Elevators Full of Spoons

elevatorIt’s been ten days since I was diagnosed with Crohn’s disease. In the medical sense, the condition is still “active” and has been for over four months while the screening process dragged on. Fortunately, it’s responded to my medications well enough for me to resume my usual routine as of the beginning of the new year. Maybe it’s crazy what we can get used to.

My doctor has a plan to put the disease into remission—a plan that involves a mighty gut punch to both the Crohn’s and me. Later this week, I report for the first in a series of intravenous “infusions” of a nowhere-near-real-chemo-level dose of a failed cancer drug that is now used to treat inflammatory bowel diseases. This is the “loading” phase of treatment, a combination of IV and oral drugs and weekly blood tests to make sure my liver doesn’t panic. My immune system is already mad about the pills, but she’s always mad these days. She’s sulking, taking her usual resistance to flus and colds with her as the drugs send her to time-out.

I need to settle in, simplify, and sort out what I’m keeping in my schedule and what needs to be set aside for now. I’ve read Christine Miserandino’s analogy comparing spoons to the units of energy chronically ill people get in a day. It started as a blogpost and became a meme and is now something more like a movement, arguing that there are only so many “spoons” available per day and once they’re used up, it’s bedtime. This means energy—spoons–has to be rationed, leaving sick people with weird choices.

For instance, it’s minus 25 degrees Celsius and your hour-an-half meeting is a twelve minute outdoor walk from your assigned parking spot which is already paid for. Are you going to double-pay for parking today to use the meter right outside the meeting, or burn a whole workday’s worth of energy trudging half an hour through the weather?

Or, you can have a shower, but if you stay in the water long enough to wash your hair, you’ll have to lie down as soon as you get out, and then getting up this early in the pitch dark will be pointless, so is this another quick from-the-neck-down shower and dry shampoo morning?

Or, you can go to the grocery store on the way back from work, but then you’ll have to go home and put your sore, dirty body in the bathtub instead of making dinner with the food you got, but you can’t take your meds without food, so is this another take-out Wendy’s baked potato night?

This is spoon rationing.

The spoon analogy is useful and has resonated with thousands of people. It’s a good shorthand when the time comes to apologize to someone for letting them down. Of course, it’s not perfect and needs to be used with caution and flexibility to keep it from backfiring. In explaining limitations to non-sick people, spoon theory can unduly emphasize limitations to sick people. Instead of inviting people into the struggle, it can inadvertently turn into an excuse for why they can’t come any closer.

Ironically, in its desperation to elicit grace, it can end up not leaving as much room for grace as I’d like. The grace I’m looking for from other people isn’t just understanding why I’m not quite myself right now and backing off. That’s not what I wanted when I texted my sister, “Say something cute, I’m having a sad-bath,” and she obliged by telling me about her day. It’s not what my friend gave me when she saw me coming in out of the cold and hugged me, boosting my power to warm up and my confidence in my choice to leave the house. It’s not what I feel when my group chat says “@_马珍妮 where the %#$& are you?” because someone is really hoping I’ll show up because I’m still me even if I’m old and sick. All of this is nothing, but so much.

Then there’s spiritual grace which is all about paradoxes and getting access to energy which spoon arithmetic says should not be available but sometimes just is.

Whether I’m having a day where I feel like counting spoons or not, there is plenty of rethinking and reorganizing for me to do as I work out the energy I need to keep doing not only what’s important, but what’s awesome. I have made one decision about my future already. I am taking the elevator. It’s not glamorous. According to our 1980s Canadian “ParticipAction” animated Claymation shorts, the elevator turns people into “a big fat ball.” The other day, I rode upstairs with a large unaccompanied garbage bin. No one here in the elevator but us trash. Doesn’t matter. My office is on the fourth floor and until this round of treatment is over, I am going there in the elevator. There—that’s a start.

Fortune Telling for Good Girls: a Tribute to My Recently Deceased Grandmother

20190209_013039My maternal grandmother, Meta McCarthy–born between the 1st and 2nd World Wars, dead as of yesterday–had a favourite passage in the Old Testament. She said if a girl found the verse in the last chapter of the book of Proverbs with the same number as the day of the month when she was born, the Bible would say something nice about her—a gyno-zodiac, a little Bibliomancy I learned from my good Christian Grammie.

The magic doesn’t start until verse ten, so my two sisters and two cousins born too soon in their birth months don’t get a fortune, which is awfully unfair. But the rest of us can play.

“Who can find a virtuous woman?” our King James translation begins.

My fortune is in verse 24: “She maketh fine linen, and selleth it; and delivereth girdles unto the merchant.” Sounds like code words for having to do the laundry AND go to work. True enough.

My mother, verse ten tells me, has a price far above rubies. Accurate.

Grammie’s other daughter, my auntie, has a candle that “goeth not out by night” which I am sorry to hear.

My middle sister “bringeth her food from afar” which makes no sense because her kids can come home from school for lunch, and my baby sister’s verse is about spindles and distaffs. More ornate iron-age messages about laundry.

Grammie’s verse is 28: “Her children arise up, and call her blessed.” Prophecy fulfilled, many times before and again now.

I knew my grandmother well, before she disappeared into Alzheimer’s disease when my children were babies.

She wouldn’t resist swimming at cold Atlantic beaches even if it meant going in fully clothed. Her favourite swimming move was the side stroke.

She taught us how to respectfully track a house cat around the yard, how to gather seeds from the hollyhocks and nasturtiums at the end of the season, how to knit, but not how to avoid getting busted by conservation officers for hauling away 5 gallon buckets of beach sand for the grandkids’ sandbox.

She was a pioneer meme-maker, overlaying our baby pictures with goofy captions. Her sense of humor was mostly fart jokes and that story about the drunk cousin who thought he’d made it outside and peed on the Christmas tree when she was a kid.

All summer, she drove us into “barrens” and woods to pick berries as though we wouldn’t survive the winter without them, and then brought them home to put up in reused pickle jars sealed with paraffin wax.

She used old-fashion Scottish words for things sometimes—especially us lads and lasses–and spoke in a drawn out sing-song cadence, complete with an inhaled “yeah-YEAH-yeah.” Her laugh was a cackle that I hear in my own.

Grammie chose a spiritual path for me decades before I was born. I’ve kept to it all this time. In its service, she took me with her on visits to the old, sick and lonely. When we went to see the lady with the coffee table made out of a Ouija board, the only comment Grammie made about it was a pleasant, “Well, will ya look at that.”

She took me to her 90-year-old parents’ house to spend entire days cleaning it, telling me to just graciously accept it as a compliment when Great-Grammie called me Dawn, after one of her other daughters.

When I got married at age 21 while living from one student loan disbursement to the next, she cheered me on anyway, giving me the wedding gift of enough money to buy my broke young husband the gold ring he still wears.

I don’t know what it would take to make a loved one’s death a welcome event. If anything could make it so, the almost-decade of profound Alzheimer’s dementia that was the conclusion of Grammie’s life before she died at age 97 might be it. It’s true, this is probably the least traumatic death of a family member I’ve ever experienced. But it is not nothing. And I arise up and call down her blessing.

In Hysterics

sickfeetI’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.

“Crotchetty, De-Crappity, Schnappity:” Goth Red Green and How My Summer is Going

I know two things about cleaning gravestones:

  • Don’t use bleach
  • Don’t use a big freaky gas-powered pressure washer

I learned this watching grave restoration clips on YouTube—an activity that’s turned out to be my preferred mental break during a summer spent in a very strange headspace, fighting to finish reading the 61 books and articles I will be tested on in November to see if I can continue in my doctoral studies. Ideally, I’d be done reading in two weeks, but as of right now, I still have ten partly finished books and one I haven’t even started. I love everything about grad student life except this and funding applications so it’s been a rough summer of paying my dues and trying to get paid for my dues.

Clearly, gravestone restoration videos were the answer.

Most of the videos are narrated by biocide salesmen (the crud on gravestones is generally biological–algae, moss, lichen, all of it alive), earnest professional conservators, or amateur genealogists who are just so disappointed. They use soft-bristled brushes, approved cleaners with PH levels matched to the stones, and rinse it all down with a gentle slosh of plain water out of a bucket.

“That’s not tap water is it?” a heckler calls from off screen. “There’s chlorine in that!”

Welcome to Gravestone-Restoration-Tube.

But then there’s Bill.

From what I can gather, Bill is a senior groundskeeper-handyman working for a municipality in eastern Ontario. His personal YouTube thumbnail image is a John Deere themed open casket and his YouTube channel chronicles the maintenance he does in around the town cemetery (at least, it did until a board of directors banned him from filming anything past the cemetery’s front gate).

He’s like a goth Red Green (something for non-Canadians to Google), letting a slightly affected Canada-hick accent fly as he welds an old tank still full of diesel fumes without blowing himself to bits, and, yes, pressure washes the “friggin crap” out of gravestones, even a soft white marble one he begins the video by showing us that it’s a good exfoliant for his dirty thumbprint, improvising a tripod function out of the bucket of his skid-steer. He likes puns, mocks Nazis, gets distracted by interesting bird calls, and works the graveyard humor with quips like, “K, we’re here, live on location—well, least I’m live on location.”

And I can’t help thinking, but for a few decisions, maybe if I wasn’t so chicken when it came to the welding unit of my junior high industrial arts class, I could have been Bill. It’s a good life—creative, inquisitive, self-aware, brilliant in its Jack/Jenny-of-all-trades makeshift-ery. Dang, for all the lives we don’t get to live, languages we don’t learn to speak, people we never have “coffee” with, books we write that might never be read, books other people write that we might never finish reading.

I need these exams to be over. Until then, rock on, Bill.

Reelin’ With the Feelin’, or, Giving My Books Away

LIttleFreeLibraryThe world of book marketing is fairly straightforward: the more money a book has behind it, the better it tends to sell. Does that sound cynical? Maybe, but it’s also evident in industry practices like giveaways for newly released books on the Amazon-acquired mega social network for readers, Goodreads.com. Not that long ago, during the heavy marketing phases of my first two novels, anyone could post a book giveaway on Goodreads and hundreds—hundreds—of people would see that book, look at its cover and title, read its synopsis, maybe even the author’s name, and add the book to their to-be-read list in exchange for getting a chance to win a free copy. All it cost publishers and authors, big or small, was the wholesale price of the book, and postage. But by the time my third novel was published, Goodreads was charging hundreds of dollars to give away books on the site. Isn’t that nice? It’s great to see big, well-funded enterprises sticking together.

Like I said, the big marketing pushes for my first two novels have passed. The books are still in print but settled into my publisher’s back catalogue, a place without room for all of the remaining printed inventory. Some publishers would just “pulp” these excess books but mine offered to give them to me as long as I paid to have them shipped across the country. The shipping bill was in the two-digits so I agreed, and for the past few months, the storage room in my basement—the cold room—has been a crypt for overstocked books. Talk about being haunted…

Well, you know what? I don’t need to hoard these books and I don’t need permission or money to give them away. With a new novel to promote, what better ad could there be for it than a bunch of freely available copies of my previous work?  And so I spent today driving all over the Edmonton area sniffing out Little Free Libraries. They are adorable little cabinets, or repurposed newspaper boxes (look at that, newspaper infrastructure doing something for book culture again), and even one salvaged doll house set up in cafes, parks, and private citizens’ front yards. The rules of the Little Free Library system are simple: take a book if you want to read one. Be courteous, take good care of it. Don’t use it to balance a table or roll a smoke. Ideally, leave another book in its place or bring it back when finished.

I hit every Little Free Library I could drive to without seeing any cows. When I travel to Calgary later this week, past so many cows, I will hit some more LFLs there—slide my book in between all those copies of Animorphs and the fragmented works of Stephenie Meyer (her Breaking Dawn appears most often). If it turns out the LFLs are somehow centrally catalogued and controlled, I expect a cease and desist order soon. Until then, I’ll keep placing my books, like messages tossed out in bottles, because we all know that’s better than reaching no one.

But my giveaway madness isn’t limited to the domains of cabinet-making-book-swapping-LFL librarians I’ve never actually met. It’s also for all of you, my dear friends. Purchase my new novel from me and get my first two books as a free gift. Or don’t buy anything. The gift is still free. Message me and it’s yours.

No PhDread Today

notebook2018I am not going to post a photo of someone else’s writing today.

This will be the first non-Sunday in about three weeks that no pictures of big, difficult texts written by the historians, philosophers, and theorists who founded the fields I study will appear on my Instagram and Facebook feeds. I was inspired to begin posting daily titles from my PhD comprehensive exam reading list thanks in part to the encouragement of a friend and colleague, and also by seeing my athlete sisters using social networks to stay involved and accountable for their own crazy goals as long-distance runners. I am not burnt out, and tomorrow, I’ll be posting my PhD reading titles again.

But for today, here is a picture of my writing—notes I began keeping over the Bering Strait on my way back from China last year summer. I turned to them again, late last night. This notebook may never amount to anything publishable, but I see now–weeks into the list of 61 texts I will be examined on this November to prove to the university that I ought to be allowed to continue in my doctoral studies, now that only-book-lovers-will-understand Tumblr memes have me growling “So you think reading is for fun, do you? DO YOU?”–that I need to send something out of my mind and into the universe before the universe can send anything more into my mind through the stack of books in my office. All of this expansion must be answered with a contraction.

Maybe that’s just my Classical Chinese philosophy readings talking. It’s getting harder to tell—and that’s why I suspect this impossible process might be working.

“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.