Mr. Wolf is Huffing and Puffing and Well — You Know the Rest

My life has never been the same since first meeting Mr. Wolf more than a decade ago.

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.

— Danu's Daughter

Just Who Should We Fear, Anyway?

I routinely visit the doctor for ongoing treatment of Lupus, but I got way more than I bargained for last week when I got into it with a group of patients in the waiting room.

The issue that brought about the mini-skirmish was homosexuality in general, and gay marriage in particular.

Guess I’d better explain. When I arrived, my doctor was running late (don’t they always?), so I found a seat in the small and very crowded waiting room. A TV was blaring a Jerry Springer-like program in the corner. I’d brought a book to read, so I sat as far from the set as possible, which sadly put me facing the group of eager TV viewers.

These folks included more than 20 mixed race people, a little older than a normal cross-section of the public because the doctor we were waiting for is a rheumatologist. The key “player” in what turned out to be my personal drama was a man in his 30’s who had driven his elderly mother to her appointment and was waiting with her. He was quite handsome: tall, fit – cut even – with a stylish shaven head, but a less-than-stylish toothpick sticking out of the corner of his mouth. He was wearing expensive summer shorts and a blue polo shirt. He was also very loud.

At some point on the TV program, a homosexual man and his partner were picked out of the audience. They said they were planning to wed when/if it ever became legal in their home state. Immediately, the handsome man I was sitting across from began making unpleasant remarks about the gay couple on the TV. He loudly expressed how disgusting, etc. the whole thing was, prompting the bulk of the remainder of those in the waiting room to chime in their complete agreement. The handsome man, egged on by the obviously appreciative crowd and vise-versa, began to laugh derisively at the men on the TV. The handsome man and several others in the waiting room continued to express and utter a lot of vicious gay-bashing insults, and similar remarks that I will not dignify by repeating here.

As the whole thing unfolded, I literally felt sick to my stomach. I am bisexual, but even if I was straight, I would have been deeply offended by the terrible hate-talk.

After a few minutes, I found that I had almost involuntarily put my book down and was facing all of them. Quite abruptly, as if I was looking down on myself from some place high and hovering just below the ceiling, I interrupted this room of average Americans. At that point, almost all of them were laughing merrily – very happily bashing homosexuals, the handsome man at the center of it all, his eyes absolutely twinkling with cruel delight.

With as level a voice as I could manage, I softly asked them if they, “did not like gay people?”

An African-American woman who appeared to be in her 50’s answered without hesitation, “No,” prompting the majority of the group to all nod in agreement. The handsome man laughed again, and the others joined him.

She went on to proclaim that she was Christian, and that nowhere in the Bible did it say that homosexuality was anything but a sin, or that “those awful, awful people could marry.”

Another woman, who was white and said she was Italian-American and Catholic, said she agreed completely, proclaiming that, “those sick people will all go to hell, and this country will be better off without them in it.”

I told them that I couldn’t understand that view at all, that I tried to judge each person as an individual, and not to stereotype them. I said that I had thought that Christianity promoted that very approach. I also noted that the Bible also fails to condemn slavery, while actually providing instructions to slave owners. As a result, I suggested to the African-American woman that perhaps her citing it as support for an anti-homosexuality argument wasn’t the best choice under the circumstances.

For some reason, I kept talking. I noted calmly that many of those who were speaking out against homosexuals in the room were of different races. I told them that to me, “gay-bashing is just another form of bigotry – a different flavor of prejudice.”

The handsome man, who happened to be African-American, had suddenly become very, very, angry. He sharply and loudly criticized me for “daring” to speak out “in favor of those fags,” and for horribly comparing it to racial bigotry. He said I was "full of shit,” and that he had a right to his opinion.

I told him I agreed completely that he had the right to believe anything and everything that he chose. Swallowing my now palpable fear, I unwisely added, “but you’re in a public place, laughing at and insulting a group of people simply because of their sexuality. I really see it as bigotry. Your conversation and behavior are very offensive to me, and I would appreciate it if you would stop.”

An immediate and deep-as-a-ravine silence followed in which the only sound I could hear was my own heart thudding wildly in my chest like it was trying to jump completely out of my body, along with the constant drone of the TV.

“We’ll stop – but not because of you, because we’re finished talking,” he said, twisting his handsome features into an honest-to-God sneer. Then he leaned way forward in his chair and actually jabbed a finger out directly at me, reaching very close to where I was sitting. “Change the subject, or this is going to get very ugly for you – right here, right now.”

Look, I'm almost twice his age and disabled. I’m a 54-year-old white woman who can only walk with the use of two canes.

Somehow, I managed to look directly and deeply into his now hate-filled and threatening eyes. I knew in that instant that if I said a single other thing to him – anything – he really might strike me. And, if he did, I also knew he’d never suffer a pang of conscience, even though any blow from him would injure me quite badly.

“No problem. I have my book,” I replied, my mouth suddenly very dry. As I looked away from him, not one person in the waiting room made eye contact with me. Turning to my book still on my lap, I found that my hands were shaking uncontrollably.

No one spoke the rest of the time we were pressed together. When it was finally my turn to see the doctor and we were alone in an examination room, she asked if I was OK. The receptionists, all women, had heard everything and had told her because they were upset. Despite how they had felt, not one of them had tried to stop the gay-bashing.

Even so, the doctor thanked me for speaking out. She said that, "a lone voice against hate and intolerance does make a difference." She said it puts a different energy into the minds of everyone present. She said she thought it was fear that had stopped some to speak up who probably had agreed with me; some that felt gay marriage was OK; or others who believed that homosexuality was nothing to be made fun of, and that gays should not be abused.

I found out later that the oh-so-thoroughly-furious-handsome man was...wait for it...a police officer! Just what we need, not only another homophobic-bigoted man – but one with a badge and a gun.

— Danu's Daughter