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
Your comments about dealing with disease and not giving up on sex ring so true. After many years and many illnesses, we realized that we were headed down that path. This is not who we were nor is it who we want to be. It took courage to admit that we were slipping into acceptance. Or perhaps, the socially- acceptable path the part of the world we find ourselves in wants to force upon us. Your words, and writings of others like you, have helped us realize that while we cannot open up to those immediately around us, we can open up to others through the Web. Thank you for sharing your experiences. You have given us the courage to further open our own communication and to seek people who may think more like we do about how life should be lived. We are re-engaging what was and we now know can still be a very close and rewarding (and active!) sexual and emotionally close existence.
ReplyDeleteThank you, Is Still Here & Still Here Too