Informal Support Groups

Posted by Reeve Staff in Life After Paralysis on May 08, 2020 # Lifestyle

By guest blogger Sheri Denkensohn-Trott

Data shows that individuals who meet regularly with others who are facing similar challenges, have a better record of recovery and an improved quality of life. There are a multitude of these collaborative groups, but all have one main message: “I Understand.” Support groups may be challenging, because of logistics such as geography, timing or sheer inaccessibility. These are not fatal barriers. YOU can create a support group, even an unstructured one.

Don’t get me wrong, I do believe in formal support groups. First, an established support group will take care of all the logistics -- space, scheduling, agendas, and the like are all handled for you. More importantly, the continuity of an ongoing, regularly scheduled group is valuable. You begin by sharing your inner thoughts and fears with strangers, but after attending on a regular basis, you come to feel their connection to your struggle. I learned this firsthand from attending my breast cancer support group. I began attending this formal group not long after I was diagnosed and still attend each month. I have grown close to many of the stalwart attendees. We gradually transitioned from attendees to “friends” when we started talking about things in life besides cancer.

My experience with Spinal Cord Injury (SCI) support was completely different. Today, there are a plethora of groups for those of us with SCI. For the newly injured, there is in-person or virtual advice on housing, education, employment, advocacy, reasonable accommodation, attendant care, travel, participation in sports and even romance. When I was injured in 1983, there was no such thing. I was the only woman with SCI at my rehabilitation center. No classes or support groups for me. Only the guys. And there were a lot of them. Computers were in their infancy and online interaction was not even on the radar. I was alone and scared.

Even after my transition to home, I had no support groups. My parents resided in a rural town. Any SCI support group was too far away. I needed an accessible vehicle and someone to drive me back and forth, waiting in the parking lot while I got my “head fix.” Sorry, not my cup of tea.

Fast forward to Washington DC, where I got my law degree, and Arlington, Virginia, where I have lived since. Finally, an environment where everything was at my fingertips. I could easily roll to the metro, grocery store, dry cleaners, and more. Most importantly, I now regularly encountered other women in wheelchairs and scooters. Because it was a rarity to see multiple women in wheelchairs in the neighborhood, we ultimately started chatting and realized we had a lot in common (besides our wheels). "Chicks in Chairs"

Our informal support group was born. What started as a “ladies’ coffee” grew into coffee, lunch, and long afternoon chats. We call ourselves “Chicks in Chairs.” We all have careers, so we meet on the weekends. A one-hour get-together lingers on, as we talk about movies, restaurants, family, and more. No matter what, we engage in animated discussion of our unique health dramas. We swap ideas about doctors, health tips for emerging issues, strategies for procuring and maintaining durable medical equipment and supplies, and a host of other must-know tidbits for us.

This group continues – when a member moves away, a new Chick usually emerges. Despite coronavirus, our meetings continue virtually and even increased as we navigate our high-risk status. This group has become a barter exchange. Forget toilet paper -- we need unique supplies that are hard to get like gloves, masks, and hospital grade wipes for our equipment. One of the group members had her husband bring me gloves because I was running low; I will return the favor if she faces shortages.

These women are now like sisters. What is so special about informal support groups? In my view, it is because you know the individuals prior to convening as a group. The informality emerges fluidly, building a solid comfort level.

My challenge to you is to form your own informal support group. You will find it to be fulfilling, fun, and a great way to connect with those who share your obstacles, challenges, hopes, and dreams.

Sheri Denkensohn-Trott sustained a spinal cord injury in 1983 and is a C4 quadriplegic. She practiced law for the Federal government for 25 years and started her own business with her husband (who also has a disability) called Happy on Wheels, LLC. Their vision is to inspire others, with and without disabilities, to live happier lives through writing, speaking, mentoring, and consulting. Sheri is a columnist for New Mobility magazine and a regular contributor to other written publications. Additionally, she is a motivational speaker, professional storyteller, and mentors students and individuals of all ages. She serves on The Advisory Board of the Rockefeller College and is also a breast cancer survivor and Ambassador for the American Cancer Society. Sheri is currently writing her first book. Sheri and her husband reside in Arlington, Virginia. You can follow them on all forms of social media, and subscribe to their newsletter by accessing their website www.happyonwheels.com.