I never thought I was a “support group person.” I thought support groups were more for people who wanted to talk about their problems instead of doing something about them. In 1991, when a car skidded into mine on a slippery road and my life was turned upside down, little did I know that a support group would be one of the best things that ever happened to me. I looked okay after the accident, no obvious head wound, but on the inside I was far from okay. Prior to the accident, I was a problem-solving, multitasking, achieving mother, wife, and career woman. Now I struggled with simple every day tasks and I didn’t know why. I felt like I was going crazy. After more than two years of confusion, frustration, and despair, I attended a program at my son’s school featuring a speaker from the Brain Injury Association of Massachusetts. I remember trying to hide the tears than ran down my cheeks as I listened and realized that finally I was not alone!
Since 1995, I have had the privilege of facilitating the Brain Injury Survivor Support Group in Framingham, MA. I also work part-time for the Brain Injury Association of Massachusetts assisting other support groups. What I hear regularly from support group members is that the most valuable benefit of a support group is finding a place where you feel comfortable and can talk with people who “get it,” who truly understand your issues. What surprised me was all of the additional ways that I found a brain injury support group to be helpful.
At my support group, I discovered “strategies,” those amazing little tools that help you do things you couldn’t do otherwise. At one meeting, I was describing how much trouble I was having performing simple everyday tasks like getting dressed in the morning and making supper. A fellow survivor mentioned a “strategy” that he used to help himself — and it felt like a light bulb lit up inside my head! He said he left the cap of the shampoo bottle flipped open as a signal to himself that he had already washed his hair. Another useful suggestion was putting everything you need to leave the house in one specific spot so you always know where to find your keys, phone, sunglasses, or purse. Instead of dwelling on all of the things that I couldn’t do, I began thinking about how to do them. I love strategies! Each one feels like a little miracle to me.
And it was through the support group I discovered that there were professionals who could actually help me. I learned that speech and language therapy wasn’t just for people who had difficulty talking and that there was such a thing as cognitive rehabilitation. What a revelation! What a relief! I didn’t have to figure this out by myself with an injured brain, which clearly wasn’t working very well. Those therapists, “my earth angels,” helped me start the long process of putting my life back together. Finally, I had HOPE.
Healing from a brain injury takes a long time. My insurance coverage and therapies stopped long before I was ready. My support group helped fill the gap. Most brain injury support groups offer much more than a forum for listening and sharing. They can also provide educational, recreational, and social opportunities. They can be a place to make new friends. They can be a place to volunteer, providing a safe environment to practice skills and challenge your abilities. They are also a link to the state brain injury association, keeping you informed of activities and opportunities statewide.
I think the biggest additional benefit of participating in support group was the inspiration I received from seeing other survivors reach their goals. Time and time again, I found myself thinking ‘if they can do it, I should at least try, maybe I can be successful too’. I was afraid to try the computer; how could I remember all of the steps just to turn it on? I’ll never be able to do email! Would I be able to figure out my new digital camera before my sister’s wedding? How would I ever be able to figure out how to use a cell phone? How does that survivor work part time; I’ll never be able to do that! I achieved all these goals because I was inspired by my fellow survivors. Other support group members frequently echo my experience. I think we inspire confidence and courage in each other just by witnessing each other’s journeys.
Gradually this group of people that I never thought I would be part of, became like my extended family. I still remember the person who greeted me at those first meetings. This simple, friendly gesture was the highlight of my week, a week that was otherwise filled with failure and frustration. Through the support group, I’ve made life-long friends. What a gift!
After I had been part of the group about a year, we were about to lose our facilitator — and our support group. I still don’t know how I had the courage, but I took a leap of faith and volunteered to be the facilitator. In the beginning, I just tried to give everyone an opportunity to share. Gradually, as I felt more capable, I composed monthly newsletters and invited an occasional guest speaker. Before long, I was developing resource lists, arranging social and recreational activities, and organizing projects. Running the group became my vehicle for rehabilitation. I could work on it at home, at my own pace, when the house was quiet and I was having a “good brain day.” The more I challenged myself, the more I redeveloped my skills and promoted my own rehabilitation process. Talk about unexpected benefits.
At the support group, we were hungry for any information related to brain injury and were eager to share anything that might be useful. I began writing up notes from our meetings as well as from the workshops I attended, organizing it for myself and for future meetings, adding to it as I learned more and more. Eventually, my collection of tips, tools, and strategies became a book to help other people with brain injury. Brain injury survivors and their caregivers have a special wisdom, a wisdom gained from unique experiences, priceless to others in similar situations. My book is intended to help share this special wisdom with others who are living with brain injury and make their journey just a little bit easier.
Support groups aren’t for everyone, but everyone needs support after something as traumatic and life changing as a brain injury. To find a support group in your area, please contact your state Brain Injury Association. It could be one of the best things that ever happens to you!
Barbara Webster is the long-time facilitator of the “Amazing” Brain Injury Survivor Support Group in Framingham, MA and the support group leader liaison for the Brain Injury Association of Massachusetts. She is also the author of Lost and Found, A Survivor’s Guide for Reconstructing Life After a Brain Injury, available through Lash Publishing. See two excerpts from her book:
- Lost and Found: What Brain Injury Survivors Want You to Know
- Lost and Found: Caps, Sunglasses, and Earplugs
Under the guidance of Laura Lorenz, PhD, the “Amazing” Framingham Brain Injury Support Group has produced two PhotoVoice Projects to promote awareness about brain injury. See them here:
Written exclusively for BrainLine by Barbara J. Webster, author of Lost and Found, A Survivor’s Guide for Reconstructing Life After a Brain Injury,available through Lash & Associates Publishing.