Wednesday, July 1, 2020

Happy Canada Day!

We were on vacation in Northern Ontario. It was midnight in the little village and no cars had moved for hours. 

At the crosswalk I step into the intersection and feel a sudden tug on my arm. 

My ex-husband, Peter, pulled me back to the curb, I look up to see that the signal says, “Don’t Walk”.  

Smiling I stand on the silent sidewalk and wait. When the traffic signal glows its approval to cross we step out carefully and correctly; I laugh. This is the kind of thing that happens in a mixed marriage.

I married a Canadian.

Hockey, beer, donuts, moose –these stereotypes, all rooted in Canadian reality are funny to Americans. 

We especially like the accent, the lilting up and down of Canadian speech. In just a few hours in Ontario I am imitating my in-laws, “Will ya go to the lake, eh?” But I also know that the final “eh” on Canadian sentences and obeying traffic signals are related.

The Canadian “eh” is not just a conversational tic. That uplifting extra syllable is an invitation to consensus, to agreement, and to keeping the order.

Keeping order is one of the greater aspects of Canada that we Americans-- so nearby-- miss when we think “Canadian”. Canadians –motivated by a concern for a “common good” are more orderly, law abiding and considerate than we. It’s not because they are nicer, but consideration of one’s impact on others is a strong cultural value. 

Speech patterns give more than a clue to this difference. The histories of our nations are echoed in how we use our common language. There are very few declarations in Canadian dialect. Declarations invite challenge. This makes sense when you remember that Canada did not have to struggle for independence as Americans did. 

Britain approved Canada’s confederation in 1867.  So, you can hear how the inflection, that final “eh” leaves the conversational door open with space for another’s thought.

For example, while visiting we met a young man who was dating a niece. He was not as bright as the family might have liked. 

But as I was about to blurt, in my American declarative, “He’s an idiot”, my sister-in-law said in her Canadian lilt, “Ya say hello to him and he’s stuck for an answer, eh?” Message delivered; door left ajar.

Americans however are poised for a fight. You can hear it in our speech with its tone of certainty and downward inflection; we are always staking a conversational claim. Even the most pacifist of us hold our opinions –and our right to them—like guns.  This also comes from our past. We arrived here fighting.

This is also why the gun control issue seems easier to Canadians. Friends in Ontario shake their heads at our debates and say, “Such a big fuss, eh?”  For us the gun question is emotionally charged because at a deep level we remember fighting for our land and freedom.

It may be around the idea of freedom that our look-alike cultures diverge. My husband and I have a regular debate about freedom. I say Americans have more freedom: We can be and do and say whatever we like. It’s freedom TO.

But, says Peter, in Canada freedom is seen as freedom FROM. The Canadian consideration for the common good allows Canadians relative freedom from violence, from crime, and from poverty.

Because Canada is a non-litigious culture Canadians are especially free of the kinds of legal hassles that cost Americans so much time and money.

These differences run deep but they’re obvious when you lay the historic values side by side. We salute “Life, Liberty and the Pursuit of Happiness.” There is a win-the-west, win-the-war feel to it.

Then picture Canada’s: “Peace, Order and Good Government”. Can’t you just see people cueing up and taking turns, and leaving room in the conversation for the other guy?

Canada is not a land of Boy Scout, do-gooders of course. The very contradictions make you love ‘em, eh? Theirs is a mostly non-violent culture whose national pastime—hockey-- knocks the teeth out of every male over nine years of age. And while living surrounded by natural beauty and wilderness air Canadians smoke themselves to death. We joke that Canadian restaurants offer two seating choices: Smoking and Chain-Smoking.

I learned a lot in that marriage. I learned to care more about the rest of the world as Canadians do and to not run from the room when the world news comes on.

I learned that waiting for the walk signal is not passive submission to rules and regs; rather it’s an active expression of community and being part of the common good.

Wednesday, June 3, 2020

Racial Discrimination & Disparity in CancerLand


So, this week we are each looking at ourselves and asking about our own participation in the culture of racism, and asking ourselves (I hope you are) “What can I do to be an anti-racist?”


But, for goodness sake Diane, this is CancerLand, could there be a place more inclusive, and more, “we are all in this together?”

Well, I get that. 
Colon cancer, breast cancer, lung cancer—when we suffer, we suffer. Our caregivers are stressed and anxious in similar ways. Yes, but. But. There are differences related to race and class and income and poverty and disproportionate care and access to care.

Years ago, working with a cancer support group I was dismayed that when there was an opportunity to locate that luscious care center in our County it was built in a very suburban area, with very little access to public transportation. Yes, busses do go there a couple times a day, but no sick or tired cancer patient was going to take two or three buses with a 30-minute wait in-between. But the place was so pretty and the staff so truly loving, that reality slipped by.

The other way that cancer and cancer care discriminates is in its relationship to poverty. When many of us—let’s say middle-class—are diagnosed, our friends rally: here come the casseroles (Oh, dam the lasagna), and the offers of childcare and rides, and “I’ll go to the doctor with you to take notes.”

But if we live in poverty the odds are pretty good that our friends do too. They care just as much but maybe they can’t cook for two families or take time from a no-benefits job to accompany us to appointments, or spend hours at chemo with us, or offer rides if public transport is their ride. 

So, patients in poverty miss more appointments, leave chemo earlier, don’t have a pal advocating fiercely for that second opinion or that NYC or Boston trip. Do those things affect cancer’s outcome? Add to that--their family caregiver likely can’t take as much time off  from work.

And, we haven’t even touched the subtle racism (let’s say unconscious) by some docs and other medical personnel. 

It’s a very different part of CancerLand.

Let’s learn about that, and use our Cancer Power for advocacy in our shared territory.

And let’s read a bit, and ask more questions, now or as soon as you are feeling better.

Want to learn more?
Here are two articles that explain this discrimination and disparity in CancerLand:

This article is from Rush University Medical Center
https://www.eurekalert.org/pub_releases/2019-04/rumc-owc042219.php

This article is by Brian Rivers, PhD for Cancer Today Magazine
https://www.cancertodaymag.org/Pages/Spring2020/Taking-Steps-to-Address-Cancer-Health-Disparities.aspx

Monday, April 6, 2020

The Tools in CancerLand That Help Right Now

Those of us who have lived in CancerLand, have a tool kit that we can open in this time of COVID-19.   These may not be tools we wished for years ago, but nevertheless, we have them. And maybe now we can lean into those tools to help ourselves and others.

Here's an article from Kate Bowler who is a cancer survivor and a scholar at Duke Divinity School: 

https://www.nytimes.com/2020/04/05/us/kate-bowler-cancer-coronavirus.html?smid=em-share

Maybe take some time today to inventory your tool kit.





What did cancer or caregiving teach you?

Sending you lots of love.


Be well. Be safe. Stay home.

Sunday, March 22, 2020

When Chemo Doubles the Impact of Quarantine

Yes, those of us in CancerLand--whether patients or caregivers--have extra challenges and protocols right now. The pressure can feel more intense, and the restrictions on family are greater too.

Thought you'd like to read this story by Larry Rulison, a reporter for the Albany Times Union--who is working--at home of course because he also being treated for Stage 4 appendix cancer. Here is what it's like at his house in Albany, New York.

https://www.timesunion.com/news/article/Times-Union-reporter-undergoing-chemo-learns-what-15140810.php

What is it like at your house?

What modifications are you, and your docs, making for your care?


Saturday, March 14, 2020

Meditation and Mindfullness for Caregivers

It would seem impossible to add one more thing to the caregiver’s to-do list. But, adding meditation or a mindfulness practice may be the very thing that makes that too long list a little more manageable.

No, doing meditation or yoga or Qigong or another mindful practice is not a total remedy to the stress and business of caregiving, but is absolutely a positive aid and help.

Now documented in many years longitudinal research, it’s been shown that caregivers—of people with serious illness, dementia or a child with a developmental delay—cope better, report more ease, and have fewer physical symptoms of their own when they are engaged in a mindfulness practice.

And mindful meditation, breathing practice or yoga becomes more than just a way to cope with the stress; it’s a way to fully embrace one’s life as caregiver.  

Trying to attend a weekly class may be over the top, but there are many online resources, and podcasts that give basic instruction in Pranayama (Yoga breathing), restorative yoga, mindful awareness, and meditation. 

And if you are part of a caregiver support group, ask if some meditation or yoga instruction can be added to the meeting once a month.

Saturday, October 26, 2019

The Carry-on Bag for the Caregiver


When you become a caregiver for someone with cancer you need to prepare yourself for the role. 

You have logistical work to do, of course: calendars, credit, insurance, benefits, appointments and medication reconciliation. 

And you have emotional work to do: Fear, worry, love, and the biggie: boundaries. If you are the caregiver for an adult patient you don’t want to be parental, but you will likely need to be responsible. 

You’ll need to separate your feelings from theirs and have your own support team when you cannot turn to your partner to be your support while you are caring for them.  You may have depended on your partner to help you through hard times in the past, but when you enter CancerLand, your partner’s illness becomes the hard time. 

Your partner may have been the one who managed the logistics of your life: cars, money, credit etc. And your loved one may be very competent in these areas but once chemo begins or the impact of other meds like pain killers you will—temporarily—lose that competent partner. And the distraction factor is huge: “Am I going to die?” can undo the most fastidious financial manager.

So, caregiver—you are now in charge:

Get every account number and password in one place. 

Get copies of the medical power of attorney and have two copies with you at all times. You’ll need to hand it over again and again. Just because you put it in the medical record last month doesn’t mean it’s still there.

Get a limited Power of Attorney for all things non-medical as well. There may be things you need to transact on behalf of your partner, or documents you need to see—medical and non-medical and you’ll need that Power of Attorney to graciously make your point.

Start your caregiver notebook immediately—if the diagnosis was slow to arrive you may not have written down every little thing—so back date a few pages and fill in all you can remember: dates, ER visits, doc appointments. Then keep this notebook in your caregiver tote bag (below) and always return it there. Don’t keep it on your desk or at work---you may need to rush to a hospital or jump into an ambulance and that tote bag is all you need to grab because it will have:

Your caregiver tote bag is your home away from home. Buy extra of everything mentioned here so you are not running around or borrowing from the bag. This bag is sacred. In the bag you have:

*Your caregiver notebook—not too big—spiral is great, but no three-ring binders—too cumbersome
* Pens and sharpies and a highlighter
*A written (paper) list of everyone’s phone number: family, friends, doctors, hospitals.

 (Yes, I know they are in your phone but if your phone doesn’t work, dies, isn’t permitted—you have the numbers) And people who might not be in your phone—your partners employer, doctor, best friends.
*A phone charger—a separate charger that only lives in this bag.
*A book to read in waiting rooms—like Goldilocks—not too hard and not too easy. A good book
*Magazines—there will be times you are too fraught to read a book and the magazines in waiting rooms are awful and old.
*Some spiritual or inspirational literature. Something to lean into that inspires and uplifts you. There are lots of nonreligious ones—a daily meditation book etc. There are several just for caregivers.
*Envelopes—for when you want to leave a note for a doc or nurse
*Nonperishable snacks—protein bars, packs of nuts, candy bars that cannot melt, bring more than sugar—a 30-minute appointment can become a six hour wait in a flash.
*Cash—yes, paper money and coins for just in case for phones, tips for the valet, coffee machine etc.
*A sweater or shawl that you keep in this bag. (Do not “borrow” to wear to work.) Waiting rooms and ICU rooms are cold—on purpose. And fear has a way of lowering your body temperature.
*The Healthcare Proxy (multiple copies) Have this conversation with family early—include his/her parents, siblings, ex-spouse, step kids. Be sure its legal and official and notarized. 
When your partner is sedated or unconscious or in the recovery room you don’t want the additional pain of  a family fight over, “He wanted…she wouldn’t want…I’m the husband…Well, I’m his mother.” One spokesperson. One proxy plus a backup.
*The Powers of Attorney—keep copies in the tote bag.
*Tooth brush and mini tube of toothpaste (in a ziplock)—Just in case you need to stay longer or just to refresh yourself mid-day
*Extra glasses and bring a case for your contacts.
*Have a copy of your partners driver’s license, birth certificate—copies only—you don’t want to lose the original documents, but copies can come in handy.

Monday, October 14, 2019

One Hundred Autobiographies, by David Lehman


There are many personal stories of cancer. Many self-help stories and many memoirs. And yes, there are even cancer poems.

But now we have a book that is both a cancer story and a work of literature that happens to be a memoir by a poet. We would not wish cancer on anyone, not even—as we say—our worst enemy, but now some gratitude because cancer has given us a gift in the new book:

“One Hundred Autobiographies” by poet and scholar, David Lehman.

It is true that for a writer everything is material, and that for a writer everything is examined through the lens of language, so of course from his first suspicions Lehman began to craft a story—the real and awful story --of his bladder cancer.

The “One Hundred Autobiographies” is one hundred short vignettes detailing and documenting diagnosis, treatment and into the start of recovery. 

While we, here is CancerLand,  may know some things about cancer, and some things about bladder cancer, Lehman takes us to new places only a poet can take us.

He brings popular culture into the rooms, (look there--Keith Richards and Patti Hanson--who knew?) and he also allows intellectual folk like Edward Said and Lionel Trilling to join in. 

But how else would a poet and scholar do cancer?

Lehman shows us his pain and fear, and he shows us his love, and his loving wife, Stacey who documents what Lehman cannot see or sense when he is under the spell of anesthesia and the recovery room.

But here’s the thing about this cancer book: You are also going to laugh when you least expect it, and you are going to scribble in the margins (hence, buy your own copy) all the quotes you want to save and the books you’ll want to put on your library list (“The End of the Affair” by Graham Greene was first on mine.)

Lehman’s book is smart and sharp, with a touch of literary celebrity, and beautiful language. And something else: You don’t even have to have cancer to be enthralled by this book.


***
David Lehman is the author of: Poems in the Manner of...and Sinatra's Century: One Hundred Notes on the Man and His World. Lehman is the editor of The Oxford Book of American  Poetry and series editor of The Best American Poetry. He teaches in the graduate writing program of the New School in New York City.