individual.”

Jules discusses her sexual journey. “From the time I was paralyzed overnight by transverse myelitis, life felt like one loss after another. Late one night in the hospital bed, shocked and upset by so many losses, I snaked my hand down under my PJs for the habitual soothing orgasm to help me sleep. Bingo! Tally up another loss — I couldn’t even tell where my hand was! I figured there was no chance at anything being pleasurable again. My body didn’t excite me anymore. I doubted it could excite anyone.”

She laments about her situation back then. “When I was discharged and got home, my then husband and I tried our ‘usual’ fail-proof positions and techniques. Nothing. I couldn’t get on top anymore. He didn’t have the imagination to see where I could feel things. I had two choices: put a damper on the whole thing or fake it. After about six months of pretending, I went back to the granny panties and nursing bras that I had worn before TM and we became unhappy roommates.”

Mona thinks Jules’ situation could have been avoided if she and her spouse had been better educated about sex and disability. “What we need to do, as educators, is let people know it’s not easy, and we have to give them hope. Simply telling people it’s all going to be OK is misleading, because it will be tough in some areas. Different is always seen as ‘less’ or ‘worse,’ and not just different. But that is all it is — different. Life can still be full and have tremendous quality.”

Now Jules agrees. “It took years and a divorce before I met a man who asked the all-important questions: Can you feel this? How about this?  Does that feel good? He also bought me my first post-paralysis pair of high heels and convinced me that I was still beautiful. I not only had an orgasm with him, but I had multiples. Conclusion? It is all about the relationship. I have finally found a man who cares about my pleasure as much as his own. Now I am happily married to high-heel man Dan.”

No doubt a solid relationship leads to the best sex. If you don’t trust your partner, it is difficult to be honest and let go. “Trusting who you are with and trusting yourself is the first step to a healthy, happy, orgasmic sex life,” Mona says. “The meaning of sex is very individualistic. It should not be a mission to recreate soap opera scenes. It’s about normalizing that sex is a part of life. We want to make sure that people with disabilities have the education and options to take their sexual identity and activities to whatever level they choose.”

For myself, I would have to agree. Too often my early relationships were fraught with trying to imitate the Hollywood ideations of sex. I was embarrassed by my incontinence granny panties and tried to hide them. Not easy when you have a pad the size of a pillow between your legs. God forbid a date would try to grab my ass during a makeout session. I “ran” when that happened. I even hid extra “sexy” undies in my seat cushion so I could change if things got intimate. But then I spent the rest of the night worrying whether I was about to orgasm or pee. It wasn’t until I met my husband that I found the real joy of sex.

Like Bobby and Ellen, and Jules and Dan, I discovered good sex is all about the right partner. The right equipment helps, too. Finding out what you like should be a creative adventure.

Mona has spent her career research-?ing these issues. She has teamed up with MyPleasure.com to help educate people with disabilities about sex using articles, recommendations and specific advice. You can go to the website, click the education tab and be ready to design your personal pleasure map.

I did. I got the advanced nipple suckers since I have lessened sensation in my breasts. These babies are like little suction bulbs for your boobs.  They’re teasingly soft and heighten sensation. I also tried out the seven-function classic chic vibrator with pulsating action. This item is great because it’s waterproof, so I don’t have to worry about accidents, and the pulsating action ?provides random vibrations so I don’t go numb.

My partner and I tried the Liberator Wedge/Ramp Combo. I found a variety of positions that not only made sexual interactions more pleasurable, it made them more comfortable. We used the wedge to lift my hips; it allowed better penetration and reduced the stress on my lower back and neck. The wedge/ramp are so helpful with body alignment that I’ve started using mine to help with adaptive yoga positions.

We have been experimenting in other ways, too. I even tried the 10-function Risque anal plug. This stimulates the anus and can be used in conjunction with vaginal intercourse to heighten sensation for you and your partner. But be careful. Anything in that area can get messy.

Then again, good sex is messy.

The Ultimate Guide to Sex and Disability, by Miriam Kaufman, M.D., Cory Silverberg and Fran Odette.