Grieving in the Time of the Pandemic- How Cyber-organizing Can Help Communities of Grievers| Grief Support Protocols

featured image: George Romney, 1734-1802, British. undated. Kneeling Figure, Figure in a Landscape. Drawing & Watercolor, figure study. Place: Yale Center for British Art, Yale Art Gallery Collection, Gift of Mr. and Mrs. J. Richardson Dilworth, B.A. 1938, to the Yale University Art Gallery. https://library-artstor-org.libproxy.uncg.edu/asset/AYCBAIG_10313606811.

nine minute read

“Cyberorganizing, as defined in community informatics scholarship, focuses on projects that seek to embed digital technologies into community organizing so that local individuals, groups, and organizations can use digital tools for their own goals.”[1]

“Cyberorganizing, like community organizing more generally, is not about creating organizations. Rather, it is about organizing communities so that they can meet their own needs.”

The quotes above underscore what was most exciting about cyberorganizing—the ability to organize communities so that they could meet their own needs. Because of the risks of COVID-19 cyberorganizing is constrained in how to “meet” the community. With this circumstance in mind, I decided to devote my cyberorganizing efforts to the community of grievers online. The era of COVID-19 is one of widespread loss. The losses people have to the pandemic or other causes of death during the course of the pandemic mean that funerary arrangements were likely put on hold, loved ones cremated, or if buried, only graveside service and even in those situations only a select could attend. I wanted my cyberoganizing activities to help grievers find the resources they needed online to help them get through each day grieving the loss of their loved ones. I learned that grief is individual and that a person’s access to self-care, ability to take leave from work, and financial status influenced how much people could take the time to reflect on their loss. The challenge I encountered in this cyberoganizing effort dealt with the numerous kinds of loss and how to provide resources that directly spoke to specific kinds of losses. The breakthrough in my cyberorganizing efforts were the power of hashtags on social media to unite grievers who felt isolated in their grief.

            Grief is an individual process. Dr. Lucy Hone who writes about post traumatic grief and post traumatic growth found that grievers who saw their loss only in the lens of absence and centered on that absence were more apt to fall into complicated grief. Complicated grief is the level of grief that continues well beyond and becomes so severe that it interferes with a person’s ability to function in their day to day life. Dr. Hone offers what she calls a “restoration oriented grief” position that grievers can take to allow people to find new ways to RESTORE their loved ones to their lives in new ways. Hone mentions a range of practices to help grievers get through those first few months. Things like positive self-talk, meditation, breathing exercises, and a practice called hitting the table when one’s thoughts goes in damaging directions. Damaging directions includes guilt emotions, blaming oneself, or what if questions. Because acceptance of a loss is important to a grievers healing journey, the damaging thought patterns can wreak havoc on a person’s healing and cause mental anguish that is beyond words.

            It was important for me to share Lucy Hone’s book with the grief community on several mediums which included Alliance of Hope, Compassionate Friends, Good Mourning, and Instagram Grief Groups. I did not just put Hone’s words out there and tell people how right she was. I took the time to explain how my experiences were helped with her suggestions. I made sure to preface the message with, “this worked for me and I want to share it just in case it may help you.” It is always important not to be dogmatic and self-centered in grief spaces.

            What I began to learn was that the people who could take time off and could work from home had more time to reflect on their grief. They could do all the things that grief counselors suggest like journal, take nature walks, plant a garden, or create a memorial fund. For people who did not have the luxury of extended leave or had to work on the frontlines in the pandemic, their grief journey was impeded by the stress of working on top of caring for surviving family members. This information did not come out plainly. I had to listen to people’s accounts to deduce who was able to take leave and who had to go straight back to work. This brings us back to the importance of cyber organizing in helping people locate resources for themselves.

            The challenge that I confronted was the multitude of types of loss. There is loss from violence, sudden losses, suicide losses, cancer, overdoses, stillbirth, miscarriages, so many losses. And what I observed was that grievers preferred to be in community with people who had a similar kind of loss as they did. Suicide loss and loss to overdose which are both very stigmatized were some of the most isolated grief communities. What that meant was that their need to find communities online was extremely important. Those who lost loved ones to disease were still as affected by grief as those with stigmatized losses. However, society is more open to natural causes, disease so their ability to locate resources was not as limited and their ability to grieve openly was not as impacted. For those grieving pregnancy losses and stillbirth, they found that society did not count their losses as real because a relationship had not been forged by the child. This is wrong. According to grievers of this kind of loss they named their children in the womb and they want the world to know their baby’s names.

             The relation to the griever is another way to distinguish the community a griever may consult. Parents who lose children, children who lost parents, sibling loss, Grandparent loss, grandchild loss, loss of spouse or partner, friend loss—these were all very important and people grieving needed to know they were not alone in their type of loss.

            The breakthrough that I witnessed dealt with hashtags. With hashtags people could find their community on social media platforms and go through the hashtags to be in community with others experiencing similar loss. Here is a list:

  • #LifeafterLoss
  • #youngwidow
  • #widow
  • #suicideloss
  • #parentloss
  • #childloss
  • #stillbirth
  • #pregnancyloss
  • #babyloss
  • #AngelMoms
  • #AngelSon
  • #AngelDaughter
  • #lossofchild
  • #griefjourney
  • #griefwork

And there are others. But the ability to index content to a specified kind of loss allows people at their own time, at their own pace to search through these tags to be in solidarity with others.

            Grief is isolating. Those who are grieving often want to appear strong, but inside they are still hurting. Usually friends of grievers are very present in the first week or two of loss. But after a memorial people reset. They turn back to their own lives and they simply do not have the bandwidth to provide around the clock care to grieving friends. This is the reality of grief. And the moment grievers demand from people is the moment the griever realizes the limitations of their fellow humans. It was important for me to help grievers help themselves so they would not have their worlds compounded by secondary wounds—the wounds of something important as a result of the loss of a loved one. Many grievers lost friends. Some grievers reported that family members can get overburdened. One griever shared:

Hi – I just wanted to ask you guys what you think about this situation. We are obviously in very difficult time with COVID and my Mum is 75. My Mum and Dad have been down to help when the risk has been lower but there have been stretches when they haven’t. We are now in lockdown again in the UK and they were due to come down in two weeks. I said to my Mum a few weeks ago please can you decide what you want to do because I have to mentally prepare if I don’t have support

The griever is discussing how they are still needing help from their parents but was finding that because of COVID restrictions and their parent’s advanced age that they could not accommodate them as before. What this means is that grievers really need to have resources to turn to in order to get through the harder moments.

            It is at this juncture that I turn back to the work of Dr. Lucy Hone. Hone’s strategy for coping with intense grief is called resilient grieving. Post traumatic growth and restoration-oriented grief was mentioned earlier, but resilient grieving is the way that Hone classifies a type of grieving that gives agency back to the griever:

Resilience isn’t some fixed trait. It’s not elusive that some people have and some people don’t. It actually requires very ordinary processes — just the willingness to give them a go. I think we all have moments in life where our life path splits and the journey we thought we were going down takes some terrible — veers off to some terrible direction that we never anticipated and we certainly didn’t want.

It happened to me. It was awful beyond imagining. If you ever find yourself in a situation where you think there’s no way I’m coming back from this, I urge you to lean into these strategies and think again.

Lucy Hone lost her daughter Abi, Abi’s friend Ella, and Ella’s mother Sally in a car accident. The two families had planned a double vacation and they took separate cars. Hone and her husband and two sons endured the most gut-wrenching tragedy of their lives on the day they lost Abi. This is one of the main reasons that I refer my grief community to Hone—she knows what it is like. And another thing about Hone’s message—it is not religious. Many grievers have been shaken in their faith and are unsure if they believe. And of course there are many grievers who don’t do religion at all. What I learned was that most grief literature is faith based. I have no problem with though I am a Christian Mystic so my belief system is rooted more in a combination of New Age Christianity, Buddhism, and Traditional Knowledge Pathways. But for those who do not know what their beliefs are anymore after a loss, Dr. Hone’s resilient grieving allows a secular path to coping with loss.

I started this semester after losing my fourteen year old son suddenly in early August. For many days I was crushed, on the floor, crying, weeping, keening while my two cats sat near me trying to calm me. My daughter was so shaken she could not stay in the house where my son died. It was a nightmare. I could not sleep. My immediate family cared for me, but they were so grief stricken that they often were unsure how to proceed. My colleagues, my friends online, were my closest supporters. They sent flowers, food, money, cards. They donated to my son’s memorial art scholarship. They came through for me.

            I wanted to make a list of protocols for grievers:

  • Hold space. Holding space means be with the griever in a nonjudgmental way. Be there but do not push, listen, and make statements that show your support. Avoid the wording “I understand” unless you have suffered the same loss. Try to say “I am so sorry you are going through this and I am here to help you with what you need.”
  • Check in without being solicited. Grievers are exhausted, but they notice when you check in. They may be unable to respond due to traumatic intense grief, but it warms the heart.
  • Do not ask “how did they die.” Some death events are traumatic to the point where the griever cannot articulate the details without falling apart. Do not ask. If they do not mention that means it is private and they are unable to put it to words.
  • If words of support fail, provide acts of service. Send food, flowers, books, offer to give rides or to pick up things for them
  • Ask if they need an ally at funerary arrangements. This is a very morbid and cold experience especially for people new to funerary processes. Be there to hold their hand
  • Grief lasts forever. It does not go away. Grief does not get easier, grievers get stronger.

Lenstra, Noah. “Cyberorganizing Everyday Heritage in and Around Public Libraries: An Exploratory Study in Illinois.” Public Library Quarterly 33, no. 1 (2014).

Hone, Lucy. Resilient Grieving : Finding Strength and Embracing Life After a Loss That Changes Everything. New York: Experiment, 2017.

Alliance of hope, “Survivor Experience – I Am Bothered By Their Questions,” November 2, 2020, https://allianceofhope.org/survivor-experience-i-am-bothered-by-their-questions/.

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