Keeping Our Communities “Virtually” Connected

Back in April I wrote a Starting Point magazine article titled A New Way of Life.  In that article, I shared five strategies I cultivated to help make this time of social isolation more bearable for me, and that hopefully would be helpful to some of its readers.  

Here we are now almost 14 weeks later, Summer has arrived and...

I don’t know about you, but I never knew just how much my brain injury support group meant to me.  The CarePartners brain injury support group that I attend in Asheville, NC had to stop meeting in person in mid-March.  The group's facilitator Karen Keating and I were at National Brain Injury Awareness Day event in Washington DC on March 4th, so we missed the usual first bi-monthly support group.

A few weeks later, Governor Roy Cooper ordered people in the state of North Carolina to stay at home to slow the spread of the COVID-19 coronavirus.  Our tight-knit group of between 20 to 45 survivors and caregivers has not convened at CarePartners since.  

The beginning of this experience was very challenging for me because I am someone who prefers personal touch, including embraces and pats on the back.  I miss not being able to freely give hugs to those who accept them or to anyone who appears to need one.  As a very social and active creature, I had to make enormous adjustments to the new reality of social distancing.  This included cancelled church services, closed gyms and restaurants, and I could not see my father who lives only twenty-miles away for several months.

My support group had just been cancelled during a time when my anxiety was ramping up and feeling out of control.  Days later I had a conversation with my mentor Carole Starr, who is a fellow member of the Brain Injury Advisory Council.  She had already begun to lead virtual brain injury support groups in her area so she kindly showed me how easy it would be to set one up here.  I had never used any applications other than FaceTime before so I followed Carole’s suggestion and chose the platform Zoom.  Since this is how she had been successfully running her virtual support groups, she walked me through it step-by-step, almost “virtually” holding my hand.  

Once I felt comfortable with the technology, the next step was getting people to attend. As a former Public Relations executive, promotion is second nature to me so spreading the word about this group allowed me to dust off some old skills.  

Eighteen folks attended the inaugural group in April.  Anyone with a computer or a smartphone could attend the group remotely from the comfort of their own home.  In fact, one member even attended while fishing!

Prior to the official stay at home order, I had already become the unofficial secretary for our group, answering countless text messages about group dates and times, sharing contact information between members and doing my best to answer any other questions people had.  So it seemed natural that I would be the person to help get the ball rolling.

I have really enjoyed organizing these virtual gatherings because they give me a sense of purpose.  These meetings create an “event” for many to look forward to during an otherwise unproductive time.  This has helped me stay connected to my tribe and has offered me a way to give back to this community that I love so much. 

As of last week, just under 30 people have participated in ten virtual brain injury groups.  Now almost 14 weeks later, I feel even more connected to this special group of friends, which has actually grown!  It seems like this will be the new normal for a while.

I look forward to the day that I can give our newest members a real hug, although it is unclear when that will be safe.

Meeting virtually is a different experience for each of us.  For me it has been fulfilling.  For others the challenges (technology, kids at home, remembering when the meeting is) may have felt daunting at the beginning but in our group anyway it feels like we have never been stronger.  Because we all come to support group for different reasons and with different goals, I thought it was important to hear from others who share this “virtual” journey with me.

“The biggest reason that I join our groups is because during this time that we’re doing social distancing and can’t gather this is something that I really need.  Every time I am able to join the meeting I always finish amazing, feeling much better about myself.  My biggest challenge is forgetting about the meetings.  I don’t always remember or think about it quick enough.  Our support group is something that I will always need.  Honestly, I hate having to do the virtual meetings and I can't wait until we get to meet together again, however during this crazy time I understand that this is the best thing that we have and I thank God for it.  I know that I would be in a worse place if I was unable to join some of these meetings." - Tony Phillips, injured in June 2015

"During virtual support groups, seeing and hearing from those like me, offers me humility, freeing me to adjust my expectations. Being in the presence, although virtually, of others who face similar challenges and still aspire to be better, fills me with hope and gratitude." - Darcy Gilson, injured in November 2011

"I came to the virtual group because I needed support from people who are like me."  - Layla Hartmann, injured in 2014

"I would attend the CarePartners group if they were still meeting in person, but the only way to meet now virtually.  These groups help fill an afternoon and keep me out of trouble." - Christa Eversman, injured in January 1992

"I think the virtual format has offered many benefits and many challenges.  In some ways the togetherness is more profound in that you get a tiny glimpse of where people live, hear their dogs bark, watch their cats jump on them and observe their reactions.  The virtual format is a turn-taking format and as such it is both more artificial and also more authentic in that three people can't all talk at once and the turn-taking mandates that each member find his or her own voice and speak his or her own truth.  The downside of this is that it can lead to people delivering "prepared remarks" and pontificating on one topic or another."– Dr. Robin Smith, CarePartners Group Facilitator 

”For me, having the option of a virtual group during this time of staying home has been good.  I know from being involved with this group for years, these folks are family.  Not just to me but to each other and being able to see each other is crucial to this relationship.” -  Karen Keating, group facilitator and Western Resource Coordinator of BIANC

Once we are able to come together in-person again, we have discussed how we can keep offering this virtual format for those who may not feel comfortable in close quarters due to health concerns.  Because we are no longer confined to a physical location, we are able to offer something that we never could have done before.  Prior to learning Zoom, when a member moved away, we had to say goodbye to seeing their faces.  This had been particularly difficult for our little family.  Now we have been able to welcome back two former members who no longer reside in the Asheville area.

This otherwise isolating experience has become a lesson in finding the silver-lining in even the darkest days.  I hope everyone is able to find something that brings them comfort during this time.