New and old grief in the age of coronavirus

I meant to put this to paper on Thursday, the real anniversary. But these days of public health reporting amidst a pandemic keep so busy, and the drops of free time devoted to making sure friends and family are OK, trying to escape into the pages of a novel for a few hours, and keeping a home (that now also houses a 24-7 work office) safe, sane and disease-free, the week escaped me — but the weight of it did not. Today, when I read that one of Dad’s (and my) favorites John Prine was intubated in the hospital after showing COVID signs, on the anniversary of Dad’s death no less, I took it as a nudge from the universe, to breathe deep and feel the weight of old and new grief, as always, by the barometer of Dad.

I’ve spent the last week writing about and reckoning with death. The first of which, I was waiting for, so it came and went. The second I was waiting for, too, but it was the third, fourth and fifth Mississippians to die from coronavirus this week (all in one day) that knocked me down. Our total now stands at 14 deaths in a little over a week. It’s never easy to write about death, even more so for those of us that know it well, because the words are never enough. Every “male in his early 60s with underlying health conditions,” to me, is Bryan.

And with that, as the universe tends to work, this week marked seven years ago that I lost Dad. Seven years ago that I crumbled onto the floor of the history section in the East Atlanta indie bookstore where I worked. (Ironic, that was his favorite section — only because we didn’t have a literary Westerns one.) Seven years ago that I learned he took his own life, and would later be asked by the Fulton County medical examiner, “what I wanted to do with his property”/evidence. Seven years ago that I began the arduous process of closing out the estate of my dead best friend (nobody tells you how much paperwork death takes, and with every stack a little more heartbreak even though you thought it couldn’t break anymore). Seven years ago that I sold his Harley, house and woodworking tools, gave his truck to Stuart and unpacked his and my own childhood from his closets. Seven years ago that I read through his AA book and worksheets, truly understanding for the first time the demons he was fighting. Seven years ago that I realized we’d never again heckle the Mets’ outfielders from our favorite seats at The Ted, cry during the 18th hole of the Masters together, accidentally show up somewhere in matching Chuck Taylors and flannels, or “blast”, as he liked to say, Cash or BB King in the chevelle. Seven years ago that I re-purposed the speech I was planning to give at his wedding that weekend into a speech for his funeral that same weekend, which I ultimately was unable to bring myself to deliver to the overflowing crowd packed into a big and strange church I’d never before been to. Seven years that I began to navigate uncharted territory of depression and denial, which looks different for everyone, but ultimately brought me to the six years of gratitude, growth and focus I’ve had since.

My heart is in pieces for anyone who’s experienced this in what we now know were normal times. Reliable jobs for the most part — though that’s always looked different for millennials. Reliable dive bars down the street to visit and commiserate. Reliable access to groceries and books and places of faith. Reliable embraces and access to hospitals. But for anyone who is stuck in the beginning of this new normal and facing grief head-on, I promise it will get easier. It never gets better, but it does get easier. And we’re only a FaceTime away. Lean on us, we’ll help you carry this.

I can’t imagine dealing with death in the middle of a global pandemic, a country on lockdown — not having the closure of a funeral or a hug from Noé, Roger, Jeff or Karen, just a few of those that standout from the day I remember so vividly. I can’t imagine having to isolate at home when what you need most is air and sunshine and a semblance of normalcy. But nothing about your new normal will be normal, this is just an even harsher introduction to that. And so, the best estimation of grief I’ve found, shared by a friend-in-grief, Krystal, via u/GSnow:

“Alright, here goes. I’m old. What that means is that I’ve survived (so far) and a lot of people I’ve known and loved did not. I’ve lost friends, best friends, acquaintances, co-workers, grandparents, mom, relatives, teachers, mentors, students, neighbors, and a host of other folks. I have no children, and I can’t imagine the pain it must be to lose a child. But here’s my two cents.

I wish I could say you get used to people dying. I never did. I don’t want to. It tears a hole through me whenever somebody I love dies, no matter the circumstances. But I don’t want it to “not matter”. I don’t want it to be something that just passes. My scars are a testament to the love and the relationship that I had for and with that person. And if the scar is deep, so was the love. So be it. Scars are a testament to life. Scars are a testament that I can love deeply and live deeply and be cut, or even gouged, and that I can heal and continue to live and continue to love. And the scar tissue is stronger than the original flesh ever was. Scars are a testament to life. Scars are only ugly to people who can’t see.

As for grief, you’ll find it comes in waves. When the ship is first wrecked, you’re drowning, with wreckage all around you. Everything floating around you reminds you of the beauty and the magnificence of the ship that was, and is no more. And all you can do is float. You find some piece of the wreckage and you hang on for a while. Maybe it’s some physical thing. Maybe it’s a happy memory or a photograph. Maybe it’s a person who is also floating. For a while, all you can do is float. Stay alive.

In the beginning, the waves are 100 feet tall and crash over you without mercy. They come 10 seconds apart and don’t even give you time to catch your breath. All you can do is hang on and float. After a while, maybe weeks, maybe months, you’ll find the waves are still 100 feet tall, but they come further apart. When they come, they still crash all over you and wipe you out. But in between, you can breathe, you can function. You never know what’s going to trigger the grief. It might be a song, a picture, a street intersection, the smell of a cup of coffee. It can be just about anything…and the wave comes crashing. But in between waves, there is life.

Somewhere down the line, and it’s different for everybody, you find that the waves are only 80 feet tall. Or 50 feet tall. And while they still come, they come further apart. You can see them coming. An anniversary, a birthday, or Christmas, or landing at O’Hare. You can see it coming, for the most part, and prepare yourself. And when it washes over you, you know that somehow you will, again, come out the other side. Soaking wet, sputtering, still hanging on to some tiny piece of the wreckage, but you’ll come out. Take it from an old guy. The waves never stop coming, and somehow you don’t really want them to. But you learn that you’ll survive them. And other waves will come. And you’ll survive them too. If you’re lucky, you’ll have lots of scars from lots of loves. And lots of shipwrecks.”

-u/Gsnow

 

 

I Felt a Funeral, In My Brain

I sat down with bookseller and author (and dear friend) Will Walton whose forthcoming novel, I Felt a Funeral, In My Brain (titled after the Emily Dickinson poem) will be out next month. Listen to our chat here.

For every pre-sale of the book, Will and the bookselling team at Avid Bookshop in Athens, Ga will donate 25 minutes of volunteer work to the Athens Community Council on Aging and their program Grandparents Raising Grandchildren.

This is one of the most spot-on assessments of the elusive space between grief and growth that I’ve ever read. Walton is delicate with his characters, though they are not as fragile as we may think at first, demanding more of our respect and admiration as we read on. These characters embody the best and worst parts buried deep in each of us, that roar out simultaneously when faced with life’s inevitable tragedies. With a little help from the last century’s greatest poets, Walton gives us an empathic and graceful, yet monumental, handling of what it’s like to get through that which you think you cannot survive. I loved reading this book.

 

Listen to our chat for Radio Athenia, about bookselling, book reading and book writing!

Buy a copy of the book now at Avid Bookshop (they can mail it to you once it’s out, too).

 

New site!

I’ve got a new site filled with my freelance reporting work—check it out here!

Helping youths (and their families) cope with mental illness

The sudden onset of psychosis hits  the patient’s family like a bomb.

And when counselor Will Warren meets with parents facing the worst moment of their lives, he emphasizes two things:  (1) This is not easy. (2) You’re not alone.

A psychotic episode is a sudden, terrifying break with reality. Young people in their teens or early 20s, seemingly poised for the next stage of life, may suddenly be derailed by overwhelming guilt or paranoia. They may experience hallucinations or intrusive, repetitive thoughts they cannot turn off. They may stop eating, sleeping or going outside.

These frightening events often occur in young people who have been living with an undiagnosed mental illness — such as major depression or anxiety, bipolar disorder or schizophrenia — for a long time. But then something shifts and family members realize there is a problem.

“A lot of the families are coming in for treatment in crisis mode,” said Warren, an Athens-based licensed professional counselor. “It’s a very isolating experience.”

That’s where EPIC, the Early Psychosis Intervention Collaborative, comes in.

Read full story on Georgia Health News here.

Acoustic Assistance: New Tinnitus Research Reassesses Frequency

This article originally published in Paste Magazine.

On a good day, tinnitus resembled sirens and howling wind for singer-songwriter Ryan Adams. On a bad day, the sounds emulated standing in front of jet engine, he once told Us Weekly. Adams said the high-pitch frequency in his left ear was near constant a decade ago and led to a tinnitus diagnosis.

Not everyone with tinnitus experiences such extreme symptoms, but anyone who has lived with the ringing, buzzing or hissing knows the emotional and physical toll it takes. Losing trust and control over hearing, including the annoying ongoing internal sound, leads to emotional and psychological stress.

Often described as a phantom sound, tinnitus is an audiological and neurological condition that causes perception of an inner-ear frequency without an external source, according to the American Tinnitus Association. It is associated with hearing loss and a diminished quality of life, and it may affect as many as 1 in 5 Americans, according to the Mayo Clinic.

Since tinnitus isn’t a disease, rather a condition based on patient reports, diagnosis and treatments vary widely. Because there is no known cure, experts disagree on the best way to help. Mostly, they try to address the symptoms, such as depression, anxiety, insomnia and concentration issues.

But now, music therapy could be the answer, Neurology Now reported this month. It retrains the brain to accept a “new normal” that includes the annoying humming.

Neuro-music therapy, for example, uses tone sequencing to train the auditory system to adjust to the internal sound and decrease sensitivity to the frequency. Because tinnitus ringing is an auditory perception like music, neuro-music therapy intervention supplements the symptoms with external acoustics to re-map a patient’s response to the internal ringing.

For this sort of music therapy to be effective, each patient’s specific pitch has to be measured and matched. In fact, traditional music therapy methods may be falling short because they don’t measure and match tinnitus frequency, which can vary day-to-day.

To increase effective response to neuro-music therapy and decrease tinnitus perception over time, pitch-matching should be routinely tested, researchers at the German Center for Music Therapy Research said in the Journal of the American Academy of Audiology. The data suggests that daily frequency tests help sound therapists adjust as patients’ internal frequencies fluctuate.

The study used the Heidelberg Model of Music Therapy for Chronic Tinnitus, which has shown to effectively reduce symptoms by establishing a tinnitus-equivalent sound that helps patients externalize a pitch previously only heard internally. Other studies have suggested that this practice can be therapeutic in and of itself by validating patients’ experiences as part of the methodology.

Read the rest here.

Motivating Community Drug Distributors in the fight against NTDs

This story was published by the Neglected Tropical Diseases Support Center.

“There’s many a slip ‘twixt the cup and the lip,” an old proverb says. For the large-scale mass drug administration campaigns delivering pills to prevent or treat neglected tropical diseases (NTDs), this is both literally and figuratively the case.

Despite support from international public health organizations, major public and private donors and pharmaceutical companies, it’s no easy task to move medications from container ships to individuals. And where a person lives at least partly determines whether they’ll receive necessary drugs for lymphatic filariasis (LF), trachoma or other NTDs.

In 2015, about 20 percent of health districts slated for LF and trachoma elimination in 2020 were not meeting coverage targets, according to USAID surveys. During the 2016 COR-NTD conference in Atlanta, program managers came together to discuss strategies for maximizing coverage in rural and urban areas in Africa and Asia.

Mass drug administration campaigns rely heavily on donated drugs and volunteer community drug distributors (CDDs) to reach as many people as possible with little manpower and low budgets.

CDDs are the unsung heroes of these campaigns, participants in the treatment coverage breakout session agreed. These individuals usually work on foot, they are rarely paid, and are indispensable because they deliver drugs and motivate people to take them.

While program managers disagree on the best approach to recruiting and managing these key volunteers, they agree that the NTD community needs to do more to support, supervise and – perhaps most importantly – incentivize their work.

With limited political will and finite funding to fight NTDs, resources need to be managed so that CDDs are trained, equipped and respected, according to program managers. These volunteers also need to stay motivated and proactive as the battle against NTDs advances.

“As we move toward eliminating the NTDs, more work has been added onto the CDDs, and the pressure on the communities to sustain these incentives has also increased,” said Uzoma Nwankwo, senior medical officer in Nigeria’s NTD control and elimination division.

Drug distributors need to be known and trusted in their immediate community, and they need to be bilingual to communicate with both residents and researchers. They gather data essential for tracking treatment coverage and the efficacy of drugs. This is a lot to ask of a person who is paid little or nothing, and program managers rely on individuals committed to improving community wellness, said Nwankwo.

But more than altruism may be needed to meet the WHO 2020 goals for NTDs.

“This has put the question of incentives back on the agenda for discussion by all stakeholders as an issue of renewed importance,” said Nwankwo, emphasizing that the overall welfare of the drug distributors needs to be a concern across the NTD community.

Training and supervision are also needed to make sure that accurate coverage data are recorded and reported up the chain. But a supervisor cannot do the job of a community liaison, especially in fragmented or conflict-zone communities.

Women CDDs and the organizations they work for face extra challenges, especially in conflict areas, says Dhekra Annuzaili, a physician working with the Schistosomiasis Control Initiative in Cairo.

Women CDDs in war-torn areas run the risk of physical harm, including sexual assault, in addition to traditional demands of homecare and children. Many lack the resources to feed, clothe and educate their children, and Annuzaili believes they should be provided with resources for their children as well as paid for their hours on the job.

Women CDDs are more effective at enrolling disadvantaged women and girls in MDA programs than their male counterparts, according to a report by Uniting to Combat Neglected Tropical Diseases. But if they work for free, they may unintentionally foster the idea that women should work without pay.

Better compensation and more incentives for these workers can improve MDA coverage, said Annuzaili. “If you lose women, you lose CDDs, you lose coverage and lose your [treatment] targets.”

Read more coverage from the COR NTD conference and see my accompanying video here.

New programs aim to give young docs skills to care for aging adults

Excerpt from a story published on healthjournalism.org.

Athens, Ga., is a small city about 75 miles east of Atlanta. Older adults love its low cost of living, community-mindedness and proximity to a major urban area. What they don’t love, however, is the poor access to specialized senior health care.

Nearly 10 percent (11,830) of the city’s 120,000 residents are over age 65, but only three office-based geriatricians practice here.

The geriatrician shortage is not unique to Athens, to Georgia, or to the United States. There are fewer than 7,500 board-certified geriatricians nationwide — about 2,000 seniors for every geriatrician — according to the American Geriatrics Society. This ratio is more than double of what one doctor reasonably can handle, the society says, and doesn’t include the two-thirds of other people over 65 who do not need specialized care —  not yet, anyway.

About 13,000 additional geriatricians are needed to meet the current demand for care, according to estimates. Moreover, as the boomer generation ages, the geriatrician workforce will need to grow by 1,500 annually for the next 15 years to satisfy the nation’s need for senior care by 2030.

In Georgia, about 19 percent of the state’s population will be over 65 by then — hovering around 2 million — calling for triple the current number of geriatricians.

Athens-area residents may be better off than some Georgians because they have access to St. Mary’s Hospital and Piedmont Athens Regional. As rural hospitals continue to shutter, Athens is set to play an important role in preparing young doctors to care for elders.

Read more.

Hospice care improves quality of life at the end

Excerpt from a story that appeared in Georgia Health News

Surgeon and bestselling author Atul Gawande writes that he never learned about mortality in medical school. He learned to examine, prescribe and operate, but not how to help patients die well.

It wasn’t until he was a practicing surgeon that he confronted the idea of a “good” death — a death consistent with a life fully lived. A death that lets the patient be surrounded by family and friends, instead of by doctors and humming medical machines. A death that is calm, soft and warm, instead of chaotic, mechanical and cold.

That sounds good, but it is not the death that most Americans experience.

Fewer than one-third of Medicare beneficiaries actually die at home, although 90 percent told Kaiser Family Foundation that this was their preference. And fewer than half of Medicare patients use the hospice benefit they’re entitled to.

Hospice care is a Medicare benefit that provides nursing, counseling and pain management, known as palliative care, usually in patients’ homes. Aiming to provide quality of life in a comfortable setting, hospice services offer coordinated care rarely seen in other medical contexts — but only to patients who have six months or less to live as determined by their doctor.

The costs of the care are covered for eligible patients, with the hospice provider billing either Medicare or private insurers, and the services are delivered right to the doorstep.

“It’s like wearing a life preserver,” said Martha Sweat of Athens.

Her husband, Ricky Sweat, signed up for hospice care in August, shortly after he was told he had amyotrophic lateral sclerosis, or Lou Gehrig’s disease, at the age of 60. Since both Sweats were under 65, they didn’t qualify for Medicare, but their private insurance covered the hospice bills.

Ricky’s disease progressed rapidly. And this week, he passed away where he wanted to be – at home.

Read more here.

Election coverage: How both candidates’ health care policy will affect women

Multimedia audio slideshow

(All photos and audio by Erica Hensley)