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September 12, 2013 | 12:00 a.m. CST
When Max Lewis came out of Ragtag Cinema, a woman jokingly offered to rub his ears. He tried to turn his wheelchair to meet the generous fellow moviegoer, but it was too late. The woman had his earlobes in-hand and was caressing them. “Oh,” Lewis said, giving her a shy smile, “thank you.”
That night in August 2012, the theater on Hitt Street showed The Intouchables, a French movie that features Philippe, a millionaire who relearns the joys of life after a paragliding accident paralyzes him from the neck down. With the advice of a caretaker, he figures out how to enjoy sex again. Philippe hires a sex worker who massages his ears, one of the rare zones that remains sensitive to stimulation.
Lewis, a 46-year-old Columbia resident, also has come a long way in rediscovering a healthy sexual life. A diving accident in 1986 left the then-19-year-old Lewis paralyzed from the neck down. When the doctors told the young Lewis he would never walk again, the reality of the disability sank in. In his early days at the University Hospital, he thought he might never have anyone else in his life. He couldn’t imagine ever participating in and enjoying a sexual relationship again. He thought his life was over.
“But the problem is that my hormones, my emotions, my feelings, my attractions toward women did not stop,” Lewis says.
Once he understood that his paralysis was not what defined him as a person, he accepted his disability. He was quadriplegic, but giving up on life was not a possibility.
A stereotype about people in wheelchairs is that social life and romantic relationships are difficult at best and nonexistent at worst. People with disabilities desire to build connections with others just like anyone else. In addition to the physical barriers preventing certain sensations, an emotional barrier can create the loss of confidence and comfort that prevents them from exploring their social and sexual possibilities.
Rehab usually helps patients and their loved ones not only set but also reach physical, mental and emotional goals. The ultimate purpose is an easier reintegration into their communities. With efforts and communication, people in wheelchairs can overcome these barriers and embrace love, sex and their disabilities.
As part of his therapy at Columbia’s Rusk Rehabilitation Center, Lewis watched an erotic movie featuring a person with a disability. The therapists wanted him to know how he could be transferred from the wheelchair to the bed and what positions were safe and comfortable for him during intimate moments.
Four months after the accident, this was the first time Lewis had encountered any material about disability and sex. Although it required some adjustments, having sex seemed doable to Lewis.
During his stay at the hospital, he interacted with several female nurses and doctors, and because of his condition, he received a lot of attention and care. He became their friend, and soon, he fell in love with one of his nurses.
When Lewis first saw the nurse in the summer of 1986, he was still at the Rusk Rehabilitation Center and didn’t have much contact with her.
Three years older than Lewis, she was beautiful and smart, he remembers. But Lewis felt clumsy and inappropriate on his four wheels. He thought no one would really want to date him.
“My biggest obstacle was probably the fear of being turned down,” he says. “I am aware that there’s the disability aspect, but I’ve always thought that you’ll never know if you don’t try.”
In September, when he was able to get out of bed and go to rehab, he started seeing her three to four days a week. He’d talk to her about the hospital, the drugs, the pain, the therapy and about his life. He felt he could be himself with her.
Because nurses are required to take special care of the patients in rehab, the two spent several hours every day chatting, laughing and getting to know each other.
But nothing serious came of it. For one, she was a nurse — and nurses often develop a level of health care intimacy with their patients. Second, she was married.
“Hey, I’ll walk with you,” Lewis said to her one Friday as she started for the back door of the hospital to go home.
“I want to tell you something,” he said.
“Yeah?” she said.
“I’ve been wanting to tell you something for a while,” he said before pausing.
He finally added with more confidence: “I find myself being attracted to you. I really, really like you.”
“I appreciate it, Max,” she answered immediately. “It’s really nice of you. But I’m married, and that would be unprofessional for me.”
“I know that, but I just want you to know that I find you very attractive,” he said.
He had done it. He was proud and happy, yet he felt a little sad. “She was married, and she’d told me before,” he says. But he couldn’t help himself and continued pursuing her.
He told her again and flirted more and more with her. About a month later, the attraction was reciprocated. Although it took the nurse some time to accept the affection and feelings she had for Lewis, the two started dating and soon began a sexual relationship. He would wait for her to have a break, and she would stay after work for him. They hid; Lewis was in love. The relationship lasted six months and ended a short while after he left the hospital. She moved away from Columbia with her husband. He had to move on in life. Fifteen years later, Lewis met Wanda Jesse, to whom he is now engaged.
Cassy Kubala, an occupational therapist at The Rehabilitation Institute of St. Louis, has heard stories about nurses who had relationships with patients. The 30-year-old has, herself, been dating Jesse Cuellar, a quadriplegic, for more than three years since just after his accident. But he wasn’t her patient, she says. A therapist friend thought their personalities would match and introduced them after the Cuellar was discharged from the hospital.
Cuellar was 27 when he lost his balance, fell off a roof and broke his neck. Now paralyzed from the neck down, he is still learning how to live in a different body.
“He kind of got annoyed sometimes because I have the tendency to ask him if he’s doing OK,” says Kubala, who had never been with a quadriplegic partner before. But Cuellar’s answer is always, “Live in the moment; I’m fine.”
Kubala has always enjoyed working with people who have spinal cord injuries. They bring back memories of her quadriplegic grandfather who lived several years with her when she was younger. She only knew him in a wheelchair because he suffered a ruptured brain aneurism before she
Her familiarity with the disability and the fact that she’s now in a relationship with a quadriplegic man have made her a better clinician, she says.
When it came to having sex, she’s learned everything with Cuellar. “It’s definitely been a learning process,” Kubala says. Because her boyfriend is quadriplegic, she has to do the positioning and most of the hip movement during sex. With time and practice, they’ve found what works and satisfies both of them in bed.
“I can still pleasure him even though he doesn’t necessarily feel it,” she says. “And for him, he can still pleasure me even though he can’t necessarily control what’s going on or be as physical as he’d like to be.”
Teaching the partner of a person with quadriplegia how the disability affects sexuality is as important as teaching the person in the wheelchair, says Kubala. She monitors Cuellar’s blood pressure, a problem for many quadriplegics and paraplegics. An overfull bladder, urine drainage bag leg straps that are too tight, pressure sores or any minor stimulus can cause blood pressure to rise. Also known as autonomic dysreflexia, this complication can be life-threatening, Kubala says.
According to the website of the University of Miami’s Miller School of Medicine, “the stimulus sends nerve impulses to the spinal cord, where they travel upward until they are blocked by the lesion at the level of injury. Since the impulses cannot reach the brain, a reflex is activated that increases activity of the autonomic nervous system.”
Having sex sets off a rapid heartbeat that, if uncontrolled, can trigger a sudden change from very low to very high blood pressure and lead to convulsions, stroke, hemorrhage or even death.
At The Rehabilitation Institute of St. Louis, an education and prevention program puts individuals with spinal cord injuries into real-world situations prior to returning home. For example, many people who use wheelchairs need to learn about bowel and bladder management because they often cannot transfer independently and struggle with how to use the bathroom. Sex education is a small part of this program but is emphasized individually rather than as a group. Teaching the patients and their partners how to recognize symptoms of automatic dysreflexia is part of the center’s spinal cord rehabilitation program.
Kubala says in the past, patients have asked the institute if they could have privacy with their partners to try the techniques they were taught in rehab. Although the center does not allow privacy for sex, it does allow partners to practice the other techniques learned. Kubala thinks talking about sex to inpatients is essential because it could be more challenging for outpatients to figure it out on their own.
Dani Vanderboegh, a 29-year-old MU graduate student originally from the St. Louis area, figured out the sex part on her own. She broke her back in a snow sledding accident when she was 19, and she has since been paralyzed from the waist down.
After 12 hours of surgery and on morphine, Vanderboegh spent time talking to a quadriplegic woman who shared her room at the hospital. They talked about what life would be like for her outside the hospital. She knew her life had changed, and she was getting ready to confront the world in a wheelchair.
Although she was assured she would be able to enjoy intimate relationships despite the disability, Vanderboegh wondered if anyone would ever see her personality behind the wheelchair and be attracted to her. She thought she’d live in celibacy, but she discovered quite the opposite. Just a year after her accident, a young man asked her on a date. She knew she wasn’t interested in him, but she needed to reconnect with her sensuality. She also wondered if sex would be the same.
Once they began having sex, she realized they were not sexually compatible, and the relationship became awkward. At the time, she thought it was her fault because she was the one with the disability. After a month, she broke up with him.
She now realizes that her disability was not the problem, but rather the relationship. And she had learned something from the experience; she could still feel something between her legs. Experts explain that women with spinal cord injuries can achieve normal orgasms if there is some residual pelvic innervation, though orgasm remains relatively rare.
Because she accepted her disability and was determined to enjoy life, Vanderboegh started dating someone else. But a month into the relationship, a bacterial infection she had contracted in emergency care took her back to the hospital. Her boyfriend supported her the entire time, and together, they dealt with her health issues.
They dated for more than three years, enjoyed sex and even lived together. In bed, it wasn’t awkward, she says.
“I think he was just waiting for a red light,” she says, recalling the time when she was in bed with her boyfriend. “I don’t ever remember him asking questions. Maybe at some point: ‘Can you feel this? Can you feel that?’ But it wasn’t a big conversation.”
Lewis also didn’t have a big conversation with his fiancee, Wanda Jesse, a 47-year-old who works in the canteen department at Truman Memorial Veterans’ Hospital. At the beginning of their relationship, he asked her, “Hey babe, do you want me to see the doctor about getting some Viagra?” She said yes, and shortly after, they had sex.
Jesse entered Lewis’ life more than four years ago when he took care of a legal issue she was involved in. She remembers the immediate connection she felt with him. They didn’t date right away but kept in touch through friends and met occasionally.
Jesse kissed Lewis first. For a long time, they kept their relationship low-key because they wanted to see where it was going. After keeping it a secret for two years, the couple finally told their friends and family.
They got engaged last January and would like to live as a family, have their own house and maybe adopt a child.
“The biggest problem we have right now is that the bed is way too small,” Lewis says with a smile. They both live in Paquin Tower, but Jesse has a bigger bed, but Lewis says that the lift he uses to get in bed would not raise him high enough to reach her bed.
Despite the limitations, they know communication is the reason why it works between them.
With his fiancee, Lewis has been able to experience what experts call “paraorgasm” or “phantom orgasm.” Research shows there’s more than the physical response to orgasm — a person’s mind plays a role in getting excited and stimulated.
The Christopher & Dana Reeve Foundation, renown for its 2006 campaign that featured the Superman “S” shield on logos to raise public awareness about spinal cord injury, explains on its Paralysis Resource Center website that the orgasm occurs “through reassignment of sexual response to areas of the body unaffected by the injury. This is described as a pleasurable, fantasized orgasm that mentally intensifies an existing sensation.”
Earlobes and neck are Lewis’s sensitive zones that when stimulated can give him a lot of pleasure.
Jesse didn’t know whether Lewis could have sex when she first met him. For that reason, she doesn’t blame friends who ask whether she has ever been intimate with Lewis.
But sometimes reactions from people are more difficult to accept. Jesse’s brother and a friend have asked Jesse why she would ever date a man in a wheelchair. They think she could do better; they say she deserves better than sacrificing her life for Lewis.
But Lewis and Jesse are happy together.
“I think we have more of a happier and dynamic lifestyle than the majority of people out there,” Lewis says. “Personally, making love is about the gift of giving. When you strive and you aim to give pleasure to the other, that exponentially elevates your love life as long as that gift of giving … doesn’t abate.”