Tag Archives: MS and Intimacy

On porn, or the decidedly awkward moments of writing about sex


As you may know, I have MS. As you also may know, I am writing a book about MS and relationships, particularly intimate relationships. Why? Well, they say, them as can’t do , teach…

Seriously, though, I started this project (to my children’s everlasting squeamishness) when I was first diagnosed with MS. I am single, and dating, and I wondered. So many of my friends with MS have given up sex, or have such difficulty with it. Their relationships suffer from these difficulties, or other problems with communication and touch.

I asked my neurologist about it and got inappropriate giggling. I asked the MS Society, and got the advice, “Talk to your partner”. My MS nurse said “Well, some people use a bag of frozen peas.” Giggling was demeaning, I didn’t have a partner, and I like to eat frozen peas, but not after using them for, ahem, other things.

It wasn’t enough information for me, and I wondered what others felt. We held an information session in Ottawa on sexuality and MS and it was a packed room, with people staying on to ask many questions. I did an online survey and over 100 participants had challenges and questions about sex and MS. They wanted information.

Girl-Hiding-Behind-BooksSo in I plunged, as it were. I’m a public health nurse by background, so a bit middle class and vanilla and of course have no experience in the darker arts of intimacy, so suffice to say it has been an education for me (and my long-suffering friends).

I’ve investigated all sorts of equipment, I’ve spoken to experts, I’ve looked at the scanty research. My borrowing history from the library is slightly embarrassing. For the most part, it has been fascinating – new information to me, some things I would never have known. Things like how people with MS may have difficulty interpreting facial expressions, or how we can lose concentration right in the middle of things through no fault of our own or our partners. All about sensory overload or underload and the challenges of incontinence and muscle spasms and the glories of sex furniture…(I’m saving up for a Liberator lounge, but primarily because it looks like a perfect place to curl up with a good book).

I’ve been to sex shops, played with the toys, found much to inappropriately giggle at. Investigated safe and unsafe nipple clamps and binding equipment, lifts and DIY vibrators. Wandered the aisles of Dollar and hardware stores with a titillated eye, looking for ticklers and sensation increasers.foodporn_july1

But what about porn? Some people find it arousing, so I figured it was something I should include for those who need a bit of visual help. Most porn is, to my mind, degrading and boring, but perhaps that’s just me. I asked at the sex shop – I didn’t want the icky stuff you can find online, I wanted the stuff that was deemed “female friendly”, the stuff that didn’t feature brutality and that maybe had a plot. My counsellor there was unenthusiastic. But she was a girl, and I honestly think it’s unusual for girls to enjoy porn – women seem to need more context, prefer a storyline, like Diana Gabaldon’s fantasy series. So I asked some guys of my acquaintance.

They sweetly, and shyly, shared their DVDs with me.

And nope. Still gruesome, still blah, still all too frantic and yet uninteresting for me.  Three thoughts occurred to me – first, honestly, why do people watch this stuff? Secondly, do people actually think sex is like this? And third, I can see immediately the urge to escalate.

See, it’s all pretty boring. In out in out. Same old. I always think of the late great Alan Rickman as the Metatron in Dogma,

Bethany: What’s he like?
Metatron: God? Lonely. But funny. He’s got a great sense of humor. Take sex for example. There’s nothing funnier than the ridiculous faces you people make mid-coitus.
Bethany: Sex is a joke in heaven?
Metatron: The way I understand it, it’s mostly a joke down here, too.

So what I got to wondering is, for the people who use porn as a stimulant, wouldn’t you get bored? Wouldn’t you want to up the ante, as it were? Wouldn’t you want to seek the more challenging sites? The ones with force or whatever? And how does this fit into our rape culture? What does constant exposure to porn do to our minds, our hearts, our sense of ourselves and others? What does it do to the image of loving connection?

I’ve got a list, from an expert, of possible okay movies and links to include in my book as a reference. I’m glad I had an expert to consult because I don’t want to take my brain there.

My dad once told me about how you have to be careful what you put into your mind. (He was right – I can still see the opening sequence of Friday the 13th Part 2, which I saw when I was in university back in the 80’s. To this day I look around before I open my fridge at night.) I don’t want to have images of women and men faking sexual enjoyment fill my head.

Right now I still think of sex as fun.

And funny. Where is the Metatron when I need him?

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Well, F*** it all, anyway.


img_1503-1I’m in a mood. I get in a mood whenever my MS takes a little bit more of me away.

When I’m IN that mood, the following things make me furious:

Statements like, on the Shift.ms website: “MS doesn’t mean giving up on your ambitions, just rethinking how to achieve them.” HA!

Statements like: “My XXX has had MS for years and she still walks five miles a day. Healthy living, you know.” GRR!

Statements like: “Oh, you don’t have spasms like XXX has. His are really bad.” OH REALLY???

Or anything that either suggests I can’t possibly do something, or, alternatively, that of course I can do something. Or people telling me I have it good, or people feeling sorry for me.

It’s an angry, crotchety place, my current locale, surrounded by thorns. Can’t move in any direction without being offended or put out or frustrated or angry. I’ve been in it for a few months now and I don’t like myself in this spot. I much prefer to be the cheerful, “Well, tomorrow is another day” kind of gal. The one who copes well all the time, the one who LIVES her life instead of dragging from one day to the other.

The one who doesn’t feel like ripping the throat out of anyone who says anything about MS or life or feeling or anything. Mine or their own.

My excellent counsellor tells me I am grieving. That I need to allow mys11855132-largeelf to grieve to let things go. Well, I don’t know how to grieve. I’ve never learned. I can fake it, yes I can, I can look moodily out into the middle distance, etc, etc, but grieve? Nope. Not in my makeup, not anymore. Too much has gone by ungrieved I have a bloody ice jam in there and the surroundings will likely be flooded if I chip away at things. So it just piles up in huge lumpy blocks of coldness…

So much hurt, so much loss, so many things I’ve tucked away into their own personal hurt lockers and slammed the door. Everything from when I gave out Valentine’s Cards in grade eight and the boys who received them put them on the floor and stomped on them, to when my brother called to tell me my dad had died and I was just pulling the turkey out of the oven for a dinner with friends and I sat there and made polite conversation like I didn’t care. From being a married mother of three to being a divorced mother of distant children. From living with the loss of my job and identity through MS through constant struggles to find meaning in the new life I deal with every day.

But then I give my head a shake. First world problems, I tell myself. You have enough money to have a comfy home, good food, can go out and have fun occasionally, you have friends who put up with you and the occasional more-than-friend who holds you close. Your cat loves you. So what if every action requires days of recovery? No one is bombing you or starving you (alas) or hurting you. You have nothing to complain about.

And truly, I don’t. I am grateful for so much, it seems churlish to complain.

So I’ll just try this grieving thing and hope I can undo the ice jam, just a bit. Time to think about my blessings. Time to do some “aggressive self-care”, as my lovely cousin puts it. Beware of flooding. And maybe take a page out of Roald Dahl’s theory of life and try to think happy again. If only to look lovely…

 

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Hug the world goodnight


Despite the metal sign over my door that reads “Laugh Out Loud”, I’m not a fan of those stick on aphorisms, the endless “Live, Love, Laugh” painted bits of wood, the tiny segments of quotations that are so bland as to make them meaningless. Bit I do have a yearning for little bits of poetry, excerpts from movies, last lines of great novels, somehow included in my life, hidden but in plain sight.

I have “Let the world breathe you” hidden in a rug I’m doing for a backrest for my bed. I 51PZS3Z5J9L._SX258_BO1,204,203,200_found that in a tape by Andrew Weill, MD, one of the few hipster gurus that seems to have his head screwed on right (plus he’s so darn healthy and happy looking it’s hard not to believe him. Every time I have salmon with butter I raise a toast to him and his advice.) On this relaxation tape, he encouraged listeners to simply let go and pretend that the world was breathing for you. Try it. It feels wonderfully supporting, like there really is a god and he or she truly cares for you. It IS miraculous how our bodies work. Even if they slip up now and again, they take a lot of abuse and keep on supporting us…

Another line I’ve always liked is from Walt Whitman, as quoted in “Now, Voyager”, a movie with the fabulous Bette Davis, finally escaping into her own after climbing out from under a domineering mother. The movie also has the Claude Rains, a man of infinite charm.

The poem, called “Untold Want”, has always pulled at my soul. See what you think.quote-the-untold-want-by-life-and-land-ne-er-granted-now-voyager-sail-thou-forth-to-seek-and-find-walt-whitman-311738

As with my favourite word, hiraeth, there’s an undefined feeling of longing. I’ve always had that. It makes me restless, not discontent, just endlessly searching for something. Perhaps for my long-gone parents, perhaps for a community, perhaps for my spiritual past. There’s another word, from The Meaning of Liff, scothropping. It means making the shape of what you want while looking for it, as in making your fingers look like scissors when you are digging through a drawer looking for them. I figure that’s what I’m doing 3with my various activities – knitting while looking for ties, needle stabbing while looking for sensation, writing while looking for my mind, playing the ukulele in search of music. Or maybe I simply want Claude Rains. Or even a fabulous hat.

I’ve been reading a lot about relationships for my upcoming book on MS and intimacy. I read that, of course, it’s hard to be intimate if you aren’t intimate friends, if you don’t share lives or ideas or non-naughty life together. It’s shared experiences and ideas that make the relationship weather the rocky parts. It’s the touch of love, not sex, that builds connection, the caring interest, the pat on the back. My marriage starved through a lack of feeding that side, both of our faults.

So I was thinking of the pillows you see everywhere that say “Kiss me goodnight.” It occurred to me that the pillow should be meant for BOTH partners, whereas now it seems to read like a command for one to the other. Or maybe the pillows should read “Hug me goodnight.” Because a hug can mean so much more than a kiss, which in my case leads to lust and then well, the moment gets all tangled up with that.

And then I got to thinking that the real thought should instead be gratitude. Gratitude that the world still exists, that the sun will rise tomorrow, that you are lucky enough to have a partner who loves you in the world. Or, in my case, a purring cat sitting on my chest. Whipping his tail past my eyes.

So maybe the thought should be to hug the world goodnight…hmm. Maybe I can work that into a bed pillow…

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Pitching the publisher, post-recovery


Well. Life is good.

I went and pitched the publisher those many weeks ago (or so it seems) and managed to gather interest – won “best pitch” and impressed my envelope of goodies upon a publisher. The book, tentatively subtitled: MS and Intimacy, looks like it’s got legs, as they say. Many of them are in odd positions (sorry, couldn’t resist)

ImageSince then, I’ve been struggling as I, overwhelmed, try to get back into writing chapter 6. My co-author, Karen, and I, plan to do up chapter six, redo the cover letter (which I feel was a bit rushed) and send the whole package out to an agent or two and perhaps some additional publishers.

So, why the struggle? My computer died, and had to go to the doc. I am typing on my netbook, which is cute at times but also leads to people saying “I feel your pain” when I mention same. The keys are closely arranged for my stubby fingers and I often delete total paragraphs unexpectedly. I think I’ve figured out the key formations that do this but they are closely enough located that I can’t help pressing them as I race along.

And then, I’ve got life popping in here and there, demanding attention.

Little things like cohabitation agreements, love in all its glory, fall cleaning, Thanksgiving, travel, needing to eat, etc.

Today, it’s a glorious fall day. I must get out in it, somehow. So, since I am struggling to write, I think I’ll put my chapter six outline into my head and go for a stagger while my brain processes it.

Maybe I can trim the overload and write.