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Well, I wonder if my Internet hit count will go up because the word sex appears in the title of this post. Such is the power of titillation, long known by advertisers. Funny, the word titillating is itself kind of titillating. Come to think of it, so are the words "Bits and Pieces". Anyway, on with some titillating tidbits (yet another word with titillating tendencies)…
Don't worry, I'm not about to descend into the tawdry. Not that I'm above tawdry, mind you. Back in my healthy, single days, I always believed that a little occasional debauchery did a soul some good, as long as all parties involved took part in the monkeyshines of their own free will, and no harm, emotional or physical, was done to any living thing. Eat, drink, and be merry, and all that. Life is full of uncertainties, sometimes you've gotta eat dessert first.
Unfortunately, the effects of MS and many other chronic diseases can dramatically impact the ability to partake of such shenanigans, and a few recent news items got me thinking about how sexuality is quite often a silent casualty to such illnesses, much to the detriment of those suffering from them. Sexuality is an important part of the human experience, and of all the losses meted out by disabling diseases, the effect on the sexual self may be one of the most keenly felt, yet least often talked about.
So, I submit to you the following news items, which I think shine some light on the issue …
· A new documentary film, "Scarlett Road", details the efforts of Rachel Wotton, an Australian sex worker who specializes in catering to the needs of a very specialized clientele, people with severe physical disability (click here). Among her clients is John, a severely disabled multiple sclerosis patient who relies on a chin controlled wheelchair. According to the film's website (click here), the benefits John has received have not only been emotional, but physical as well. In addition to increased self-esteem, he's regained some physical functionality that he thought was lost forever (and not just in his nether regions).
Human beings are incredibly social creatures, and the power of touch and a warm embrace are very real indeed. Loneliness is difficult enough to deal with for those lucky enough to be healthy, but for those poor souls locked in dramatically unresponsive bodies, the feeling of enforced solitude must be crushing. Though their bodies may be broken, their minds and spirits certainly are not, and for those so profoundly stricken the need for physical affection, for the exhilarating warmth of the intimate touch of another human being, for the feeling of somebody gently lying beside them, sharing a sensual embrace, must certainly be incredibly precious, its fulfillment tremendously and perhaps infinitely enriching.
Despite the supposed sophistication and enlightenment of modern societies, the severely disabled are still stigmatized and marginalized, and although lip service to their humanity is often paid, in reality far too many suffer the anguish of being a personality trapped in a useless prison of flesh and bone, their psychological and emotional needs barely even acknowledged. Some may question the morality of sex workers being paid to satisfy the needs of the severely disabled; I would question the morality of a society that forbids it, that denies the fulfillment of these most basic human wants and desires to those who need them most.
Thank you, Rachel Wotton, if for nothing else than simply caring. I wonder if there are similar services available to disabled females suffering from the same lack of physical attention?
"Scarlett Road " will be premiering at the Sydney Film Festival on June 11. Hopefully, it will soon be available for viewing outside of Australia.
Scarlet Road Video from Paradigm Pictures on Vimeo.
· A 66-year-old wheelchair dependent man with multiple sclerosis, Mr. Jim Keskeny, was kicked off a nudist cruise through the Caribbean after he injured himself while trying to use the toilet in his "accessible" cabin (click here). The man was traveling alone, and considered himself a "nudist at heart", although he hadn't previously participated in the nudist lifestyle, and decided at some point during the cruise that he didn't want to take his clothes off after all. Following his injury, the cruise line decided that he was in too debilitated a state to be traveling alone, although Mr. Keskeny was a seasoned traveler, and unceremoniously dropped him off in Mexico, leaving him to make his way back home to the states. The passenger claimed that he was perfectly able to take care of himself, and that the cruise line had simply used his accident as an excuse to get him off of the ship.
I'm embarrassed to admit that at first glance this story made me snicker. After all, the whole scenario seemed a bit absurd, a very disabled man signing up for a nudist cruise, sure to be populated with some extremely able-bodied naked people, a situation that seemed rife with all kinds of potentially (pun alert!) prickly situations and scenarios. One could easily question the man's motivations, and ridicule the almost predictable state of affairs he found himself in, but I quickly realized I was casting judgment on the man when perhaps all he was trying to do was be "normal", and satisfy some lifelong curiosities.
Putting aside all questions of infringements on the rights of the disabled and the legality of cruise line's actions, who among the afflicted doesn't yearn for some normalcy, to just once act on our wants and desires without having to account for the physical and emotional burdens wrought by bodily disability? Though taking a nudist cruise might not be everybody's cup of tea, it obviously was Mr. Keskeny's, and by God he went for it, torpedoes be damned. Certainly, his motivations for wanting to take the trip were no more or less prurient than those of his able-bodied fellow passengers, so why should the fact of his disability make any difference whatsoever? If he wanted to explore his sexuality in this manner, or simply just wanted to feel the freedom he perceived in the nudist lifestyle, more power to him. Rather than be subverted by his disability and assume the role of social outcast, Mr. Keskeny asserted his humanity and followed his heart's desire, certainly displaying some bravery in the process. Good for him.
· On another sexually related tangent, the drug sildenafil, better known as Viagra, has been shown in animal studies to reverse the course of multiple sclerosis symptoms (click here).
Upon seeing this headline, I reasoned that since Viagra works as a vasodilator, opening veins, this could play into the CCSVI scenario. Upon further investigation, though, it appears that the mechanism of action in regards to MS is the reduction of infiltration by inflammatory cells into the central nervous system. The mouse model of MS, called EAE, was used in the studies, and mice with EAE don't have blocked veins.
The fact of the matter is that EAE is a terrible model for human multiple sclerosis, and is induced by injecting the unfortunately targeted rodents with myelin proteins, provoking an allergic reaction within the animal that results in central nervous system damage. This bears little if any resemblance to the disease mechanism of the human illness, which is why so many loudly trumpeted "breakthroughs" in MS treatment on mice fail to translate into similar success stories when tried on humans. The simple fact of the matter is that mice don't get MS.
However, if Viagra does eventually prove to be beneficial in the treatment of multiple sclerosis, how ironic that a drug renowned for increasing stiffness in a certain body part might relieve a disease one of whose hallmarks is severe muscle stiffness. All I can say is that if the famous little blue pill is effective in treating multiple sclerosis, a lot of newly spry men are going to need to get their trousers altered, needing a little more room just below the waist…
No need to titillate me into reading your posts. I am always happy when they appear in my inbox!
ReplyDeleteYou highlight a very important component in the human existence: the basic need for intimacy and touch.
As always you are a gift to readers: able-bodied and busted- bodied alike!
Nicole
Fascinating juxtaposition of recent news. I'm especially intrigued with learning of yet another superior Australian legality and it was a welcome follow-up to the cruise ship fiasco. You go, Keskeny & Bernstein!
ReplyDeleteMarc, you do know don't you that tidbits in England are called titbits and so retitling your blog posts (Tit)bits and Pieces should increase your readership considerably. :D
ReplyDeleteI wonder with all the current sexting news and studies now being done if there's a high percentage of sexters who are disabled.
I find dealing with neurologist about this sort of thing alternately amusing and appalling. My last one (in former city) just giggled and intimated it was my partner's fault. If I'd been a man, would he have reacted the same way? I think not.
ReplyDeleteThe whole sexuality thing is problematic - there's the attention thing, there's the loss of body sensory signals all over, and then there's the more area specific problems. It's off-putting, even with an understanding partner who must eventually wonder why he is touching skin when there is no response.
The cruise ship thing was horrifying. Nudists argue that their lifestyle is not about sexuality (I've never been with them so aren't sure about that) and all sorts of shaped people share this lifestyle, so the fellow would not have been out of place except in that he was disabled. Which speaks to a prejudice that I didn't realize existed in nudists. Does it?
Hope you are doing well, MArc.
I've been diagnosed since 2002, had 5 neurologists and not one has ever uttered the taboo S word. Constipation either. A female PS talked with me once (about constipation, not sex).
ReplyDeletekicker
You've done it again. This post is tender, touching and timely. Thanks.
ReplyDeleteflies
Waaay back in the day ('70) my dearest friend, a social worker by education, was a sex therapist whose client base was adults who had become severely disabled due to accident or disease. She was an amazing, compassionate woman who helped many regain a part of their lives they'd thought lost forever.
ReplyDeleteSadly, she died in a plane crash off Tahiti a couple of years later.
Another beautiful, helpful, thought-provoking post, Marc!
Sadly awesome posting. There is little more annoying than under sensing wood. When the whole process becomes 95% mental, it becomes harder for all involved. I've always subscribed to the sex is only 15% of a good relationship, but nobody I know claims it's the last 15%. Unfortunately, for many it's a block preventing a feeling of true closeness or feeling like one has taken care of obligations to one's partner's happyness.
ReplyDeleteThe medical mind fill never ceases to amaze me!
ReplyDeleteNicole
That viagra could help is not ironic in the sense that viagra helps the blood flow to a certain body part and CCSVI also is a problem with the blood flow.
ReplyDeleteFurthermore, the veins are infuenced by hormones. My son had nosebleeds when he was diving. The specialist said it would cure when his puberty was over. Remember MS appears to be formed before puberty.