The occasional wallowing, or how I wish I could chat with Sophia Loren

19 10 2018

Approved-Sophia-Loren-Armando-Gallo-Photographer-I have a lot of friends who are dealing with chronic illness or the illness of loved ones or bereavement or even the loss of pets. So when I saw this article, it called to me: “The Other Side of Grief” by Whitney Akers. The article links to a group of stories about how people coped with their grief, from goat yoga on… One of the points made truly resonated with me:IMG_8129

“Even years later…a sense of deep loss comes in cycles, is hidden in the nooks of your house for you to unexpectedly stumble upon, and becomes a part of you forever…”

So true that. I fell across a sketchbook of my dad’s the other day (he’s been gone 32 years now, for context), and I had to stop and catch my breath, the feeling of loss was so acute. Every time I see an apricot poodle, I am overcome with memories of Pickles the wonder dog, my best friend through many years of my marriage. I talk to someone about a work issue and I can’t help my mind from skipping back to things I wished I’d done differently at work. I feel again the loss and embarrassment I felt when I was forced by my MS to leave employment.

People with chronic illnesses deal with incremental grief, too – every new challenge needs to be adapted to, self-image redefined. Inside we try to stay the same as we were (or better still, learn from our experiences), but our outer selves change and toss us aboutfunny-picture-dump-the-day-53-pics-funny-funny-misshapen-body a bit.

Sophia Loren says: “If you haven’t cried, your eyes cannot be beautiful.” I agree. It’s like parenting or running a marathon. Unless you’ve experienced significant loss, you really don’t understand. And the type of loss isn’t what is important. It’s what it does to you. You can grieve the loss of a pet as heavily as of a person. (I urge you to avoid grieving for plants or fish though as they die frequently and you’d just be a mess.)

I’m not saying it’s okay or good for anyone to grieve constantly. I think that just lays you waste. But in my experience, it’s good to be prepared for those little bits of grief that leap out at you from the corners. It’s extra special good if you can appreciate the feeling and then use it to enrich your world, by helping others or creating art or even just smiling at strangers who look like they might be having a terrible day.

Sophia Loren also says:
“I’ve never tried to block out the memories of the past, even though some are painful. I don’t understand people who hide from their past. Everything you live through helps to make you the person you are now.”
Mind you, perhaps sharing ALL of your past might be unwise (shameful details might lead to the wrong impression…;-) ) (ahem)

 

Of course, Sophia also said:

e4e93e94-73ea-4980-b49f-e124be457e98“Everything you see I owe to Spaghetti.” and “Spaghetti can be eaten most successfully if you inhale it like a vacuum cleaner.”

See why I love this woman?

So, while I’m not inhaling spaghetti (though now I am dreaming of it), I’ve decided to take the lumps the world has given me and sculpt them into something else. I know it helps.

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Moist

29 08 2018

humpty-dumptyWords – I love them. I even love the great huge portmanteau words (a la Alice in Wonderland) that carry loads of meanings between their consonants. I am gently mocked by friends and stared at by strangers when my three-syllable ones tumble out instead of shorter, clearer phrases.

It’s my sloppy brain filing system. I reach back for a word like orange and find titian, or ocean and find briny deep. I’m not happy, I’m exuberant. I have been known to galumph.

I blame Anne of Green Gables. I grew up like her – a little lonely, odd, wrapped in books and words like Aloysius. I read on my own, so my pronunciations are a bit dodgy. Poor Aloysius the fox lived for years as Alloy-si-us…

But there are some words that seem to be universally hated. Moist is one of them. It’s moisthard to find a pleasant use for the word, unless maybe in describing a cake or a towel, but otherwise, moist is tied to sweat, sweimages-35aty dark places, mouldering bread, dampness where none should be.

This is a moist summer. Offensively so. I honestly don’t think there is a spot on my body that is not moist at this very instant. Even my fingernails seem damp. The weather predictors use terms like humidex (ours uses the much more telling ‘frizz factor’), but really they are talking about moistness. How much there already is in the air, how much you shall personally generate, how much you will appreciate the drying effects of air conditioning.

I have never been so ready for the crispness of fall when I will feel my brain drying out again. I feel like I’ve been moist for far too long and the condensation and rising damp has seeped into my cerebrum.

I feel certain that, were someone to poke into my brain, it would feel like left-out-too-long zalivinoe, jellylike and fishy, with odd ideas floating around in it as the aspic melts in the heat.

zalivnoe-iz-sudaka-prazdnichnoe

borogoves_by_knot_a_typo-d7ot988At present, the old creativity-inducer seems positively mimsy.

“Well then, “mimsy” is “flimsy and miserable” (there’s another portmanteau for you).” Humpty Dumpty, explaining the poem ‘Jabberwocky’ to Alice.

I’m going to have to thrash it out of somnolescence soon – this is the weekend of the famed #3DayNovel contest, and I have foolishly signed up again. Been told before this is a somewhat pointless exercise, not important, but for me, it is a reclaiming of the grey matter and white matter I’ve eaten holes through with my MS and the dang moistness…Some get tattoos, some walk across the Rockies, I throw myself at a computer and write. Hoping I can unmimsy my grey cells and leap in…twistedbrain_main-800x533

 





On Royal Weddings, PDA, and the Preservation of Love

22 05 2018

I’m not a royal fan, though I give the Queen all sorts of credit for serving her office with

harry-22 grace and charm throughout some tumultuous years. I’ve always been suspicious of inherited positions and wealth – it’s so cynical of me because of course, I inherited privilege as well – a healthy upbringing, sort of, good food, education, support. I suspect people feel the same way about me as I do about the royals.

This wedding, of Harry and Meghan, well, it won me over. It was THEIR wedding in so many ways, less pomp and more love. Lots of PDA. Hand holding! Who’d ever thunk it?

Weddings are funny things, anyway. You and some other person you think you love stand before all your mother’s friends and tell each other that you will stay with them forever, and then you go back and lead your own lives, sometimes stuck together or not. What, me bitter? Naw.

wedding-disasterMy ex and I dined out on the disastrous story that was our wedding day for years. It was horrible from stem to stern and at the time I was so proud that I held it all together. I’ve always been proud of holding it all together. It’s a thing.

I held it together that day when my father was taken out in an ambulance just before the wedding photographer arrived. I held it together when I knew he was in horrible pain, and yet my mother wanted to ensure the whole party went on. I held it together when my ex looked at me in horror at the altar (to be fair, he thought my dad had died). I didn’t complain when I started vomiting wildly on the wedding night, thanks to the impact of erythromycin, a dental infection, and champagne on my stomach, even though my ex never awoke as I shivered and retched. I didn’t fall apart when we went to the hospital to see my father the next day, and he struggled to keep back the tears.

I didn’t comment when my brother’s poor girlfriend had a mental breakdown because of the rudeness of one member of our family, I didn’t even offer my sympathy (I was overseas, but that’s no excuse – I probably felt in my mind that she was showing weakness.) And I didn’t even lose it when I realized I’d worked six months to pay for my mother’s friends to have a party. Or when my sister’s wedding got so much more support. (The family was accustomed to weddings by that point, less of a shock, and she is much better at stating her wants than I. Though she had her sorrows too – dad was long gone by then)

I’m good at holding things together, at least until lately. So why did I burst into tears at seeing Harry weep? At seeing their hands tightly clasped?

Ah, regrets, I’ve had a few. What possessed me to marry a man so afraid of PDA (public STOP-NO-TOUCH-TALK-EYE-CONTACTdisplays of affection) that I went without a kiss for 23 years, except in “certain situations”? I was raised in a home scarce in physical affection, and I hungered for it like an abandoned puppy. By the time my marriage ended, I was looking at men thirstily on the street, wondering, if I asked them politely, if they’d kiss me, just once. I went to my dentist just to feel his hands on my face. I screenshot-2018-02-12-11-37-34remember my doctor touching my shoulder once, briefly, when I got my diagnosis of MS. I feel every touch every man has given me. God knows there have been few enough of them. I fell in love at the first man who was kind to me, who gentled me. Sadly, he was the only fellow I’ve met in all the years since I left my ex that was trustworthy with me. And he was lying to someone else.

818741c5b89bab894c5bad43ef3e4896It just about killed me, those years of affection desert. It’s taken me years to admit that I am a touch junkie (thus the needle felting in soft fuzzy wool, the craving for milk chocolate.) It’s taken me longer to understand that love requires regular feeding and care, regular laughter, regular kisses, regular touches, regular attention.

Just before the end of my marriage, I used to insert nonsense words into what I was saying just to test if he was actually hearing me. He wasn’t until he learned the phrase I was saying. We laughed over it. I was good at holding things together.

It’s taken me even longer to understand that holding things together isn’t necessarily a good thing.

So, this royal wedding made me think of my ex, now remarried to a lovely lass who is much better at speaking up. I wonder if he’s happy (ier).

I know I am lonely. Not for him. But for a kindred spirit, a companion with hugs. And perhaps a little coziness. I wonder what it would feel like to be with someone who wasn’t afraid to hold my hand and weep a little with me at the beauty of love, even if all sorts of people are watching. I’m tired of holding myself together. Sometimes I need a hug to pull in all my bits.

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Oh, Mouse!

5 04 2018

220px-TheMousesTale-Original.svgI’ve been reading a lot of research results lately and I’m starting to get disturbed. There are millions and millions of little mice going the way of all good research animals to help us figure out MS, Alzheimer’s, Parkinson’s, and lots and lots of other disease entities.

I am grateful for their (unwilling) service. I can’t say to stop the research on these poor wee things, because their contribution has been massive. But I am beginning to worry about the net karmic loss of snuffing out all those millions of mice for every year of study. Sooner or later, the balance has to shift and we’ll all start dropping from some mouse virus and it will all be fair, really, given how many tiny souls we’ve sent over that crowded rainbow bridge.

Every time I inject myself with my “disease-modifying medication” I send a wee thank you to the mice who squeaked their way through the multiple trials before we even dared to give it to humans. There’s even a special kind of mouse, bred to develop an MS type illness so then they can try to treat it. Mice bred to develop all sorts of other illnesses, too. So not only do they live their lives in clear plastic cages with little sensory input, but they get illnesses they normally would never have to deal with.

Upon such tiny lives are ours based.

Now, I know, your average wild mouse has an extremely short lifespan. We aren’t White-mouse-in-lab-009necessarily changing the length of the life of these mice. We’re just making them miserable for all their lives.

Of course, I may be wrong. Perhaps there is an inheritability acceptance of their sterile home. Perhaps, like families who refuse to leave Cape Breton or Gimli or the Eastern Townships for generations, these little creatures know nothing else and so think they are in paradise. After all, they get fed. Their nests are clean. I’m not sure if they get to mate with other sterile mousekins (but they must – otherwise where would new sterile mice come from?)

And there is hope. Mice don’t accurately represent human diseases after all, and they are pricey. So many doctors are giving them up as research subjects. Stem cells are making big inroads into the mouse subject market.

I do hope we stop using animals for research eventually. Maybe we could use those stem cells. Or Republicans. Or the Liberal government in Nova Scotia at present. Something with no feelings. Just sayin’.

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Hanging out in a liminal space

6 03 2018

liminal-space-definition-ofI have a feeling of being in transition, of being in between the not anymore and the not yet. I’ve been chewing on it ever since I saw my dear friend incarcerated in his body from a stroke, and struggling in a nursing home.

The push onto the threshold is also because this is my 60th year. My parents were wrapped in end-stage cancer by this age. I’d been married for a few years by that time, my children born before my mother left us. It is so hard to believe this was so long ago; also so hard to believe that I am this old. In my head, I am still a rollicking 45 – not as spry as a young ‘un, but no way am I as old as my parents were!

In a real life and space, I’d be planning for retirement, I’d be managing some poor employees, I’d be all serious and such. Maybe I’d even have learned to play golf. Instead, on my “freedom 50 get MS plan”, I’m looking down the wrong end of the telescope at a life that seems very far away.

Not that I don’t have one now – lucky me with friends and family and a view of the harbour and almost my health! I am definitely NOT complaining.

6c6a49f23bf8b7fb1bcff4f50f1a1971--love-birds-for-the-birdsI’m sensing a change coming, though, like a fresh wind. Maybe it’s the birds doing their still-chilly spring romantic dance. Maybe it’s the fact that sometimes, sometimes, I feel a bit like I can play the ukulele. Maybe it’s the repetitive strain injury from stabbing wool for hours…or the look of my still not right bedroom, covered in wool and still-waiting-to-be-unpacked necklaces and clothes.

I’m tempted to throw it all out. Sell it, give it up, start fresh. It seems to be on the backward side of the threshold. But what is on the other side? What can I do next?
When I was in first-year university, I didn’t have any money to buy my parents a160503_BOOKS_Allegory.jpg.CROP.promo-xlarge2 Christmas present. So I wrote them a story, about a unicorn and a girl making choices at a fork in the road. It was so dreadfully heavy with allegory I’m surprised my parents could lift it, let alone read it, but never mind, I can do a good preaching when I set my mind to it. They cried. My English teacher read it and told me it was trash.

images-8In the story, the Unicorn was there to help the girl along the rockier path she chose. It was meant to symbolize the coming of adulthood and the need to take on responsibilities, as it were. It had capital-B Bears in it who were my parents, who were ahead of me on this treacly road, who provided support from afar; it provided sympathy for what they’d lost by taking on adult responsibilities.

It was gruesome, I tell you. Whenever I am feeling too full of myself, I get it out and read it, and then go brush my teeth. Three times.

But I’m feeling that split in the road now. The need to figure out what this later bit of my life will come to mean. The tasks that will keep me sane. The things that will bring me joy. Housekeeping just ain’t it.

I know a few things will have to figure. Since my fall yesterday, I know I am going to have to throw myself back into physical fitness. My body is quitting on me, but that doesn’t mean I have to help it. It’s time to really allot time to exercise as I have done before. I’d say I should give up scotch, chocolate, and cheese, but let’s not get crazy here!

That means less crafting time, as all of that takes time and space.

I’m going to work on friendships, because I love them so much and often don’t get to meet up with my friends. (or family – that has to change, too) I don’t want to end up alone. I’ve seen how that can go, and it’s nasty.

This can also mean less crafting time, though most of my friends gather to do crafts, so maybe not…

Creativity is important to me, too – so I’ll have to work that in somewhere, somehow,00f5dde1205620d312e1ccceeabc3210 using words or needles and thread or wool or both.

So I’m standing on a doorstep. Time to step forward…just have to push myself through all of these piles of wool first…(but wait – I still want to try this, and make that, and there’s Alice and other stuff I could try and even little things …)

Maybe I’m not quite ready to step over that threshold … seems like I’ll be liminal for a while yet.

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It’s Evening. . .

21 02 2018

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Of a foggy foggy day, filled with grey skies so low and looming that one could easily slip away in them, vanish like the ferry as it skims to and fro. The fog has finally cleared and the reflection of the lights on the water seems oddly bright. Even the ferry lights seem shinier than usual, against the fog-calmed sea.

Brain-Fog-Clouds-in-Xray-headI’ve been feeling foggy, myself. Lots going on, various family and non-family tragedies and worries, enough to keep my brain spinning unproductively in the mist. Toss in another school shooting, more horribleness about the fascist-leaning land to the south, and the fog deepens. A good friend of mine writes satire and humour about the Trump government – I’ve told him I can’t read it anymore. I used to keep track of the lies and foolishness through twitter and news sites; I can’t anymore.

Of course, this is what the “they” want. Numbness vs. outrage, passive acceptance. Our own Canadian government clothes platitudes in tight pants and expects us to not see their real plans. Meanwhile, the oligarchs plan and plot and gradually little bits of our life and our planet are teased away from us.

powerpuff-girls-key-art-smallBack when I was younger and full of piss and vinegar, I used to take this on (that’s me on the right, a rare thing). I wrote letters, went to protests, was active in party politics. I’d love to do that again, but I realize I can’t – my brain doesn’t hold onto facts anymore (if it ever could) and my arguments slide away into inappropriate confessions and parries and thrusts with blunt weapons. I embarrass myself. It’s truly awful. As I get older I keep my mouth closed more and more…or regret speaking more and more!

So I pull the fog blanket over me and go play with my art, wander around my ‘hood, filled as it is with comfortable people who smile and greet me, distract myself with movies from more innocent times, drink a glass of wine.

I need to pass the torch on images-6to others whose brains can formulate arguments and make sense. They need to keep their noses to the grindstone, their foot on the pedal, to blow away the fog of fatigue. I can’t anymore.

 

 

But maybe that’s okay. The kids know much more than I ever did.





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

22 04 2016

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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