Although an incomplete quad for 31 years, I only attended my first support group at Craig Hospital about three years ago. I’ve long recognized the importance of peer support during rehab and have been fortunate enough to learn from some true trailblazers throughout the years, but I didn’t have access to a group of my own. This changed when a pair of Craig staff members — social worker Kathy Hulse and psychologist Lisa Payne — launched one. Having lost several chair pals to the Great Beyond, I knew I needed peers to help me separate reality from my tendency toward drama and hyperbole — and so I joined.
Our group ranges from people who are a few months post-rehab to a member who was injured more than 50 years ago. Some weeks we have well over 200 years of SCI/D experience in the room. We’re chemists, social workers, supervisors, engineers, students, teachers, volunteers, miners, counselors and ne’er-do-wells who come together weekly to seek and offer support. Some spouses and other family caregivers attend as well, and they offer a totally different and often instructive perspective. Once a month the men and women meet separately. Somehow everyone pretty much gets their needs met and grows in the process.
We normally have a dozen or more wheelers in each weekly session and we try to establish a topic for the hour to keep us focused and prevent a decline into a drama-laden bitch session. The magic comes as we see how our challenges and obstacles are similar to those experienced by other group members, and then experiment with a variety of successful solutions they have employed.
‘The Group Lets Me See Myself in a Different Light.’
Jon Forbes, 50, joined the group after our co-leader repeatedly suggested he attend. Forbes, a T6 paraplegic, was coming off a particularly rough losing streak. Following years of neuropathic pain, he underwent two successful dorsal root entry zone surgeries, only to have it return when the hardware that had been stabilizing his back broke down. The unrelenting agony returned and remains.
He was deputy treasurer of the state of Colorado when both his chronic pain and the pressure of the position got to him. “I lost it,” he says. “And told the entire board of the $40 billion public employee pension fund in Colorado to ‘go fuck themselves’ in a publicly-recorded meeting. I was totally prepared to be fired, but not for the public flogging I would take from the print and TV media.”
The combination of relentless neuropathic pain, terrible publicity, no job prospects, the death of his beloved cat and the loss of his dream home all crashed together to create an overwhelming crisis. Suicide was his plan. That’s when he joined the group.
After a while Forbes began to see aspects of his own situation while listening to other people’s problems. In time, as he began identifying with his fellow group members, he felt less isolated and more connected to them. “I started looking at myself in a different light, and I shined that light on some other more meaningful possibilities,” he says. “My general mood began to change, and I noticed I was a bit more optimistic. Something was working and that was good enough.”
He values the openness of his fellow group members and the comfort of being encouraged to talk through his problems with good, honest folk. “The group gives me information that is either relevant to myself or my mom, who’s dealing with severe Parkinson’s,” he says. “Someday, I will be able to measure what I bring to the group, but for now, I’m feeling a bit selfish.”
‘I Found Out I Wasn’t the Only Person in a Wheelchair.’
Robbin Smith, 63, didn’t know what to expect after a bad steroid injection caused her T10 paraplegia and says she spent two years in tears.
“Initially I was quiet, afraid of how others might react. I was terribly ashamed and certain everyone was looking at me,” she says. Children staring didn’t bother her until their parents yanked them away as if she was contagious. And although she knew her family loved her, she didn’t like herself very much.
Then Ed, her husband of four decades, talked her into checking out the group. “Those first couple of years, she didn’t want to be alive,” says Ed, who also attends the weekly sessions.
After six or eight months, when Robbin felt safe enough to talk, her fellow group members listened and understood where she was coming from. “They opened my eyes to how good I have it,” she says. “I didn’t lose friends, but made friends. Ed didn’t leave me. Instead, he left a job he loved to take care of me. I’m not sure I could do what he does.”
Robbin says joining the group and being around other wheelchair users facing similar problems was the best thing she’s ever done. She discovered her peers are funny, loving and serious. She receives and welcomes support, and finds purpose in being able to offer something that might help someone else. As a bonus, she learns her own compassion deepens when she is able to realize other people’s pain.
She keeps coming back every week, despite a 45-minute drive each way.
‘Some of You Have Seen It All, But My Eyes Are Just Opening Up.’
Kirsten Rosvall, a C6 quadriplegic due to a surgical mishap in late 2018, discovered the group when it appeared on her outpatient schedule during a routine PT/OT visit not long after discharge. Since Rosvall, 56, has a master’s in social work and has clocked about 15 years in childhood protective services, she’s had positive experiences with groups and decided to check this one out.
She describes herself as initially clueless to wheelchair culture and says she is taking it all in. “I think there’s this ‘outer culture’ of generally-shared wheelchair experiences and an ‘inner culture’ that comes with many years of experience. I’m in that outer culture, usually listening and learning,” she says. “Most of this is still pretty new to me and I don’t get everything people talk about. Some have seen it all, but my eyes are just opening up.”
Rosvall brings vocational insights along with her own shared wheelchair experiences. “What I like most is what I learn and how everyone shares information about anything and everything,” she says. “And I like the energy and knowledge that Kathy and Lisa bring. Mostly group is a great place to grow, and I’ve got a lot to learn.
She appreciates the humor and support the group offers. “It’s also nice to touch base with people each week and to have that connection in this time of isolation,” she says.
‘People Are Not Only Accepted, But Their Differences Are Honored.’
Dorie Gerhardt comes to group with all the lessons gained by 54 years of wheeling. She was a day shy of 15 when an automobile accident caused her C5-6 injury.
When Hulse suggested Gerhardt check out the group, she did and has returned most every week since. “I loved that first session. I saw immediately what Kathy described,” she says. “People’s willingness to share and not judge makes this group special. I’ve made new friends, and I’m with people who understand what I —what we all — deal with, and there’s always something to take home.”
Gerhardt appreciates the atmosphere of camaraderie, nonjudgment and total acceptance. “Actually, everyone is not only accepted, but their differences are honored. That makes for a very powerful support system. I’ve got my family and my church family,” she says. “And now I have my group family.”
‘I Learn a Great Deal That I Know I’ll Be Able to Use Every Single Day.’
Sean Smith was recovering from Guillain-Barré syndrome at Craig when his social worker suggested he attend a session. “I knew immediately I was in the right place,” says Smith. “I call it class because I learn so much.”
At 51, Smith is the group’s Jeff Spicoli: He’s quick with a joke or laugh and, like Fast Times at Ridgemont High’s famous stoner, not shy about recommending the benefits of THC for stress relief. He can also be quite serious. “What I learn is often something I can use every single day, like how to pick stuff up off the floor without falling out of my chair.”
Smith appreciates the peace of mind he gets from the group. “There’s plenty to worry about, but I’ve learned to just take care of business,” he says. “There are people in group who do that, and I appreciate the no-nonsense aspect they bring. I’m so lucky to be part of it.”
Smith was the head of maintenance for an apartment complex before his illness and appreciates the group’s diversity of experience. “We’ve all been knocked down, and this group is helping me stand like a man again,” he says.
‘The Feeling of Community and Connectedness Keeps Me Coming Back.’
Being a part of group has reaffirmed that I need to be with people who, regardless of background, age, gender, education or financial station, all share the profound, life-changing and potentially-transformative experience of paralysis. We come together weekly to seek or lend support to each other, and it’s a privilege to join with my peers in creating an atmosphere safe enough for us to cry, laugh, and offer and receive acceptance.
Our group is free of judgment, yet heavy with encouragement. I need their support to deal with my latest set of rapids. I gain some measure of succor by sitting silently for an hour with these folks; it’s even better for me when I talk.
It hardly matters whether you are five months or five decades post discharge, everyone runs into bumps in the road and can use some help, advice and support. And we should always welcome any opportunity to offer a shoulder to lean on.
The Group’s Secret Sauce For Success
I’ve seen my share of groups, both as a leader and now as a participant, and I’ve learned that there are a few aspects all successful ones share. Participants must commit to confidentiality — what’s said in group stays in group. Every person interviewed spoke of the safety that commitment created. They also valued the support given and being in a nonjudgmental space. Each person spoke of the welcoming atmosphere, as well as the opportunity to learn and share. These simple ground rules create a certain formality and an atmosphere that facilitates growth.
“I’ve done various groups over the years and this one has a secret sauce,” says co-leader Kathy Hulse, a social worker at Craig Hospital. “It’s not cliquey, not judgmental, and not centered on one specific person or persons.”
She says the group’s been instrumental in helping newly-injured folks adapt and she also appreciates the perspectives of caregivers and spouses. “After 31 years I continue to be impressed with how resilient people are.”
Craig Hospital psychologist and co-leader Lisa Payne often suggests to people who have been recently discharged from rehab that they try a support group. “Most initially say no, that they’re not ‘group people,’” she says. ”If they come a few times, they see there’s no pressure to talk and that they are free to just listen. Soon many of them get hooked and become regular, vocal members.”
** This post was originally published on https://www.newmobility.com/2020/08/sci-peer-support/