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. 

Wednesday, June 10, 2020

More About The Cooking Gene

Last December--what feels like roughly eleventy-billion years ago now--I wrote about two books in connection with my father's birthday. One of those books was The Cooking Gene, by Michael W. Twitty.


This past couple of weeks, we as a society have looked (again) (and, I hope, in a sustained way) at murders of black men and women and focused a renewed, deserved attention on Black Lives Matter. 

As I've considered the ways in which I've benefited from being White, I keep thinking about this book. In the post six months ago, I shared how this book changed my perspective on the value of DNA tests as a way to trace family history. (Again, not the use of any DNA aggregation as "proof" that "I can't be racist because genes" or "I'm indigenous because genes." Again, check out the work of Dr. Kim TallBear.)  

Here's another subject Twitty discusses: slavery was an industry, in the modern sense of industry. When White people enslaved Africans and brought them to the Americas, they chose different peoples from different areas--they "matched" those they enslaved with the areas in which those people would be sold to work. Someone who cooked shellfish on the Atlantic Coast was stolen and brought to another place to cook shellfish on the Atlantic Coast. 

Of course slavery was like this. Of course it was. This is hard to type: people were property--owned, like things, like an antique chest of drawers or a pocket watch. White people assigned value to those "things," as  they judged the relative worth of antique furniture or jewelry. 

I mean, I knew this. I just hadn't looked at it closely enough. I didn't unpack what "enslaving people" meant--the serious of callous and inhumane actions it would take to be a broker or someone otherwise involved in that trade. 

These were the people who set up systems from whom I still benefit, 400 years later.

This morning, my husband and I were discussing our roof, which leaks (again) (still). We're talking about the work we might like to have done on it, and the various pros and cons of the companies we know of in the area who do this kind of work. 

Eventually, we'll choose someone at some roofing company to attempt to stop the leaks. We will match their skills to our needs. And, because we live in a capitalistic economy, we'll pay the company for it. 

Because we can. Because we've benefited from systems of education and employment that make it possible for us to live in a beautiful place, and care for it as best we can.

Another recent insight: it's possible to be grateful and nauseated at the same time. 

And I'll say it again and again: Books are passports to others' experiences. They are conversations with important people, and I'm grateful for the opportunity to listen.
Wednesday, June 3, 2020

Book Resource: The FOLD and Others

Many people more knowledgeable and connected than I am are posting many resources to educate White people about Black history in North America. 

Pay attention to those--but look at this organization, too. Here's a link to The Fold, an organization that does so much for voices traditionally underrepresented in the literary world. 

They hold a Festival of Literary Diversity each spring, and this year, they held it online. It was exciting to be able to "go" (from our upstairs guest room) and hear great writers talking about process, community, revising, and many other struggles of art and craft.

They also host a reading challenge each year. And they hold (ACCESSIBLE!) webinars and other activities all year, including an event for young readers. They recommend books all over their site.


The next resources are not specifically Black-owned or -led but they support diverse Canadian literature.

If you're looking to expand your reading horizons, you can also look at 49thShelf.com for Canadian authors and titles. Here's a link to their lists labeled "diversity." 

To purchase books, consider All Lit Up, a consortium of small publishers, or buy a title directly from the publisher. 

Read. Learn. Have hard conversations. 
Wednesday, May 27, 2020

REVERBERATIONS Shortlisted!



The Ontario Library Service - North announced yesterday that REVERBERATIONS: A DAUGHTER'S MEDITATIONS ON ALZHEIMER'S is shortlisted for their Louise de Kiriline Lawrence Award for Nonfiction.

Ontario libraries have not received much support (neither rah rah NOR financial) in the past eighteen months, and are again scrambling to meet community needs during this pandemic. I'm so grateful that OLS-N is giving out this award this year, and that they've chosen to recognize REVERBERATIONS in this way.

As always, I'm grateful to the team at Signature Editions for their support. 

Read books, y'all. If you can, leave reviews or comments in public places. And check out books from your library, whether that means investigating online options or scheduling a curbside pickup. Your future self will be grateful to you!
Wednesday, May 20, 2020

Small Starts

Good morning! Look at this: 


Pretty, huh.

Yesterday, I participated (online) in a workshop from the North American Association for Environmental Education, entitled "Nature as Inspiration and Transformation: An Intro to Nature Poetry."

I got to spend an hour with Aimee Nezhukamatathil, author of World of Wonders, to be published by Milkweed (one of my favourite publishers) in August.

Here's more:



Interesting, though possibly less "traditionally pretty."

The workshop, though: it was wonderful! Especially because I'm generally intimidated by poetry, both reading it and writing it. And I have an appreciation of others' scientific expertise, which I emphatically do NOT have.

And yesterday, I was reminded that all writing starts somewhere, and a sense of wonder--both in the sense of "awe" and in the sense of "curiosity"--is a great starting point.



Also: the power of starting small. Of keeping journals where you record (in writing and sketching!) observations of the world and sky. Of leaning into the things that make you mad or you don't like.


Maybe those observations grow into something more and maybe they don't.

It was lovely to participate as Aimee encouraged all of us to relax the pressure we might feel--from others, from ourselves--to "be productive" or "create."

Those who follow me on Instagram (where I'm marionagnew) know that fairly often I go over to the beach in front of our small camp on Lake Superior.

I pick up what our family calls "driftglass" and others call "seaglass." And I take pictures of it before I put it into a glass jar, where I enjoy looking at it.

I also write about these bits of glass, which you might have read if you've read my book, Reverberations: A Daughter's Meditations on Alzheimer's. Spoiler alert: they made me think of my mother! And also sheets.

In any case, that's what's on my mind these days: small starts, wonder (awe and curiosity), and, as always, this beautiful place in which we live (and parents and sheets).