Digital methods in caregiving research

Today I was honored to receive the 2021 Innovative Contribution to Family Nursing Award from the International Family Nursing Association (IFNA). I joined IFNA in 2015 and attended my first International Family Nursing Conference that year in Odense, Denmark. Since 2016, I have been a member of the IFNA Communications Committee and currently serve as co-chair, as well as editor of the IFNA blog. With members of the Communications Committee, I co-presented a workshop on the use of social media to advance family nursing at IFNC13 in Pamplona, Spain. At IFNC14 in Washington, DC, I led and co-presented a workshop on innovative methods for data collection in family caregiving research, focusing on the use of digital methods to expand family nursing and family health research.

The award is in recognition of my “innovative contributions to family nursing and family health related to…leveraging of digital research methods to explore family health.” I appreciate the recognition of this work as its value was not always seen. I’ve written before about some of the perceptions I faced regarding how those of us who are not nurses can contribute to family health. Similar perceptions initially applied to the work for which I am honored with this award. I was told “this won’t take you anywhere.” Detractors said my idea of using the Internet, particularly social media, to understand family caregiving wouldn’t work because they assumed caregivers and older adults didn’t use social media. And even if they did, what could be gained from such an analysis? But I persisted because I knew their assumptions about who caregivers are and how they use technology were not based on the evidence.

Over the last several years, I’ve led world-first research using digital research methods in the field of caregiving in dementia. The majority of this work has centered around an examination of blogs written by family caregivers of people with dementia to characterize the family caregiving experience, offering new, person-centered insights to drive the development and testing of novel interventions and services. It started with a paper on how and why caregivers of people with dementia use their blogs. Other papers have focused on how caregivers practice self-care and the nonpharmacological strategies they use to provide care. The use of these digital methods offers a window into the caregiving experience unmatched by more traditional research methods, allowing my colleagues and me to examine sensitive topics among caregivers, such as suicidal and homicidal ideation. My colleagues and I continue this digital work regarding how and why people with dementia and their families use social media to understand ways in which family nursing and family health researchers might provide support to these families. The latest papers focuses on dignity in dementia caregiving and caregiving at end of life. Over time, I’ve garnered an international reputation for this social media-focused work, providing me with the opportunity to guest lecture and offer research consultation on digital research methods at the University of Exeter in the United Kingdom and the Centre for Age-Related Medicine in Stavanger, Norway. And I’ve been lucky to work with early career researchers on identifying people with dementia on Twitter and understanding how they use this platform.

In addition to my use of social media data, I use digital research methods to recruit and collect data among populations considered hard to reach or “hidden,” specifically sexual and gender minority caregivers of people with dementia. My work has demonstrated that sexual and gender minority adults more frequently use the Internet to seek health information than their heterosexual counterparts. Taking advantage of this insight, my recent research study funded by the National Institute on Aging used digital methods to collect data via social media-based recruitment targeted toward self-identified sexual and gender minority caregivers of people with dementia. These methods increased accessibility and reduced exclusion of rural caregivers or caregivers with fear of discrimination, thereby broadening the understanding of the sexual and gender minority caregiver experience. Additionally, because social media platforms are used by a diverse population in terms of age, race, and ethnicity, this approach enhanced our ability to recruit a diverse sample, exceeding recruitment goals in terms of race and ethnicity. Findings from the studysignificantly extend what is known about sexual and gender minority caregivers of people with ADRD, providing unique data about this under-researched population and laying the groundwork for future research to support this caregiving population.

Finally, through my engaged scholarship approach to my program of research, I disseminate these innovative research strategies to enhance family nursing and family research, education, and practice through social media and traditional scholarly dissemination. My active presence as a family health scholar on social media ensures that family health content spreads globally to a broad and diverse network of professionals and, most importantly, families. That’s what is most important to me—putting information into the hands of caregivers. Social media is an excellent tool for that, and I’m always heartened when a caregiver reaches out to me via Twitter to share their story or seek resources. Helping caregivers is why I do what I do and awards like this help to present more opportunities for me to do so. 

Bonne anniversaire

IMG_0156Today is my birthday.

It’s not something that I generally advertise or talk about. I don’t really celebrate it. I have my reasons. Or at least I did.

Zora Neale Hurston said, “There are years that ask questions, and years that answer.” This year has been a year of questions so far, at least for me. The tail end of 2019 was, too. Some of these are newer questions; others are the same old questions or variations of previous ones.

It’s the questions that have kept me from celebrating.

“What’s the point? It’s just another day.”

“Does anyone care anyway? They never really did before.”

“When the person who made it special is no longer here, why bother? It will never be good.”

I feel the need to point out that my age is not why I don’t celebrate my birthday. But I would like to think that as I get older that I do get a tiny bit wiser. Or at least pay attention more, especially to Grandmother Wisdom.

Grandmother Wisdom is my absolute favorite type of wisdom. I like Grandfather Wisdom, too, but I’ve never had a lot of access to it. My paternal grandfather died before I was born, so that left the wisdom bit to my maternal grandfather who was a truck driver until my adolescence.

But Grandmother Wisdom I got in buckets because I was fortunate enough to know and spend time both of my grandmothers and all four of my great-grandmothers. And over the years, I’ve paid attention to the older women in my life—those friends and colleagues who know much more about the goings-on of the world than I do.

It was two of these women who admonished me last year for not celebrating my birthday. In response to my questioning rationale described above, my friend Annis from New Zealand simply replied, “it’s not about you.” Why would I rob the people in my life of celebrating my presence in their lives? Good question. And why wouldn’t I at least express gratitude for another year “this side of the sod.”

I am grateful, extremely. My life, though not perfect (who’s is?) and not always what I planned (again, who’s is?), is rather extraordinary. And if I look past the self-perceived flaws, it’s clearly the life I dreamed of, merely in a different form than I could have imagined.

If I’ve learned anything in the past several months, it’s been more appreciation of that—acknowledging the flaws in way that allows coexistence with my blessings. As I’m writing now, a clear and vivid image comes to mind.

In my mind’s eye, I see a stream running freely and clearly through the middle of a forest of tall trees. There’s a clearing around a portion of the stream and from its pebbly banks, you can look up and see the sky. Above the treetops in front of you looms snow-capped, red-rocked mountains. Behind you and to the right of your field of vision, you can see the slope of the forested hillside that brought you here. The water is a deep, inky blue. The bank is covered with smooth, dark gray pebbles to match the larger boulders punctuating the stream.

As you turn to your left, you see a wise woman seated at a simple loom closer to the water. Approaching her, you can see over her shoulder that she is weaving a tapestry, though the final pattern and image is not clear. It’s stylized, yet familiar—abstract, yet traditional. To her left is a basket containing a haphazard mix of yarn and thread. You know what she knows. These are the supplies she has been given with which to weave the tapestry. Dark, light, ugly, beautiful…all must be used and incorporated into the pattern, into the story this tapestry will tell.

This image is very familiar to me. I think about it a lot on my birthday. And I see it anytime someone talks about life and its events. It particularly comes to mind when I hear folks say things like “let it go” or “move on.” My ears and brain process those phrases as if one can divorce oneself from life events—the events that ask the questions that put off celebration. I hear these sentiments as if the weaver can throw an ugly skein of yarn back into the basket because they don’t like it.

To me, the tapestries of our lives present us with a multitude of threads, some grand and some not so grand. But we must find a way to incorporate all of these experiences, perceptions, thoughts, and feelings into our tapestry. Rather than letting it go, we’re letting it be. We’re learning and growing, following the patterns of our lives and steering ourselves toward the remembrance of our wholeness.

So, it’s my birthday. I doubt I’ll become like my friend Kellie and celebrate all month long. In fact, I have no plans to celebrate. At this point in my life, acknowledgment and gratitude are enough.


Good Moments

IMG_0688As I write this post, I’m sat in the Centre for Medicine and Aging (SESAM) at the Stavanger University Hospital in Stavanger, Norway, working with my IDSC colleague and friend Professor Ingelin Testad. She directs SESAM, leading a group of graduate students, postdoctoral fellows, staff, and volunteers in efforts to improve the lives of people with dementia in Norway. Through their public engagement platform titled Wise Age, they sponsor and host a series of events to support older adults in Western Norway.

I’ve been quite fortunate and grateful to spend the past twelve days here presenting my research in dementia family caregiving; meeting with existing and new collaborators from SESAM, the University of Exeter, and King’s College London; and consulting with SESAM staff regarding media strategy and engaged scholarship.

But as with everything in life, it’s been the people and the stories that have made it all memorable and have helped to create the good moments, or gode øyeblikk. This is something Ingelin and I have been talking about all week as she begins to develop her own professional blog and website. It has become our hashtag. So whether it has been laughing over a good dinner at Skagen on the harbor, appreciating the opportunities to connect with international colleagues from across Europe in meaningful conversations, walking through Gamle Stavanger, cruising up the fjords, dipping my toes in the North Sea, having my first sip of aquavit, or wandering through fantastically colored rhododendrons in peak bloom, this trip has been filled with good moments for me that I’ve been sharing on Twitter.

As with my last trip to Europe two years ago, I plan to pull together a digital scrapbook when I’m back in Tennessee that will make it easy to share and treasure the many things I did and saw while I was here. And I’m already looking forward to my next visit, as well as all of the inspiring work between now and then.

In the meantime, I’m very grateful to my friends and colleagues here in Stavanger for helping me to collect a skattekiste or treasure chest of good moments.

“Is this thing on?”: Leveraging communication tools to promote engaged scholarship

IMG_3626This morning, I received a more detailed itinerary for my upcoming trip to Norway in May. The twelve days in Stavanger at the Centre for Age-Related Medicine will be full of collaborative research meetings and networking events; presentations to a variety of audiences, including health care providers; and quality time with colleagues and friends. And let’s not forget the gorgeous surroundings of the fjords. All of this came about through purposeful engagement on several levels, including a willingness and drive to share what I do in my program of research, as well as to include in that program of research digital methods and tools.

Engaged scholarship is a term that increasingly gets thrown around in academia, along with words like impact and community engagement. The Carnegie Foundation defines community engagement as follows: “Community engagement describes the collaboration between higher education institutions and their larger communities (local, regional/state, national, global) for the mutually beneficial exchange of knowledge and resources in a context of partnership and reciprocity.

Essentially, I do what I do because I believe that care and compassion are important and because I know that we all need help along the way. I spend my days wearing my thinking cap and working on strategies and tools for symptom management and caregiver support in dementia, as well as exploring the impact providing care for someone with dementia can have on families and friends. And I’m fortunate to work with amazing scholars from across the country and around the world in these efforts. Together, my colleagues and I develop tools, design and test interventions, and explore social media data all in an effort to support these families.

But it doesn’t mean anything if what I learn and discover isn’t shared with the world. If my goal is to make the lives of caregivers better, then I can’t hide my scholarship under a bushel. The Office of Community Engagement and Outreach at the University of Tennessee has a page on its website outlining ways of sharing one’s research, stating “a fundamental part of the engagement process is sharing research findings with those in your discipline and with community members.”

Earlier this month, I collaborated with my College of Nursing colleagues Carole Myers, Robin Harris, and Terri Durbin on a colloquium for our PhD and DNP students about leveraging communication tools in new ways to promote engaged scholarship. We spent the morning working with our students on recognizing and owning their expertise as nurses, honing key messages about their work, and using tools like social media, elevator pitches, and media interviews to get these messages across to stakeholders. I explained to them how I use social media as a way to share and conduct my research, providing examples of how I use my colleague Wendy Looman’s approach of curating, connecting, collaborating, and creating on Twitter to engage with other scholars and the community. More and more, people are recognizing my work through that platform, coming up to me at conferences and telling me that they follow me or by sending me a direct message with an idea for collaboration.

It’s a big part of what is taking me back to Norway, after getting me there for the first time in 2017. My colleague and friend Ingelin Testad, the director of the Centre, and I have collaborated for several years now on manuscripts and symposia. But on this trip, she specifically wants me to work with her and her colleagues on these aspects of engaged scholarship because she has observed the impact this approach has had for myself and others.

So how does one get started if engaged scholarship sounds like a good idea or worth pursuing? During the colloquium earlier this month, my colleagues and I asked our students to think about what it is they wanted to say about their scholarship and how they wanted to say it. Sounds simple, but it is easy to get sidetracked in a digital world. Find platforms and outlets that work for you. I like Twitter and get a lot out of it. Others prefer to write editorials or do a podcast. My colleague Carole does all three.

Regardless of the medium, one must have a clear goal in mind. I use Twitter to engage with folks interested in the care of older adults. I like Twitter because the platform allows me to foster that engagement with academics, clinicians, advocates, and people in the community. Twitter is one way that I can share the what, how, and why of what I do in my professional life with more people than I would ever encounter at a research conference, community event, or through a paper that I publish in a journal. But I still do all of those other, more traditional things. My presence on Twitter and blogs is an enhancement and adjunct to those more common outlets and metrics.

How do you keep from tumbling down the rabbit hole? I suggest that people can simply set a timer. The Pomodoro Method is a great way of managing your time and is a strategy that works for some people. As with any strategy, it only works if it works for you. Too often, I think that we find ourselves giving up when trying to implement some ideal strategy or method because it really doesn’t fit our personality or circumstance.

The same can be said for the ways in which I approach engaged scholarship. My methods and media are not for everyone, and that’s okay. I get a lot out of it and not just international travel. The level of engagement is what is truly important to me. When a caregiver tells me that my editorial made them feel seen or when a fellow scholar reaches out online to let me know they appreciated a resource I shared, I feel like I am making a difference. It’s a humbling and rewarding experience.

An Evening with the Queen of Soul

It was the evening of June 4, 2000. My mother and I were sat in the War Memorial Auditorium in Greensboro, North Carolina. Like everyone else is the packed auditorium, we were awaiting the appearance and performance of Aretha Franklin. The level of anticipation was palpable and every time it appeared as if someone was about to walk on stage, my mother would eagerly move to the edge of her seat.

That June was my parents’ 25thwedding anniversary. As a gift, I had offered to take them to see Aretha in concert. Only my mother took me up on the offer, and so it became another one of those outings that was just the two of us. Looking back on it now, I’m so grateful to have been able to be part of this experience with her, and to have been able to provide such a gift.

When Aretha did finally step onto the stage, the ground was already on its feet. At the first glimpse of the Queen, my mother gasped and held her breath for what seemed like the entire opening number. I will never forget the look on my mother’s face as the Queen of Soul proved beyond a shadow of a doubt why she, and only she, held that title.

I’ve been thinking about that evening a lot over the past week or so when the news first broke that Aretha was gravely ill. It’s an odd thing, I think, when a celebrity or artist dies. It’s strange in that this person has been present in your life, in way or another, yet was not a part of your life at all in the traditional sense. It’s only in those moments of performance, like the concert, during which your paths actually cross.

Yet Aretha sang and was a part of our country’s history. The fact that one can simply use her first name without confusion or lack of awareness by anyone is testament, I think to her impact on our culture. Few have a voice so powerful, so expansive, and so indescribably wonderful.

It’s interesting to me how she not only sang our country’s history, but also our personal histories. Playing her music conjures up specific memories for me, from heartbreaks to triumphs. Funny how those songs instantly transport me across time and space to a particular situation or set of emotions. A wealth of memories is accessed, most poignant and some bittersweet.

And since her death a few days ago, her songbook has been playing on a loop in my head. I am at once taken on a trip down memory lane while simultaneously marveling at her vocal prowess. I turn over the lyrics, notes, and memories in my head and marvel at the ability of our brains to process all of this information simultaneously.

And I marvel at the legacy of a woman, an artist, who touched the lives of so many.


What I want you to know about Kathy

IMG_0163Today would have been my mother’s 60th birthday.

It’s funny how those years that end in a zero always feel like milestones for some reason.

It would have been her birthday because she died almost seven years ago from breast cancer. It’s weird how her death can feel like yesterday and a lifetime ago all at the same time. I think about her daily, but as her birthday as drawn closer, she’s been in my thoughts throughout the day more than other times of the year. Given the milestone nature of her birthday, I’ve been thinking about other milestones in her life and my own. And I’ve been thinking about her legacy. I know that my dad, brothers, and I carry that forward. At this point, if you never met her, then the only way for you to know her is through one of us.

My dad said to someone recently at my uncle’s funeral that everything that is good about my brothers and me comes from my mom. I think he’s half right because I know that I share qualities from both of my parents, who also share similar qualities with each other. But I do believe that some of my best qualities do come from her, and those are things that I hope people learn about her through me.

So, what is that I want you to know about Kathy?

For starters, she had a great sense of humor and smiled and laughed a lot. She was sassy and mischievous. She was smart and well-organized, with a strong work ethic. She was a self-starter who liked to get the job done. Oftentimes, she wanted to do it herself because Kathy liked things a certain way. These are all qualities I believe we share.

But what I really want you to know about my mother is her compassion. She loved her family fiercely and was what some might consider tenderhearted. She was kind, empathetic, and loyal to family, friends, and neighbors. She cared, she really cared. And she made you feel like she cared. You knew it. My hope is that my compassion is felt and known in the same way. And she was strong, in ways we never understood until she was gone. She wasn’t perfect because no one is. But I know she was as perfect as she could be. She wanted to be a good mother and she tried her best, even if there were times when she or I felt that she missed the mark.

I remember once asking her what she had really wanted to be as an adult given that she didn’t go to college and completed vocational courses in high school related to secretarial and office management work (which she excelled at). As a budding scientist and undergraduate student at the time, I couldn’t believe that what she was doing was what the dream had actually been. But I was wrong because it was. She told me she took the courses in high school because she really liked them and that what she really wanted to be—what she had always wanted to be—was a good mother.

As with me, her characteristic compassion and empathy was a double-edged sword. It makes you vulnerable because you feel. And when you feel, you can feel the good and bad. I think that sometimes that level of emotional intensity can magnify things, at least it can for me. What I mean to say is that she was self-effacing and, at times, self-deprecating. For example, I don’t believe she would describe herself as smart because few people ever told her that she was or made her feel that way. And I understand that aspect of her, too. It’s another quality that we share. I feel fortunate that through my education and life experiences, I’ve learned skills to help me in reframing those kinds of things when I get discouraged. And sometimes that is a skill you have to hone and practice often. As an aside I find it ironic that the kid who grew up often wondering if he was “good enough” ended up in a career in which peer review of one’s work is required. But I digress.

She was also unapologetically herself and authentic. She was, as we would say in the hills of Grayson County, just natural. She was just Kathy. Actually, it was about the time that she reached my current age that I really noticed this quality in her really coming to the fore, as evidenced by her adopting the nickname Special K around that time.

I guess what I’m trying to say is that I hope that all of the things I got from her, that I learned from her, shine through in some way into the present. And I’ll tell you why.

Someone recently made an error in judgment and said to me, “oh, that’s right. You don’t have a mother.” I know this person meant no harm and it’s not the first time someone has said something like this to me in the past seven years. But I don’t like it. I don’t like it because I don’t believe it is accurate. I do have a mother, a great mother. Just because she’s no longer living doesn’t mean that I don’t have a mother. It feels like negating her existence.

So, it’s important to me that people know her through me—through my work, my actions, the way in which I approach my life. I don’t want to live in her shadow or do things only to suit what I think she might have wanted. But I do want people to have some inkling of who she was because if you never met her, then you missed out on someone amazing.

Between compassion and fear

This may be rambling, but bear with me.

Days after the election in November, I was sitting on the ground in protest with students, faculty, and staff at the University of Tennessee. Our voices cried out for equality, equity, and compassion in the face of the fear, hatred, and negativity that had pervaded the election cycle and ushered in its results. I had reminded myself then to use my voice to resist, persist, and stand up for the vulnerable. My privilege as a White, cisgender male allows me a seat at the table. My life experience, particularly as a gay man, informs my position while seated at that table.

But days like today give me pause and I find myself searching for words. Last night, I stayed up into the wee hours watching events unfold in Charlottesville, Virginia, a place I recently called home. While some on social media spoke of being shocked by what was and is occurring, shock is not a reaction I’ve had. I’ve lived in the South my whole life and I know this type of fear and hatred exists here and elsewhere. What is different in my perception now are the signal boosters of the fear, in this country and globally.

I was in the United Kingdom when the terrorist attack happened at London Bridge, traveling to London the day after. Then as now, I find myself very introspective and processing all that I’m feeling—sadness, anger, frustration, puzzlement, and wanting. And then as now, I find myself in a place of safety and quiet, in meditation and thought of how to use what I have—my voice, my skills, my position—to better the situation.

My training as a Certified Healing Touch Practitioner helps tremendously in having a measured response and keeping my outrage in check. It allows me to practice my compassion and offers me insight into the numerous ways in which I can do that on a daily basis. Still, I find my mind racing a bit—going through memories, thoughts, and ideas at lightning speed in an effort to find a solution, an action, a task.

I’ve thought about the times that I’ve stood where the events in Charlottesville are now happening. Specifically, the times I’ve stood on those very spots at rallies for peace, equality, and equity, and vigils of remembrance.

I’ve thought about the students who came to me for support during times of fear when I was a member of the faculty at the University of Virginia—students who were wrestling with their own responses to fear and hate.

I’ve thought about what it is like to be on the receiving end of that fear and hate myself, particularly during my teenage years when I faced verbal and physical harassment daily because of my sexual orientation.

And I’ve thought of the words of others.

Like Dr. Martin Luther King, Jr., who said, “Nothing in the world is more dangerous than sincere ignorance and conscientious stupidity.”

Like Garrison Keillor, who wrote

Gentleness is everywhere in daily life, a sign that faith rules through ordinary things: through cooking and small talk, through storytelling, making love, fishing, tending animals and sweet corn and flowers, through sports, music and books, raising kids—all the places where the gravy soaks in and grace shines through. Even in a time of elephantine vanity and greed, one never has to look far to see the campfires of gentle people.

Like Fannie Lou Hamer, who said, “You can pray until you faint, but unless you get up and try to do something, God is not going to put it in your lap.”

Like Maya Angelou, who said about hate that “it has caused a lot of problems in this world, but it has not solved one yet.”

Like Meryl Streep, who said, “Disrespect invites disrespect. Violence incites violence. When the powerful use their position to bully others, we all lose.”

Or Bob Marley, who said, “You never know how strong you are until being strong is your only choice.”

I know that the most important thing I can do is to continue to choose compassion over fear. For me, it really isn’t that much of choice. But I also know that compassion does not equate with complacency or silence. I will continue to use my voice, my skills, my resources, and my heart to do what I can when I can for as long as I can to strive for and speak up for compassion, peace, dignity, and equity.

And to think that it started with IFNC13

As an academic with a nine-month appointment, there is sometimes a perception that I have the summer off. And while I do have more flexibility in my schedule during the summer and can work at a more relaxed pace, I’m usually working most of the time. It’s the nature of scholarship; it doesn’t stop just because it’s summer.

But summer does afford me the opportunity to take advantage of opportunities that might not fit within the confines of the academic year, particularly travel abroad. I’ve always enjoyed traveling abroad. I remember the excitement and awe on that first trip to France while in high school. So many things were new and different. As I’ve aged, formed a cadre of international colleagues and friends, and traveled more internationally, I now tend to focus more on the similarities across cultures rather than the differences. But I digress.

My calendar had had IFNC13 in Pamplona marked in June 2017 for two years since leaving IFNC12 in Odense, Denmark, which I’ve written about here. It was an event I, and many others, had been looking forward to for quite some time. After a pre-conference workshop proposal put forth by my IFNA Communications Committee colleagues and I was accepted, planning for the trip could begin in earnest. My goal was to engage in the conference, visit friends and colleagues in the UK, and have a day or two for something touristy.

First, I reached out to my colleague Siobhan O’Dwyer at the University of Exeter. She and I had already formed an ongoing research collaboration and I proposed stopping there either on my to or way back from Spain to connect and work. I knew that I wanted to visit friends in the UK who I had not seen in four years, so it would be feasible. Schedules and funding aligned and plans for a week as a visiting academic fellow were put into place. However, given the complexities of our schedules, there was a one-week gap between my time in Exeter and IFNC13. At first I thought I would spend that time vacationing. But then I casually mentioned these plans to my colleague Ingelin Testad at the University of Stavanger in Norway.

“Come to Norway!” she said. Her center was having its annual regional conference the very week that was empty on my calendar. I could present at the conference and participate in an international research collaborative meeting bringing together scholars from the UK and Norway and, now, the US. It all just fell into place in the most brilliant fashion.

There are worse things than to spend three weeks in Europe for work. Coming from the Appalachian mountains of Virginia and humble beginnings, I’m always cognizant of and grateful for the wonderful opportunities that my career affords me. In this instance, I was keenly aware of this. I recalled a career bucket list I had sketched out in 2012 after accepting my first faculty position at the University of Virginia. One of those items was to be an international visiting academic fellow, in the UK. Not only was that now happening, it was happening along with these other amazing opportunities. And the best part was that it was happening with fabulous colleagues and friends.

My time in Exeter was brilliant and bookended with weekends at my friends’ home in Bristol. This was my fourth trip to the UK and it is increasingly feeling like a satellite home base. Norway was a country on my personal travel bucket list and it did not disappoint. Spain, too, was on that travel list and was another amazing experience, with IFNC13 the impetus behind the whole journey.

What I like most about IFNA, having experienced the biennial conference now twice, is the level of genuine collegiality and respect for the work done by those in attendance. With roughly 30 countries represented from all corners of the globe, it truly lives up to its name. It was great to share the stage with my IFNA Communications Committee colleagues during our social media preconference workshop, as well as to be at the conference with my colleague Sue McLennon from the University of Tennessee. The conference was a fine close to a great scholarly adventure that expanded my work in the use of social media by persons with dementia and their families, as well as expanding my network of collaborators, colleagues, and friends. Additionally, the whole experience enriched my understanding of our world, filled my heart and mind with beautiful memories, and was just the “summer break” I needed.


The Next Harmonic-Activism and Alignment

The following is a reprint of the letter from the editor of the 2017 first quarter edition of Perspectives in Healing. It was written by the Executive Director of Healing Beyond Borders, Lisa Anselme, who is an inspiring colleague and friend. It has been published here with her permission. When I first read it, Lisa so eloquently captured many of my thoughts and feelings in the current climate, that I wanted to share her writing here.

While preparing for the January 21st Women’s March on Denver, in solidarity with the Women’s March on Washington, DC, I had no idea that more than 200,000 women, men and children would peaceably march through Denver, singing, holding signs and gathering, or that marches would be held in cities throughout the world on all seven continents. As I spoke to others about this march, the question arose as to why I was marching; it seemed an important question to answer and caused me to consider how my core beliefs and values—that all beings and our planet deserve our respect, equality, dignity and justice—have been honed and established. My core beliefs aligned with the mission and vision of the march, that “we are all relevant, we are all valued and we are more powerful together,” 1 and were ultimately inspiring me to listen to the clarion call to action within my own heart’s song.

Setting the Political Core in the Land of Lincoln – Equal Rights and Liberty

Historians tend to portray the 1950s as a decade of prosperity, conformity and consensus; the 1960s as a decade of turbulence, protest and disillusionment;2 and the 1970s as a “pivot of change” in world history with feminism, civil rights for African Americans and Native Americans, Gay Rights and anti-war and environmental movements. I have to consider the irony and symbolism of being born in a city named “Freeport,” in Northern Illinois, known as the “Land of Lincoln,” and growing up in a time spanning these three decades.

We were surrounded and greatly influenced by the legacy of United States’ 16th President Abraham Lincoln, known as “Honest Abe,” consistently ranked by scholars and the public as one of the top U.S. presidents.3 Lincoln, a self taught lawyer, passed the bar exam and practiced law in Springfield, Illinois and was elected to the Illinois House of Representatives (1834–1842). In 1854, he became a strong opponent of the expansion of slavery and a leader in building the new Republican Party. Following seven highly publicized debates in Illinois with opponent Democrat and Populist Stephen A. Douglas (the second debate was held in my birth town, which is replete with a marker and statue), Lincoln lost the election to the U.S. Senate. In 1860, however, he won the Republican Party nomination and, by appealing to and gaining the confidence and support of the American people with his powers of oratory, won the U.S. Presidential election (by both popular and Electoral College votes). The majority of the Southern slave states were publicly threatening to leave the U.S. Union if the Republicans, perceived at the time as the anti-slavery party, won the presidency. Lincoln’s election prompted seven Southern slave states to secede from the Union and form the Confederate States of America (Confederacy), naming Jefferson Davis of Mississippi as their president, even before President Lincoln had moved into the White House. Known as a “Moderate Republican,” Lincoln was faced with confronting both “Radical Republicans” and “War Democrats” who demanded harsher treatment of the South, anti-war Democrats called “Copperheads” who despised him and “Southern Secessionists” who reportedly and consistently plotted his assassination. 4, 5, 6

On April 12, 1861, an attack by Confederate artillery on Federal Fort Sumter in Charleston Harbor initiated the American Civil War, known as the War Between the States. On January 1, 1863, President Lincoln issued a controversial executive order, the Emancipation Proclamation that proclaimed the freedom of slaves in ten states that were in open rebellion to the Union.7 (The President had war powers authority only to suppress rebellion, thus only those states were targeted.) Following the battle of Gettysburg, Lincoln delivered the Gettysburg Address in November of 1863, which is now inscribed upon the Lincoln Memorial and became an “iconic endorsement for the principles of nationalism, republicanism, equal rights, liberty and democracy.”8

Four years after the start of the Civil War, General Robert E. Lee of the Confederate army surrendered only his army to Union General Ulysses S. Grant on April 9, 1865, initiating a line of subsequent surrenders that occurred over the next 16 months, even as President Lincoln, now into his second term of office, was promoting a moderate view of Reconstruction and reuniting of the nation. Five days later, on April 14, 1865, Lincoln was assassinated by a purported Confederate sympathizer; Vice President Andrew Johnson became acting president. On August 20, 1866, President Johnson issued Proclamation 157, announcing the end of the American Civil War, “Declaring that Peace, Order, Tranquility, and Civil Authority Now Exists in and Throughout the Whole of the United States of America.” 9

Political historian Thomas A. Bailey of Stanford University wrote that Lincoln was “undeniably a great man…in spirit, in humility, in humanity, in magnanimity, in patience, in Christ-like charity, in capacity for growth, in political instincts, in holding together a discordant political following, in interpreting and leading public opinion and in seizing with bulldog grip the essential idea of preserving the Union.”10

The loss of human lives and subsequent impact of emotional trauma upon this nation from this War Between the States was and remains enormous. The divisions of beliefs and perspectives have once again emerged to challenge our nation. Of note is that a newly estimated death toll of Union and Confederate soldiers by David Hacker, a demographic historian from Binghamton University in New York, has now been recalculated and increased from 620,000 to 750,000.11

Setting the Spiritual Core with the Brethren

My core spiritual training was established by happenstance and perhaps good fortune. My mother, a Methodist, and my father, an agnostic who erroneously called himself an atheist and often commented that he could not abide hypocritical persons of faith who did not practice what they preached, offered a diverse view of a power higher than myself. They became members of a small Church of the Brethren through a neighbor’s invitation; their participation in this church was as much for socialization and community as it was for any faith belief.

I liked this church—the parishioners grooved on Jesus and the New Testament—and was baptized in this church following a year of catechism. The Brethren believe in full submersion baptism and evangelism through the personal practice and action of performing good deeds in the greater world community and through non-confrontational witnessing. Brethren are committed to pacifism and nonviolent resolution of conflict, expressed through antiwar and peace efforts around the world, as well as through refusal to engage in voluntary or mandatory military service. Brethren were imprisoned for these refusals; however, some Brethren did serve as chaplains or medics. One of the three designated historic peace churches, which also includes the Quakers and the Mennonites, they believe strongly in community; are very involved in disaster relief and other charitable works; believe in peaceful resolution whether in relationships, international conflicts or treatment of citizens and prisoners;12 and often describe themselves by what they do through their service rather than by what they believe.

This church was a touch point during the era of the Vietnam War and corresponding protests. A church friend’s son registered as a conscientious objector and many questioned his sincerity, believing he was simply being a coward and a draft dodger. I couldn’t vouch for the young man’s motivations or patriotism, yet believed there was validity in questioning the rightness of war and, in particular, that war. As a teenager, questioning that war was not a popular position among the greater public at that time.

A number of us were also active in the Young Women’s Christian Association (YWCA), described as the oldest and largest multicultural women’s organization in the world. It has been at the fore and a pioneer of “most major movements within the U.S. in race relations, labor union representation and the empowerment of women and diversity, and works to create opportunities for women’s growth, leadership and power in order to attain a common vision: peace, justice, freedom and dignity for all people.”13 I had the wonderful privilege to attend conferences for civil rights and share deep friendships under the guidance of a great youth director. Indeed, somewhere in an old storage box is a Quad City Times front page picture of myself and other teens holding protest signs as a small number of us marched to protest racism following a Midwest YWCA conference on race relations and discrimination.

Setting the Educational Core – Justice and Civil Rights

Activism, humanitarianism and justice were part of this volatile era and expressed in our high school student council activities, including our initiation of an all school assembly to the 1500 plus racially mixed students in which we examined and educated ourselves about the issue of racism. A number of fellow students on this council went on to become highly respected attorneys, judges and mediators. A number of us went on to become health care professionals. I would go so far as to say that service and justice was infused into our blood.

In college in the 70s, when taking respite from pre-med and science courses, my mental escape was through the arts and humanities via music, philosophy and psychology courses. Courses such as “Feminist Criticism of the Bible” and ones that explored alternate states of reality with readings from authors such as anthropologist Carlos Castaneda, challenged fixed ideas about both the visible and unseen world. Thanks to this background exposure and several dear friends who thought I would make a “good nurse,” transferring majors to the nursing profession offered the necessary mix of art and science, humanitarianism and service that captured my passion and engagement. Later studies in holism and other Eastern spiritual traditions caused me to stretch beyond the seemingly apparent differences in these conceptual frameworks into a much broader world view—one in which all spiritual traditions ultimately appeared designed to move humanity towards loving and caring for one another.

One teacher along the way shared the belief that structured religion and group membership afforded us the opportunity to learn discipline and obedience, whereas spirituality afforded us the opportunity to establish a direct line to an expression of Source within ourselves, all beings and the cosmos. These studies and the practice of nursing ultimately led me into the world of energy healing and a deep dive into the study of ethics and its interplay with a humane, conscious and energetic world.

The Next Harmonic

In returning to the question of why I marched, it has became apparent that there was a rich exposure given to me of other viewpoints, role models and teachers who demanded that I consider the well being of not only myself, but others. I marched for them, for her, for him, for my brothers and sisters, for the ancestors, for the four-leggeds, for the water beings, for the water, for the skies, for the winged ones and for the earth. I marched as a mother, a healer, a nurse, a daughter, a sister, a woman, a human being, a Christian, a Buddhist, a respecter of all religions, a light worker, a steward of this planet, a world citizen, and an advocate for compassion and unconditional love.

I marched to blend my voice in song with the diverse and vibrant voices of others around the globe, to uplift and support human rights, equality and social justice. I marched toward the creation of the Next Harmonic.

  3. org/feature/americas-greatest-president-abraham-lincoln-12957
  11. Gugliotta, G. (4/2/2012) New Estimate Raises Civil War Death Toll New York Times

You can follow Lisa on Twitter at @Lisa_Anselme and can learn more about Healing Beyond Borders here.

What keeps me up at night

I’ve had a few sleepless nights over the past few months since the U.S. election in November. As the inauguration looms, one of the things that has kept me up at night, and is directly related to my career and scholarly work, is the fate of the Affordable Care Act (ACA).

Known by most as Obamacare, the ACA has changed the way in which millions of Americans approach their health care. Indeed, it has allowed millions of Americans even to have access to health care. And while it is not perfect, by the measures we have (which also are not perfect) the ACA has had a positive effect on the health of the nation. Opponents will disagree and deride it. But the numbers we have speak volumes, as do the stories of patients. I find value in both the numbers and the stories; however, I find meaning in the stories, in particular the story of my family.

My father has insurance because of the ACA. He had a pre-existing condition when he signed up, but was able to get coverage anyway. Unfortunately, a few more chronic conditions have been diagnosed since he signed up. But these haven’t prevented him from coverage either. Neither did these conditions increase his premiums. The coverage, though, is what is essential. Without it, the routine care he needs to maintain surveillance of these conditions would be limited, or potentially erased. He’s not old enough for Medicare and doesn’t qualify for Medicaid. Some might say things like “why doesn’t he get insurance through his employer?” Well, he works for a local small business owner who doesn’t offer those kinds of benefits. And, well, it’s more complicated than that, as life usually is.

My mother died unexpectedly five and half years ago. She lost her job and with it went my parents’ health insurance. We thought the stress of searching for a new job and other caregiving burdens was why she started losing weight. But it wasn’t the stress. In July 2011, she was diagnosed with stage IV breast cancer. Twenty-fours after receiving that diagnosis, she went into cardiac arrest. Twelve hours after that she died. She was 53.

She had found a lump in her breast before that, “a couple of years” she said after the diagnosis. She made the decision not to seek care and not to tell us. We never had the chance to discuss those decisions, but my gut tells me that the reasons centered around access to care. Granted, six months earlier, she had health insurance and had had it for several years. But she hadn’t always had it. Having lived and worked her whole life in the Appalachian region of the country, health insurance was not a given when you had a job, if you had job. Most of my youth, we didn’t have health insurance. I can remember trips to the pediatrician where she would have to speak to the office manager in hushed tones about the account and the bill before my brothers and I could be seen. Basically, we went to the doctor only if we were really sick because we couldn’t afford it.

If you go most, if not all of your life, without preventative care and routine access to health care, how can you develop a wellness mindset? Or a good level of health literacy? Without that knowledge and those skills, it’s difficult to be sold on the idea of routine health care and wellness. And with no insurance to cover it, health care becomes something you seek only when the situation is dire, or too late. It is my belief that these are the factors that led my mother to her decision. In my opinion, my mother’s death was the result of a lack of access to care, something that should not be plaguing citizens of the richest nation in the world.

It’s very easy for our political leaders and opponents potentially to lay the blame at the feet of individuals, saying things like they should be working hard or doing things on their own. Why, they’re entrepreneurs and self-starters, and no one ever gave them a handout. These sorts of statements make my blood boil, for a variety of reasons.

I am one generation removed from extreme poverty, my father having grown up in a house with no running water and cracks in the roof that let in the snow during winter. My family has worked, hard, for as long as any of us alive can remember. They have always succeeded in providing the basics. Health care wasn’t seen as a basic necessity. Again, I think that stems from the level of health literacy, which is related to access to care.

But mostly these unfeeling statements infuriate me because I am the one who was sitting there holding my mother’s hand when she went into cardiac arrest. I am the one who collapsed, crying and screaming in the hallway of the hospital while the crash team did their best to revive her. And I am the one who was left wailing and in tears, on my knees next to her bedside after she had died, never wanting to leave her there in the ICU. Because I am the one who knew it could all have been different. Part of my grief has been in the fact that I am a health sciences researcher, with knowledge of cancer care, and that didn’t matter. What mattered was the access to care. What mattered was the monetary cost, a measure that doesn’t even begin to address the true cost.

I hope as the debate continues regarding the ACA and as members of Congress make their decisions that they will hear more of these stories–-stories like my family’s and those of countless others.

In the end, this debate, like so many others, isn’t about right or left; it’s about right or wrong.