Sadly, he became so fond of me that he decided to move in without an invitation, and I have been woefully unable to evict him since, despite my very best efforts.
I have Lupus, which I refer to as “Mr. Wolf,” because lupus is the Latin word for wolf, and boy has he been snapping his big teeth at me of late.
I have the most serious form of the disease, Systemic Lupus Erythematosus (pronounced: er-uh-thee-muh-toe-sus), also called SLE, which 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.
Like the last of the Three Little Pigs, I've learned long ago to build my house's foundation soundly against his attacks. I have built it upon the concepts of spirituality (Wicca), love (bisexual), hard work, honesty and a willingness to play (the last has been the hardest part for me.) Nonetheless, the truth is that my house is about to come down around my ears.
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 went to the doctor and was told what I already knew — Mr. Wolf is coming closer and closer to achieving his goal.
Last year, I had a horrible realization: I can no longer remember what it felt like to be well. Oh, I have memories of being very active, unabashedly athletic and whole, but they are no longer sense memories. It’s as if that part of my life was so insubstantial that it has been absorbed into the unreality of dream.
When I was first diagnosed more than 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 had been 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 has been sobering indeed to realize that self-knowledge, even hard-fought, can be forgotten in the face of relentless disease and worsening 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 once again 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 suicide: Sensation.
I sighed and put the pill bottle away— again. I know now that I will not improve, or may never even stabilize again. The truce, the peaceful co-existence, the political accord that I had hammered out with him before is gone.
I must once again work to reclaim my body, make her a part of me again. Integration in a literal sense. I have been kind, nurturing, drawing her back — but that is no longer enough.
Before, it was my honest sexuality that was the key. I had worked to feel arousal again, slowly, gradually working to feel even a nano flash of sexual interest. Once I had done that, I almost immediately remembered the long-lost feeling of my “soul.”
When I was having sex, I was no longer disabled. The pain that has always been Mr. Wolf’s hallmark transcended into pleasure. Touch and intimacy has been my link to the divine for as long as I can remember. In those moments, I was 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 have to relearn this simple message yet again — but this time without my usual coping mechanism. My sexuality continues to elude me now, so I have to figure something else out. Perhaps I failed to appreciate that my real sense of self, my soul, cannot be wooed from the outside, but must be found within. Even though I had connected to her through my physical senses and the practice of a Divine sexuality, she is not really connected to my body at all. She exists in everything, in everyone. Even me — still.
Thus, I have decided to move forward knowing that my deterioration simply is. Mr. Wolf is real, and I can't pretend that he's just some euphemism I created to represent my disease. I need to find new ways to hang on, to continue breathing. I was given the gift of life, and it remains a gift still.
I also hereby re-dedicate my efforts to re-establish my intimate life. I want the most satisfying sex possible. For me, sex doesn’t just promote overall health, it has always meant the very breath of creation. Despite needing to learn a different way to remain connected, I refuse to give up hope that physical intimacy is lost to me now.
— E
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