The Smack-Down With Mr. Wolf, Part I: The Retreat

As regular readers of this blog know, I’ve been struggling with worsening lupus for many years now.

Because the illness feels so very alive to me, as if it has an actual personality, I have referred to it throughout as “Mr. Wolf,” chosen because lupus is the Latin word for wolf.

I am sorry to say that my constant furry nemesis has gained an upper paw of late. As a result, I am taking a hiatus from penning this blog until I am again well enough to do the topics covered here the justice that they deserve.

As a sex-positive, bisexual woman, I believe that having a gloriously frequent, confident sexuality with a consenting partner of your choice (or being self-sexual) is vital in maintaining personal health – and even your very humanity.

It is also way beyond time that this country participates in a continuing frank and honest dialog about sex and relationships for the health of our children, and to promote a global/cultural understanding so that sex and gender issues no longer lead to hate, bigotry, bullying and too often to violence.

Those were the underlying goals that prompted me to begin this blog. Those goals continue to drive me, so I will remain very active on Twitter, re-tweeting news and commenting about these issues in a timely, and I hope, interesting and even challenging manner. I have found that penning 140 characters is much easier for me right now than writing and researching detailed posts required to put this blog together.

So, until Mr. Wolf gets sick of me instead of me being sick from him and I can resume this blog, please follow me on Twitter. Please do tell me what’s on your mind — and who’s in your bed and what you’re doing!

I cannot thank you all enough for your continued support throughout my battle with Mr. Wolf. I hope that I will be able to rejoin you here in this space soon. In point of fact, that is why I have called this post Part I: The Retreat, because when I am able to resume writing this blog that I love so much, the title will be Part II: The Return!

Happy living and loving, to all. Cheers.

— The Curator

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.

— The Curator

In Praise of Sentimentality

This holiday season has brought up quite unexpectedly a lot of issues for me, one of them involving what sentimentality means in life and love.

As regular readers know, I have been enduring the abrupt loss of libido because of medication side-effects for treatment of Lupus. It is the first time in my adult life that my sex drive is virtually non-existent.

As a result, I have been reflecting on how integral my sex life has been in being able to express and receive love. I'm bi-sexual, and am in a long-term loving monogamous relationship with a woman. Currently, I am providing my partner with complete sexual attention, but want to cuddle afterward instead of receiving any sexual contact in return.

Surprisingly, I have been feeling really good about this arrangement, while my partner has felt some guilt. We've been trying to talk through it, since my lack of sexual interest has nothing to do with her, etc., and I really, really love being able to LOVE her to satisfaction.

Touch triggers so many memories of our lives together, a living link of connection and commitment. But, even if that were not so, we share a history that is parts sweet nostalgia and facing serious struggles – both losses and gains tallied on a ledger that has nothing to do with monetary value.

I was discussing the relative merits of our lives with my dear and very wise friend, SurvivingSurvival  this week. Is sentimentality really so bad? No, he said, it's important to feel a sense of our past, and to hold it in our hands for as long as possible.

Being sentimental is not a sign of weakness, and does not have to be discarded as the flotsam and jetsam of an unproductive, unrealistic life. Rather, it can be viewed with perspective, underscoring all that we have done, and all that we have yet to do.

Like everyone on the planet of a certain age, I have loved my family, friends, partners. Every contact has left behind a memory, some through the senses, but others via a letter, or a greeting card to celebrate some distant milestone. These are personal treasures, and I choose to protect these vestiges of my life of love. They are as precious to me as the magical mist that swirls through our collective consciousness.

— The Curator

Project Desire — A Personal Update

Sadly, my Mojo remains a no-show.

I have Lupus, which I refer to as “Mr. Wolf,” because lupus is the Latin word for wolf, and because it has devastated my life sufficiently to have more than earned his own pronoun.

A recent insurance nightmare forced me off of a key medication because of cost. It’s an injectable bio-medication that alters my cells so that my immune system is less whacky. Eventually, the medication was restored but not until I’d gone off of it for about three months and gotten really, really sick. I was thrilled to have the medicine again but something unexpected and unpleasant – ’natch – happened. I suffered and am suffering from horrendous side-effects. It had never occurred to me that would happen simply by resuming the medication, since I’d used it for about 10 years.

I have endured the nausea, aches, hot flashes (I’m 54 – well past menopause) and fainting spells like a trooper. But, the worst side-effect totally blind sided me: In the twinkling of an eye, my libido disappeared without even the courtesy of an adieu!

Frankly, desire has never been a problem for me, at all. My sexual issues all related to being able to perform despite the physical limitations, disability, imposed by Mr. Wolf, which not only includes losing range of motion, a lot of pain, but also debilitating fatigue. So, I had no problem getting revved, but rather staying revved at certain...critical...times.

As regular readers know, sex has been saving my life – or more precisely, has helped me decide to hold onto it for as long as I can. When I’m having sex, I am no longer disabled. The pain and misery that has been Mr. Wolf’s calling card transcends into pleasure. Touch and intimacy has been my link to life, and to the divine. In those moments, I am my true self again. Not a disabled person on her way out, but a vibrant woman who was put on this planet for some purpose beyond her finite understanding. (I have always lived my life as a sex-positive person, but if I hadn’t, Mr. Wolf would have converted me at the very first orgasm!)

Now, desire seems a foreign concept. The doctor has said she does not know when my sexuality will reassert itself. I refused to accept that and launched Project Desire, in an attempt to rekindle the ’ole fire down below.

Thus far, re-igniting desire’s flame as been a very slippery – or in my case a very non-slippery – slope.

The usual suggestions to increase desire in women who have lost or lower libido don’t really apply to me, because I’ve lost it as a result of medication issues, not through poor self-image, or some other emotional factor.

What I have been doing is:

— Continuing my usual masturbation routine, making sure that I use plenty of vulva-friendly lube! I have been an enormous proponent of solo sex for decades. It allows women, who generally have little experience with it compared to men, to take charge of their own sexuality and needs. Masturbation can teach women how they like to be touched and what they don’t like. It also teaches how to accept and love our wondrous female bodies, especially if you’ve suffered abuse in the past (I was molested when I was a young girl.) I remain committed to masturbation, even if it doesn’t lead to orgasm, it is still a very erotic, sensual practice. FYI: Let me be very clear, masturbation is REAL sex!

— Reading erotica by my favorite authors including Alison Tyler, Alison's Wonderland, and Radclyffe, Trauma Alert. There are so many great women writers who pen erotica. If you’ve not taken time to read any of it, do yourself a favor and experiment. Read some reviews, then jump right in. There is something for everyone’s tastes, from mild romantic fare to hard-core, explicit, fetish, kink and everything in between. If you like to fantasize about BDSM but don’t want to actually try it, reading erotica with that theme might be the perfect solution.

— Watching female produced porn, including the fabulous Crash Pad series featuring the amazing Jiz Lee and others, and the erotic DVD’s by the Welcomed Consensus. Like masturbation, fewer women than men watch porn, but the number of adult women viewers is the largest growing demographic in the field. Just like reading erotica, there is porn for every person’s tastes.

(I’m bisexual, so I like erotica and porn that is either focused on straights, gays, or a combination of the two – isn’t that so cool!)

— Doing as much sensual touch, kissing and foreplay as possible. Receiving a massage can be both sensual and a pain-reliever for me. I love this, even if it doesn’t end up in bed.

The result of the above strategy? Thus far, my libido remains in very cold storage.

I hereby make the following promise: I refuse to just give up! Damn it to hell, Mr. Wolf can have my joints, and even my ability to walk, and eventually my life, but he will not take away my sexuality forever. He will not because I WILL NOT LET HIM! Period.

— The Curator

Project: D—E—S—I—R—E!

I’m old enough and motivated enough to be really good at sex.

I know the subtle, and not so subtle, nuances required to consistently give and receive enormous pleasure. I’m not bragging, it just happens when you age – and provided that you care to learn. I have always cared to learn. That’s why these last few weeks have been especially brutal.

As regular readers know, sex has been 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. (Visit the Lupus Foundation of America America for more information.)

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. It causes a great deal of pain, stiffness, and I’m losing my ability to walk, and to use the fingers. It also often makes me really exhausted, frequently feeling like I have the flu. And at the end of it all, is the end of it all, as it’s eventually fatal.

Recently, Mr. Wolf has been really having his way with me – and not in the good way, either. (Ironically, October is Lupus Awareness Month. I am soooo very aware – but others need to become aware, too. Research for this disease needs funding, duh!)

During the current onslaught, I blogged about having had a sudden, horrible realization: I could no longer truly remember what it felt like to be well. Oh, I had memories of being very active, athletic and whole, but they were no longer sense memories. It was as if that part of my life was so insubstantial it had been absorbed into the unreality of dreams.

That’s why sex has been so very important. When I’m having sex, I am no longer disabled. The pain and misery that has been Mr. Wolf’s calling card transcends into pleasure. Touch and intimacy has been my link to life, and to the divine. In those moments, I am my true self again. Not a disabled person on her way out, but a vibrant woman who was put on this planet for some purpose beyond her finite understanding. (I have always lived my life as a sex-positive person, but if I hadn’t, Mr. Wolf would have converted me at first orgasm!)

To say that it’s not easy, emotionally or physically, to have a consistently satisfying sex life when you’re disabled, suffering from an acute disease or illness, is an enormous understatement. I worked really hard at overcoming and/or coping with my physical limitations to be truly, satisfyingly active and intimate; to re-build my core sexuality from the ground up, as it were. I was convinced that by doing that, I would establish and be able to maintain a razor thin edge of stability. My goal was not to perform sexually as I had before since that would be impossible, but to re-invent my intimate life; to re-imagine myself and the glorious, rich possibilities that only sexuality offers.

Libido had never been my issue, and I have always climaxed easily, but it was the mechanics of the thing – the how to, given my physical limitations. I may not be able to stop the constant pain/fatigue, walk much at all, or move my hands very well anymore, but I can still orgasm, damn it! After a lot of fun, fun, fun trial and fun, fun, fun error (don’t you just hate having to try, try and try again when it comes to sex!?) I re-established a vigorous sex life. Did it look like it did before? No. Was it satisfying? Hell yes!

I bet you can guess where this post is headed. Several weeks ago, I began reducing the number of my intimate encounters. Despite Mr. Wolf, I had been able to have sex several times each week – a number that even many able-bodied women can’t consistently manage.

At first, I thought it anomalous, but it wasn’t. The Lupus had worsened when I was forced off an important bio-medication for financial reasons related to my idiotic health insurance. I have resumed the med, but have not stabilized, and my libido is now definitely M.I.A. Apparently, it’s the side-effects of resuming the medication, as well as Mr. Wolf strengthening.

It may take longer than initially thought to get through the side-effects of the drug. I’d been on it a decade and off for only about three months. When I first began it, it was two months before the side-effects eased. Now, I’m 10 years older and the disease is much worse, so the doctor just told me that it may be closer to four months before the side-effects completely end, and two months beyond that until its benefits fully kick in! She does not know if, when the drug is finally good and truly in my cells doing its thing, Mr. Wolf will give up some of the ground he gained when I off the bio-medication, or if his aggressive presence is permanent.

[Above: Eros Sleeping!]

O-K then! I prefer to believe that I will be able to make up the ground, and will eventually send Mr. Wolf packing to a distant hotel (he always travels top drawer you know, so no motel for him!) So what happens to my sex life in the mean time, doc? How can I reclaim desire when I can barely stagger to the grocery store for food? More importantly, if I have to wait it all out before I can again be sexually active – or even want to be sexually active – what will that do to my psychological/emotional state? Should I try to re-invent myself yet again and attempt to establish a sense of well-being, a desire to stay alive and be connected to the divine without using sex at all as a significant means to achieve that?

Truthfully, I just do not know how to do that. I’ve agonized these past weeks until my puzzler has broken. Well, to hell with it! I will not abandon who I am. I WILL NOT! I will instead launch Project: Desire. I will try everything I can to add a bit of zing back into my life. It may not lead to full-blown sex, but some desire, and sensuality? I can do that, you bet I can.

So, Mr. Wolf, I am putting you on notice: I hereby refuse to allow you to turn me into a non-sexual blob of flesh again. NOT EVER AGAIN! I don’t care how long it takes, or even how I will manage it, but mark my words, I shall be a sexual human being again, because that is simply who I am.

I said this once before, but apparently Mr. Wolf thought I wasn’t serious. I am: Sex doesn’t just promote my overall health, it promotes the very breath of my life!


— The Curator

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.

— The Curator

My Sex Life as a Disabled Woman

Almost always, sex is simply too much.

It’s too much expectation; too much pain; often just too much effort that leads to too much debilitating exhaustion; too much disappointment. I’m disabled you see, so it’s rare that sex isn’t too much. But it just as often brings too much joy; too much connection; too much divinity; too much glorious pleasure that leads to too much unbelievably soaring release. So, far too wonderful to lose. Thus, I will reach out to my partner with my broken, weakening body until I am just too, too, too totally unable to do so.

I LOVE sex. I believe and live a sex-positive life, having found a true connection with the Cosmic Creator through practicing Tantra in sexual unions. But, this has been a pretty tough year for me. I have Lupus, S.E., and it’s devastated a lot of my joints (I walk with two canes), and is now working on the ’ole noggin. I’m 53, but feel more like 93 a lot of time (and no, not the new 93 either!)

I’ve lived with the diagnosis a very long time, adjusting my sex life so that the positions required for success could be consistently met with a partner or during solo sex. Recently, that’s been more and more difficult. It may well be that I won’t be able to find a comfortable position at all some day – so I have to prepare for that horrible possibility.

You know, most disabled women and men never discuss their sex lives or sexual problems publicly or sadly, even in private. There is such an enormous layer of shame surrounding it, like it’s somehow our fault that our limbs won’t respond like a “normal,” able-bodied person. Like we’re filthy, unclean in the Biblical sense.

Recently, I looked through a bunch of free porn on the Internet. No, I’m not into it, although there’s nothing wrong with porn, and I actually surprised myself by finding some of it arousing. I had been looking for an image to copy and stylize for this blog when I ran into some very troubling information. It seems that if someone is in a wheelchair, or is otherwise visibly disabled and are depicted in porn, it is produced as “fetish sex.” FETISH SEX! In other words, not regular-people-porn. (I can’t believe I’m arguing we should be treated better by the porn industry, but I am.)

Here’s the dictionary definition of fetish: “The paraphilic focus in Fetishism involves the use of nonliving objects (the "fetish"). Among the more common fetish objects are women's underpants, bras, stockings, shoes, boots, or other wearing apparel. The person with Fetishism frequently masturbates while holding, rubbing, or smelling the fetish object or may ask the sexual partner to wear the object during their sexual encounters. Usually the fetish is required or strongly preferred for sexual excitement, and in its absence there may be erectile dysfunction in males…Usually the Paraphilia begins by adolescence, although the fetish may have been endowed with special significance earlier in childhood. Once established, Fetishism tends to be chronic.”

Obviously, fetish has also come to be used to denote any preference that has an erotic or sensual tinge to it, even if it isn’t part of a person’s traditional sex life. So someone who really loves shoes may describe themselves as having a shoe fetish. On the other hand, someone who likes to incorporate fur into their sex play may say they have fur fetish. Thus, someone who gets off by seeing someone in a wheelchair has a disabled-person fetish? Holy crap, as if life with a serious/fatal illness wasn’t rough enough already.

Everyone needs to feel good about themselves at least a little bit to be able to have sex, rotten self-esteem takes the steam out of the sizzle faster than anything else. So, when the porn industry throws us under the bus, too, it simply underscores just how the rest of society must see us, too.

I had already discovered that there are no sex aids for the disabled on the market – believe me, I’d looked everywhere. As a woman, a gadget that would help me reach would be great, or something to support my arms while I try to pleasure my partner, since my hands are unable to work long or well. Nothing, zip, nada. Soooooo, I have been forced to improvise, as I’m sure all other disabled people must, too.

In many ways, I’m lucky to be female since I don’t have to depend on holding an erection, which must be a nightmare for a lot of disabled guys. I’m also lucky because I orgasm easily and consistently – as long as the right areas can be comfortably reached, that is.

Does society really think we have no right to sex? That we are non-entities, sexless eunuchs who should stay in the background. We should know and keep our place. Above all, that we are not flesh and blood human beings with deep feelings, passionate desires, and strong sexual drives. Are you surprised to hear that we have just as many earthly needs as you have? That we have as much of a birthright to orgasm you. Or, does the real image of a disabled person deeply aroused or in full orgasm repulse you? Be brutally honest. The truth is it might even repulse you if you are disabled.

I assume that any erotica penned that involves a disabled person would be considered fetish sex, or even deviant sex. That’s too bad. We disabled know a lot about sex – we have to. We have to understand how our bodies, and yours, work to be able to have sex consistently and successfully. We know cool little – and sometimes big – tricks that you might really, really enjoy. We are also very patient, and are often forced to go nice and slow. We are generally sincerely considerate of your needs and pleasure, and very grateful for the kind, loving touches, kisses that we receive.

You see, when I have sex and the pleasure begins to build (inside or within my partner), I am no longer disabled. My body is no longer broken; I am suddenly floating free and unencumbered in the loving arms of endless, universal bliss. Is it any wonder that I do not – will not – give up this part of my life, and steadfastly refuse to apologize for it?

(FYI: The only really complete book on the subject that I've found helpful is
Ultimate Guide to Sex and Disability, by Miriam Kaufman, et. all.)

— The Curator

Keeping the Wolf at Bay

Do you call out to deity during sex – when the universe dissolves and the only thing that exists is your body? Do you call out to deity during sex – when your body dissolves and the only thing that exists is the universe?

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

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

Sex to Life!

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.

I’ve been learning to deal with severe lupus for several years. You probably think this topic wouldn’t be connected to that challenge, but it is. Actually, it’s one of the most important aspects of coping with Mr. Wolf (the name I call my disease, since lupus is the Latin word for wolf.)

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 (of which lupus is both) soon discovers that there’s very little that the doctors actually prepare you for, in this new world of icky, awful illness.

Thus, 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.

I have the most serious form of the disease, Systemic Lupus Erythematosus (pronounced: er-uh-thee-muh-toe-sus), also called SLE. (See 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.

Why was my own body trying to destroy, or even kill me? Was it because I'm gay? Was it simply random?

I thought about it constantly. You see, Mr. Wolf not only effects my skin causing hideous red rashes (face, hands and legs,) but it’s systematically destroying my synovial joints, including the tendons in my hands, arms and legs, even the lining of my abdomen has been adversely affected. Sadly, I am slowly, but surely, losing my ability to walk.

I also have occasional swelling of my brain stem, which interrupts my cognition and memory – have I already said that? It has also attacked 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. I have found that even sunlight worsens it.

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.

I fell into a deep-as-the-deepest ravine depression. After a very long time, 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, bright even luminous speck of something had survived Mr. Wolf’s onslaught.

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, 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 even 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 in the right place, down there!

To be honest, I had no idea how to do that, either. So, I did what I always do when I have a problem, I researched, then I read, then I researched some more.

In doing that, I ran across some articles that mentioned erotica, then I ran across erotica! Whoa. I’m divorced and in my 50’s, and gay -- 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, then I read, then I researched some more. I soon rewarded, finding an incredible organization and website called, The Welcomed Consensus which is devoted to that topic, and so much more.

Thanks to the website, I learned the latest sure-fire techniques, all taught in a wonderfully sex-positive way that boosts confidence, as well as libido. Women are more than respected at the site, they are revered as the complex human beings that we are.

I even learned all of the correct names for my own genitalia, not only clitoris and vagina! It’s ridiculous that I didn’t know this basic information, don’t you think? Men certainly know their’s, as they do all women they have sex with, for that matter.

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! What to do, what to do? 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, then I read, then I researched some more. 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 zillions (at least it seemed like zillions 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, 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 whom I had been. 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 promotes the very breath of life.

---The Curator

Regaining My Life

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. I’ve been learning to deal with severe lupus for several years. You probably think this topic wouldn’t be connected to that challenge, but it is. Actually, it’s one of the most important aspects of coping with Mr. Wolf (the name I call my disease, since lupus is the Latin word for wolf.)

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 (of which lupus is both) soon discovers that there’s very little that the doctors actually prepare you for, in this new world of icky, awful illness.

Thus, 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.

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.

Why was my own body trying to destroy, or even kill me? I thought about it constantly. You see, Mr. Wolf not only effects my skin causing hideous red rashes (face, hands and legs,) but it’s systematically destroying my synovial joints, including the tendons in my hands, arms and legs, even the lining of my abdomen has been adversely affected. Sadly, I am slowly, but surely, losing my ability to walk.

I also have occasional swelling of my brain stem, which interrupts my cognition and memory – have I already said that? It has also attacked 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. I have found that even sunlight worsens it.

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.

I fell into a deep-as-the-deepest ravine depression. After a very long time, 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, bright even luminous speck of something had survived Mr. Wolf’s onslaught.

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, 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 even 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!

To be honest, I had no idea how to do that, either. So, I did what I always do when I have a problem, I researched, then I read, then I researched some more.

In doing that, I ran across some articles that mentioned erotica, then I ran across erotica! Whoa. I’m divorced and in my 50’s, 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, then I read, then I researched some more. I soon rewarded, finding an incredible organization and website called, The Welcomed Consensus, (Click here for the The Welcomed Consensus) which is devoted to that topic, and so much more.

Thanks to the Welcomed Consensus, I learned the latest sure-fire techniques, all taught in a wonderfully sex-positive way that boosts confidence, as well as libido. Women are more than respected at the site, they are revered as the complex human being we are. I even learned all of the correct names for my own genitalia, not only clitoris and vagina! It’s ridiculous that I didn’t know this basic information, don’t you think? Men certainly know there’s, as do all women, for that matter.

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! What to do, what to do? 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, then I read, then I researched some more. 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 zillions (at least it seemed like zillions 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, 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 whom I had been. 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 promotes the very breath of life.