During the pandemic, the brain injury support group hosted by Disability Network Southwest Michigan (DNSWM) had to shift to virtual meetings — like other businesses and organizations — to prevent the spread of COVID-19.
While it was a struggle for many during the 2 1/2 years of meetings over Zoom, the silver lining was that more people could participate. When the group began to meet again in person in the fall, they decided to give people options for how they joined the weekly group.
“We have the in-person meetings, but because of what we learned through the pandemic, we are offering a hybrid version,” says Anne Kooy, a DNSWM independent living specialist and brain injury support group coordinator. “We have the online group that chimes in through Zoom, and then we have a camera in the facility that can pan the live participants and focus on who's speaking, so that's kind of fun.”
The group now has 35 to 40 participants. The brain injury (BI) support group meets 1:30-3:30 p.m. every Thursday. The meetings are held at the Disability Resource Center, 517 Crosstown Parkway in Kalamazoo.
Helps deal with disabilities
Dave Jaconette credits DNSWM’s brain injury support group for being a great help since his stroke in mid-2017, which curtailed his career as a radio program director, talk show host, and anchor.
“My stroke left me with severe deficits on my right side, which affect my walk, my balance, my speech. I can’t use my right arm and hand. I can’t drive. So the last five years have been quite a challenge,” says Jaconette, who now can only type with one finger on his left hand.
“My disabilities are very visible and very invisible at the same time. I feel both every day. The group helps me with both, by recognizing and acknowledging that these deficits challenge me every day.
“I have especially found it helpful in dealing with my relationship with my son, who was just 8 years old when I had my stroke. He has gone through a lot of trauma himself as a result, and our relationship has been full of challenges as he goes through his early teen years.”
Jaconette says members bring all kinds of life experiences to the group and find receptive members who can relate in ways that help everyone cope. There is fellowship, friendship, shared experience, laughs, tears, and community. The group is as diverse as the larger society.
“Some have had their brain injuries for decades, some for short times,” Jaconette says. “Some have had strokes, like me, some have had car crashes, some have had concussions or traumatic brain injuries. All find acceptance, some strategies for coping, and an ear willing to listen. There are lives that have been changed dramatically from what they once were, and lives that have faced certain challenges from the beginning. We take all kinds.”
The Southwest Michigan support group chapter has been growing strong for many years, according to Pete Mulder, DNSWM’s program consultant/coordinator for Social Security disability benefits. He began his work with DNSWM as a coordinator for the group.
"When I led the group, it wasn't meant to be a complaining session. We split it into two sections: activities and fun things you could say. We also brought in guest presenters to discuss the many issues a person with brain injury could be dealing with. The members appreciated the group very much," Mulder says.
The group is in partnership with the Brain Injury Association of Michigan.
Different experiences, similar emotions
Kooy began her work supporting people with traumatic brain injuries by volunteering at a camp for adults with traumatic brain injuries, or TBI. Later she joined DNSWM.
They tasked me with this support group because they thought it would be a really good fit,” she says. “I love, I love, I love the people who I've met so far that were part of the group.”
One in every 60 people living in America is living with a brain injury, or about 5.3 million Americans, according to the Brain Injury Association of America
Kooy says that while brain injuries affect different people to different degrees, everyone with TBI experiences similar emotions. Dealing with them is challenging for patients and their families, so sharing with people with similar experiences can help.
Two categories of injuries
There are two categories of brain injuries. Traumatic brain injury (TBI) is a designation for injuries sustained through blunt force trauma such as a motor vehicle accident, fall, or blow to the head, or successive concussions. Others have ABI, or acquired brain injury, which usually is medical in nature, such as through stroke, strangulation, lack of oxygen such from a drug overdose, or heart failure.
The Brain Injury Association of America and the Brain Injury Association of Michigan serve both groups.
“Symptoms are similar, and support and camaraderie are the same,” Kooy said. “But this is an important distinction and helps raise awareness. Many people don’t identify as having a brain injury who might have had an experience where CPR or AED was used – but they do indeed have one. Anytime there is a lack of oxygen to the brain, neurons die.”
The brain injury support groups provide both the opportunity to make friends and learn more about the condition. Brain injury groups across Michigan have different focuses, so potential members can choose one that’s a good fit.
The Brain Injury Association of Michigan, which coordinates the groups, notes that some groups emphasize learning about the medical condition, while others emphasize offering adaptive recreational opportunities. Some groups have meetings for patients and separate meetings for caregivers and family members, while others invite anyone interested in learning more attend the meetings. Some groups are for caregivers and family members only and not for brain injury patients.
The association can help people find a support group that is a good fit or even start one. Learn more at https://www.biami.org/
or by calling 810-229-5880.
This article is a part of the year-long series Disability Inclusion exploring the state of West Michigan’s growing disability community. The series is made possible through a partnership with Centers for Independent Living organizations across West Michigan.