In Hysterics

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Photo by Josh Barney

I’ve been sick. I’m now well-medicated and functioning but I’m still sick-ish after two months—a personal record. It began early this Fall, when in the space of four weeks, I had two colds and one stomping stomach flu. It wasn’t an ordinary bug that razes everything for 24 hours before blowing over. It dragged through an entire week, attacking and then relapsing on all 30 of the people who caught it at our family’s Thanksgiving potluck. My immune system cleared all of that up then opted for something other than its usual return to idling in the bod’s background. Sensing the state of me, maybe—the stress and overwork of preparing for a looming week of PhD qualifying comprehensive exams, my grief at the hard times of some of my loved ones, or tens of thousands of things—my immune system cranked the throttle open, blew me into bedridden bits for weeks.

The world of a sick person is small and terrible. Reading made me feel ill. The to-do list I’d been compiling during the months of exam preparation—catching up on satisfying household projects, overdue time with my kids—all of that was beyond me. Not even my lifelong fix, food, was available. Unable to eat much, I lost about 13% of my weight. (Never congratulate someone on sickness weight loss. It’s just suffering made visible.) But in small worlds, small me, there is still gratitude. As I lay in bed, I was glad to have a bed—a comfortable, warm bed in a safe place. I thought of my ancestors, with the same physical problems I have only trying to rest in cold, damp, crowded cottages without big tubs of running hot water to soak their bones in, and I was grateful.

I was grateful for the kindness of my family, especially my husband, especially when I’m doing nothing to earn it. I wasn’t unkind to him but I wasn’t a very thoughtful partner to him during this illness either, like when I brought him with me to the mother-of-all rounds of blood tests my doctor ordered to rule out every infection he could before putting me on a drug meant to depress my immune system. I forgot that the sound of the vials of blood coming on and off the needle makes my husby woozy, and he didn’t remind me as he stood beside me in the lab, shaky and pale having to hear it all.

Beds and caregivers—in my country, these are considered basic rights of sick people and I’m grateful that these are our collective ideals even though we fall short of them. The next thing I am grateful for is more rare. I’m grateful for spiritual guidance through my illness. While I was sick, we reached out to our faith community and someone arrived at our house with food and treats for my children, friendship, prayer, and what I must acknowledge was true inspiration. I remember our visitor saying in prayer that I needed medical attention. If I was a different kind of person, this advice might have been trite. But I am this kind of person. I am a rundown middle-aged woman with pain, fatigue, bad digestion. When physicians first coined the word “hysterical”, they were talking about me. The inspiration was at once advice and a warning. If I wanted medical attention, I would only get it through insisting, persisting.

The first doctor I saw told me I likely had bursitis in my elbow from leaning on it while holding books to read. He suggested a fancy drug I might not have thought to try myself yet called “Advil.” I cried and begged and he prescribed a stronger pain killer so at least I could sleep. When I ran out of it, I couldn’t bring myself to beg again and I ate the old pills I hoarded from my sons’ wisdom teeth extractions. The hysterical have learned to be resourceful.

The third doctor I saw told me it was just fine for someone like me to give up eating and phoned a GI specialist, talking extremely loudly, announcing my full name, birth date, and current bathroom habits to an emergency room ward crammed with people. This doctor’s medical attention came with a vague insult about my middle-aged figure and a flagrant lack of regard for my dignity and humanity. But heck, it was nothing more than I deserved for following the advice of my second doctor, my family doctor, and clogging up the ER, desperate to make an end-run around the appointment desk of a specialist’s office by gambling on seeing one in the hospital clinic. The maneuver failed and I was sent home with an assurance someone would call me with an appointment. Still waiting.

By this point, medical attention had been awful and useless. It reduced me to something mewling, dirty, sneaky, superfluous—a noisy waste of time and space. Make way for a baby with a rash, a guy who dropped something on his foot. The hysterical’s fight for medical attention can be hopeless–painful, please stop paying attention to me. I don’t want any more. I’ll go.

Truly, I would have quit and gone home to bed, given up on the life I used to think I’d have, if it weren’t for the confidence I had in the spiritual guidance I’d received. This kept me hounding the clinic until my family doctor, working outside his professional comfort zone, found the confidence of his own to prescribe the medicine I need right now. Confident is the opposite of hysterical. The spiritual provides a vantage point to see “things as they really are” rather than things as a lifetime of systemic bias against us can dupe us into accepting. Do not accept it. You need medical attention. You are worth it. Carry on.

“Gush” Release in Calgary

GUSH YYC launch flyerCatch me in Calgary on Thursday 28 June as I help launch Gush: Menstrual Manifestos for Our Times. It’s a new anthology from Frontenac House edited by Rosanna Deerchild, Tanis MacDonald, and Ariel Gordon. My contribution has a laugh at how I can answer the old timey cliched question of whether I thought I was dying the first time I got my period with “No, I thought I was getting my period the first time I was dying.” Trust me, it’s funny.

Author Copies of “The Apocalypse of Morgan Turner” Have Arrived in Alberta

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My kids forgot to mention the heavy brown box that arrived today until I found it by the front door myself. I un-boxed my author copies of my brand new novel on the kitchen counter while my charming low-key 16-year-old did some charming low-key cheering. For the first time, the cover is glossy instead of matte, which feels better in my fingers. The colours are from somewhere on the food spectrum and make me a little hungry. Now that it’s here, my husby is reading all of it from start to finish it for the first time. So, yeah, super nervous.

One week until it’s officially released!

Book Promotion Begins!

Morgan cover

With just two more months until the release of my new novel, The Apocalypse of Morgan Turner is starting to get some buzz. We had a mention in back in October 2017 in Publishers Weekly‘s roundup of upcoming releases from Canadian publishers. The AML included us in its preview of 2018 fiction in a November 2017 blog post. Now the book has been included in 49th Shelf’s “Most Anticipated” list for Spring 2018.  So pleased. March 10th is coming soon! Gratuitous exclamation points for everyone!

Sunshine Ceiling 4LYFE–Maybe

 

Lately, my husband has been ending remarks with “…for the past two years.”

And I have been correcting him with “…for the past three years.”

That is how long it’s been since we moved our family back to the city—three years only, three years already. In a large family like ours, where seven timelines run simultaneously, three years is more like twenty-one. Graduations, promotions, publications, growth spurts, near misses, rescues, the death of our insane pet bird have all happened in that time. Romania and China have happened in that time, all based from our house in an aging suburb.

The house itself hasn’t fared as well as the rest of us. Wear and tear happen here to the power of seven as well. When we were trying to decide on a house to mortgage (it’s still too early for me to think of it as something we bought), we made lists of the improvements we’d have to do once we chose a place and moved into it. Once we decided, our home improvements started right away. Walls were painted, trees were planted, the forty-pound metal, office grade fluorescent light fixture which used to buzz and flicker over my head in my laundry room/office was taken down. The renovations started, and then they stopped.

 

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No, I still haven’t peeled away this odd, flocked white wallpaper in my son’s bedroom. Frankly, the room is chilly in the winter and it might have been put up in the first place to provide a little extra insulation. Whatever its original purpose, no one cares that it’s still stuck to the house. When I told the boys, three years ago, that I was willing to repaint and redecorate their bedrooms, all I got for a reply was “Why?” I prefer to credit this to their easygoing-ness rather than slobbery, and I happily go along with it.

Speaking of paint, fancy paint finishes were trendy in the early 2000s. Remember? I am purplewallterrible at pretty things and never attempted the trend myself but the last person to decorate my rec room and my all-purple-walls-all-the-time bathroom mastered this highly textured technique. It’s dated now, but I’m not sure how to remove and redo it. So I haven’t.

 

 

 

This is the undone renovation I notice most often: the staggering anticlimax which is a twelve-foot chain suspended from a vaulted dining room ceiling which, after all that tension, ends in…a simple pendantlamppendant lamp. Maybe that’s what bugs me most about it—the chain and its lamp are bad storytelling, right there in my front room.

For lighting in the kitchen, we still have a sunshine ceiling—1990s shorthand for fluorescent tubes and smooth plastic panels.  Two of my sisters bought houses of the same vintage as mine and their sunshine ceilings were the first things to go. We all had equally bad feelings about them but I got distracted, didn’t act on my feelings soon enough, and now—the moment has passed.

 

The moment has passed for all the brass trim in the basement too, for the “bone” sunshineceilcoloured special-order 5-plex light switch plate by the front door, for the rattly aluminum blind in the living room with its dimming rod held in place by a paper clip. I’ve settled into all of it now. The chain-and-pendant lamp is still in some danger, but the rest of it—no one cares, not even me.

 

I suppose this means we did it. In three years we have truly made a new life for ourselves. Looks like it’s done not by making everything perfect and different and new, but by making new priorities, letting go of things that might have been important once, to people we used to be, getting comfortable with the baggage those people left when they turned into something new. Maybe “settled” isn’t the right word for it. Or maybe I don’t even care about that anymore. Simply put, some of our priorities have shifted to make room for things we never would have dreamed would become important to us. It’s a metric of change and—I hope—of growth.

Unsolicited Advice on Talking Dementia

brainAs a staff member, volunteer, friend, and family member, I’ve spent a lot of time in seniors’ care homes. I like being there, but it is a challenging environment. Of all the struggles people who need to go into this kind of care have, the worst may be dementia. In the homes I’ve visited and worked in, I’ve never seen anyone treat a dementia patient unkindly, but I have noticed a few well-meant sorts of comments that backfire and cause them anxiety. Inspired by my sister-in-law’s recent blogpost on how to talk to deaf people (yes, go read it), here are a few tips on how to talk to people with moderate dementia.

Laugh and have fun, but don’t make jokes that rely on sarcasm or any other kind of communication not meant in an absolutely literal sense. It’s confusing and not worth it. The aides at my family member’s care home have a running joke about getting in and out of the residents’ suites through secret passages. Cute, until residents ask their families to bring in crow bars so they can tear up the carpet and find the passageway.

Don’t admire their possessions too enthusiastically, even if it’s only to make conversation or be polite. Dementia can frame compliments as conspiracies. The patient may initially seem pleased but the more they dwell on the compliment, the more they may begin to suspect someone might be out to take their nice things for themselves. This gets complicated, especially if they hide treasured objects in safe places, forget they’ve done it, and then the stuff may as well have been stolen.

On the other hand, they may be so pleased with a compliment that they offer to give away an object someone has admired. These offers must be refused. Most care homes have policies against staff accepting residents’ possessions as gifts and with good reason. As another one of my sisters-in-law says, people with dementia remember concrete things better than they remember abstract conversations. They may forget that they offered something and be distressed when they find it’s missing and can’t remember how they came to part with it. So leave everything where it is. Don’t even borrow anything. Leave it.

Wait rather than finishing their sentences. Conversation is hard when familiar words just won’t come. Speaking a first language becomes more like speaking a second language, where if everything would slow down a little, the dementia patient would do much better. Be clear and slow and specific. Pause even if it means sitting through silences, waiting. While waiting for the patient to find the words, don’t say much more than a few words of encouragement, like, “Take your time. It’s okay.”

Stay positive. This sounds outrageously trite but being in the moderate stages of dementia, when patients understand their minds are slipping but can’t do anything to stop it, is depressing for everyone especially the patient. This depression feeds off the frustration and grief of other people. When the patient is in a good mood–even if it’s a bit wacky, even if we’re not in a good mood ourselves–go with it. Be delighted in their happiness and relieved their clouds have lifted. Sometimes, they even want to laugh about the strange things they’ve said or done. Keeping laughing with them. Laughing together makes things feel normal again.

But we won’t always be able to stay positive. If we felt no pain or grief at the changes in our loved ones, we’d be less human. None of us has perfect control of powerful feelings like these and forgiving ourselves for our lapses is part of the lifestyle of someone helping in the care of a dementia patient.

Don’t expect too much late at night. Energy ebbs and flows during the day. By afternoon nap time and late in the evening, it’s spent. Being exhausted makes it impossible to maintain the peak presence of mind a dementia patient may be able to muster in morning and at dinnertime. Personally, as much as possible, I insist on morning time slots for my loved one’s appointments so she can be at her best.

Listen to their concerns. Their concerns might be unfounded in reality [see the secret passageway]. They might be more like obsessions, repeated over and over again. Listen anyway. Only force questions on them if the false concerns seem to be upsetting them or could start rumors that pose a threat to other people. When questioning, try not to argue. Act like a careful, well-mannered lawyer leading a witness to give evidence. Provide their story with a map of reality to fit into, then stand back  a little as they find their own way to make it fit.

A friend contacted me after I wrote this to share her experiences dealing with a loved one with dementia who kept asking after family members who had died, expecting them to still be around. To avoid devastating patients with the “news” of deaths, my friend recommends just redirecting them with, “They’ll be here later.” If you’re a spiritual person, it’s true, in its way.

In cases where concerns deal with what patients might have done to bring dementia on themselves, assure them it’s not their fault. Diseases like alcoholism and syphilis are indeed connected to both patient lifestyles and dementia. But most dementia patients don’t have those kinds of risk factors. Unfortunately, well-meaning tips for younger people about avoiding dementia–stuff about reading, learning a second language, doing Sudoku–have been taken by some very dim and silly people who don’t understand the difference between correlation and causation to mean that dementia patients must have been mentally inactive and lazy during their younger years, and that people who don’t get dementia are better people than those who do. This is not at all true. It’s offensive and shameful when people without dementia say it, and heartbreaking when people with dementia say it. Let’s all agree to never say it again.

 

A Bunch of Bad Reasons for Not Writing

blindmansbluffUnlikely as it is, I have done my most intense and productive writing during summer months–except for that one summer when the irises of my eyes got inflamed and I temporarily lost a good portion of my vision for about a month and could not write at all (well, hardly at all). The inflammation may or may not have been the result of too much time spent looking at an old, fuzzy laptop screen, writing.

In light of this–and many, many other things–I am probably not someone to model oneself after, but if you’re out on the interwebs right now looking for a pep-talk to keep you writing through the summer, consider this it.

A writing atmosphere of bad, cozy weather is one of the stereotypes repeated on “Memes for Writers” Pinterest boards where the aesthetic is all sweaters, cats, and hot drinks. Setting up any kind of external setting or internal personality or background as essential for writing is counter-productive, usually elitist, and simply irritating for writers interested in actually finishing a writing project. So enough of that. No more passwords or potions, no rites or effete orthodoxies, no self-indulgent mythologies about who writers ought to be. No more talking about writing in a way that draws only the ‘right’ kinds of people into thinking of themselves as writers, trusting themselves as writers, and braving the risks needed to publish. Enough. Ignore it.

 

You can write even if:

  • You weren’t a bookish child. Don’t worry if you can’t stare into the middle distance, all dreamy, and claim your best friends growing up were books. If your best friends were actually people (and I’ll bet that, for just about everyone, they were) you are better off in every way, including as a writer.
  • You aren’t a voracious reader now. It’s true writers have to read in order to learn who we are and how to do what we do. It’s true writers owe everything to readers. Thanks for reading this right now. But you don’t always have to have someone else’s book on hand in order to have something of your own to write.
  • You have kids. Writing will be much more difficult and distracted with constant kids in your life. You knew that going into this. But it can be done. Virginia Woolf was wrong about this one. Trust Shirley Jackson, and Ursula LeGuin, and Zadie Smith, and hundreds of other people writing in the teeth of their offsprings’ childhoods.
  • You don’t drink too much coffee. It’s just short term gain.
  • You don’t drink too much alcohol. It’s just long term pain.
  • You aren’t a native speaker of the language in which you want to write. In fact, newness to a language might be an asset (I’m staking my MA thesis on it, so I sure hope so). No one experiments with a language in original ways, no one wrings new things out of the same old lexicon like someone who has learned it as a second language and approaches it free from the cliches and conventions native speakers have been bound by since we were babies.
  • You don’t have an MFA in creative writing. Whatever your education or experience is, it is part of your training as a writer and the weirder, less prescribed it is, the better it is, in my opinion.
  • You’re allergic to cats.
  • You get along with your family. In fact, make sure you write something if you get along with your family. The literary world needs more families who find conflict in things other than breaking each other’s hearts.

There it is. No excuses, no exclusions. All the best this summer!