Monday, December 21, 2009

Dancing With Mister Wolf

"It’s Lupus," the diagnosis hung in the air between us. The doctor laid her hand gently on my shoulder. "It’s pretty bad, we need to start treatment immediately."

It was no surprise. We had anticipated the test results. Nonetheless, I felt sudden tears well up and turned quickly away. The doctor immediately withdrew her hand.

That ridiculous scene played out 10 years ago could easily have come from a horribly written made-for-TV tear-jerker. Instead, it was a real-life moment starring, you guessed it – ME.

Good grief, I don’t even get royalty checks for my repeat performances, but then again, perhaps they should be paid directly to my disease, whom I refer to as "Mr. Wolf." (I refer to Lupus as a him, because since I’ve been afflicted, the disease has felt like a living-breathing entity that is distinctly male. I have also given him an honorific out of respect, because he has mad skills.)

I also ‘discovered’ (not a good choice of words at all, as it brings to mind Galileo and his ilk, none of which is remotely associated with my life) that I could NOT afford my medications, or barely pay my mortgage. I ended up getting governmental assistance for the indigent. INDIGENT for God’s sake! I had worked full-time since I was 17-years-old, but now that I’m 53 I need handouts! (Frankly, there is a certain synergy in becoming a drooling bag lady in less time than most people complete an exercise program.)

Prior to my diagnosis, I had been a pole dancer in Vegas. Ok, not. I was actually a gangster’s moll on the Upper East Side of Chicago. Ok, really not. But, it doesn’t matter, because whatever I did, I won’t do ever again. In fact, the doctors urged me early on to get my legal matters in order – just in case.

I generally have really vivid dreams, mostly in color. This one was no different: I was looking out over a beautiful spring meadow, replete with the requisite wildflowers in bloom. I was enjoying the gentle breeze and fragrances when I saw it: A small area of blackness in the very center of this idyllic scene.

I stared at it. It was just black; black with a capital “B.” I mean ALL black, not shiny-shoe-black or sparkly-black or even night-black, or shoe-black, but so-black-it’s-almost-blue-black, no-light-at-all-black. Now, that’s b-l-a-c-k black! I’m a huge SciFi fan, so I thought it was my subconscious entertaining me with the sudden appearance of a black hole where none should be. With a start, I realized that wasn’t it at all, because this black seemed...well...this ‘black’ seemed alive. And, it was growing!

Up until now, I have never suffered from hallucinations (I mean, I talk to my cat and he does talk back, but don’t ALL cats?) So, I stared even harder at the black, uh, blob, somehow managing to stay asleep. Even as I watched, it continued to spread out, now blotting out regions of my glorious meadow, God damn it! I woke up. My heart was pounding into my throat, and I was sweating. Ick, ick, ick! What a nightmare! But, why was it a nightmare? Why was I so scared? What the hell did it mean?

I’ve always been fascinated by dreams, and think good ’ole Jung was onto something when he coined the notion of a collective unconscious. I got up, made coffee, and tried to envision my vision in the light of true day. I couldn’t. In fact, the more I tried to see it, the more anxious I felt. If only I could go to work, that would keep my mind off of it. Work — FUCK IT!

I drank down a huge gulp of the scalding beverage, the burning liquid somehow calming me down. Jesus, is this how cutters feel? Is this what I’ve become? I washed the rest of the coffee down the drain, ran to the bathroom and threw up what little guts I had left.

I went into the living room and sat in a heap, dabbing my mouth with a damp cloth. Ooze. I sat bolt upright, as my fevered mind repeated the word over and over. Ooze, ooze, ooze. That’s what it was: black, oily, ooze, and it was overtaking every aspect of my life!

“Fine, come on, buddy. I don’t give a flying F-U-C-K. Have done with it, my friend,” I said out loud to Mr. Ooze, whom I was certain was a very, very close if-not-intimate friend of Mr. Wolf. And, I meant it. For time outside of time, I remained in that chair. I didn’t eat, laugh, pray, or have sex. I sat, stared at mindless TV and marked the days, weeks, months and years melt off the calendar.

Had I an ounce of courage, I would have swallowed the sleeping pills that I had assiduously stockpilled and run directly into the no-think suffocation promised by Mr. Ooze. I didn’t. Instead, I took the path of least resistence: I existed in a ethereal region of non-space, where up was down and nothing, absolutely nothing, made any sense. My purpose was gone, and Mr. Wolf was taking greedy, ugly bites out of my body. The pain was uncontrolled, ravaging what Mr. Ooze had not already stolen of my mind and soul. I could actually feel my life force ebbing away.

In truth, since he had come on stage, I have too often yielded top billing to Mr. Wolf, having apparently decided to accept a consistently shrinking co-starring role in my very own life.

God damn it, enough!! Get up, wake up, you idiot! Get...out...of...the...chair. Stand up on wobbly legs, but STAND UP! I will humble myself and shackle myself and torture myself NO LONGER. Nor will I fight, I will simply resume what is left of my life without spending what little physical and physic energy I have on him ever again.

He will be so offended to be suddenly and completely ignored. He will growl and prowl, snap and gnash his teeth – but, so what? So what? What is the worse that he can do? Kill me? Wreck my life? I’ve already destroyed my own life, he hardly even had to bloody his claws, because I did the mayhem for him! I was the one who tore my life asunder, while Mr. Wolf merely happily feasted on my bloody remains.

Very well played thus far, Mr. Wolf, but heed my warning: I am mounting my own comeback performance. You’ve have had way too many encores already, sir! Time for this understudy to take up the costume and replace you. Deep inside, there had been a shard of me that had survived; a sliver of divinity left by creation herself. I felt her, cleverly hiding from the Misters Wolf and Ooze, a tiny speck of brilliant light.

Systemic Lupus Erythematosus (pronounced: er-uh-thee-muh-toe-sus), also called SLE, was my formal diagnosis (For more information go to the Lupus Foundation of America.)

A 19th century French doctor gave the disease its name because he thought the common facial rash most of us develop looked like the bite marks or scratches from a wolf (FYI: "Lupus" is the Latin word for wolf, while "erythematosus" is the Latin word for red).

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 (Talk about self-inflicted wounds!)

SLE is the most serious form of Lupus – natch. It not only effects my skin (face, hands and legs,) but is systematically destroying my synovial joints, including the tendons in my hands, arms and legs, even the lining of my abdomen has been adversely affected.

I also have occasional swelling of my brain stem, which interrupts my cognition and memory (Have I already said that?) It has also attacks my serous (moisture-forming) membranes found in the lymph nodes. My illness has also been punctuated by acute episodes or "flare-ups" or "flares" of horrible sickness, and ever-briefer periods of stability. Even sunlight worsens it, for God's sake!

Despite that laundry list of genuine crap, I’m actually quite lucky, because it can also attack the heart, lungs, and/or kidneys. Actually, it can attack ANY organ or bodily structure, including the central nervous system. If that were to happen, and it still might, I’d be outta here pretty damn quick. Thus, Mr. Wolf had been kept at bay – albeit barely.

Treatment includes pain relief efforts, control of inflammation as much as possible, and trying to limit damage to my vital organs. Stress also makes it worse, so it's oh-so-important to relax (RIIIIIGHT!)

Which brings me to sex. I really like sex – a lot. But, I haven’t always. In fact, this is the first time in my life I’ve ever been at peace with – and thoroughly relishing in – my true and honest sexuality. You probably think this topic wouldn’t be connected to Mr. Wolf, but it is. Actually, it’s one of the most important aspects of coping with him.

I’ve never, ever, written about sex in a personal way before, except on Twitter. Ironically, the constraints of Twitter’s 140 character limit frees my soul to be honest and discuss this fascinating, vital, and oh-so-human of subjects.

Anyone struggling with a serious disease or disability soon discovers that there’s very little that the doctors actually prepare you for in this new world of illness. So, the vast changes that are certain to befall your life are unexpected and really shocking. Sex falls into this category, for me. When I was introduced to Mr. Wolf, my body became THE enemy overnight. I didn’t know her anymore.

At first, I often 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?

In addition, I had no desire for sex – I didn’t even want to be touched at all! Instead, I began to believe that I had no body, that I was no longer a woman, or even a human being, but simply a lump of flesh that temporarily housed my brain until my ever-approaching death.

There was nothing left of the person who I once was. Nothing, absolutely nothing, remained. Or so I thought. I was wrong. Very wrong. A tiny, itty-bitty, luminous speck of something was still there.

Was it my soul? I still don’t know. But, I have come 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, sexual orientation, creed, religion or geography. Whatever it was, I felt it. Visceral. Real. I had not felt anything for so long, that it overcame me and I began to weep.

Suddenly, it dawned on me that instead of fighting with/or hiding from Mr. Wolf, I should try to initiate a truce. Peaceful co-existence. But, just how could I go about that? The answer was beyond obvious: Reclaim my body, make her a part of me again. Integration in a literal sense. I would try to be kind, nurturing, draw her back – woo her as would a gentle lover. A long, heart-felt embrace might work. The ultimate seduction: The Self.

Suddenly, abruptly even, she was no longer the enemy, nor was she a victim. She was simply, me. As I worked through it, I realized that my sexuality was the key, perhaps the key to everything. I needed to feel arousal again, not even to feel sexy yet, but to just feel a nano flash of sexual interest – a little zing!

Wouldn’t it be wild if I could truly embrace Mr. Wolf? What if I found out that he is actually my one true Spirit Guide. The Spirit Force who will remain with me through the remainder of my life, to help and sustain me – to infuse my life with his knowledge, cunning, strength and courage?

To be honest, I had no idea how to do that. So, I did what I always do when I have a problem, I researched. In doing that, I ran across articles that mentioned erotica, then I ran across erotica! Whoa. I’m divorced, middleaged, and certainly not a prude, but I could still be shocked. To be honest, it wasn’t long before that shock traveled from by brain to...uh...nether regions. Eureka!

There was no way I could approach a partner with so little to offer, and with no confidence at all. What to do, what to do? I hadn’t masturbated since I was a teenager. Frankly, I wasn’t even very good at it back then. I didn’t feel guilty, I think it was a lack of creativity. I couldn’t stay focused. I didn’t even remember how many times I’d tried it, but I knew it was a million lifetimes ago.

Even though I felt shy and embarrassed at those ancient, sepia-tone memories, I knew I needed to try it again. As usual, I didn’t know how best to go about it, so I researched. I was soon rewarded, and learned the latest sure-fire, sex-positive techniques. Well, after all of that research, I was SO VERY stoked to stroke, so to speak!

Then, disaster, complete and utter devastation! My disability prevented the movement required to even be remotely successful. Good grief, I was mortified! I loathed Mr. Wolf more at that moment than I had ever since the bastard had overrun my life.

What to do, what to do? I researched. Do you know what I learned? There are NO aids to help people with disabilities have sex, or even to make it more comfortable. None, nada, no way, no how, none at all — zip, zero. Get the utterly non-orgasmic picture?

There are bazillions (at least it seemed like bazillions if not kazillions) of so-called marital aids or sex toys, which are just the politically correct ways of referring to dildos, vibrators, nipple clamps, intimate lubricants, cock-rings, whips, paddles, leather corsets and the like. But, nothing for the disabled. Apparently, even the sex industry views us as useless, totally sexless creatures!

No longer was I shy and embarrassed, now I was flat-out-FUCKING furious! My fury was so great that it overcame my puritan upbringing, and I actually emailed inquiries to several sex toy companies. I was right; nothing to help me or my “kind,” I was told.

Okay then, I’d simply have to...improvise.

That was several years ago. After fits and starts I was eventually able to touch what I needed to touch. Success was achieved only after crafting my own device, which basically behaves as a curved extension of my own hand and fingers. There were, however, several prototypical failures before I developed the eventual winner. Whew, what a process!

I must admit that as a result of my endeavors I was forced, so to speak, to specifically learn what my body truly needs. Shockingly, I hadn’t known that before either, despite having been a sexually active adult. Previously, I had only known in detail what my partner needed from me to achieve sexual fulfillment.

Ultimately, my understanding of the importance of enfolding my body with love and tenderness led to an ability to do the same with a partner. I am once again, a fully-functioning woman. But, this woman is the not the same woman. No, this new version embraces her sexuality, every aspect, every dot and iota of the experience. I’ve even devotedly studied tantric sexual meditations, which have enriched my entire life.

Mr. Wolf is not present in my bedroom any more. The ability to bar him from any area of my life was such a huge victory that it is almost indescribable. Over time, that victory has led to many others, large and small. Now, he is no longer the star he once was, but has instead been relegated to a mere annoying bit player in my life.

Make no mistake, it was that first victory – regaining my own sexuality – that was the turning point in achieving my mental and physical stability. I will always have lupus, but lupus no longer has me.

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 is its very breath.

— The Curator


  1. Dear Curator,

    A story I can relate to. Just as I was finishing my first year of graduate school, I was diagnosed with lymphoma. My treatment consisted of fairly extensive surgery followed by 4 months of what would today be considered harsh radiation therapy (maybe medieval torture). It was brutal, fuck; I ended treatment at 6’ 1” and 122 pounds! Pretty scary after starting treatment with a 44” chest, but the alternative would have ended my story in about 18 months. Instead I finished graduate school. I entered a career in the great isolated, ivy-covered research/teaching universe before my wandering interests nudged me to jump out into the real world. With the support of my spouse and life partner, took a leap into the industrial-corporate complex as a research scientist and somehow, after many years find myself a senior manager. Amazing what happens.

    My partner and I moved merrily along our path, keeping fears of the nasty malignant cells buried as deeply below our consciousness as possible. The fears were there, I struggled with them from time to time. But I usually won the struggle. Well mostly. What caught us by surprise was a very sudden slowing of physical capability about eight years ago. Partner and I had always been reasonable active. Then walking became difficult. Climbing became difficult. Worst of all, sex became difficult. This really started to generate some mental issues. Sex had always been a driving force in our life. Nothing made sense. I was put through more test than I can remember. In the end, what was found was that all that radiation had caused scaring of the arteries in my chest, my heart valves, my lungs, and muscles in my chest and back and my body could just no longer compensate. It has taken several significant surgeries and a whole lot of time with the chiropractor and in the gym but I am still here. And sex is greatly improving!

    I tell my partner that we can never give up on sex. It keeps us alive. It is not the only thing in our lives. Although, it is certainly one of the very, very biggest! If we ever give up on sex, we have started to give up on life. I am not ready to do that. It will take a lot more disease and injury to make me give up on either.

    Is Still Here

  2. Wow! You really are Surviving Survival! Thank you so much for sharing your experiences. It is so horrible that treatment is often worse or at least as bad, as disease! Congratulations on your continued success and kudos to your partner for providing support and love. I'm gay, so my partner is a woman. She's had a difficult time with the uncertainty, as you so vividly described. It's always in the back of her mind, even if it's not in mine, that tomorrow may be the beginning of the end. I have incredible respect for the partners of folks with disability, and urge them to reach out for support groups, too. I'm so glad to hear that sex is getting back to more normal for you. I really learned how important it is to help you feel alive, and connected again. It seems so obvious, but anyone who's been sick knows that sex is NOT the first or even the last thing you think about during recovery. It was a long time before I was able to carve out great sex, but it was worth the effort, and I truly believe it's a HUGE part of keeping me stable, physically and emotionally. I am awe struck at your courage, and your story. Thank you again so much for taking time to write so evocatively. I truly bid you health and lots of sex, m'dear!

  3. Having a partner, of any gender, stick with you through the trials of illness and recovery is a true blessing. We will be traveling over the holidays to the wedding of a close friend of ours who was divorced by her previous husband when she contracted breast cancer and underwent double mastectomies. No comment on the former husband, I haven’t learned a curse word foul enough in all my 50+ years (OK, I will be honest, nearly 60 years).

    Many people question the worth of committed relationships. My experience has convinced me that all of the effort to maintain the commitment we made 37 years ago has been justified. At times it has taken a lot of effort. In 37 years, partners can find many ways to challenge each other. We certainly have! But we never gave up on each other. I cannot imagine going through the last few years without the sustainment of Still Here Too.

    Besides, was I uncommitted and trying to function in the over-55 dating scene, I have serious doubts I would have much luck. Even with my new buff body (really have been working hard at the gym), as soon as the shirt and pants came off, the scars would scare off all but the freakiest beings out there :).

    Is Still Here

    P.S. I believe I mentioned this in a comment I posted on your original Lupus posting, so excuse any repetition. I found your blog through the listing on Belle de Jour's blog. From time to time I have checked her postings. When she announced to the world her true identity, I found we had a small overlap in our history (at least spatially in the USA and in technical interest, temporally I match much better with her parents ;) ). This led me back to her blog where I found Sexhibition. Your blog, especially your comments about dealing with Lupus triggered a desire to start a blog of our own. Still Here Too and I live and work in an environment were open discussion about the topics we have been posting (well, just beginning to post) is essentially taboo. So, thank you for the encouragement.

  4. Belle de Jour/Brooke Magnanti is a constant marvel to me. I'm thrilled that you found my blog through her's, and that you're beginning your own! I think what you've gone through will inspire so many others. It's also very cool that you and Brooke have quite a bit in common, in terms of the science background. The only science I know I learned from watching Star Trek! I'm 53, so I think we both should be proud of whatever age we've managed to log! Thanks so much for writing. Email your blog address when you get it up and running, and I'll post it. Have the happiest holidays!

  5. Usually able to make computers do what I want! But haven't found you email address and your profile is blocked :-)

    Our blog address is:

    You can contact us through e-mail through the site. The anonymity just reflects how new this is to us and the environment we live and work in. Give us time. :-)

  6. What the heck, might as well expose our geekness. We liked Star Trek too, along with Dr. Who (but the new series hasn't been the same without Billie Piper), but the one we really miss is Farscape. Who cares about the science. Those were sexy aliens!

  7. I have linked your website to my blog, so everyone who reads it will see the link (at the bottom of the page.) Your blog looks great, I wish you much success. Feel free to link to my blog, too. To me, the more people who read this type of information the better. Thanks again, so much!

  8. I have blocked email because of the type of material I profile. I got some rather unpleasant (vulgar) emails when I listed it!

  9. Thank you. We have listed you on our blogroll (which will be moved to a little more prominent position on the site one of these days). Appreciate the issue with email. Noticed a comment posted the other day that you apparently had to delete. Just something one has to deal with in order to have an open exchange on these topics. Enjoy discussions with you and your posts. Best wishes for the holidays. Hope no more blizzards soon (New Jersey, believe you wrote once - we have friends in Philadelphia - gather it has a really bad storm).

  10. Thank you so much! I hope you both have a Blessed Holiday Season, too.