My dog’s bone cancer was in his kidney

One month ago today, I dropped off my 8-year-old baby, Loki, at Best Care Pet Hospital in Sioux Falls, SD, and told him goodbye for what I thought might be the last time. He had a large mass growing on his kidney and the surgeon was going to try and save him by removing it and the kidney.

Mid-sized dog held by woman in wedding dress.
Loki was my plus-one at my wedding!

Loki had been sick for two months — red, weepy eyes, fever, shakes and diminished appetite — but blood work looked good and pancreatitis tests came back negative. Antibiotics knocked everything down every couple of weeks, but then when he ran out, all the symptoms would come back. His regular vet was baffled. And I was out of town for part of the time, so a friend took him to her vet. They too were baffled, but did an x-ray and found a mass in his stomach. It was diagnosable, though, and that vet suggested I consider hospice for my dog. It was the worst feeling, hearing my dog was dying while I was hundreds of miles away from home. When I returned to Minnesota, where I live, we finally got a definitive answer on January 15. A CT scan showed that a large mass attached to his kidney was filling his abdomen.

Loki barely made it to Jan. 21, but he did, and he came through surgery like a champ. A month later, he feels great. But the vet we saw on the 15th did not want to biopsy for fear of rupturing what looked like an otherwise stable mass. A post-surgery biopsy of the kidney revealed cancer, though — osteosarcoma, or bone cancer. It’s pretty much a death sentence in most dogs, but I’m hoping my fur baby can be a rare one who makes it a long, healthy time.

Dog reclining in the sun next to a chair.
Sweet pup posing in the sun.

You see, this type of extraskeletal bone cancer is rare. There’s only been one documented case of extraskeletal osteosarcoma presenting in the kidney in a dog, so Loki’s case has been of interest and discussion to oncologists and pathologists outside of the specialist we have been seeing in South Dakota. Although he was met free for the CT scan, meaning the cancer had not spread/taken hold elsewhere at that time, the vet suggested we do pre-emptive chemo to try and knock out any cancerous cells floating around. I have not wanted to do chemo for a number of reasons:

  • Loki now has one kidney, and although it is healthy, I worry chemo will harm it
  • Chemo is not as hard on most dogs as it is on humans, but it can make them feel crummy
  • Expense
  • What if he doesn’t need it?

I’ve been doing as much research as I can, looking for credible, alternative treatments. I’ve learned about what is referred to as The Yale Vaccine, an immunotherapy treatment that stimulates the dog’s immune system and cells and teaches them what to look for and attack in cancer cells. It was in clinical trials from 2016 to 2020 and I have heard that people anticipate it being on the market sometime this year.

Dog with a chicken foot in its mouth.
The bestest good boy gets himself a chicken leg during our poultry harvest in 2020.

I’ve learned about Immunocidin, another immunotherapy treatment that encourages the dog’s immune system to attack cancer. In some cases, it has eradicated tumors.

Tonight, I learned about another trial, this one exploring the ways a dog’s biome impacts osteosarcoma. I’ve reached out to the lead researcher and hope to hear back as soon as Monday.

I’m learning as much as I can because knowledge is power. It’s also super fucking scary, but I want to know as much as I can to help my pup. And beyond that, I’ve learned that osteosarcoma affects humans too, mostly children.

Survival rates are higher for humans, about 70% at the five-year mark, but it’s still a scary concept. When I learn about trials in dogs and horses, I feel hopeful for the animals in the trials, and hopeful they are going to generate data that will some day perhaps help humans use these therapies. I hope Loki remains healthy until the Yale Vaccine becomes available. I hope the other things I’m doing, like cutting sugar and limiting carbs are helpful. In the meantime, we’ve done one dose of carboplatin, a type of chemo that is easier on kidneys than others. Loki is a good candidate for an Immunocidin trial, and I’m leaning toward doing it. But to be enrolled, he must forego chemo, and that’s about as scary a prospect as his receiving chemo.

My biggest concern in all of this is that Loki remains comfortable and as happy as he can as time passes. He’s happy, healthy, playful and eating well right now. The Immunocidin trial requires weekly visits at the start, and Loki hates the vet. I am weighing the benefits and downfalls of this. Because Loki’s form of OS is so rare, we are running in the dark here. But my pupper remains surefooted and steady, so I’m enjoying lots of love and snuggles and hoping for the best.

Docs for your shots

Recently, the US announced it would require negative COVID tests from any international travelers flying to the country, effective Jan. 26.

This means US citizens and non-residents both. Either proof of a negative test or proof of recovery are acceptable, according to the State Department, and the new policy applies to all passengers two and older. It’s not the only notice of the sort that’s been put into place this week; Canada’s Prime Minister Justin Trudeau announced that the country is banning flights to Mexico and the Caribbean, and requiring all international travelers to quarantine at approved locations upon arrival. Their policy goes into effect Feb. 3.

Back in December, CNN Business predicted that we might need “vaccine passports” this year, and it looks like that prediction has come true. Will they work? Are they “fair,” asks a new piece in Forbes.

I’ve been dreaming of seeing my family in Colombia since 2017, but the two trips I’ve had scheduled since then have been cancelled for one reason or another. The first trip, scheduled for January 2019, got cancelled because of weather. I couldn’t get out of Minnesota. The second trip, scheduled for March of 2020 was cancelled because of COVID. And up until the beginning of January 2021, I had been dreaming that I’d get to Colombia in May or June of this year. But after our family had a COVID exposure scare while preparing to fly home from California, I’ve decided that I just don’t have it in me to take any risks right now. And as these new requirements are put in place, I feel even more certain that Colombia is a ways away, literally and figuratively.

So to take my mind off this distance, I’ve been clicking on every Colombia-themed thing that shows up in my Twitter feed this week. It’s led to some lovely surprises, like the illustrator Eddie White, Jr., an Aussie living in Cartagena, Colombia. When I spent New Years in Colombia more than a decade ago, I hung out with some Aussies there and had a wonderful time. Finding this guy wasn’t quite as magical, but certainly transported me back to the country. His map of Bogota’s districts made me smile, not just for its whimsical figures, but for the imagination and creativity that went into it. It reminded me of the city itself.

From Eddie White Jr.’s Twitter account, posted Jan. 29, 2021.

And while looking at the various figures here, the funny periscope fish, the Loki-dog head, the bright yellow gnome head, I was able to imagine myself moving from critter to creature to figure, crossing “borders” and edges and experiencing the new joys (and challenges) that come with new places. We’re certainly in uncharted territory with COVID these days, and it gets to be pretty stifling at times. But turning to art, to new discoveries and to new vistas of the mind is one way to get through this, no passport needed. It’s hard to remind myself of this when I’m missing my family or trudging through snow, but I know it’s what I have to do, at least for now.

How are you curbing your wanderlust?

Fighting not just inaction, but disregard

Today is Martin Luther King Jr.’s birthday, mostly known as Martin Luther King Jr. Day. At a time when the #BLM movement has made great progress in raising awareness about systemic racism in our country, I wonder if MLK Day is more than a “day off from work” for a lot of people who could help break down some of the systems that have kept racism in place. I didn’t have the day off, and if I’m honest, I only began pondering this question after friend, Whitney Raver, posted these thoughts:

FB post from Whitney Raver’s profile.

As I wrote to her in my response, I’m not 100% white, but I can recognize that I fall into a category of moderate Americans who have for so long been quiet on the sidelines as people like MLK and today’s freedom fighters work for justice for people of color. I can recognize that in my work as a teacher I think of my contribution as making a difference for the future. But is it really enough?

As a Latina who understands what it’s like to grow up in a sea of white faces in a white place, it’s easy for me to be an ally to those who are discriminated against because of the color of their skin. I’ve experienced it myself. Yet am I part of a problem noted by Dr. King? It’s a problem he addresses in “Letter from Birmingham Jail“:

First, I must confess that over the last few years I have been gravely disappointed with the white moderate. I have almost reached the regrettable conclusion that the Negro’s great stumbling block in the stride toward freedom is not the White Citizen’s Council-er or the Ku Klux Klanner, but the white moderate who is more devoted to “order” than to justice; who prefers a negative peace which is the absence of tension to a positive peace which is the presence of justice; who constantly says “I agree with you in the goal you seek, but I can’t agree with your methods of direct action…

Martin Luther King, Jr. “Letter from Birmingham jail, April 16, 1963

Am I part of the moderate crowd that isn’t doing enough? Sometimes the answer is yes. I know that one of the tenets of Critical Race Theory is that people in power use their experiences to talk about other people’s; I’m guilty of that here. And I’m not a march in the streets kind of a person. I don’t yet know how to talk with former classmates and community members about their racism. I don’t know how to get them to see that saying, “but I have a black cousin” doesn’t mean they are devoid of racial bias.

But what I do know is that I want to help raise awareness about social injustice, and it starts with work that I do know how to do: Asking questions. Listening. Teaching. Writing.

That teaching component is so very, very important today. I mean today in general and today specifically, as #NotMyPresident Trump released his “1776 report,” a document that basically excuses slavery and says the nation’s schools need a whole new curriculum to teach them about how great our country is and how condemning slavery and other unjust practices have a “devastating effect on our civic unity and social fabric.”

Living next to South Dakota, where the troll of a governor Kristi Noem has started her own re-education campaign, I am transported to Cambodia of the mid-to-late 70s and the Khmer Rouge’s re-education efforts under Pol Pot as I read about this new course of history these people want to create.

I believe education is such an important part of moving through social injustice and racism, and it is truly frightening that people in power (people who are definitely not moderates) are trying to erase entire histories. This is not just inaction, it is a disregarding of reality, a disregarding of thousands of people’s experiences and the foundation of racial problems we’re experiencing today.

I urge you to read about Trump’s delusional report, but also to read the 1619 Project cultivated by the New York Times. Knowledge is power, and sharing it is my form of activism.

Rain

On this #ThrowbackThursday, I’m thinking about my friends in Sioux Falls as news of the city’s coronavirus hot spot continues to highlight the problems that led to it. I’m broken-hearted for the people who work at Smithfield and their loved ones; i’m sad to see a city I love in such a position. This essay is from 2010, when I moved back to Sioux Falls from Chicago.

Beginning, again

Here I am once again, standing on the cusp of tomorrow.

Above me, the sky is full and dark, a charcoal wash smeared across a canvas. Hints of violet and eggplant blossom in the varying shades of dark, and if I let myself believe it, I think I could reach out and poke that fluffy moisture.

I have seen great mists blow in above the Mediterranean, storms that dazzle the coast with plum and ivory and gold.

I have danced with heavy drops in Chicago, downpours choked with smog and ozone and jazz in complex layers.

And now, I am back in South Dakota. I am glad to be here, but I wonder how it is that I’ve arrived to this place again, and what it is I’m doing. I came back because to some extent I do know what I’m doing—I’m trying to focus on my writing in this city that balances the rural and the urban—but I want answers and reassurance. This morning, however, the sky maintains its distance, and so far, I it offers nothing. I too am equally reserved, because this time, I want to be patient.  I want to find some self-restraint and take advantage of second chances.

***

Patience, I’ve heard, is one of life’s great virtues. It is the “companion of wisdom,” according to Saint Augustine, one of love’s great qualities; it is the ability, according to the dictionary, “to suppress restlessness or annoyance when confronted with delay.” It is also one of the finer traits missing from my personality. My privileged upbringing did nothing to foster this quality within me, and sometimes I wish my parents would have been more disciplined with me, made me wait for things or work harder to get them. Today, when I bite my lip or tap a foot to silently pass the time between recognizing and obtaining something I desire, I remind myself that I am no longer a child. That I can’t always have my way has been a hard lesson to learn as an adult, but I am always trying to develop and grow. I have learned I cannot move forward if I don’t acknowledge a problem at all. So in my adult decisions, I work to build my tolerance for flaws and setbacks and ambiguity in situations and in people, myself included. And as eager as I am to establish myself as a writer, I’m trying to develop some persistence as I develop my prose.

***

I moved back to Sioux Falls two weeks ago, eager to set up a routine for my life and my writing, now that I’d gotten away from my desire to live at the bar. I’ve been holed up in my apartment since I moved back though, so company is always refreshing. I’d tried to establish order in my writing schedule when I left Chicago for Nebraska six months ago, but cloistered out on the farm, I was desperate for communion with others.

The writer Anais Nin said that her subject matter came not while seated at her desk, but while she was out in the world, living. This I understand. The social aspect of city life and the cosmopolitan culture I love are non-existent where I grew up, and this affects my writing. In Nebraska I can hunker down and immerse myself in the natural world in a way I couldn’t do in Chicago, but my mind grows restless without the challenge of other creative individuals. I need silly conversations, heated debates; most of all I need people who understand what it’s like to call oneself an artist. I need people who understand that like life, this too, is a process, that through art, we can both find and lose our selves.

Here, even though Sioux Falls is about one-fifth the size of Chicago, with 187,000 residents making up South Dakota’s largest city, I can find an appreciation for the slow pace of rural life because it is tempered by the energy of the city. There are poetry readings, a writer’s group, and other creative individuals here. As long as I don’t get hung up on everything that is missing, I tell myself, or fall into distracting ventures, it really is the perfect place to live and focus on my art. Yes, in my craft, too, I realize, I need more patience.

I realized that Sioux Falls really did have what I wanted—a community of friends and reasonably priced expenses for anything worth doing. It offered me the kind of life I could afford to live while trying to make good on all my plans. But in spite of this recognition, I wouldn’t be able to leave Chicago for another couple of years. With the wisdom of more time and the ability to reflect on my actions, at twenty-seven I recognize that my planning and my desire to know what’s coming sometimes eats away at my ability to be patient, to enjoy the moment.

Shaped by the land

Coming back to an appreciation of the outdoors, not just as place, but as neighbor. Here in Sioux Falls the prairie hugs up close to the pavement, and we are urban, but somehow, still wild. A spread of patchwork fields lines both sides of Interstate 90, and livestock discussions are as common as those regarding Sex in the City. There is a toughness of spirit in the minds and actions of the men and women who live here in the Midwest, and even little kids can be tough as crimped wire and sharper than the barbs upon it.

Once, when she was seven, my niece Katie shut her hand in the heavy, gray door of her father’s combine. The latching mechanism caught, holding Katie captive. She worked at the lever to release herself, she told us later, but when her brother Matt found her, she was still pinned at the fingers between combine frame and door. Without the use of her whole body to pull the lever open, she had to wait until Matt heard her holler and could free her. For days, Katie’s fingers were puffed up and purple, ridged like the edges of a lasagna noodle, yet she maintained her stance that using the hand didn’t bother her. Growing up and living in the rural Midwest instills a sense of determination, a sense of possibility in knowing that when things are rough, this too, shall pass.

***

Winters here are irritating, like dank, wet mittens, and by April, South Dakotans are eager for exploration and possibility. This is, I think, what I am after.

***

“You don’t know what you’ve got till it’s gone,” sang Janet Jackson in 1997, twenty-three years after Joni Mitchell lamented the loss of natural habitats in Hawaii. While Jackson turned Mitchell’s observation into a cry of longing for a former lover, today I make no distinction between the kind of bittersweet feelings one might have after losing either place or person. A hasty loss of place or person can haunt anyone.

When my mother and I visit Colombia, where she was born, I sense a combination of familiarity and panic exuding from her. Her country has changed so much since she left it, and while this is good news, it must be terribly disorienting. Sioux Falls has changed for me too, but I still know my way around and I still find that the love I had for this place still wells up in me at random moments. Especially when I’m downtown.

Downtown Sioux Falls is the Phillips Avenue Diner, Smoe’s Bar and the independent bookstores I’ve come to love. Downtown is the mist of the Big Sioux River and the John Morrell Processing Plant; it’s the smell of charbroiled pigs and unwashed bodies. Downtown is old men wrinkling up the library steps like cracks in a stone façade, their tired, slurred language a reminder of the problems all cities have in common.

“Hey, girl, you got a quarter? I’m hungry—wanna get some coffee.”

Downtown is Sioux Quartzite streets and rehab clinics; it is art galleries and Gothic architecture. I used to love walking down Phillips Avenue, the main artery of those cobbled blocks, when I was in college at Augustana. The cozy streets and small shops felt metropolitan and cultured. I know now what my friends who grew up here refer to when they talk about wanting “real culture,” because I’ve lived in other cities since I met them. But Sioux Falls was my first adult, urban love, the first city that drew me in and schooled me in what it means to leave behind a predetermined home and family and create these things out of nothing.

I think about this a lot when I’m with my friends here. Growing up, I thought that my childhood was normal: a mom, a dad, some fights, and some flared tempers. I didn’t realize until I moved away from my rural home that my childhood was idyllic, that most people don’t have what I did. I think about my friends who have cobbled together families out of bar friends and fellow students, how co-workers and running partners might often mean more to someone than her own brother.

Because I’ve left my family and my hometown, I’ve had to set up make-shift families wherever I go. In Chicago it was Biz and Sheila, Mary and Emily, Wes and Callie and Eric. As much as this works for me, over the past nine years I’ve realized that I’ve learned how easy it is to give up and walk away. Thus far I’ve been too selfish and ambitious to deal with imperfections in others, and too scattered to settle for any one thing—so I’ve been okay with the emptiness of this nomadic lifestyle. It made sense while I was completing college and moving around the country, but now that I’m back in Sioux Falls, I want to settle down. I want intimacy and love.

Committing

Settle down? A husband and babies? You?

My friends look amused when I tell them this, but I don’t exactly mean babies. I don’t know if I mean a husband. what I mean is I want to settle down into something meaningful, so I can develop a relationship with my work. I want to develop an eye for my stories and a voice that expresses the energy and emotion of my ideas.

I want to be dedicated to something.

For the first time since my undergrad years I feel as if I know what I am doing—at least in the sense that I am acting with intention—and I want to focus on that and establish a career before I sidetrack myself with wedding vows and bedtime stories. I want to be part of something that transcends my existence. I guess I want to belong. But what does it mean, to belong? What becomes of those we cut off who have no understanding of the how and why behind our wants? What happens to those we force out, into other places? What happens when people can no longer share the spaces they love and jealously cherish?

This question of belonging and displacement is one the United States has been dealing with—or not—for centuries, especially here in South Dakota, although I saw it uniquely flavored in other ways, in the D.C. or Chicago housing projects. What happens when we force others out and take over? What happens when we can no longer be in our home places? I think of all the homeless people I hurried past in Chicago, and I wonder if they too, were once as lost as I’ve been, but with fewer resources and memories of comfort to return to. In all reality, that’s why I left Chicago for Nebraska, then Sioux Falls. I wanted the sense of comfort I had in writing and in people and places I’d known before.

Return

“The literature of illumination reveals this above all,” writes Annie Dillard in Pilgrim at Tinker Creek. “Although it comes to those who wait for it, it is always, even to the most practiced and adept, a gift and a total surprise.”

It’s taken me four years to get back here, and when I think about how the stars have been up there, glowing and burning out for that entire time, I want to be more patient. I want to make things happen, but I’m learning that I can’t force them. I can’t force words or actions any more than I can force the sky to hang onto the rain, or to spill its stars.

***

It is 4 a.m, a warm, June morning.

Across from me, a friend lights a cigarette and his face is made sharp and shadowed by the red spark as it shrinks and grows, shrinks and grows. The light falls on his face in eerie patterns, a man-made optic trick that silences me. This illusion cast on a human face wonder if I’m being delusional in my own way, finding meaning—or worse, creating it—where there is none. Is South Dakota the answer? Do I see what’s really in front of me, as it is, or as I want it to be?

I sit in the draft of smoke, smelling carbon and sulfur for a couple of minutes, maybe longer.Then my friend becomes human, leaves his shadow.

“Mars,” he says, calling me. “Come over here for a minute. Listen. Close your eyes.”

I get up from the blue camp chair I’m warming and shuffle over to him, bare feet on rough concrete. It’s cool out now, and in my hoodie I shiver at the touch of skin to cold floor. My vision has adjusted to the soft, weird light around us, so when I am standing in front of this friend, I shut my eyes and wait for whatever is coming.

The space that fills me is empty. For a moment, this blackness consumes me, and silence floods in. I am standing in front of the patio’s wooden rail, fingertips touching wood, just barely, when  he takes my arm, and guides me.

“Breathe in,” he says, and as if in a trance, I inhale. These directions sharpen the small sounds around me, and for the second time tonight, I think I can hear the whisper of rain and wet tires. I don’t want to rely on my sense of hearing right now though, or any of the outward senses. What I want is to focus on the natural world around me.

In the blackness that holds me, I feel myself slow down, and I become something like a haze that drifts across water in the mornings. Behind closed eyes I see black, and in my body I sense it. In the breath of air that now fills me, I am aware of warm darkness and decomposition, of ozone. That of the earth around me. I want to be part of this earth, anchor myself to this spot and hold on forever. But I know better. I know that time will pass and I’ll want something new. I’ll want to go, a nomad again. The trick is, I’m learning, to be patient and wait for this yearning to move on. Or at the very least, to wait until I’ve learned the lessons I need to be prepared for whatever comes.

I try to shut out my other senses and focus only on that internal rhythm, but I can’t ignore the scents around me. There is the delicacy of cut grass, almost squelched by the rich carbon muddiness drifting up from the dirt below it. For years and years, this scent was all I had known, growing up on a farm, growing up in the middle of flat fields that left the earth overturned and exposed. I am more familiar with scents of the city now— the spew of mechanized traffic, the intersecting whiff of a passerby’s cologne and the rich scent of Thai or Indian food. But right now, this inebriation, this complete indulgence in the lush air of early morning is as sparkly as the dewy prairie spread out beyond us.

“Hey, I—“

“Shh, keep your eyes closed… listen.”

The silence has receded with this last instruction, and when I switch my focus from scent and memory to the rich fullness of this idea, to “listen,” I hear it.

The rain is falling again, harder than before, an andante across the shadows. I am like Barbara Kingsolver, who revels in the warmth of an Appalachian rain on her family’s farm. Like her, “I love this rain; my soul hankers for it.”

I become the landscape, a bed of parched soil; I allow my senses and pores the freedom to open and receive the moment and all it offers.

“Ahh…the rain,” I sigh, breathing slowly. As I regain my words and my body, a great flooding of emotion plants me in the moment.

I stand in the rain, caught up in murmurings of a waking world.

Much as I must wait to feel the promise in the storm clouds, wait for the champagne sunrise of morning, I must wait to see what comes with tomorrow. I cannot sense a rhythm in the patter of the drops around us, but what amazes me about the power of falling water, no matter where it enfolds me, is not that it bursts though the celestial ceiling with the force it has, but that that it can hover above us for hours, teasing, building slowly.

If patience is a learned art, a key to helping us be present in the world around us, whatever world it is, then understanding the process of waiting for the things to come will be my greatest lesson. I don’t know why we fall in love with a place or a craft or find safety in a person, but I know we do. I know it is these things that matter.

Remembering Terri Schiavo

Small lights illuminate a star.

Photo by Elias Tigiser on Pexels.com

A brain goes rogue

on December 26, 2004, I experienced a major brain bleed that sent me into a coma and brain surgery. Up until that event, I had been a totally healthy 22-year-old. And then POP, just like that, what I knew of health and normal and independence vanished. Waking up was a two-day process after brain surgery. When I finally had my wits about me, I learned that I’d experienced a stroke, I couldn’t walk and might never live on my own again.

It would take another day for me to get up and test my legs — they worked— and months before I could drive again.  But I did it. In early 2005, I returned to some semblance of a normal life.

At the same time that I was gaining a sense of balance, both physical and metaphorical, another young woman was dealing with her own cerebrovascular event. In 1990, Terri Schiavo, then 26, had a heart attack and collapsed. The loss of oxygen to her brain sent her into a “persistent vegetative state.” For years, her husband, Micheal, had rallied against her parents, insisting that Terri would not want to live in such a state. Her Catholic parents said she was still a human, still their daughter, and they fought his attempts to end her life.

At just 22 when my brain went rogue, I was horrified by Terri’s situation. I watched news updates from my  parents’ couch, torn between siding with  Terri’s parents and her husband.

If it were me, what would I want?

Decisions

In those first days of recovery, before I could drive again, and thus before my independence was re-granted, I decided that I would have wanted to die.

“If I stroke out again,” I’d tell my dad, “you better let me die.”

He’d nod, knowingly. That’s what he wanted for himself, too.  I didn’t talk about it with my very Catholic mom, who I knew viewed every life as sacred, and would do anything in her power to keep me alive. As time went on and follow-up visits persisted, with each new care provider I saw, I would be given paperwork for an advance directive.

“It’s not a bad idea to state what you’d like done in the event of another emergency,” they’d say, handing me the folder. I’d carry it home to throw away, not wanting to think about such heavy decisions.

For the 14 years that Terri had been caught between her parents and her husband’s decisions,  the court in her state of Florida sided with her husband. But in 2005, President George W. Bush signed legislation that allowed Federal courts to have a say. Terri’s feeding tube, the thing keeping her alive, came out.

On March 31, 2005, Terri Schiavo’s decades’ long ordeal was over.

Today

Today marks the 15 year anniversary of  Terri’s death, and I have been thinking about her off and on all day, as I do every year. I didn’t know her and didn’t know of her until my own medical crisis brought hers into my world. But in the past 15 years, her legacy has continued to orbit in my mind.

When I finally returned to life on my own in May of 2005, I ran into a friend I hadn’t seen since before my stroke.

“Mars,” he shouted from across the packed bar I had entered with a friend. “Shit, I can’t believe you’re here. I heard you’d been Terri Schiavo’d or something.”

I assured him that I hadn’t and sent a heart call out to Terri, feeling connected to her despite our differences. I’m so sorry you died, and I lived.

When I moved to Chicago fifteen months later and began volunteering on the stroke and traumatic brain injury floor at the Rehabilitation Institute of Chicago (now the Shirley Ryan Ability Lab), I felt Terri’s presence as I talked, or walked, or sat with patients recovering from their own traumas.

When I studied the therapeutic power of writing during grad school, I felt her presence when researching and writing about disability.

And in my current life and work, I think of Terri every time I write about advance directives, difficult conversations and life support paperwork. I do some writing for a company that has designed a web platform and coach system to help caregivers navigate responsibilities in their role of caring for an adult loved one, so these topics come up a lot.

And outside of my own  bubble, I see a raging debate about who should get care during this time of COVID-19, how those decisions are made and what it does to those who are actually making decisions.

On this anniversary of her death, I think of Terri not as someone who died stripped of dignity, but as someone who we should all think about on occasion. We should all have in place our desires for our own end of life so that no matter how it comes or when, we’re able to have a say in what we want.

Love and light to you, Terri.

 

Don’t be a sponge

loki couch

Loki the dog is great at getting stuck in couch potato mode.

In my work as a freelance writer and editor, I’m currently engaged in a project designed to help unpaid caregivers find more time for themselves and make it easier to do the extra work they do in caring for a loved one. Free time is valuable and hard to come by for so many of us, but for working caregivers who deal with concerns for their loved ones while at work and then again when the return home,  it’s an even more fleeting thing.

As I recently reviewed caregiver news online, I stumbled across this article in Stria, “a media platform for the longevity market.” The piece explores data that shows how interdependence develops between older married/partnered couples. It was interesting to me from a working perspective; maybe it’s something I can do some more research on and write about later, I thought. But as I read, the findings struck me as something that’s applicable to me, now.

“We all know couples that are joined-at-the-hip couch potatoes, enjoying nothing more than streaming a hit show while sharing a loaded pizza,” writes author Kevyn Burger. “Equally familiar are the couples who regularly hit the gym together, then treat themselves by splitting a post-workout protein shake.”

I cringed a bit when I read that.

My TV-loving partner is not responsible for my decisions to sit with him and get sucked onto something terrible like Younger or 9-1-1, and yet…I find myself doing this more often than I’d like over the winter. I could be reading, working out or visiting a friend. Instead… I’m couch-potatoing it. I’ve been mad at myself for doing this in the past, but when I read this article and gained confirmation that negative behaviors like this can have a particular bad psychological effect  as one ages (not to mention the extra physical effects of weight gain, in my case) I felt called to action.

The article notes that researchers are finding that this sponge-like tendency can lead to chronic issues in the future, and cites Courtney Polenick, assistant professor of psychiatry and faculty associate at the University of Michigan Institute for Social Research.

“We need to look at the broader picture and gather information about what each person is managing and also what couples jointly manage,” she is quoted as saying. “This study looks at the impact of chronic conditions across a long time frame. We need additional research about how spouses interact to help one another and how couples jointly manage multiple chronic conditions at a daily level.”

Winter is almost over, I hope, and at the very least we have longer days now. When the dogs, the couch, the blankets and the TV beckon, I’ve been working hard to remind myself that there are other things I could be doing to more purposefully engage my brain and my body.  I have yet to use that time for the treadmill, but I am making my way though a few physical books — and I’ve been writing more!

What are you doing to stay healthy, independent and still connected to your partner?

 

Could this disruption be a win?

Earlier this week, Southern New Hampshire University published an article by Dr. Gregory Fowler,  global campus president for SNHU. I always admire Dr. Fowler’s thoughts on disruption, innovation and education, and this piece stood out to me not just as an educator but as a freelance writer as well.

I see that higher education has changed in the 20 years (yikes, really?!) since I took my first college class, and I see that it has changed even more in the nearly 10 years that I’ve been on the other side of the classroom. Technology, the game changer here, has also become a game changer in the work that my BA prepared me for: journalism.

We see newspapers crumbling, TV news roaring ahead at insane and harmful paces, and we even see sites like Reddit becoming sources and guides for journos working on story ideas. Technology has changed how the world works, or at least how the developed world works, and these times (#Coronavirus) are giving everyone a chance to see how tech can help them do their jobs — like it or not.

A few days ago, I said I felt a bit smug about the security of my professional world being a digital one. That was probably a crappy way to word things, but it was true. I felt good about my work life amid the instant changes others were dealing with. Yet at the same time, I know that even the online world is in for a series of real disruptions over the next few months. It’s not just the education sector that is feeling rattled; offices that can are now put in the position of granting work-from-home status to employees despite years of saying no to such things. I’m happy to see this happen; in fact, I left my last desk job because I could not work from home, although my job required that I sit at a computer all day…which I could do at home.

As the world around us shifts in a new way during what is for many the first week of working from home, I’m curious to see just how much it will impact the ways business as usual moves forward. Will the meme I saw last week prove true? I don’t remember the image, but the caption said something like “Working from home/Time to see just how many of those meetings could have been emails.”

I don’t want to wish cabin fever and the confines of social distancing on anyone in a bad way, but what if this disruption could ultimately get more people IN school, as more schools put in place eLearning structures? What if it could get more people OUT of the office while still working?

 

Moving online a bigger shock than COVID-19

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I’m a bit ashamed say it, but as an online educator, I’ve been feeling a little smug this week.

I’m not scrambling to convert classes or learn new software, and I’m not worried about the future of higher education as I know it–well, at least not because of  coronavirus pandemic shifts. I’m not faced with high attrition rates because my students don’t know how to use new software, or don’t have data or space in which to use it.

I’m smug because although people I know are still poo-pooing online education as a “real” means of education, these same people are being forced to give it a shot. Ideally, they’d have a much smoother, more welcoming introduction to teaching online, like I did, eight years ago. It would certainly make them bigger proponents of the method. There will a lot of cracks for them and their students to fall through with this instant setup.

But all that aside, instead of basking too much in my “ease” of academic life, I’ve been trying to learn from this disruption. My newsfeeds are full of articles, tips sheets and suggestions.

This article, from Inside Higher Ed offers “practical advice” for temporarily teaching online. There are good points in it, by my favorite, as a seasoned online instructor, are:

Create a class communication plan so students know where to go and what to expect; address questions like:

  • Where to send questions
  • How quickly will you respond to emails; how quickly will you respond to discussion posts
  • How to reach you with any urgent needs or questions
  • What sort of regular communications you will send out to the class (e.g. weekly reviews and/or updates)

I like these points because students need some stability amid this shift, and telling them what they can expect from their instructor is ALWAYS a good policy. It’s even more important online, where they don’t get to connect physically.

Another piece, this one from The Chronicle of Higher Education, points out that

Shock doctrines make emergencies the new normal — they turn temporary exertions into permanent expectations. American higher education has already endured several slow-moving disasters over the past 40 years: the radical defunding of public institutions, the casualization of academic labor, the militarization of campus security, and the erosion of faculty governance. As a result, the very instructors now tasked with the herculean transition are already working in extreme conditions: Somewhere between two-thirds and three-quarters of college and university teaching is performed by non-tenure-track faculty members or by graduate students, many of whom conduct heavy course loads without health insurance and with suppressed wages, housing insecurity, and stifling debt.

In essence, the problem is that instructors are being asked to turn their classes into virtual classes in a split second (compared to how long it takes to truly prep a class), and they are already overburdened. When asked to do this, and then doing it becomes acceptable, what else will universities ask of these folks?

The answer, in part, lies in this third piece, from Rebecca Barrett-Fox. As a writing coach, teacher and researcher, Barrett-Fox seems to have a lot of irons in the fire. We all do, I get it. I just appreciate that she’s not just in academe.

Her points 2, 3 and 14 are the best balancing act I’ve seen thus far:

2. Do not require synchronous work. Students should not need to show up at a specific time for anything. REFUSE to do any synchronous work.

3. Do not record lectures unless you need to. (This is fundamentally different from designing an online course, where recorded information is, I think, really important.) They will be a low priority for students, and they take up a lot of resources on your end and on theirs. You have already built a rapport with them, and they don’t need to hear your voice to remember that.

14. Don’t do too much. Right now, your students don’t need it. They need time to do the other things they need to do.

Barrett-Fox offer practical advice that is geared toward sanely navigating this moment/semester as an instructor, but she’s put some thought into how that will spill over and help students, too.

After all, anyone who teaches, who puts in the hours, the research and the organization–virtually or in-person–does so because it’s something they enjoy, and they want their students to get something out of it too. This is a key thing to remember as universities fret over what this might mean for their bottom lines. Now is not the time to worry about that. Students, staff and faculty should come first.

I’m continuing to learn from my peers as they/we muddle through what it means to teach in 2020, but right now, I’m also feeling extremely lucky that my creative writing students and I can just hang out and do our thing. This week they’re working on scene and setting, and they’ve read “High in Hell,” which does such a great job of bringing the African country Djibouti to life though scene and setting. I’d like to say everyone should read this piece of literary journalism to understand just how lucky we here in the US are, lucky to have tech disruptions and tech and any resources at all.

The decline of critical thinking

If I say “composition,” what do you think of?

If you’re an artist or photographer, perhaps you think of the way a piece comes together– its composition. That’s a pretty nice association to have with that word. But for many people, I think the word brings up the dreaded high school or college composition class. In my line of work, as a college writing instructor, that’s what I’m talking about, nine times out of ten.

And believe me, that word is just about as cringe-worthy for me as it is for many of my students.

If course, the class is not a struggle for me in the way it is for them; I’ve already figured out what a thesis statement is and I can * mostly * write in an organized manner. What is a challenge for me, however, is grading the papers that my students labor to churn out.

Because I teach online and have truncated semesters (8 weeks for one school, 10 for the other), I have grading deadlines, respectively, of one week and three days. It’s tough to turn around student papers in such a short amount of time and give them adequate feedback, but it is where I spend most of my hours. Pointing out their errors and explaining why they are errors is the only way for them to learn how to do something correctly. That’s kind of a “duh,” statement, I know. But one of the greatest values of a comp class is the way it models and molds critical thought, and I don’t think a lot of people see it that way.

Not only am I teaching my students how to discover, outline, write and support an argument through research, I’m teaching them the importance of thinking critically about the world around them. And especially with persuasive writing, they’re learning the importance of using facts and data to back up a claim, not just stating an opinion and calling it good.

Again, more “duh” statements, I know. But I was just reading a paper about the benefits of getting a technical degree over a four-year liberal arts degree, and I got sidetracked. On the one hand, I completely agree with my student: not all people should pursue a liberal arts degree and the debt that comes with it. (Diving into that issue is a whole ‘nother post.) But on the other hand, this student, who works in a trade industry currently, had written a whole paper full of opinion statements. There weren’t any facts, there was no data to back up claims, and the general assumptions peppering the document could easily be shot down by someone in the know.

And there’s the problem. I’m seeing so many students come into class totally ignorant of how to back up a claim with fact. Yes, yes, they are students and I can’t expect them to know everything, or else what good would I be? I agree. But I’m seeing this more and more in those who’ve grown up on social media, or, in the case of this student, those who don’t come from a background that encourages education. I don’t want this to be a political post, but as I see our government champion more cuts to education while also issuing statements that are not backed in fact, at a time when soundbites reign supreme, I worry about the collective intellect and our society’s ability to spot, source and understand the truth.

We already know high school doesn’t prepare kids for adult life. Now, it seems like they’re not even prepared to navigate the mistruths of our world because they don’t know how to think critically about it.

I went back to my student’s paper halfway through writing this post, and I felt a renewed sense of importance regarding the work. I still don’t like grading virtual stacks of papers, but I’m not one for marching in the streets, either. It seems like grading papers and stressing the importance of critical thinking to my students could become, for me, a form of activism. It’s sort of a nice thought; I’d like to hang on to it when the grading load is heavy and the deadlines are tight.

National Poetry Month

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April is National Poetry Month, and the Academy of American Poets has a lot of tools available on their site to help you celebrate. One of those tools offers “30 ways to celebrate” poetry throughout the month.  Check it out!

There are some good options in the list;  numbers 3, 7, 8, 12, 15, 19 and 29 are my faves. Which ones interest you?

My own methods of celebrating include leading a poetry workshop later this month, attending a poetry night and open mic, and participating in a “write a poem a day” challenge with 100+ other poets. We’re on day 2, and so far I’ve cranked out two poems.

As I wrote in my previous post, I’m not a fan of “prompts” to help me write, but so far, the two prompts put forth in the group have spoken to me.  I’d share them here, but I actually think they could become something publishable, so I’ll refrain, at least for now.

I hope National Poetry Month treats you well and turns you on to some new words, forms and poets!