By Annalysa Lovos
From the first time we met, shortly after my accident, Dave and I had a special connection. Over the next several months I came to realize that I liked him so well that I couldn’t imagine finding out anything about him that would change the way I felt. He was tall and handsome and looked me in the eye when we spoke. He was calm, unpretentious and very real. He was a musician who made fine acoustic guitars for a living and loved his job. He shared my interest in books, independent film, tai chi, and wilderness. It was not hard to find common ground.
The story could have ended there, because I have always been a very shy person. Luckily, I was encouraged by a friend to take a chance and tell Dave how I felt about him.
Was it because of my disability that I had to make the first move? It may have been–my paraplegia was a new situation for Dave–although I had been taking his tai chi class in my wheelchair since shortly after my L5 injury, and I felt like he already had some idea of what my abilities and limitations were. Still, all aspects of my condition had to be brought honestly into the open, even the ones I felt like hiding. I wanted Dave to know the details I deemed unsavory and still like me. So I began … I fall over sometimes. I tie my shoes sloppily. I must be careful not to get a pressure sore. I am uneasy in crowds. I have very strange and complicated bathroom habits. Yes, I can feel that; no, I can’t feel that. I haven’t had an orgasm in two years fell out as I looked at the pattern of light on the ceiling and tried to ignore the tears rolling down my cheeks.
Saying these things did not make me feel very loveable. I felt like some sort of Frankenstein monster in his eyes, and at the same time intensely sad at identifying my losses so plainly. I had never before made myself so vulnerable. It may be coincidental, but I have also never been in a relationship so richly rewarding.
Dave took my admissions in full stride. He didn’t act like he was at all put off–in fact, he cried with me. I knew from the aftermath of my accident that crying with someone is a bond that seals hearts, and with Dave it was the saddest joy I have known. In that moment I gained a deep confidence that he could love me and love our relationship as a whole.
There were still times I felt like crying, screaming, or having a tantrum. Why could I not dance with Dave? Climb gracefully on top of him when we made love? Walk with him hand in hand through the woods? Give him a full-bodied hug? It seemed cruel that we loved each other so much, yet could not share these simple pleasures. But I did not want to get stuck in any negative feelings, especially after seeing how sad it made Dave. His sadness seemed to break my heart even more than my own. For both of our sakes, it made more sense to focus on the positives.
The Big Leap
After five months of camping out alternately at his house and my apartment, we got married and moved in together. The decision about where to live had not been easy. My apartment was a 400-square-foot studio in a downtown neighborhood in the middle of a community where I had good friends all around me. I had remodeled it for accessibility. But it was noisy, hot, and very, very small.
Dave’s place, on the other hand, was outside of town in the Texas hill country, cooled by mature shade trees in a natural forest through which deer wandered regularly. Quiet, secluded, it offered not only plenty of living space, but shop space for Dave’s guitars and the grand piano he was rebuilding. It even had a hot tub and a tower. It was one of the most unique homes I have ever seen, and had even won an architectural award.
The downside to Dave’s place? It was completely, totally inaccessible.
When I got to his house, I had to call him on my cell phone to come get me, please. From the end of the driveway, he would carry me a quarter mile down the side of the hill on a trail too narrow and too steep for a wheelchair. Once in the house, I chose which room he was to deposit me in. Each of the seven rooms was on a different level, each fairly small, so there was no reason to have my wheelchair in the house. It stayed in the car, and Dave attentively transported me from room to room as I wished. Sometimes I crawled, like when I had to go to the bathroom in the middle of the night. The kitchen was so small I could not get into it at all, so he not only had to carry me everywhere, but cook for me when I stayed with him.
It sounds completely crazy, but we actually considered living there together. We were weary of the city, sickened by burgeoning crime and frazzled by barking dogs. We considered what living at Dave’s might be like, and though we are fairly inventive people, we could not see any way to make the situation even a little bit easier. In the end, he had to give up his house and his sense of peace in the hill country in order to live with me. I know it was a very sad day for him when he left his house.
But the day he moved in, my apartment became a special place for us. “The compound,” as our friends affectionately called our little one block urban community, was the site of our wedding. The inner courtyard was transformed into a beautiful garden where our families and friends surrounded us as we exchanged our vows. Even the courtyard wasn’t completely accessible to me though, and on this otherwise perfect day I fought off feelings of inadequacy–my dad and brother had to carry me. Naturally, I would have rather done cartwheels and handsprings to the altar.
Smoothing Out the Rough Spots
There were mornings I woke up with Dave and felt like I was surrounded by booby traps. Sometimes it even felt like my small apartment was an urban land mine area. What was I to do when he left his shoes and clothes strewn over the bathroom floor? When I found things I needed out of my reach after he left for work? When his guitars were plunked down barring the hallway? I couldn’t expect him to think from a wheelchair all the time, especially when it was so new for him. Neither could I stand the thought of saying nothing and becoming internally angry with him.
I decided to take responsibility for keeping my environment organized for accessibility. It may sound small, but it’s amazing how much difference a simple shift like that can make. I asked Dave to do things only if I could not do them myself, or if they would be significantly more awkward and time-consuming for me than for him. I determined what was significant by asking myself in each situation, “What would it take for me to accomplish the task at hand?” Often, I found I was capable of much more than I had imagined.
One gray and starless evening we went to a backyard party and found many friends dancing to a live band and chatting around a bonfire. Upon arriving in Ed and Debbie’s backyard, I felt like an outsider. There were couples dancing to the band in true Texas style and screeching children running circles around them. I had heard that other people in wheelchairs danced sometimes, but to me it seemed like it would be a partial experience, entirely useless and unexciting. Dancing was one lost activity I had not been able to resurrect.
The yard was perfect for a party, sloping like a natural amphitheater. People danced below while the band played from the patio up top. I stayed put, off to the side. Not only did I not want to deal with the formidable hill, I also worried about catching a caster in a gopher hole and taking a spill in front of everyone. Further off to the side was a kidney-shaped swimming pool, its still surface untouched by party guests. Dave and I love the water, so we made our move to the pool.
Soon I had my legs wrapped around his waist and we were dancing and swaying to the music. We rocked, sometimes wildly, side to side, as I helped direct the movement with my hips. The water sloshed against the tiled sides of the pool. It was the most incredible feeling to dance close with no wheelchair, no limits on the amount of bodily contact we had together. We laughed and laughed as we danced, and finally pulled ourselves reluctantly out of the water when the band stopped playing.
Later on, our host, knowing how much fun we’d had, offered teasingly that we could have sex in his pool sometime.
Doing tai chi together also heightened our intimacy. Though I go through the moves seated and he usually stands and moves around, doing our forms in synch centers us and brings us together. This sparks a feeling of closeness and oneness we would otherwise not be able to experience without physical contact. And when we make love after a tai chi workout, it feels very powerful.
We started gently into our sexual relationship. At first just holding each other was enough. Soon, though, we moved on and began exploring what I could feel and what possibilities worked for us. It felt very safe because we knew the reason for coming together was that we cared deeply for one another.
This underlying motivation of deep love and respect has also kept us from fighting. We don’t say intentionally hurtful things or hold grudges. The love is bigger than any issues that come up, and remembering this through all situations makes for much smoother sailing together.
Pulling My Weight
One thing I worried about in the beginning was pulling my own weight in the relationship. I didn’t want to be physically dependent on Dave any more than I had to. Neither did I want to be financially or emotionally dependent. I didn’t want him to feel in any way that being with me was a burden. I struggled in myself about how I could possibly even things between us. As things worked out, there was a natural resolution.
Sometimes he did things for me, and other times I took care of him. Without either of us bothering to keep score, it came out feeling even. He put the wheelchair in and out of the car when we drove together, carried the furniture during our many moves and patiently helped me modify everything from sex to closet space. I cooked dinner, took care of him when he was sick and taught him how to use a computer. He went to work and made good money. I worked at home and made less money but took care of things he couldn’t get to while working a full-time job. It soon looked like any other relationship–we each took initiative in our stronger areas and helped the other when we could.
As Dave and I grew together and I was able to both mourn my losses and see that they were not the end of the world, I began to respect myself more. I could see that what I had to bring to the relationship was no less important than what Dave brought. It seems fair to say that we are both equal contributors to us. The funny thing is that it took becoming paraplegic to achieve this in a relationship. My relationship with Dave has been far better than any I had before my accident because we entered into it very consciously. We moved through the uncomfortable issues of both disability and relationship in a way that was transformative for me.
I don’t really feel like I had to give anything up to be with Dave. Nothing big, anyway. I guess I partially gave up my liking for spicy foods, so that I could cook meals that would satisfy both of us without burning the hell out of his mouth. We survived the cramped quarters of the studio apartment and the obnoxious barking dogs and now we are once more living in the woods, on a beautiful piece of land where we will build our dream house next year.
Oh, I did compromise on my preference for the entire queen-sized bed. It’s too painful to sleep on my back, so the only options are right side or left side. I can’t control what my legs do at night–they inevitably end up sticking straight out at a right angle to my body. This is unpleasant for Dave if I’m facing him, unpleasant for me if I’m lying the other way–they end up out of the covers and off the bed, a couple sticks of ice, dragging me down. This we still deal with every night. When we have our own house, we’re getting a king.