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.

Advertisements
Posted in Uncategorized | Leave a comment

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.

 

Posted in Uncategorized | Leave a comment

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.

  1. marchoncolorado.org/home/missionstatement
  2. apstudynotes.org/us-history/sample-essays/the-50s-and-60s-decades-of-prosperity/
  3. org/feature/americas-greatest-president-abraham-lincoln-12957
  4. biography.com/people/abraham-lincoln-9382540#synopsis
  5. history.com/topics/us-presidents/abraham-lincoln
  6. historynet.com/abraham-lincoln
  7. history.com/topics/american-civil-war/emancipation-proclamation
  8. loc.gov/exhibits/gettysburg-address/ext/trans-nicolay-copy.html
  9. archives.gov/id/19027428
  10. http://civilwartalk.com/threads/americas-greatest-president.113900/
  11. Gugliotta, G. (4/2/2012) New Estimate Raises Civil War Death Toll New York Times
  12. brethren.org
  13. ywca.org/site/c.cuIRJ7NTKrLaG/b.9360173/k.1089/YWCAEliminating_Racism_Empowering_Women.htm

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

Posted in Uncategorized | 1 Comment

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.

Posted in Uncategorized | Leave a comment

Compassion and dignity

I spent weeks searching online for the best butterscotch cream pie recipe I could find. My great-grandmother was joining us for Thanksgiving dinner and I wanted to make the pie in her honor. Granny had spent much of the past year in a skilled nursing facility because of a fall that had left her with a fractured hip and had left my grandmother—her daughter and caregiver—at a breaking point. Her dementia was progressing rapidly and at the time of the hip fracture my grandmother was increasingly unable to cope with the demands of being a family caregiver, particularly given her own health issues.

A good deal of my passion for caregiving came from spending many summers in Granny’s care. Caregiving was her area of expertise and food was a way in which she carried out that task. Pies, especially butterscotch, featured among the many dishes that she provided generations of my family for decades. So, if she was coming dinner, I wanted her to have butterscotch cream pie. It had been several weeks since I had spent time with Granny and I was looking forward to seeing her and having her enjoy the pie I had made just for her.

The woman who was pushed into the dining room in a wheelchair that Thursday in November was not the Granny I knew or the one I had spent time with just several weeks before. And, owing to the progression of her disease, I was a complete stranger to her, so much so that she recoiled from my touch. During dinner, I sat across the dining room table and watched her as she sat in silence, looking lost, bewildered, and angry to be thrust into a large gathering of people she didn’t know or recognize. And the pie? The pie went uneaten. What I had planned—my expectations—didn’t materialize and was replaced by a greater sense of loss. Our matriarch was disappearing right in front of us.

More than a decade later, this experience of witnessing my great-grandmother living with dementia and the ways in which my family dealt with this process drives my research program. I spend my days searching for strategies and tools for symptom management and caregiver support in dementia, as well as exploring the impact providing care for a loved one with dementia can have on families and individuals. While my family’s journey with this disease was unique in that it was ours, it is part of the larger context of family caregiving and the overarching themes are similar. This complicated process is heightened during holidays, and issues around food and eating take center stage during Thanksgiving.

In my work, family caregivers have shared stories of their own experiences navigating the ever-changing landscape of their loved one’s disease process. Though my colleagues and I continue to explore these complex issues and search for solutions in our research, no magic bullet has been discovered. However, one basic idea stands out for me and may be helpful. As with so many arenas in life, approaching your loved one with dementia with compassion and dignity is key. While this can be difficult during a disease process that seems to rob a family incrementally of someone they hold dear, we as human beings need compassion and dignity in our lives.

When we approach someone with compassion and dignity, we give ourselves permission to make mistakes and realize that one size does not fit all. Assumptions about what your loved one with dementia can or cannot do, or will or will not want, most likely will lead to frustration and disappointment—for you and for them. I baked a pie anticipating that Granny would enjoy it. Those were my expectations, not hers. Perhaps had we taken the time as a family to discuss how we might incorporate her into the Thanksgiving holiday as more than merely a dinner guest, the results might have been different. At the very least, we would have been approaching the situation with a bit more compassion and offering her a lot more dignity. Caregivers in my research speak of the modifications and changes they realize they must make, through trial and error, to offer their loved ones the best.

While it may sound simplistic and trite, dignity and compassion are the key components of dementia care in my opinion. Though these concepts alone cannot solve all of the issues related to caring for a loved one dementia, I can think of no better place to start. Sometimes the best answers to complicated questions are the most simple—as simple as pie.

 

Posted in Uncategorized | Leave a comment