Wednesday, July 29, 2020

Two More for You, and One Forthcoming

As part of an event sponsored by my publisher, Signature Editions, in June, I appeared on a panel. It was fun! (Links for all things REVERBERATIONS-related are here and here.) We talked about the rewards and pitfalls about writing intensely personal stories related to health and illness.

Books. Lots.


In preparation for the panel, I had occasion to read the titles by the other panelists:

* Micro-Miracle: A True Story, by Amy Boyes, about her experience when daughter Madeline comes sixteen weeks early. It's a harrowing and ultimately satisfying story about a world entirely new to me, that of a micro-preemie baby. Well, babies are pretty foreign to me in general, and I think that (lack of) experience intensified my concern when things start to go wrong for Amy and her baby.

* Rain on a Distant Roof, by Vanessa Farnsworth, about her experience with Lyme disease in Canada and making sense of her body when her body no longer makes sense to her. Sections that provide a window into her hallucinatory experiences alternate with descriptions of the ways in which the Canadian healthcare system stresses and ultimately fails those with Lyme-related conditions. 

I recommend both books. Both successfully tackle complicated subjects--they provide information and immersive suspense. 

And Vanessa Farnsworth has a new book coming with Signature next month! It's fiction, called The Haweaters, and it's set in Manitoulin Island about 150 years ago, loosely based on events in Vanessa's family. I look forward to finding that one, too!
Wednesday, July 22, 2020

Mixing Metaphors

I'm trying to make progress on more than one front at a time, and I don't feel especially successful.

Perhaps it's typical for summer. Perhaps life is always like this, and I become aware periodically. 

Regardless. 

Recently, I wrote on a scrap piece of paper: How is a leaking roof like a manuscript in progress?


Well, maybe a better question is how are they NOT alike, amirite?

Neither works well, as is. But it's easy enough to ignore how poorly they're working until it rains and you're forced to notice. 

Both are tricky to fix. You think you know where the problems are, but when you finally get a roofer to stop by, he says it's the siding and the chimneys. Siding people say they don't do chimneys (though chimney supporting structures have siding and flashing). Chimney people say that they fix only chimneys they have put in. 

When you venture up in the attic to slather the underneath of the roof with caulking, which is a patch job at best, you discover other stuff. Back to books for a moment--I recently read a couple that I'm pretty sure were the manuscript version of caulked when they could have used a new roof. I can understand why people don't take their manuscripts apart; it's daunting. But that's the best fix. And it's frustrating to read something that is patched when the actual fix would have been more satisfying and less difficult than it appeared ahead of time.  

So basically, we enjoy rainy days in summer--beyond cooling off the world and nurturing growth, they help with our well. (Gosh, that's a metaphor too.) But they also make us uncomfortably aware of elements of our shelter that we need to fix. 

The only conclusion I have come to is something I read on Instagram that has a long lifespan in social media: The magic you're looking for is in the work you're avoiding.

I'm not looking for magic--just a puzzle that fits together in a satisfying, untidy, glorious way. Back to work, eh.
Wednesday, July 15, 2020

And Now I Don't Have To

Years ago (1996: geez, almost 25 years), Jon Krakauer published Into Thin Air, a book about an expedition up Mount Everest in which a lot of people died. I happened to catch the first article in Outside magazine, which was a teaser for the book. I found the reading and reporting to be interesting.

An IMAX movie (remember those?) called Everest was released in 1998. I lived in Colorado at the time and went with a group of people to see it in a theatre. 

As the lights came up at the end, I said, "What an absorbing experience. And now I know I don't want ever to climb Mount Everest." (In contrast, the people I was with were all gung-ho for an Everest climb. I don't live in the same community of people or even in the same country. Those two facts are not unrelated.)

My point is that sometimes I read a book and think, "Whoa, I'm glad to have read that, and I have zero desire to go and do likewise." Basically: they did this thing, and now I don't have to because I got to read their book. 

Here are two fairly recent reads that inspired that same thought: Little Yellow House: Finding Community in a Changing Neighbourhood, by Carissa Halton; and A Place on Earth, by Wendell Berry.


(NOTE: This is NOT the U.S. book called The Yellow House. This is a different book.)

On the surface, these two books pictured above are quite different. Little Yellow House is Halton's first book (though she's an experienced writer), and it's creative nonfiction; Wendell Berry has a long list of highly visible and acclaimed books of fiction, essays, and poetry. A Place on Earth is one of his early works, but it's been recently revised--and it's fiction.

Carissa Halton is, ahem, significantly younger than Berry. She's Canadian. He's not. He's explicitly religious; she is not. Halton's book is set in recent times; Berry's isn't.

Yet the books are similar. Both are about places, and communities within them. Each book shows and examines the roles of individuals within communities, and how individuals (and individual families) make space for themselves and each other in communities. 

Neither paints an idyllic portrait of community life. In these communities, people die. People take advantage of others. People do decent things for misguided reasons. People judge. The community adjusts, survives, and even thrives.

Neither book makes me want to go do what these authors write about. I have zero desire to trade rural northwestern Ontario for an urban neighbourhood in Edmonton, in spite of the evident love with which Halton regards her little yellow house and its environs. I also have little desire to visit Kentucky, much less live there and farm tobacco, even if I could live in the mid-1940s world Berry presents. 

Both have inspired me to think differently about the meaning of various terms: investment, nostalgia, economic systems (and the costs thereof), neighbours, art, and love. 

Both are well worth reading. You can order Little Yellow House from many independent booksellers but also here, at the University of Alberta Press

They weren't "escapist," exactly. But they were horizon-broadening, in the best possible way. 
Wednesday, July 8, 2020

Something Clever about Raining and Pouring

It's summer, so everything and nothing is different. The main thing that's different is what "thing" in the previous sentence refers to.



I'm juggling different things than I was a while back. New things like roofs and paint and sanders, and do we need a battery charger.

That said, some of the context from the past four months is the same: if we do need said battery charger (or paint/stain, or sandpaper), how physically do we get it when we're not going into stores. Also: is it time for another grocery pickup.

That said, many lovely people are saying nice things about my book, Reverberations: A Daughter's Meditations on Alzheimer's. And they all seem to have been talking about it in the past two or three weeks.  



This week, an extended interview with Suzannah Windsor appears at Write it Sideways. I read there, too. 

It was so much fun to connect with Suzannah, whom I first met online and later in a diner for coffee (and sometimes bacon!) to talk about writing. I found her questions really thoughtful.

This interview ranges from my pre-Canada background to the number of years it took to collect essays for my book, and my writing process. Here's a snapshot: 

Essay by essay, idea by idea, I groped my way toward a form that meshed my skills and the larger story. Luckily, many writers had stretched and experimented with creative nonfiction during this time, so once I found the labels “creative nonfiction” and “personal essay,” I could learn from reading their work.

While I'm sanding and painting (and making phone calls to siding and roofing companies and ordering things for pickup), I think too about this "new normal": the one we're in now. Where the seasons still change and give us different tasks, but elements of the contexts don't change as much. 

What parts of this "new normal" do we want to keep? What do we want to do differently, when we start doing different things again? "We" meaning me and my household, and "we" meaning the world.
Wednesday, July 1, 2020

REVERBERATIONS is at AlzAuthors today!

Today, REVERBERATIONS: A DAUGHTER'S MEDITATIONS ON ALZHEIMER'S is the featured post at AlzAuthors, a website that has assembled a huge array of resources for people with dementia and those who love them.



At this site, I share the process of writing about Mom's dementia and the role stigma played in my family's reluctance to confront and address her illness. 


I hope readers see that people with dementia and their care partners remain people—unique individuals, with lives that include joys both big and small. I hope readers understand that while a family’s emotions can include guilt, anger, and embarrassment, they can also include love.

I hope that somewhere, a reader gives my book to a friend, and they start a conversation. Because talking about Alzheimer’s and dementia is how we create a more understanding community for all of us. 

Monday, June 22, 2020

Upcoming Online Event! "Medical Mysteries, Personal Crises"

I'm pleased to participate in "Medical Mysteries, Personal Crises"--a livestream this Wednesday, June 24, hosted by my publisher, Signature Editions, at 7 PM Eastern. 

And yes, you can watch even if you don't have Facebook, though you can't comment. Click here to join the livestream. 

The description: "Three authors talk about how and why they've written about very personal medial issues--Marion Agnew on Alzheimer's disease, Amy Boyes on premature birth, and Vanessa Farnsworth on Lyme Disease."

Our three books have many similarities but also many differences, as do our lives and approaches to writing. Come, bring your friends, and ask questions! 

Also: Signature will make available FREE COPIES of our ebooks for 24 hours after the stream!



If you can't make the live event, the video will also be available afterwords. I'll post a link when it is. 


Wednesday, June 17, 2020

Race, COVID-19, and Dementia: June is Alzheimer's and Dementia Awareness Month

At least, June is officially Alzheimer's and Dementia Awareness Month in the U.S. Results for Canada seem to be mixed, with Canada's public health infrastructure celebrating World Alzheimer's Awareness in October.

Forget-me-nots, a near-universal symbol of dementia awareness, bloom in July. 


At least they do here, near the lake, in shady wooded areas. The ones above are from last summer.

In that spirit, let's not forget a few things, as we 
* continue to endure the COVID-19 pandemic, 
* are reminded, painfully, of our personal internal biases and the racism in our institutions, 
* are grateful in June for longer days, bright sunshine, and growing gardens
        - yet remember how long a day can be for someone with dementia 
        - and for the people who love and care for them 

Here's some information to read and remember. 

Canada's national dementia strategy, Together We Aspire, released about a year ago. (It mentions race in the context of Indigenous nations. Which is something. Is it enough?)

According to this study published in 2016, in the U.S. between 2000 and 2012, dementia incidence was highest among African-Americans (26.6/1000 person-years) and America Indian/Alaska Native (22.2/1000 person-years). Of intermediate incidence: Latinos (19.6/1000 person-years), Pacific Islanders (19.6/1000 person-years), and Whites (19.3/1000 person-years). Of lowest incidence: Asian-Americans (15.2/1000 person-years). 

Racial disparities in the rates of dementia in different races are linked to social determinants of health. Which is to say: education levels. Comprehensive, sustained treatment of hypertension, general cardiac and vascular disease, and diabetes. Access to wellness programs. Ergo: healthcare systems are racist. I'm linking to just one article but there are many. 

Nursing homes, long-term care homes, retirement homes--where many people with dementia are cared for in the later stages of illness--have been the site of most COVID-19 deaths in the U.S. and Canada. Here are links: An article about the U.S. rate from May. An article about Canadian rates from May. 

A website, AlzAuthors.com, compiles resources of all kinds (books, blogs, articles, caregiver guides, and writing by those WITH dementia) about Alzheimer's and other forms of dementia. (And yes, Reverberations: A Daughter's Meditations on Alzheimer's will be featured on their blog on July 1.)  The site doesn't include a way to search by race to find Black- or other BIPOC-specific resources. However, a friendly librarian or a bookseller at an independent bookstore might be able to direct you toward resources for those interested in the Black experience of dementia. 

The National Institute on Aging at the U.S. National Institutes of Health links to this PDF from Kentucky, The Book of Alzheimer's for African-American Churches. The chapter beginning on page 57, "Dementia and the African-American Community," shares more sobering statistics and cultural concerns. It refers to Nebraska activist Lela Knox Shanks, author in the late 1990s of Your Name is Hughes Hannibal Shanks: A Caregiver's Guide to Alzheimer's. The resource suggests ways churches can reduce stigma around dementia and questions of faith that may arise in people with dementia and those who love them. It includes ten concrete actions that faith communities--or any community, really--could undertake. 


Similarly, I'd "known" that COVID-19 is more prevalent in nursing homes, but I was shocked all over again at the ease with which I found references describing and discussing that fact. And conversely, I was surprised by the relative lack of data around race and dementia, and the relative lack of race- or culture-specific resources. 

Neither search was exhaustive--and both were exhausting. Illuminating. Good experiences for me, in this month of long days.

I keep coming back to this: stories are important. 

So: Whose stories are we hearing? Whose stories are we ignoring? 

Who's not sitting at the table--who isn't even in the room? 

How can we open doors, vacate seats, pass the microphone? 

How can we keep listening, no matter how exhausted or uncomfortable we are? Because we must. We must.