COVID: The Sequel

Mass vaccination and adjusted social behavior may finally get the pandemic under control. Then the medical world will have to turn its attention to the next chapter — millions of people suffering from long-haul COVID

As the pandemic took hold in the United States in March 2020, Caroline, a healthy, athletic woman in her late 20s, began to feel unwell. There was no COVID-19 test to be had at that point, but she called her clinicians to describe mild to moderate symptoms such as fever, respiratory difficulty, gastro-intestinal irritation, and loss of taste and smell — which came and went, and not all at the same time.

Caroline’s clinicians diagnosed her remotely as having COVID.

The fever, the teeth chattering, and the gastro symptoms went away — but not the fatigue, the body pains, or the neurocognitive symptoms, including sleep disturbance. Ten days later, 20 days later, a month later, she still hadn’t fully recovered.

Finally, eight months or so after the onset, Caroline had a COVID test, but it was negative, and an antibody test showed no antibodies. And without a positive test or antibodies in her system, she has found it difficult to find someone to treat or manage her condition. Most clinicians tell her that her persistent symptoms might or might not be COVID. And some say things like, “I have no idea what to tell you,” or “Are you sure this isn’t stress?”

Dan, in his late 30s, is a care provider for diagnosed COVID patients and their families. For a while, he continued to test negative, but began having symptoms about eight months ago. He was never hospitalized, and never had a positive test, without which the clinician who was seeing him would not diagnose him, in spite of all of the clinical indicators.

Dan still suffers from many long-term symptoms; his new clinician is helping him put together a team of specialists to develop and manage his treatment.

Caroline and Dan appear to suffer from what has come to be known as “long-haul COVID,” in which some manifestations of their illness just don’t go away, with symptoms sometimes mimicking those of other types of chronic illness.

Kenneth J. Friedman, PhD

In fact, more prior investment in chronic illnesses, and a better understanding of how they work, could have helped us to prepare for long-haul COVID, says Ken Friedman, Ph.D., a retired professor of pharmacology and physiology and a longtime researcher of chronic conditions.* Instead, the medical establishment in the United States has been slow to recognize and research chronic illness, and soon will pay the price: dealing with an onslaught of as many as 9 million long-haul COVID cases in the coming years in the United States alone, based on Friedman’s statistical analysis of recorded COVID cases.

Patricia Fennell, MSW, LCSW-R, a researcher and clinician who has been researching and treating chronic illness for more than 30 years, agrees with Friedman’s assessment. “The medical establishment,” she says, “has been slow to recognize the need for specific treatment approaches for the chronically ill, and to integrate them into their medical education curricula. And from what I can already see in requests for treatment of long-haul COVID, we are not prepared for what’s coming.”

So far, Friedman warns, “we have not seen a response proportional to the severity of the crisis that is about to befall us.”

* * * * * *

Friedman, a Brooklyn native, has a combined degree in biology and chemistry from Lawrence College in Appleton, Wisc., and a Ph.D. from the State University of New York at Stony Brook.  He was a NIH Postdoctoral Fellow at UCLA before becoming a Staff Fellow at the National Institutes of Health.  He became an Associate Professor at New Jersey Medical School in Newark.  Friedman had decided he didn’t want to be a medical doctor — “I really didn’t like the sight of blood” — and was more interested in helping people through research.

One day, his desire to help people hit close to home and forever changed the trajectory of his research career.

Someone close to Friedman, an academic standout, had been admitted to a major university. After a few months at college, she became very ill, and explained her symptoms to Friedman. “I said, ‘You have mono. Go to student health services. Mono is very common in college students. They’ll know what to do'.” The student health service misdiagnosed the patient and sent her back to her dorm room.  Eventually, the young patient needed to be rescued from that dorm room.

In the months that followed, the patient tried but was unable to be diagnosed through traditional channels.  Friedman stepped in and persuaded the clinical faculty of his own medical school to examine and diagnose her.  Unfortunately, those physicians too were perplexed and unable to render a diagnosis.

At Friedman’s suggestions, despite not having a confirmed diagnosis, treatments aimed at alleviating symptoms were tried. Eventually, the patient regained sufficient health to, in an extended timeframe, complete college and become employed.  Full health, however, was never fully restored, and eventually the patient became housebound.

“Having a chronic illness,” Friedman says, “is life-changing not only for the patient, but for the family. My initial objective was to cure her. And that was based upon the belief that this was a disease like any other disease,” caused by an infectious agent, “and therefore cured by the removal of that infectious agent.”

“And that belief was based on what was written in the medical literature. But the medical literature was wrong.”

According to Friedman, Long COVID demonstrates that ME/CFS, Chronic Lyme disease, and other chronic, fatiguing illnesses which occur after a significant infection, exhibit similar symptoms and should be classified as belonging to a category of disease which he and colleagues have named PAPIS (Post Active Phase of Infection Syndromes).  He and his colleagues have established an ongoing collection of research articles in the journal Healthcare to promote the publication of research articles on the subject of PAPIS. “Some 90 years after the U.S. Public Health Service first described ME/CFS as a ‘polio-like’ illness, people are beginning to understand what that means!” 

* * * * * *

“For many doctors, the strange symptomology of long-haul Covid calls to mind another mysterious, poorly understood condition: myalgic encephalomyelitis, more familiarly known as chronic fatigue syndrome,” wrote Moises Velasquez-Manoffin in a January 21 New York Times article titled “What If You Never Get Better From COVID-19?”

Velasquez-Manoff went on to point out that “ME/CFS-like syndromes have been linked with infections for more than a century — including, most recently, those caused by the viruses responsible for the SARS and H1N1 pandemics in 2003 and 2009.”

And according to Fennell, there is growing evidence that COVID-19 already has ignited a public-health crisis that will persist long after vaccinations help us reach “herd immunity” and many of us put our masks away. “We are getting increasing numbers of requests from medical professionals who either have personally suffered COVID with the long-term symptoms themselves, or their family members have,” Fennell says. “We are also getting requests for consultation from physicians who are overwhelmed by the emotional burden of caring for COVID-19 patients. Some of these clinicians are traumatized from the care they are providing, and are suffering long-term after-effects themselves, which is part of the larger, expanding public health issue of COVID-19.”

In addition to SARS and H1N1, Friedman says, there are “post-acute infectious syndromes” associated with many infectious diseases, among them, mononucleosis, Ebola virus disease, and Lyme disease.

But some of the early research into long-haul COVID and its treatment has not taken past research into account. “What they have done,” Friedman says, “is they have ignored the relevant data of other diseases. Why aren’t we looking at these all together?”

Friedman and some other researchers contend that where symptoms of long COVID are similar to those in patients suffering chronic illness in the post-acute phase of any of these diseases, treatments previously developed for those diseases may be effective for long COVID.

“Obviously we want to learn as much as we can about each new infectious disease,” Friedman says, “but in the meantime, treatments have been developed for symptoms which are similar across the spectrum. Why not apply what we already know, and consider how the diseases may be similar?”

“Diseases tend to be viewed as silos,” he continues, “as unique symptoms that have to be treated as no other disease is treated. The treatment is only effective for that one disease and does not apply to any others. That is not true.”

“The body does not care what the infective agent is.”

He offers the analogy that the body has a finite playbook of responses for infection, and it will employ those responses to the best of its ability to overcome the infection.

But, Friedman says, in long-haul COVID — as in ME/CFS — the body’s response is “overblown.”

“The plays in the playbook are not perfect. And some of those plays can do damage. Where medicine comes in, is that sometimes the physician can control the plays in the playbook so that they do not do damage.”

The failure to apply models of care previously developed for ME/CFS, Friedman suggests, is a symptom of a more grave issue: The medical establishment still does not fully recognize chronic illness “as a serious medical condition worthy of treatment. I think that most chronic illnesses are not given as serious a consideration as are acute illnesses.”

With acute illness, he continues, “you go to a physician and describe your symptoms, your physician develops a theory of what is wrong with you. … And once the underlying cause is found, the physician will know how to treat it. But for these chronic illnesses that don’t have a ‘tell,’ it becomes much more difficult to diagnose, and much more difficult to treat. So that’s why these conditions are not treated.”

And the U.S. government, he adds, “was very narrow in its approach to dealing with the pandemic. They put all of their eggs in one basket and focused on developing a vaccine, and avoided development of a treatment.”

“The CDC already has a model of care in place that would work for long-haul COVID, and that model of care is the model they developed for ME/CFS. The question is, ‘Why they would not implement that model of care now?’ ”

“If they would fully implement that model, both the ME/CFS patients and the long-haul COVID patients would be receiving care right now.”

“Going back 30 years,” says Fennell, “I, among others, have developed treatment approaches for long-term chronic illness. They are there. They should be adapted and used.”

Instead, Friedman fears, most people are not aware of or prepared for the “dim picture” that awaits us down the road, with between 3 and 9 million people suffering from long-haul COVID, according to his statistical model.

“That’s a lot of people.”

Potentially making matters worse, 3–9 million long-haulers is a projection based on the number of people who had been diagnosed with COVID as of a few weeks ago. But two current trends do not bode well: (1) the refusal of a significant number of persons in the United States to be vaccinated, and (2) the ongoing failure by the FDA to approve any treatment of COVID in its early stages. If these trends continue, then the number of long-haulers is likely to exceed the estimate.  

“The prognosis in terms of disability, and the number of people requiring social and financial support, is going to be very large in comparison to other diseases,” says Friedman. “And that should be a concern.”

* Effective April 26, 2021, Kenneth Friedman has received an academic appointment as adjunct associate professor, Department of Medicine, School of Osteopathic Medicine, Rowan University, Stratford, N.J.  

Written by Stephen Leon

© Albany Health Management Associates

A Life in Hospice

Deborah Lee talks about the joys, challenges, and rewards of her 30-year career in Hospice: A Memoir of Life Among the Dying

The song playing in Deborah Lee’s head wasn’t just a temporary annoyance, like a tune that gets lodged in your brain after you hear it over the supermarket sound system.

It was a sign that she had found her calling.

The story of “Graciela Hernandez” is such an important milestone in Lee’s 30-year career as a hospice worker that she decided to tell it in the first chapter of her 2020 book Hospice: A Memoir of Life Among the Dying.

The chapter, titled “There’s a Lot They Don’t Teach You in Graduate School,” recounts how Lee, then a relative newcomer to social work, had been assigned to the Hernandez family because they were not feeling a positive connection with the nurse who had been visiting from Lee’s hospice team. Graciela, 15, was dying of cancer; as Lee prepared to ring the doorbell of the Hernandez family on a February day in 1991, she worried that she, too, would fail to connect.

For one thing, she was afraid there might be a cultural barrier with Graciela’s parents, who were Mexican-American. And while the parents were losing their only daughter just as Graciela was coming of age, Lee was eight months pregnant, visibly ready to experience the joy of bringing a new child into the world.

Mr. and Mrs. Hernandez were polite but cool; the girl lay comatose on her bed. Lee stayed by Mrs. Hernandez’s side while she administered a feeding tube, and as Lee sensed a slight warming from the woman, she found herself quietly shifting from an intellectual approach to a more intuitive one. Back at the kitchen table, Lee began to notice a song that was running through her head.

“I was relatively new to hospice, and relatively new to social work,” Lee recalled in a recent interview. “I was not accustomed to trusting my gut in my work. I was still pretty concerned with doing things ‘right’ [here Lee, sitting across from me, raises her fingers in quotation marks] — So when I first started hearing that song in my mind, it was more a distraction than anything else. I didn’t initially perceive it as having any clinical relevance.”

But the song would not go away, and Lee couldn’t ignore it any longer.

“I started to feel like I was supposed to say something about this to the family. And that feeling just kept getting stronger … to the point that it almost felt like screaming in my mind: Say it! Say it! So I did.”

“Never in a million years could I have anticipated what that unleashed.”

Lee told Graciela’s parents about the song in her head — “You Are My Sunshine” — and added that she must sound crazy, but felt for some reason that she needed to share it. As Lee waited for a reaction, first Mrs. Hernandez, then Mr. Hernandez, burst into tears. The song, they explained, was their daughter’s favorite as a young girl. Then Lee burst into tears as well.

Suddenly, the family’s experience with the previous nurse made sense; “the Hernandezes,” Lee wrote in Hospice, “felt that she did not truly understand what they were going through. They needed someone to see past their controlled, critical presentation to the agony within. When I ‘heard’ their daughter’s song — despite the disease, despite the passage of many years — they knew I could hear them.”

“As my hospice work continued,” Lee says, “I came to recognize this experience as what I call a ‘God moment.’ Hospice is full of God moments if you listen for them.”

* * *

Deborah Lee was born in Chicago and raised there until she was 14, when she moved with her mother and stepfather to the Milwaukee area. Her parents had divorced when she was 2, and her father also remarried. Her complicated family life as a youth fed her restlessness as a young woman; in her college years, Lee “wandered around a bit” and attended three of them, “but the piece of paper says Northwestern.”

Next, she fulfilled a dream to move to California, where she lived from 1978 to 1983. “And that was a very significant awakening to the real world,” Lee says. “My California fantasy was that that was where all the hippies lived. And I was going to go out there and be a hippie.”

However, she says, “absolutely nothing that happened in California worked out the way I hoped it would. The whole hippie ship had sailed by that time. In retrospect, it was a good experience. Let’s just say I got a lot out of my system. At the end of five years, I slunk back to Chicago with my tail between my legs.”

Lee returned to her hometown “feeling like I needed to get serious about what I was going to do when I grew up.” She worked for two years as a legal secretary for a divorce attorney in downtown Chicago; she liked her boss and enjoyed the job. But the wheels in her head were turning.

“I had two insights during the two years I worked for him,” she says. “The first was that the most enjoyable part of the job for me was listening to his clients pour out their hearts about what they had been through. I encouraged them to get this off their chests with me, because unlike my boss, I wasn’t charging by the hour.”

“The second thing I realized is that I was not going to want to be doing that same job when I was 50.” At that point Lee decided it was time to go to graduate school “and have a career and not just a job.” She applied to Loyola University in Chicago, where she earned a master’s in social work.

The idea of social work had been bubbling under the surface for some time. As a teen, Lee had enjoyed hanging out at a drop-in center staffed by students doing graduate study in social work. Also, “my stepmother was a social worker. And I admired her tremendously. So you put all that together with the fact that I enjoyed listening to my [lawyer] boss’ clients and trying to help and support them.”

There was one more piece to the puzzle, and her therapist helped her figure it out.

“I essentially grew up with four parents,” Lee explains. “They were all good people, but they were not perfect. I was certainly not abused or deprived in any way, but I wasn’t particularly happy.”

After her return from California, she went into therapy for about a year. “Toward the end of that time, I told my therapist that I was planning to go to social work graduate school. He asked me, ‘What is it in yourself that you’re trying to fix?’”

“I came to the realization that I was still trying to sort out the many mixed and conflicting messages I had gotten while growing up. And that was basically it; he gave me the insight that there was something I was trying to figure out by going to graduate school.”

* * *

About a decade into her hospice career, Lee got to thinking that she was having experiences, through her patients, that the average person didn’t have. “And I started writing about them,” she says, “just to process my own thoughts and feelings about them.”

Twenty years later, at the end of her 30-year career in hospice, Lee had about 20 pages’ worth of stories. “When something happened that I felt was worthy of writing down, I wrote it down. But I still was not thinking ‘Oh, I’m going to write a book.’”

After the pandemic hit, and it became apparent that it was going to go on for a while, the now-retired Lee was looking for something constructive to do with her time. And she started thinking seriously about turning those 20 pages of stories into a memoir. But she was unsure which direction to take; some of the stories (like Graciela’s) were interesting case studies, while others were more like educational essays. She could take a pragmatic approach and write an educational book for hospices to buy in quantity and give to families, or she could write more of a memoir.

At that point, Lee enlisted the services of a freelance editor, Elizabeth Judd, for what was called a developmental assessment. “She had done a lot of editing on books related to health care and to spirituality; she was the perfect person to guide me,” Lee says.

“She was a tremendous encouragement to me. She told me that she really enjoyed the excerpts that I sent her, and that it was one of the more gratifying things she had edited recently because she actually felt I was a good writer.”

And Judd nudged her toward memoir: “Write more stories. Write more stories.”

Hospice is a testament to the complex, poignant, rewarding, and often spiritual nature of hospice work. It also is eye-opening for anyone who might wonder why people like Lee do such “depressing” work.

“First of all, it’s not depressing. We, the hospice team, walk in and find some miserably sick person lying in a bed, and there’s lot we can do to make them better. When the family looks at their dying loved one, they see what I call ‘ghosts.’ They see not just the person in front of them at that moment, but all the people that he or she used to be. We, the hospice team, don’t know all those people. … We only know the person who is there now. That gives us a different perspective than what the family has, and a greater degree of objectivity.”

“For me, and probably the majority of hospice workers, there is a strong spiritual component to our work. Hospices themselves are not religious organizations. … But the majority of hospice workers that I have known bring some sort of spiritual perspective with them. They may or may not be religious, but the majority of them are highly spiritual. For me personally, I have a very strong sense that hospice work was my ministry.”

While some theories of human development end with physiological maturity, the psychologist Erik Erikson postulated eight stages of development through life, the last being “ego integrity vs. despair,” in which people attempt to reconcile their life successes and failures. Lee says she used the Eriksonian eighth stage a lot in her work with hospice patients.

“All of us want to think that our lives have some kind of meaning,” Lee says. “And as the hospice patient tells me about himself, I can help them see what some of that meaning might be and I can validate that for them.”

“Sometimes they have regrets. I try to help each person sort out those things that they felt good about, and help them come to a place where they can feel that their life overall had a positive effect. Some people, sadly, are truly in despair. There were those few that truly felt they had wasted their lives and messed up their opportunities. And that’s not something you can fix on somebody’s deathbed. What I could give them was the opportunity to be heard and accepted by me, without judgment.”

And then there are the crazy spiritual moments that sometimes accompany the last hours of a person’s life—or maybe even the hours just afterward. These are Lee’s “God moments”: improbable situations that invite us to consider mystical explanations over rational ones. A group of robins gathering in a tree outside a hospital window in the middle of a snowstorm. A red balloon that hovers around an apartment entryway on a windy day, never blowing away, as if waiting for someone inside. An experienced Air Force pilot who dies a few hours before a living pilot engineers a miracle Hudson River landing of his distressed plane, carrying all passengers to safety.

While the paranormal explanations for these stories (especially the one involving “Sully” Sullenberger) can seem farfetched, still, one has to wonder: On that winter day back in 1991, by what passageway did “You Are My Sunshine” enter Deborah Lee’s brain?

The day she “met” Graciela, Lee began to better understand hospice work as her calling, and hospice patients and their families as people whose lives and connections with loved ones can be improved under the empathetic care of hospice workers.

“I learned a tremendous amount, over the course of 30 years, about how different people face their own mortality,” Lee concludes. “And that has been helpful to me in thinking about my own eventual death. I hope that when my own time comes that I can bear up as gracefully as some of the people that I met.”

Hospice: A Memoir of Life Among the Dying, by Deborah Lee, was published on October 5, 2020 by BookLocker of Saint Petersburg, Florida.

See Mensa Bulletin review of Hospice

Written by Stephen Leon

 © Albany Health Management Associates

What I Value

“Caritas, Veritas, Fortitudo . . . ”

During my childhood, I experienced medical conditions that heightened my awareness of how medicine was practiced and how society regards people who are ill.

As a young hospice worker, I saw the kind of assessment and care that I believed all people, not just the dying, deserved and required. At the same time, a paradigm shift was happening, from acute to chronic illness and thus an opportunity to reconsider how we care for the chronically afflicted and their loved ones. This paradigm shift continues worldwide.

Decades ago, I saw the epigraph, “Caritas, Veritas, Fortitudo,” carved into a building scheduled for demolition. These words captured for me what is required of those with chronic illness and those who work with them … these words guide us in our work:

• Caritas means not only “love,” but also compassion.
• Veritas refers not only to “truth,” but also to authenticity
• Fortitudo is not simply “strength, but also courage

It is my hope that our work gives professionals and caregivers the help they need to assist patients in achieving “Caritas, Veritas, Fortitudo” and, with them, better, more meaningful lives.

Written by Patricia A. Fennell

© Albany Health Management Associates

COVID and Scleroderma: How Are You Really Doing?

Experiences with Scleroderma During the COVID-19 Pandemic

 

A team of researchers* are conducting a study examining how the COVID–19 pandemic may be affecting the health and wellness of people with scleroderma.

Participants with scleroderma are answering questions that involve healthcare during the pandemic – how people are coping with the risk of COVID-19, how people feel about the uncertainty the pandemic can bring to their lives, what health behaviors people are engaging in (both in general and COVID related, and how people are feeling physically and mentally. Volunteers are providing valuable knowledge to health care professionals involved in the care of people with scleroderma.

The more we understand about the experience of people with scleroderma during the COVID-19 pandemic, the better able we are to respond in ways that help people stay well.

 

Direct questions to Patricia Fennell at communications@albanyhealthmanagement.com

 

* Lee Shapiro, MD (Professor of Medicine at Albany Medical College), Patricia Fennell, MSW, LCSW-R (CEO of Albany Health Management Associates), and Nancy Dorr, PhD (Professor of Psychology at the College of Saint Rose)

COVID-19 ("Coronavirus")
Information and recommendations from the Scleroderma Foundation
Medical & Scientific Advisory Board Leadership Committee

(reviewed July 1, 2020)

RESTORATIVE PRACTICE'S NEXT PHASE

An Albany team integrates restorative practice with four-phase training in hopes of revolutionizing how we think about organizational behavior and relationships

Restorative justice has been described as “an ancient idea whose time has come.” The year 2005 was the right time for Jon Rice, a restorative justice trainer/facilitator and one of the organizers of a National Conference on Restorative Justice and Clergy Abuse, to invite Patricia Fennell, a research scientist, clinician, consultant, and the founder of Albany Health Management Associates, to share her four-phase treatment model during the pre-conference seminar. Thus began a more formal integration of two distinctly developed, yet synergistic, research-based approaches addressing our need for justice and healing. Among the key concepts in restorative practices — a term now used to connote a broadening of the paradigm and practices beyond the realm of criminal justice — are the elements of relationship and community.  

Restorative Practices (RP)

While modern practice dates to the 1970s and has gradually gained traction in recent years, it echoes social practices employed for centuries by many indigenous communities around the world, from Native Americans to the Maori of New Zealand. According to the International Institute for Restorative Practices (IIRP), RP refers to “a social science that studies how to build social capital and achieve social discipline through participatory learning and decision making.” 

The use of restorative practices, says the IIRP website, helps to reduce crime, violence, and bullying; improve human behavior; strengthen civil society; provide effective leadership; restore relationships; and repair harm.  Such practices include “the use of informal and formal processes that precede wrongdoing, those that proactively build relationships and a sense of community to prevent conflict and wrongdoing.” These practices are both proactive, and when necessary to address harm, responsive.

The formal end of the intervention spectrum is characterized by a structured facilitated meeting, of some or all those affected by a crime or wrongdoing.  This responsive “conference” involves asking pointed questions of  one who has done harm “to” another, the person who has had harm done “to” them, and those who care about each of those parties. The focus is  on what happened, the aftereffects, and what steps, if any, can be taken toward repairing that harm. This approach stands in contrast to a criminal justice system focused on “who dunnit” and the subsequent punishment that person “deserves.”

Fennell Four-Phase Treatment Model (FFTM)™

The model’s developer, Patricia Fennell, agrees with the essential tenet of restorative practice, that everything works much better if you don’t do stuff “to” people or “for” people, but instead, do things “with” people. The circle, a key formation within a restorative process  — whether in a family therapy session, a classroom, or a workplace meeting — implies equality among all the people involved, regardless of hierarchy. In hospice work, Fennell found that even if one is a clinician — an “expert” — that person also has to be a peer. The same is true with restorative practice. And this, Fennell says, “is revolutionary thinking.”  

As with RP, Fennell brings a collaborative approach to her work across a variety of conditions.  Starting in the early 1980s, when she was a founding clinician in one of the first sex-offense units in the country, she began developing what is now an internationally acclaimed treatment model. Bridging her work with trauma in multiple settings — including the trauma she encountered among the bereaved, from her perspective as a hospice worker — Fennell began thinking about how to apply what she was learning to the care of chronically ill patients. These formative experiences culminated in a new model for care based on the four phases she identified of what patients — and the people around them — experience during chronic illness. Understanding these phases — crisis, stabilization, resolution, and integration — helps the patient, caregivers, and family navigate the condition or situation, productively, at each phase. Fennell has published several books on the subject, which are widely used as textbooks. Whether one has dealt with one or more sides of sexual trauma, been the loved one, or not so loved one, of someone who has died, or is being treated for a physical or even a mental illness, the same frameworks apply, there are commonalities among them all.

An Amalgam

Fennell points out that the phase approach helps practitioners determine the “timing” of their restorative approaches. Together with timing, there are other shared values: 

• Equality between practitioner and individual/family/system
• Collaboration
• Appreciation for the physical, social, and psychological aspects and contexts within which one functions
• Respect that encourages the affected person(s) to determine whether, when, and how to share their story (or not)

Fennell and Rice have gone on to train or work with others from these blended perspectives, including: police who may have to respond to a mental-health situation; church members affected by clergy abuse; and direct-care staff working with residents recovering from mental illness. 

Rice also had a hand in work carried out by Fennell and David Kaczynski, whose involvement in the arrest of his brother Ted (known to the public as the Unabomber) brought him face to face with the issue of restorative versus retributive justice. Rice brought Fennell and Kaczynski together in the mid-2000s. When Kaczynski presented on violence and how it affects the various people involved,  Fennell would contextualize  the situation he described utilizing  the four phases: crisis, stabilization, resolution, and integration.

Fennell and Rice share restorative phase practices (RPP)™; with providers seeking to work  ‘with’ those who are experiencing complex chronic conditions in order to bring about effective and well-timed interventions.

Written by Jon Rice

© Albany Health Management Associates  

---

Jon S. Rice, LCSW-R, has over 30 years of direct service experience working with youth, adults, and families across multiple areas of concern including child welfare; sexual abuse and other trauma; family and relationship conflicts; chronic illness; and forensic mental health. Jon is a Program Specialist 2 with the Office of Mental Health, is in private practice as senior clinician with AHMA, and co-leads psychotherapy groups at St. Anne Institute in Albany. First exposed to restorative justice through the Presbyterian Church (USA), Jon subsequently became a licensed restorative practices trainer. He has trained people in law enforcement; education; clergy abuse mediation; and graduate students, among others. He has served in various leadership roles through Habitat for Humanity and the Presbyterian Church. In his remaining spare time, and he has also found joy in coaching Little League baseball and youth basketball. 

THE HIDDEN DANGERS OF HEAT WAVES

When a summer heat wave settles over us like an oppressive shroud, we know what we can expect from the headlines. There will be warnings to stay inside in air conditioning, stay hydrated, and keep physical exertion to a minimum. There will be reports of hospitals taking in victims of heat stroke and heat exhaustion, and worse, grim stories of heat-related deaths.

We can also expect a spike in certain types of crimes, regardless of whether they make the headlines. Statistically, we know that some categories of crime do not fluctuate with the air temperature — but we also know that extreme heat does correlate with spikes in physical assault in general, and domestic violence in particular.

Anecdotally, we also know to expect increased incidents of road rage, and more arguments and fights on the street, in bars, and in the kitchens and back bedrooms across from your own rear window. Oh, and we’re sure to see a sampling of 'Ten Ways to Beat the Heat' stories, some of which may be more useful than others, although these lists sometimes carry roughly the same depth and gravity as household redecorating tips.

Beyond the headlines, heat waves affect all of us in ways that are both obvious and unseen — and potentially dangerous. And if extreme heat poses health risks to relatively healthy people, those risks are much more pronounced among the most vulnerable populations: the old, the young, and the chronically ill.

We’re all familiar with the term “seasonal affective disorder,” which refers primarily to symptoms that appear with the onset of winter, including depression, low energy, appetite loss, inadequate sleep, loss of interest in usually enjoyable activities, and so forth. While the causes of SAD are not full understood, it is generally thought that the reduction in daily sunlight — and with it, the disruption of the internal body clock, and changes in the levels of brain chemicals — is a significant factor.

Some people, however, are more prone to “reverse seasonal affective disorder,” which switches the timing of the symptoms to the onset of summer. And people who don’t do so well with the heat and long days are going to be that much more affected by a heat wave. So are the vulnerable groups generally, especially the chronically ill, who make up over half the population — and are among the most susceptible to the risks of extreme heat, which can both exacerbate their symptoms and even worsen the underlying conditions.

It’s the Inflammation

Although extreme heat can harm us mentally and physically in a number of ways, the biggest culprit is inflammation, which can present in many different forms and affect everything from cognition to digestion to balance to your ability to get a good night’s sleep. And inflammation can cause pain wherever in the body it occurs.

How can we manage inflammation during a heat wave?

• Stay hydrated — and limit things that dehydrate you, like caffeine and alcohol.

• Exercise moderation, and employ sensible practices with sleep, food, hygiene, etc.

• Try not to have big stress-inducing conversations. This isn’t the best time to pick an unnecessary fight with your spouse or make a life-changing decision like moving or changing jobs.

• Consider looking at an anti-inflammatory diet. Google it and read up. An anti-inflammatory diet can help anybody — it doesn’t matter who you are or whether you have chronic illness.

• Stick to your structures and routines. Prepare ahead of time: gas up the car, make sure you have your basic provisions, get enough cash out of the ATM. Whatever you do for a snowstorm, do for a heat wave.

• Stay cool. This is why God made air conditioning. But don’t go to extremes — find the right temperature setting for your body. Set to the highest temperature that still keeps you cool. Draw the blinds.

Vulnerability Times Seven

Extreme heat, and the inflammation it causes, also affects us in more specific ways that relate to seven “functional capacities”* we all share: fatigue, pain, sleep, cognition, ambulation, mood, and gut. These capacities are negatively affected by a heat wave, and that goes for everyone — but especially the young, the old, and the chronically ill.

• Fatigue may have little or nothing to do with the amount of sleep you get. You can have physical, mental, or emotional fatigue regardless of your sleep patterns — and inflammation affects fatigue too.

• Inflammation can bring on pain anywhere in your body. And when the barometric pressure changes, that creates swelling — in the joints, in the gut, and elsewhere.

• Heat waves disturb normal sleep patterns. The extra light in summer already affects circadian rhythms, and heat waves occur during the maximum light periods. Heat, humidity, and the inflammation they cause exacerbate the disruption.

• As for cognition, there is some science to back up the popular understanding that people don’t think as well in the heat. People have more trouble finding words, focusing, what we might call “staying on point.” And it affects the short-term memory. You can’t find the car. People also are more prone to make careless (and potentially deadly) mistakes while driving.

• Ambulation is affected by many things, notably, the inner ear. As we age, balance becomes more of an issue. Heat and inflammation can throw off balance, which affects walking and other types of movement, including going up and down stairs.

• Heat waves affect mood. In extreme heat and humidity, all of these functions can act upon each other negatively. And regardless of or in addition to these factors, the brain experiences inflammation on its own. All of this makes us irritable. We’re hot and uncomfortable, and we’re not thinking well.

• The gut is already having an inflammatory response, and the heat makes us want to eat less. We change our diet, not necessarily for the better, and we move and exercise less — all of which is a recipe for digestion problems.

Make It Easy on Yourself

You can manage your functional capacities during a heat wave without overwhelming yourself. Think about which capacities typically are your problem areas. Rank them, and work on one or two at a time. For example:

Sleep: Try to create a reasonable sleep schedule. Give yourself time to rest. Keep your room dark. Avoid overhead lighting. Give your brain the message that it’s time to wind down.

Cognition: Avoid mental activities that strain your brain. Minimize distractions so your brain can do the work it has to and then rest. Work for 40 minutes and then take a break. Calm your neurology.

Mood: Manage your mood by expecting the things that are likely to happen, so they won’t throttle you. Expect people to cut your off in traffic. Expect people to be cranky. Expect that you will be more emotional. If you’re vulnerable (and aren’t we all) to feeling low or anxious or unsettled, expect it and be ready to manage it.

 

*Fennell, P.A. — The Chronic Illness Workbook: Strategies and Solutions for Taking Back Your Life (Albany Health Management Publishing)

Written by Patricia Fennell & Stephen Leon

© Albany Health Management Associates

CONFRONTING THE SILENCE

Albany activist Shirey Archie wants more Americans — especially those in the “silent middle” — to stand against racism by acknowledging the pain of our national history


“I have a 13-year-old son,” says Shirey Archie. “I have a black male child in a society that doesn’t do well with black male children. And when he was born, I realized I had inherited a big responsibility.”

I ask Archie (that’s his last name, and the name most commonly used by his friends and co-workers) if he has given his son “the talk.” He smiles knowingly, but instead of answering directly, he tells me a story, leaning in a little, his eyes fixed directly on mine across the top of my laptop screen.

“I came home one night,” he says, and his son was waiting for him. “He said, ‘Dada?’ I didn’t answer. He said, ‘Dada?’ I didn’t answer. “He said, ‘Dada, is that you?’ ”

“I said, ‘No, it’s not me,’ and I said it again, and then he said, ‘Why is it not you?’

“And I said, ‘Because I had an encounter with the police, and I’m not here.’ ”

Archie had gone out to buy Chinese food, and when he got back into the car, he forgot to turn on his lights before pulling away. He realized it and switched them on, but now a squad car was flashing its lights behind him.

The officer asked if he had forgotten to turn on his lights, and Archie politely explained that he had. Nothing came of the encounter.

“But here’s the thing,” he says. “It could have gone any number of ways. Depending on him, depending on me. And for a lot of people, it’s gone badly.”

To drive home his point, he tells a variation on the original story, like a filmmaker retracing the action but altering details to show a different outcome.

“Scene two: ‘Dada, is that you?’ ‘No, It’s Mama.’ ”

“Where’s Dada?”

“He had an encounter with the police.”

***

Shirey Archie is an eligibility examiner for the Albany County Department of Social Services, but he’s not interested in talking to me about his day job, and nudges me to move on by answering my question with a single word: “paperwork.”

We are here today, at a coffee shop in Albany, to talk about the other work he does, work he does not get paid for, work he believes in but whose effectiveness he has no way to measure.

“I have a sign in my car that says, ‘Stand Against Racism.’ ”

Archie stands and holds up the sign on street corners; lately he’s been standing once a week at the corner of Watervliet and Central avenues in Albany. For the people who ask to stand with him, he designated one day a month for them to join him.

The responses from passing drivers, he says, “range from horn blowing [widely understood to signal approval] to yelling the ‘N’ word, or ‘Get a job.’ ”

“The most significant to me is neither of those,” Archie says, “It’s the silence. I’m of the opinion that people like me in the liberal population think there are more people on our side than there really are.”

“If somebody goes by and honks,” he continues, “you have a general idea what they think. If somebody yells ‘Get a job,’ you have a general idea what they think. But if they’re silent, I have no idea.”

And it’s “the silence in the middle” that bothers and confounds Archie the most.

***

As his son comes of age during a time of palpable racial tension, Archie — who was born near Bill Clinton’s hometown of Hope, Ark., and raised in Niagara Falls, NY — reflects on how much has changed in his own lifetime, and concludes, not much.

He compares the lynchings of yesteryear, in which white supremacists in white robes and hoods killed innocent black men with no consequence, to the police shootings of today, in which men in blue uniforms kill innocent black men with no consequence.

“Race is the problem,” he says. “And my question is, how do good people allow this to happen? How can you sign on to your church creed and allow this to happen?”

Pressed to clarify what he means by “allow this to happen,” Archie says he is referring both to the election of Donald Trump — which emboldened white supremacists to voice their racism more aggressively — and more broadly, to a society that just can’t seem to make the issue a priority.

“Someone gets shot,” he says. “There’s a huge protest about it. Thousands of people show up in thousands of places. A week later, you can’t find two. Why? Because there’s no commitment to it.”

“For me, it’s not an issue. I live it every day.”

But he needs support, he says. He needs the support of the silent middle. He needs more people to do the mental work it takes to really understand what’s going on and do something about it.





“People don’t sit down and take a hard look at themselves,” Archie laments. “If they do, and they come out the other side, they’re committed. If they do the hard mental work and decide it’s not for them, fine. But it’s the people in the middle. The silent ones. I need an answer.”

We talk about various things people do to make themselves feel better: attend a protest, post about the issues on Facebook.

And of course, just feeling better isn’t enough. “You gotta feel bad before you feel better,” he says. “Come feel bad with me for a little while!”

He laughs at the way that sounds. Then his face turns serious again.

“The truth is, if you can’t look at our history, and really feel the pain of it, then you can’t come out of that with the energy you need to deal with it in the present.”

“It’s not an intellectual exercise. It’s not a dissertation. It’s not term paper.”

***

Archie does another kind of volunteer work, although he doesn’t consider it work so much as a responsibility to pay it forward. Having gone through his own dark times earlier in his life, he now helps people who have experienced similar troubles.

“I’ve been in recovery for 35 years, in 12-step programs,” he says. “After all this time, it’s simply a part of who I am. I don’t think I specifically make an effort to help.”

Archie describes “a period of time when I when I behaved badly, toward myself and others. This was primarily due to drinking and other forms of substance abuse. With a lot of help, I stopped the active abuse. With a lot more help, I am working on the changes necessary to stay sane and ‘sober.’ For me, not using has revealed how damaged I was before I ever drank. A lot of people relate to that.”

Archie’s claim that he doesn’t consciously try to help others comes across as characteristically modest understatement.

“I go to meetings. I share my life experience with people I meet when they ask.”

“I’m pretty straightforward,” he says. “People can be naive about the power of substances and how it changes folks’ behavior. And I simply try to clarify, as an end user. But not as an expert — just based on my experience, and willing to share without much reservation. Some people would rather not, but [if] you ask me a question, you’ll probably get an answer.”

“Being sober for me pushes that central responsibility. I could easily say to someone, ‘Take care of yourself, kid.’ But I couldn’t do that and consider myself a sober person at the same time.”

***

For Shirey Archie, a black man raising a black male child, a lot of thought goes into how to respond to words and situations that might be provocative, or hurtful, or hostile — and how to convey those lessons to his son.

He describes how he would take him to the Bethlehem Public Library, and how there was a young white girl who became his friend and played Minecraft with him. “And so I had to say to him that it would be possible that some group of boys might say something inappropriate to him, and that he had to know beforehand how he was going to respond, so [nobody would] get hurt.”

Thinking about this, Archie recalls another moment that took place in Delmar, at a peace vigil. The people taking part in the vigil, as well as the passersby, were mostly white. Archie was holding a sign that said, “War is not the answer.” A couple walking down the sidewalk approached him, and the man said, “What about the Civil War?”

Archie’s response was, “No war’s a good war.”

But he went home and thought about the other things he could have said.

“Part of the challenge,” he says, “when someone says something to me, I need to be careful how I respond. I need to be a little bit better than the comment.”

He talks about the hostile comments his son might hear, the tense situations he might face, the encounters with the police that might turn confrontational. Then he asks rhetorically, “Is that fair?”

Of course not. But it’s real.

“So what are we going to do about it?”

Archie raises his hands to the level of his head. “Nothing changes if we don’t put it up here.”

Then he lowers his hands until they’re out of sight — like the silent middle.

“But we keep it down here.”

***

Written by Stephen Leon

© Albany Health Management Associates