Sex is saving my life – or more precisely, has helped me decide to hold onto it for as long as I can.
I have Lupus, which I refer to as “Mr. Wolf,” because lupus is the Latin word for wolf. I have the most serious form of the disease, Systemic Lupus Erythematosus (pronounced: er-uh-thee-muh-toe-sus), also called SLE. (Click here for the Lupus Foundation of America.)
SLE is an autoimmune disease. As such, it is characterized by a malfunction of the immune system. In these types of diseases, the immune system cannot distinguish between the body’s own cells and tissues and that of ‘foreign’ matter. So, rather than simply producing antibodies to attack invading viruses, bacteria or other similar foreign substances, my immune system creates auto-antibodies that attack my body’s own cells and/or tissues.
The past few months have been bleak. Mr. Wolf has been feasting virtually at will – and sister, does he have a lot of will. During the current onslaught, I also had a sudden, horrible realization: I can no longer truly remember what it felt like to be well. Oh, I have memories of being very active, athletic and whole, but they are no longer sense memories. It’s as if that part of my life was so insubstantial it has been absorbed into the unreality of dream.
When I was first diagnosed about 15 years ago, I was consumed with knowing why my own body was trying to destroy me. At first, I found myself looking deeply into the mirror: Who was this stranger that had taken over my body? And, even more importantly, how could I ever learn to live with her?
I fell into a deep-as-the-deepest ravine depression. There was nothing left of the person I once was. Nothing, absolutely nothing, remained. Or so I thought then. I was wrong. Very wrong. A tiny, itty-bitty, bright even luminous speck of something had survived.
Was it my soul? I still don’t know, but I think so. I also came to believe it was the divine spark of creation housed within all beings; that indescribable “something” that connects us all to each other regardless of race, gender, age, creed, religion or geography. Whatever it was, I felt it. Visceral.
But for the past few months, nothing. It had been a long process, but I had finally begun to believe again that I had a body, that I was a woman, not simply a lump of flesh that temporarily housed my brain until my ever-approaching death. Unfortunately, almost imperceptibly, I had become a “thing” again.
I had thought that once I had found my “soul,” that knowledge – that sense of self, would be mine forever. It was sobering indeed to realize that self-knowledge, even hard-fought, can be forgotten in the face of relentless disease and disability. So, once again I stood on the very brink. I had managed to take a step back once before, but did I have the ability, or even the will, to do it again?
For days, I stared at the pill bottle, my “stash” I had hoarded for years that would bring on the ultimate darkness. If I gave in to its seduction and the sweet oblivion it promised, I would finally rest. And, I was so very, very tired.
I thought back, what had I done before? What was it that had caused me to give a damn whether I met the next dawn? Slowly, I remembered – it was that little zing of life. That shooting feeling that you are, indeed, alive. Even muted by illness, it was still there, still calling me unceasingly back from the brink: Sensation.
I sighed and put the pill bottle away. I would begin again. Instead of fighting with/or hiding from Mr. Wolf, I would try to regain the truce, the peaceful co-existence, the political accord that I had hammered out with him before.
Since then, I have worked to reclaim my body, make her a part of me again. Integration in a literal sense. I have been kind, nurturing, drawing her back – wooing her as would a gentle lover. A long, heart-felt embrace. The ultimate seduction: The self.
Once again, she is transformed. She is no longer the enemy, nor a victim. She is simply me. My honest sexuality remains the key. I worked to feel arousal again, even a nano flash of sexual interest. Once I did that, I almost immediately remembered the long-lost feeling of my “soul.”
When I’m having sex, I am no longer disabled. The pain that has been Mr. Wolf’s calling card transcends into pleasure. Touch and intimacy is my link to the divine. In those moments, I am my true self again. Not a disabled person on her way out, but a living, vibrant woman who was put on this planet for some purpose beyond my finite understanding.
It seems significant that I had to relearn this simple message. Perhaps I failed to appreciate that it needs to be practiced often and with mindfulness to be remembered. The truth is I can still feel – a lot. I am still a human being. So, I plan to stick around this ol’ planet of ours until I’m finally called home. My hands may shake and my legs may not work, but my heart and soul are still mine. Real intimacy reminds me when nothing else does.
It’s not easy, emotionally or physically, to have a satisfying sex life when you’re disabled; suffering from an acute disease; or illness. I am convinced, however, that it is impossible to thrive without one. Sex doesn’t just promote overall health, it promotes the very breath of life.
— The Curator