Kentucky’s COVID crisis is ending. Now we must reckon with a crisis of grief.
“We hadn’t spoken in years and then suddenly she was talking to my mom again. My mom was so elated to have her sister back that she didn’t think about the fact that her sister had abandoned her for years. But I remembered. She showed up at my bridal luncheon and I was friendly, cordial and welcoming. But when she went to leave I followed her to her car and said ‘this time, you have to stay. You can’t come in and out of our lives like that.’ She looked astonished. But she stayed, just like she promised, until she couldn’t stay any more.”
Jenna Tobbe lost her aunt, Mary Lea Brown, on Aug. 14, 2020 to COVID-19. She couldn’t go to the funeral; she couldn’t see her mother for comfort. All she had were these words.
“It felt like I was memorializing her in a way,” said Tobbe, who lives in Louisville but is from Daviess County. “I wasn’t able to go to her funeral, so I was really thankful to put her story in the universe and acknowledge she was a big part of my life and was someone I was really going to miss.”
Tobbe wrote her story for a website called WhoWeLostKy.org, which was started by a Louisville woman named Martha Greenwald because she kept seeing statistics about Kentuckians who died of COVID-19 without hearing their names or their stories. Greenwald was going through her own kind of mourning at the time. A former Wallace Stegner Fellow at Stanford University and prize-winning poet, she had recently lost her job as a lecturer at the University of Louisville. She felt unmoored in the middle of a pandemic. Then last fall, she heard Public Health Commissioner Steven Stack ask Kentuckians to send him letters, real, paper letters, about how they were feeling.
“It hit me like an epiphany at that moment that people weren’t writing about what was going on,” she said. “One night, the idea for the website came to me like a poem, fully formed.”
She taught herself Wordpress, created the site, and tried to get the word out. People from all over the state heard about it, and people sent her remembrances. They were tragic and heartwarming. Musician John Prine was an early COVID casualty and his cousin, Jennifer Johnson, from Hardin County, wrote: “I don’t believe anyone could choose his favorite song; everything he wrote was a labor of love.”
Others spoke of grandparents and in-laws, the fire chief taken from his community, the woman who died of a broken heart when she was left isolated in a nursing home. “She lived for us in her younger years and it must’ve seemed as we turned our back her when she needed us most,” wrote one. “We got 1 hour funeral, no friends, no graveside services, no Catholic Mass. It left our family with sadness to lose a loved one at 63 yrs young. I miss our daily talks, laughing and just spending time together.”
Greenwald was both thrilled with the response and confused she wasn’t getting more of one. Then she realized that as with everything to do with COVID-19, grief was confusing and complicated, and once again, we simply did not know what we did not know.
‘Shame and frustration and sadness’
Greenwald came across a story in the Owensboro paper about secret grieving groups organized by the hospice organization because people felt so isolated by their relative’s COVID-19 death. So far, more than 6,700 Kentuckians have died of COVID-19.
“There’s a huge amount of shame and frustration and sadness involved with people who are COVID bereaved,” Greenwald said. “On social media, people will comment that maybe someone died because they were fat or had diabetes, as though it were somehow their fault.”
One of the reasons people liked her site, she found out, was there was no commenting allowed. She joined a national private Facebook page for mourners and started talking to grief experts. She learned about people not only lost out on the normal rituals of mourning, like funerals and visitations, but they felt shame or embarrassment that this illness had taken their loved ones, as though they should have worked harder to prevent it.
“At least a couple of times a day I see a post that makes me cry,” Greenwald said. “The amount of loneliness and isolation that people feel is startling.”
Even more troubling is that people may feel even more isolated as the rest of us celebrate vaccines with parties and reunions. “Now the vaccine is here, so it’s over and no one cares any more,” Greenwald said.
‘The Grief Crisis is Coming’
Writer Allison Gilbert recently penned a New York Times essay titled “The Grief Crisis is Coming,” in which she cited the work of researcher Ashton Verdery, an associate professor of sociology and demography at Pennsylvania State University, who introduced the Covid-19 Bereavement Multiplier. He found that on average for every person who dies of Covid-19, nine loved ones are left behind.
“We should be prepared for another health catastrophe; while the Covid-19 vaccines can put a cap on the burden, they can’t halt or alleviate the pain,” Gilbert wrote. “A recent study found that at least 37,000 children in the United States have lost a parent to Covid-19 so far.”
Julie Cerel is a professor in the University of Kentucky College of Social Work and an expert in suicide and grief.
“I am really concerned about the long-term consequences of prolonged grief,” she said referring to a kind of grief where people get stuck in their sadness, which affects their ability to live their lives.
“For many people it’s conflated with PTSD,” she said. “People haven’t been able to get the normal social support they would expect. It then puts people at risk for their own depression and suicidal ideation.”
Bluegrass Care Navigators, formerly known as Hospice of the Bluegrass, doesn’t have secret COVID grief groups, but its counseling resource officer Lindsay Kampfer, says she is worried about what’s ahead in Kentucky and the United States.
“We are on the cusp of an epidemic of ‘disenfranchised grief,’” she said, which is defined as loss that can’t be publicly acknowledged or mourned. In the old days, people suffered with the loss of an ex-spouse or a same sex partner, but today it is COVID. “I think we have been inundated with a need to pivot and change to protect ourselves, so we haven’t really been able to attenuate to the needs of mental health, grief and loss that we have sustained over the last 15 months, in terms of how it’s impacted the commonwealth. People are starting to feel relief but now that we’re out of crisis, we’re starting to experience the stress that has resonated over time.”
May is Mental Health Awareness Month
Kampfer thinks Kentucky officials need to do some of their own pivoting to mental health resources, particularly in rural areas where they may be hard to access. Another huge loss related to COVID is the huge uptick in drug overdose deaths due to isolation and despair.
“There are a multitude of secondary losses for folks outside of death,” Kampfer said. “The loss of jobs, eviction and displacement, the loss of sense of security, loss of an ability to congregate, the loss of ability to memorialize people. Not having those rituals to perform has really impacted folks in a negative way.”
Greenwald wants to enlarge WhoWeLostKy, including funding sources that would allow her to add photos and other multi-media to the site. She has applied for nonprofit status, and is also open to expanding it to other states, or possibly nationwide. In the end, she said, it’s just one part of reckoning with a huge global crisis, by simply putting names and stories to the endless numbers.
We need to start paying attention the grief crisis, said UK’s Cerel. “One of the things that people experience with grief is they feel profoundly alone,” Cerel said. “Her (Greenwald’s) site really lets people share their stories and put them out there so people can see how many people we’ve lost and how loved each one of these people were.”
Resources for Survivors of COVID-19:
https://www.wearebodypolitic.com/covid19
https://www.inspire.com/groups/covid-19/
Bereavement Resources following a loss due to COVID:
https://www.facebook.com/groups/covidlosssupport/
https://forums.grieving.com/ (has a COVID specific loss group in addition to many others)
https://www.griefincommon.com/members/search (allows you to connect with individuals who have experienced a loss similar to yours (i.e. COVID)
http://www.onlinegriefsupport.com/groups/group/search?q=covid
https://www.griefnet.org/support/SGform.html
https://www.griefhealingdiscussiongroups.com/search/?q=covid%20death&quick=1
https://www.covidgriefnetwork.org/about/ (specific to people between 20-30 who have lost a loved one to COVID)
Resource to find bereavement support groups across the US (not specific to COVID loss)
https://www.griefshare.org/findagroup
https://www.griefanonymous.com/facebook-groups/
The National Suicide Prevention Hotline is 800-273-8255.
