Love and disability: dancing the two-step

Love and disability: dancing the two-step

“Love and disability: dancing the two-step” is a story of a couple navigating life and love when one person is disabled and the other is not.

When we first met, I made sure that I kept my distance. Sometimes disability is not a metaphor. Sometimes disability is not inspirational. I can’t listen to one more person telling me what a marvelous success story I am. Or how inspirational I am because I somehow managed to get a degree in words and what we do to them and what they do to us. I lose a word each day and I struggle to admit that I have been betrayed by my own body. How do you expect me to stay with you when I am slipping away from myself?

We always ask lovers to stay. We don’t allow them enough space to leave and feel disappointed when they do. But what if you want to leave when you see me sprawled across the bathroom floor, unable to get up? What happens when you notice that I can’t button my shirt anymore? What happens when I need help getting off the toilet seat? What happens when your touch doesn’t console but sends electric chills across my skin and it’s anything but romantic?

Bodies are vulnerable and vague and so demanding. They demand to be seen. I never wanted the attention. I wanted to hide from your stare and from everyone who commented.  Perpetually sleepy eyes. Tired eyes that blink excessively. A sloppy smile that gets worse as the clock ticks. My crushing fatigue kicks in and I feel the weight of my eyelids. I am lifting them and straining to see.

I look “normal” and yet feel the aches and the jolts. I think my Central Nervous System is sadistic. I can’t keep up with the games and I don’t have a safe word.

Until you came along and wanted to play. You insisted that we could try this out. What’s there to lose?

“Dignity. I’m so scared,” I replied.

“Fearless is how I would describe you. Don’t let fear in, please, let love in. Don’t you love life? Teaching? Why won’t you love love?”

I think back to how Mama never let me say “I’m scared” because she never introduced me to the word. I didn’t know there was a word for fear until I was nearly nine years old. It is still a word I don’t reach for. It stays in my stomach and nauseates me but I still can’t say it. You were the first I admitted this to, but instead of surrendering, you challenged me to a duel.

Looking back, I know now that your presence triggered the potential of loss. Of absence. Your perfect body drew attention to my imperfect body. Your excessive energy levels highlighted my chronic fatigue. Your youth contrasted with my age and I needed to hide my grays.

Read more: Movement as medicine

To teach self-love and to teach theories of women’s bodies and love is yet another fallacy if I haven’t mastered the art myself. I look in the mirror and wonder if you will find me attractive as the disease blasts my cells, invading both of our boundaries, our safe space. What safe space can I celebrate when hospitals become our norm and clinicians listen to our love language? I remember you closing your eyes as the tall nurse jabbed me. “All done,” she chirped.

But we had really started the journey then. We had to come up with ways to love, to speak, to be present. You witnessing my journey meant you were really there.

Over the years, the “I” shifted into a “What should we do now?”

I began to feel a breakdown of boundaries and at first, it was uncomfortable. I would apologize for my tremors that arrived at the most unsolicited moments, moments where touch and rhythm mattered. I would ask you if you still wanted to stay and remind you that you could leave at any given moment. Once, you threw your hands up in the air, frustrated, angry, and asked me to stop leaving the door open.

“Can’t you just lose the keys? I’m not leaving. Just stop.”

Perhaps I resisted the urge to ask you to stay for too long. I wanted to retain my autonomy and remind myself (and you) that I would not be dependent on you. That I wouldn’t need to lean on you during those long strolls we take across the city, admiring the skyscrapers, while I start feeling my feet lose their direction. I wanted to know that I was still attractive as I fumbled across the room to get to you. One, two steps, and the third was the fall. The first time I fell I felt the shame surge and enter the room challenging one of us to respond, to leave, to exit stage. And yet again you stayed.

Coordination became even more difficult and connecting my brain cells to my right foot and right hand was maddening. The information teleported by my nerves would stop half-way through and I would freeze and panic, unable to remember which limb was being spoken to. I would pause and stare at the floor. And then you took my hand and started dancing with me. Dance helped me to reconnect to my body and infused my nerves with a new second-language. Two steps. One, two. Here we go. One, two. Movement together.

When we danced, I began to notice that my body reacted more to the freedom of being able to move shamelessly in front of you and it didn’t panic. It didn’t freeze in anticipation of a failure to perform. I would look at your eyes for affirmation and that’s when I understood that love heals – and I can’t help but think of Maya Angelou’s “Love heals and liberates.”

I use the word love, not meaning sentimentality, but a condition so strong that it may be that which holds the stars in their heavenly positions and that which causes the blood to flow orderly in our veins.” Blood flow. To our veins. To our nerves. There you were, standing there, assuring me that we would find new ways of being, of existence, that disability would not rip me away from you, that dignity was tied to love, respect, to the cuddling, to the quick kisses, to the presence that lingers as you wink at me before you leave the house.

‘Love and disability: dancing the two-step’ was originally published as ‘Staying and Witnessing: Two Steps of Love’ on Wordgathering. It is re-published here under Creative Commons license CC BY-NC-ND 4.0.