Also this month: How to Keep the Flame Burning
I have a confession to make: I’m guilty of perseverance. Since my injury 18 years ago, I’ve been fortunate that my general trajectory in life has been without insurmountable roadblocks. Following the initial wallop of my spinal cord injury and recovery, I’ve had the privilege of reaching a place in my life where I’m confident, self-assured, productive, happy and have achieved a lot … all on wheels.
I was therefore completely caught off guard over the last few years when, seemingly out of nowhere, various circumstances completely knocked me on my ass. I felt uninterested in the activities that had previously made me feel healthy, viable and attractive. I found myself feeling stuck and uncomfortable in what I dubbed a “body rut.”
Once I was in this funk, it was easier to indulge in methods of escapism that only made it worse: alcohol, not exercising, oversleeping. It felt like I should be able to bounce back, but I had no desire to engage with a body that was making me feel crappy. Worst of all, in the body rut, my brain immediately gave in, “Well, I guess it’s all downhill from here … might as well just let myself fall apart.”
It’s easy during these ebbs to feel like all is lost. And it can have a negative impact on the very things that might make us feel better: sexuality, relationships, intimacy and more. It’s a vicious cycle: Often the things that make us feel good are the very things we want to push away when we’re in body ruts.
But all is NOT lost. We all have the potential — with the right support — to move through these body ruts and back to a place of confidence and power. Specifically, we can prevent them from denying our fulfillment as human beings who are sexual, sensual and have great capacity for loving and enjoying our bodies, alone or with others. Before we can even get to the sex or online dating, we have to get other junk out of the way. And most often it requires starting with ourselves.
There are countless ways we can end up in body ruts. Perhaps neuropathic pain that suddenly increases or changes can push us into one, or an unexpected physical issue or a gradual change that eventually catches up to us. Even things that seem more a matter of the head and heart — like rejection, heartbreak, disappointment or loss of a relationship — can manifest in the body and make us feel physically unwell.
Emily Yates, a 28-year-old, full-time wheelchair user with cerebral palsy living in Glasgow, Scotland, has experienced numerous ebbs and flows with her body and relationships. A self-described lover of travel, cats, gorgeous food and pink hair dye, she experienced the same doubts and fears about her body and sexuality growing up that many of us face in our initial encounter with disability. “I remember being 14 and lying in bed, terrified that I would never get a boyfriend or have sex due to being a wheelchair user,” she says. Much of the fear dissipated as she grew older and developed confidence, throwing herself headlong into sex-positive and disability-positive advocacy.
Her body rut started after a relationship breakdown at age 24. “My partner at the time felt more like a caregiver than a boyfriend. This shattered my confidence and the strong disabled identity I was so proud of,” she recalls. “For a long time, I struggled to trust anyone, or believe that they could possibly find me attractive. For the first time, I realized how intrinsically linked my sense of sexuality and my sense of worth are. I felt unattractive and almost fearful of being sexual with anyone, which, in turn, affected how I felt about other aspects of my personality, my capabilities at work, and everything, really!”
Stewart Tucker Lundy, a C5-6 quad from Denver who was injured in a 1982 diving accident, finds that body ruts now develop as a function of aging. “As I get older, there’s a transition happening again — my body is changing, and it’s new,” he says. Lundy admits that often the ruts have developed as a result of comparison. With past sexual relationships, he frequently didn’t think he was worthy of being with his partners. “I didn’t think I was good enough,” he says. “I was comparing myself with able-bodied men. I’m not an able-bodied man.”
For Arianny Ramirez, a manual chair user from New York City, it was a divorce. Paralyzed at L3 as a teenager in a fall from a Ferris wheel, she married in her mid-20s. “I stayed in way too long — largely because of my injury,” she says. Her body played into her concept of self as a young person. “When I was younger, I never wanted to show my legs because of the muscle mass. I was very aware of those things, I pretty much had issues with my body for a long time.”
Single for two years, she struggled to restart dating. “It can be very scary, especially in New York,” she says, “everyone is pretty much single here, with a reputation of not settling down. … Having a disability is an extra level of obstacles, you don’t know the reaction of someone when they meet you, how they will react to your disability. It was harder to open up — I had my guard up.”
My body rut seemingly came out of nowhere — a result of a beautiful trifecta of a broken relationship, an anal abscess and a knee fracture. My reasonable side said, “These will pass,” but another part of me retreated into a negative place. The medical issues and the required break from normal physical activities impacted my physical state. I felt tired. Nauseous. Gross. Even with success in other areas of life, the body piece was leaving an icky residue. Nerve pain resulted in me neglecting my body and sexuality. It was just too uncomfortable to keep dealing with it.
Starting With Number One
When your self-image, body confidence or trust have taken a knock, it’s not always easy to bounce back. Even after medical issues have resolved or a broken relationship is finally a memory, it can still feel like a chore to do things like getting to the gym, getting yourself dressed or signing up for that dating app.
Often the first step is acknowledging that these body ruts may have a lot more under the surface than we realize, making it harder to pull out of them. For those of us who have experienced a traumatic life event or change that was body-based, life circumstances that may just be a blip in the road for most people have the potential to immediately plunge us into dark places.
Joby Siciliano, a certified massage therapist at the Chanda Plan in Denver, has seen this with countless clients in his 10 years of practicing bodywork extensively with individuals with spinal cord injury, brain injury and other conditions. “Trauma resurfaces that was stored in the nervous system and tissue, until they let their guard down,” he says. “A lot of individuals haven’t fully dealt with their trauma — they come in willing to do everything and anything to improve quality of life and alleviate discomfort.” As is fairly common news nowadays, he sees a lot of nerve pain issues, developing from all different sources, which he treats as entry points into healing.
Through practices like massage therapy, acupuncture, soft tissue manipulation, physical therapy and adaptive yoga, individuals can not only discover relief from the body ruts of chronic pain and other physical issues, but also from the psycho-social-spiritual issues that might be compounding — or compounded by — the ruts.
Many of us may not immediately make a connection between bodywork and our ability to cultivate a personal approach to sexuality or an intimate relationship. But if something physical is getting in the way of our ability to open ourselves to intimacy, an investment in body-based modalities is a good way to cultivate a healthy relationship with your own body. Often, we may not even realize that a healthy intimate relationship with our own body may be lacking.
To be absolutely clear, bodywork is not — not — a sexual experience or practice. However, it creates a safe space to start engaging with our personal physicality, vulnerability and trust … which are major components of human sexuality and relationships.
For many of us with long-term medical conditions, we often have no choice but to open ourselves and be vulnerable in situations that are not based in personal joy and fulfillment — such as the doctor’s office or emergency room. Creating an alternative space where we can surrender by choice reminds us that we have that power. We deserve a space where our bodies can be explored and enjoyed through human to human contact … not just medicalized and treated.
“We are all tactile beings, we all thrive on touch,” says Siciliano. “How we choose to express that can be incredibly scary, or beautiful, amazing and liberating for a lot of people in a lot of ways.”
Beyond bodywork, getting out of a body rut demands an investment in your body and yourself, and a belief that you’re worthy of the attention. “Now I wear dresses all the time,” says Ramirez. “Getting older and more mature, I don’t care anymore. Regardless of how you look, you’re still beautiful, you still matter, you’re still valuable.” She regularly makes time for things that make her feel good physically, including manicures and pedicures. “Especially the pedi because it’s hard for me to do it for myself. Physically, it’s nice to get it done, taking care of yourself and doing something nice for yourself.”
For Yates, it has been important to develop a comfortable relationship with herself. “I know that I can manage perfectly fine and have a brilliant time on my own. I can happily go to a restaurant and sit at a table for one without a care in the world,” she says. “There’s something about enjoying your own company and being totally self-sufficient that makes sharing special moments with someone you love even sweeter.”
Lundy emphasizes the incredible power that comes from investing in yourself and developing robust confidence that doesn’t originate with anyone else. “For me it’s always been a mindset,” he says. “I know the reality of me sitting in this chair, what I look like, my thighs, blah blah blah. But as long as I can put on a blazer and someone rolls up on me and says ‘hey, you’re looking good, what’s up, how you doin,’ I know I still got it.”
Lundy emphasizes that reframing your personal perspective can counter the effects of a body rut. “If I’m in a sexual rut, I think to myself, I know what I can do to a woman in a way no other guys do,” he says. “The nether regions are my playground. To me, giving pleasure is a way to exercise control or power — I can’t pound you through a wall, but I can give you Bambi legs!” Most of all, he doesn’t allow his confidence to waver. “I know my reality. If you beat up the reality, then you get into the ‘woe is me’ category. The reality of my body that I inhabit is not bad. As long as I think of myself in the present as being normal and sexy, I’m good.”
The Importance of Support
Taking care of your body is an optimal way to start working out of a body rut but seeking additional support outside yourself is often crucial.
After Yates’s experience with her breakup, she utilized the support of friends and family who helped her reestablish her confidence and set healthy boundaries without lowering expectations. “In this modern world of Instagram ‘likes’ and Tinder swiping, I think it’s really easy after a breakup to accept a situation that you wouldn’t usually accept,” she says. “Most of us are fully aware, even at the time, that we are allowing unhealthy boundaries and are worth much more than that, but it’s a tough cycle to break when your self-worth isn’t tip-top at a time of heartbreak.”
She ended up meeting a new partner — “the kindest man I’ve ever known” — and now works as a “non-expert sexpert” with Enhance the UK. The user-led organization engages in a variety of disability advocacies including Love Lounge, a Q&A forum that encourages disabled people and their loved ones to write in with any questions surrounding love, sex, dating and relationships.
Through her work with Love Lounge, she engages with many people who are struggling through body ruts that often have less to do with themselves, and more to do with the issues and frustrations of engaging with the outer world. “People often get in touch with us when they are experiencing a body rut through a lack of confidence or heightened vulnerability,” she says, “be this through not knowing whether to show their impairment in online dating photos, or cringing at the thought of having to have the ‘pain and positioning’ chat once again with a new sexual partner.”
Often it’s related to shifts that disrupt personal routines, and consequently impact trust and confidence. “I think we’re all more likely to experience body ruts when we experience change, whether that’s the end of a relationship, when braving the dating scene after a move to a new city or, indeed, if we become disabled and the way our bodies move and work changes.”
For Ramirez, getting out of the rut came with finding the right dating mechanism. “I started together with my friends. I signed up for Coffee Meets Bagel — it connected you with friends of friends. It wasn’t swiping, it was about answering questions, getting connected with someone based on your similarities, not just a photo.” There she met Pat, a teacher, who had never dated someone with a disability.
Ramirez was very honest from the beginning about all of her circumstances. “Definitely communication is so important — talking about your fears — from the beginning, getting it all out there,” she says. “It helped with my anxiety, saying ‘this is what you can expect.’ You’re giving a person a chance to understand what your life is like and if they want to be part of it.” The couple married in December after about two and a half years together.
Lundy has found that having strong friendships with females has helped him to understand more about what they are looking for and what matters to them. “It’s so important to get out there and engage with people in general,” he says. “I never knew when a woman was trying to be with me. For a long time I didn’t try because I didn’t want to misread it.”
Learning to be patient, listen, and talk showed him that he could develop great chemistry with potential partners. “My brother would say, ‘I’m gonna talk the panties off her!’ It’s always a possibility, but you have to do it in a tactful way. Us guys in wheelchairs, we can’t be that aggressive,” says Lundy. “Eventually the right woman will come along, but you have to be patient.” Having friends who can provide insight can help build confidence in forging potentially intimate relationships.
Now married for eight years, Lundy and his wife, Marci, work together to actively cultivate confidence. While Marci can be his cheerleader at times, it’s mostly in reminding him to maintain his confidence, even when in a rut. “When people say you’re lucky to have such a beautiful wife, I say, ‘Dammit she’s lucky! We’re both lucky!’ It’s not just a sweet lady taking care of a guy in a wheelchair,” says Lundy. “We’re two sexy people. We’ve met people who say, ‘Damn, you make us want to screw because you’re so sexy!’”
In the end, the people around you can be helpful in reminding you to stay true to yourself, even when you’re in a body rut. “You’ve had so many years of being you, you’re probably really good at it,” says Lundy. “Don’t change that midstream.”
Body ruts will happen, but they shouldn’t relegate anyone to a life that is devoid of body love, sexuality and relationships. Putting trust and value back into your body after a difficult experience — perhaps even one where you feel some measure of body betrayal — is difficult. As Yates reminds us, “It’s OK to be at odds, angry or upset with your body, but don’t forget all the magic that’s in it too.”
Flip the Switch
Body ruts often switch off our brains to the possibilities that exist for us at any time, at any point in our journey. Beating the body rut requires that we take some sort of step to re-engage intimately with our bodies.
While some of us may be at the point of engaging in person again — either through bodywork, dating or socializing — there are many other ways to “flip the switch” and reinvigorate our sexual/sensual headspace in a safe way, prior to engaging in person. These methods also allow for setting boundaries and establishing a space over which we have control and power. Essentially, engaging with yourself before you move on to involving someone else.
The internet is a fabulous place to start, as long as you employ some common sense and caution when engaging. You can choose how far down the rabbit hole you want to go.
Erotic writing: The brain is one of the most powerful sexual organs, and words and images are incredibly effective in eliciting your inner sexual being and making you feel interested again. The internet holds a treasure trove of creative writing from talented literary artists willing to share their art, which also come from a sex-positive perspective, for the benefit of our enjoyment and pleasure. A good place to start is Kinkly.com, which Includes a page of sex blogs to explore, complete with ratings, reviews and titles.
Websites: EnhancetheUK.org has a variety of resources to explore, including information about sex and disability. Hot
Octopuss.com is an identity-inclusive site with options for toys, readings, and general sex-positive info with an “accessible sex” section. TheBodyIsNotAnApology.com is a self-described radical site with all sorts of content that cultivates self-love and body empowerment. It includes articles on sexuality, disability and other body-positive angles, with many pieces written by individuals with disabilities.
Influencers and social media: There are many folks whose social media presence conveys confidence and charisma, directly focusing on sexuality or not, including Abby Sams, Eddie Ndopu, Rebekah Taussig, Ruby Allegra, Alex Dacy, Andrew Gurza, Sam Bosworth, Imani Barbarin, Dr. Eric Sprankle, Keah Brown and Cripping Up Sex with Eva. Also the #DisabledPeopleAreHot hashtag brings up a wide diversity of folks with disabilities with that extra little zing of human attraction.
Chatting: If you want to start engaging, there are many chat rooms available to experiment and let your brain go wild with fantasies. Just make sure you set your own boundaries (what are you open to discussing, whether you want to use a fake name and e-mail, etc.) and don’t be afraid to be assertive. Do not take people up on moving out of the chat room to other forums (Snapchat, e-mail or text) unless you are comfortable with it. Definitely be extremely wary of offers to meet in person!