Having a Brain Injury Was Never the Plan!

Barbara J. Webster & the Amazing Brain Injury Survivor Support Group
Having a Brain Injury Was Never the Plan! Insights from the the Amazing Brain Injury Survivor Support Group

I never thought ...

  • It would be so hard to find the right medical care.
  • Life could change so easily and so drastically from an “invisible” injury.
  • A brain injury could result from cancer treatments.
  • It would take so long and be so difficult.
  • People would treat me differently.
  • One can “look great” but be a total disaster inside.
  • Everything, even doing the simplest things, would be so hard.
  • My professional career would end.
  • I would be so miserable without my career.
  • I’d lose control of my income at such an early age.
  • The losses would penetrate every area of my life.
  • I’d change unintentionally.
  • I wouldn’t be able to think.
  • I would face a different me.
  • I’d be unable to depend on myself consistently.
  • I’d have a hard time expressing myself or understanding what was said.
  • I’d lose control of my emotions, laugh or cry spontaneously.
  • I could lose control and become a “Tasmanian Devil,” without warning.
  • I’d lose the ability to do the things I’m passionate about.
  • I’d cling to some basic abilities, like driving.
  • I’d lose the ability to enjoy social events.
  • It would affect my marriage.
  • My family wouldn’t understand.
  • I’d lose “friends.”
  • Life would never be like it was.
  • I could feel like I was going crazy, hopeless, and want to die.
  • I would have to create a new “self.”
  • I’d find such great joy in accomplishing the simplest things

I wish I’d known ...

  • There was help for people like me much earlier.
  • There would be so many others like me.
  • How much progress I could make.
  • That I would feel better, eventually.
  • I’d find many alternate ways to get through the days.
  • How strong I could be.
  • I’d be able to laugh again.
  • I’d be accepted once again.
  • I could forgive myself.
  • A brain injury could ultimately change the course of my life for the better in many ways.

We invite you to add your thoughts in the comment section below!

By Barbara J. Webster in collaboration with the Amazing Brain Injury Survivor Support Group in Framingham, MA

Posted on BrainLine May 28, 2019.

Comments (8)

Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.

Yes funny isn't it. Mine was a car accident and the last 3.5 years fit just about all of your statement. The medical community is mostly clueless and defaults to psychiatry or psychology. They do not know either. Mine told me all anger is the same and can be managed with the same tools. Good thing she was on Skype or i would have given her a first person taste. To add insult they talk down the support groups and organizations that are run by people with personal knowledge as just being a bunch of quacks. I guess then it takes one to know one

You should link this piece to the other piece from Barbara Webster and the Framingham Support Group: What Brain Injury Survivors Want You to Know.


Thank you Barbara. How often you say the words and express the feelings I cannot.

I never, ever thought our then 27 yr old son would be completely forgotten by his numerous friends to the point he doesn't exist any longer. 3 years later they have no idea the hurt and negativity it adds to our son's daily struggles. Nor do I believe they care.

I truly hope he's doing ok. I hope he is able to cope with his new self. I got all the well wishes when I was still in a coma, no place for co workers or friends was family only at that point. Since I've been awake, (stroke/Anyerisms anniversary tomorrow morning) I really only talk to my 5 year old son when I see him, my parents, my roommate. And my dog if course which does help push me to walk every day. From someone who was more or less fearless and able to talk with anyone, my speech is nice messed up with some aphasia, cant speak for long as I get tired, constantly twitchy from I'm guessing the billion pills I take daily(not from my coffee!! Lol) and lost what feels like all my social skills. I was very lucky, fought like a mad man to get walking once I learned words and actually had an idea of what had happened. Weeks later, I could have lost half my body use, one side is pretty numb but on the outside they dont see the absolute terror in my eyes when I'm doing anything that I might screaw up or fall. I hope he finds what can push him for whatever he wants, I super kids bring around people just to listen or watch but I also get virtually wiped out from going to subway. Lots if mental processing, sights, sounds, the crushing anxiety you get from all this. If one word has resonated with your son I just hope he knows as much as it sucks and doesn't help, it's really not just you. You aren't alone. I think I know how you feel and that doesn't make it better but, you do what you can and find joy in whatever you want now. You like shiny rocks, awesome, whatever it's all yours like a new you. The way I see it, this is my new life to do what I want how I want, if that means doing nothing for a day or week, nice, I can be the person I want to be which can be supportive, helpful, non judgmental, positive. Even if it is just for me and the hardly anyone in my social circle. Don't have to care anymore.

My eyes swelled with tears as I read your list. I know each TBI is different ,yet we share in turning our traumatic setbacks into dynamic comebacks! Thank you for sharing your feelings, that is why suppport groups are beneficial for me. I belong to The Denbigh House, of Community Brain Injury Services. Yes we can, I know we can can!

"Turning our traumatic setbacks into dynamic comebacks!"

I love that so much Cpt. D. Jones!! Thank you!