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