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A Brain Injury Support Group Could Be One of the Best Things That Ever Happens to You

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Barbara J. Webster, BrainLine

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A Brain Injury Support Group Could Be One of  the Best Things That Ever Happens to You

Barbara Webster


Barbara Webster shares her experience.

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!

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.

Comments [24]

I am Jose, my son is recovering from and accident that happened 4 years ago, now he is 26 and continues to recover from a TBI. His recovery during the first three years was outstanding and he was happy; the fourth year recovery slowed down and he is tired. He thinks there is no more reason to continue fighting. He thinks people is constantly looking at him and talking about him, now he thinks people want to hurt him and this make it difficult to trust. Is there someone that can relate to what we are going through.

Apr 5th, 2017 1:05am

I'm looking for information. I was shot in the head with a .357 and received a TBI. My recovery was my focus the first few years. Now I am trying to lead a normal life and these crazy seizures have come on. Four neurologists dismissed me because they can't recreate the seizures. I had such a scary one at work yesterday, my brain felt like it was spinning out of control. Does anyone else have these? I have broken arms from falling from these seizures, yet the doctors say I'm just tired. I am tired and don't know where to look for help...

Mar 14th, 2017 11:24am

Is there a support group in Sacramento, CA? I have a family member with TBI & we could use that help. Lois

Feb 21st, 2017 2:09pm

Have had brain injury for 12 years. Fed up with forgetting stuff and getting things wrong.

Nov 19th, 2016 10:36am

I like your post. I had a condition a long time ago. I didn't approach a group; as I was young (13) but now I'm older I feel detached from society. I get a lot of prejudice despite making a good recovery. I hope I can find the same support with a group. (Scotland) Thanks

Aug 7th, 2016 2:47pm

I got a tbi after I was camping and jumped off a 60 ft cliff into water, everyone had done it years before and it's still done all the time by a lot of my family. I landed on my butt and immediately my husband knew something was wrong, I just floated up . My 9 year old son and him pulled me up a steep embankment and it took us 3 hrs to get to a hospital. I had immediate brain surgery for a torn blood vessel, subdermal hematoma. I had several shunts placed before for hydrocephalus and he said that actually saved my life. I had to go back 3 months later because the site didn't heal and they had to fix it. About six months later out of nowhere I had my first grand male seizure and they've continued to this day, over 5 years. I'm a completely different person now. A loner, depressed, and just not myself. I hate my life after that day. The only good that came from it was I had a daughter a little over a year ago and was seizure free during the pregnancy.

Jun 19th, 2016 3:27pm

I had a debilitating pneumonia affecting the cerebellum of my brain. I was in a coma for 3 weeks. I had to relearn how to walk, speak and most fine motor skills. My family ignored me pretty much after I finally came home. My husband divorced me a year later. My filters on what I said when had to be relearned! I lost most all of my friends (no one seemed to attribute any of deficiencies to this debilitating illness I guess because none of these people had ever been around anyone or personally experienced such as this! So, since I looked pretty normal (even though I could speak for a long time, I suppose they thought "I was fine"! I'm still suffering mood swings, etc. (partly bc I was physically abused by my then husband for the 27 years we were married). I have 4 grown children that pretty much ignore me! Jenna Palmer

Jun 10th, 2016 12:17pm

Good morning, my name is Dotti. I live with TBI due to an a brain injury at the age of seven. The trauma to my brain when my brother hit me on the head with a 2X$ piece of wood with nail intact. Since I can't remember my baby sister shared with me what happen. My brother was apparently trying to knock apples down off from an apple tree. Supposedly he asked me to move out of the way but I guess I didn't or the accident to my brain would never happen. After the brain injury I was rushed to the hospital but by the time my father got me there I fell unconsciousness into a coma. I laid in a coma for four months. When I came through the coma I could remember nothing. I had to learn all over again to talk, walk, even the simple things I had to learn. When I started back to school the school placed me in a special aid class because I was a slow learner which only caused more hardships in my life because I was bullied. Today, as an adult I don't make friends very well. I get frustrated and live with anxiety and behavioral mood swings. I feel I am standing outside of the family circle when they speak of family memories I can't remember many of family events. However, the memories I do remember are very blurry. The brother who caused my brain injury and brain damage we no longer have a brother/sister relationship for we haven't spoke to each other for over thirty plus years. I know I am not smart as I use to be but however since the accident to my brain occurred I feel so alone most of the time. I feel people don't understand why I have mood swings. I don't even understand why or how to fix me. I don't go to the beauty shop anymore to have my hair done because of the scar that was left they ask; How did I receive the long inch scar on my head? What happen? I am tired explaining when I can't even remember. 

May 24th, 2016 10:50am

My husband got hurt with tbi while on military maneuvers. VA is now not acknowledging it.. with the recovery and all we had to use all our savings to survive and still lost our house.. things are beginning to turn around for us financially but living with him is killing me inside. I am not allowed to have fears...I am not allowed to tease or be angry at him...but he is angry at us all the time. My husband is in there I see glimpses but the person he is most days I am beginning to hate... will I ever get my husband back? Will my children get their father back?

Apr 13th, 2016 1:00pm

My husband has had 2 head injuries and it's getting so hard to live with him . Some days I just want to leave and other days I feel sorry for him but I worry and now I'm seeing a doctor for stress .

Mar 16th, 2016 8:28am

Hello.....I just found  your support group and am hopeful I can get some information from others who  have been through what our family is now facing.  Our older son,  Robert, was a paramedic, until last June when  he was critically injured in a motorcycle accident.  He was thrown 20 feet, landing on his face....has lost his eyesight in one eye....lost the use of his right side.....broke most of the bones in his face....and has a traumatic brain injury.  He does not communicate effectively and is only now learning to feed himself.  He is also not able to take care of his daily bathroom and personal hygiene issues.

  He has been in a rehab center specializing in brain injuries. Our daughter in law is awesome and loves him very much, but he is beginning to show signs of anger and aggressiveness.  He is at a RANCHO 4 right now so we  have no idea how long this may last.  He hit his father in the chest, and has grabbed the arm of numerous attendants when they are trying to help  him.  He has always worked out and is quite strong, so this makes it worse.

  We have been told this is a necessary part of the recovery process, but our concern leads to, just how much we let him get by with and where to tell him this is not acceptable behavior.  Any suggestions or ideas anyone may have to share would be greatly appreciated.  We are in our mid/late 60's and just don't know what to do......thank you....

Dec 31st, 2015 4:48pm

Thank you for all you do for the brain-injury community, Barbara! I very much appreciated being a part of your group there in Framingham MA. I certainly made some life-long friends.

Nov 28th, 2015 6:46am

Hello I am a counselor who work with people recovering from a traumatic brain injury and I am conducting a study to take a look at rehabilitative services for people who have suffered with a TBI. I believe that we can do more to assist individuals to regain quality of life. I worked with a young man who had a severe TBI and the medical professionals did not expect him to regain consciousness or to live. He graduated with a two year degree last year and is composing music. But his recovery and services were not the typical experience. I think we can do a better job as a profession. I would like to hear from you. Please contact me at philicia.jefferson @udc.edu. I will send you information on how to share your experiences and the experiences of your love one. Thank you and I hope to hear from you.

Oct 2nd, 2015 6:53pm

I myself am trying to start a group because there really aren't any in my area of kcmo.I have a place to hold meetings I just need to figure out how to invite people and a structure for the meeting.. I also want to invite family members to educate and help them get a better understanding of what we go thru and maybe talk to each other as caregivers and help each other out. Any suggestions?

Jun 18th, 2015 2:09am

A head injury group can be very important, but also be aware that it is limited to how it is run. If you may have different...(and assistive)...informaiton to divulge it may not be accepted in a group who has never heard about it before. That was my instance in the Rusk Institute support group. The same place, where because of my mother, I was accepted to their cognitive remediation classes. Ironically the support group was in the same room where I received my classes. When I finally began divulging the assistance I was receiving it became a confrontation to the support group leader who was not aware of this type of assistance. I was quieted down quite a few times.  I had to leave the group when I realized that not only I would not be given the opportunity to explain as best as I could how the treatment worked BUT when one of my cognitive remediation doctors came to the group and never mentioned the treatment she had given me the same day...in that same room...(?)...

Mar 31st, 2015 10:19am

@ Nov 9th 2014

If you're into spiritual/religious methods, I love a book called Science & Health with Key to the Scriptures, by Mary Baker Eddy. Really helps me through my day(s).

Jan 3rd, 2015 12:22pm

So true its like you took the thoughts out of my head that I couldn't put in words for five year s now.. No one would understand unless they have lived through it way to go

Nov 30th, 2014 4:31pm

I am in need of support.  I have one of the most rare brain injuries ever documented.  I am only the 30th documented male with my brain injury called Na Menthol De Apertate (NMDA) I have no short term memory, therefor I am not allowed to drive alone and I am completely dependent on others to live "my life" I am very unhappy and need support.  If you can help, please do.

Nov 9th, 2014 8:57pm

I just "discovered" this website thanks to Carolyn Chambers at the MED in Memphis. My husband is 9 years post TBI and in that time we have struggled, with the wonderful help of family and friends, to deal with the issues. He had other mental health problems that were unaddressed before his accident, resulting in a whole range of problems which have gotten worse as he gets older (he is 65 now). I don't know if I was in denial ,shock, or just plain dense, but I have found that there were resources available that I didn't use, thinking I wasn't told about them, but it seems now that I was and just didn't use them. My husband and I went to one support group and he refused to return. Not realizing the importance of such a group, I am so sorry now that I didn't keep going. But the past is past and I am going to start attending with the next meeting. Barbara, you have made me realize the importance of meeting with others who are going through the same experiences. I wouldn't try to live a Christian life without my spiritual groups, why have I tried to live a life with TBI alone???!!! Hope now is rising in me..Thank you

Jul 23rd, 2013 1:46pm

Thank you for your dialogue on your experience with support groups. My daughter is struggling more than ever with a brain injury caused by a drunk driver 11 years ago. She tried a support group but they couldn't acknowledge her difficulties because their's were so much more sever than hers. She is now getting a second divorce, still has no insurance and cannot hold down a mainstream job--she is a professional dancer/teacher but the economy has severely impacted her career not to mention the continuing struggle with PTSD and seizures that occur if she has sensory overload. I will look into some of the resources you mentioned -- I wish I could just bring her home as she lives quite some distance from me but that has to be her decision. Thank you again. A Mom

Sep 2nd, 2012 2:07pm

Hi Barbara ,Thankyou for letting everyone know that TBIS NEED TBIS GROUPS so we can communacate in person with each other its hard to stay focus long when reading Groups would give us just what you say STEPHEN.

Feb 19th, 2012 7:21pm

Barbara\'s book Lost and Found is filled with practical strategies that can be used every day. It has already become our best seller.

Oct 26th, 2011 11:00am

Great article. Thank you. Although, I awoke from my coma and bedridden I DIDN'T FEEL alone until I thought and wondered what next. Then I went to Brain Injury Association conference where I got to listen to others that have survived astronomical odds and conditions. I didn't feel alone. My daughter is suffering late effects from a mild TBI, we also have a relative who experienced 2 horrible BRAIN INJURIES complicated by death of 2 love ones at the same time different events. I have made it my goal to bring awareness to the for front if only one person at a time. Who better to confide or trust than someone who cares and been there. I am into my 2 year of recovery, my relative has experienced his first tbi as a child growing up with the stigma. Add his recent TBI 5 years ago, no one has identified with him, only judge. My daughter experienced her TBI 2 1/2 YRS NOW AND acquired seizures and I believe PTSD. Already at retirement age I can only try and be helpful. Your words are encouraging and gives me strength.

Sep 15th, 2011 1:57am

Hi Barbara, Just wanted to say what a great article and You are a remarkable writer. I'm so blessed to know you, and all our friends at FG. Thank you for all your effort, you put into your work! It HELPS! Patricia P.

Sep 7th, 2011 7:48am

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