Yesterday I received a comment in my Facebook community, Building Your Life after Traumatic Brain Injury. In response to that comment I feel led to write this article. The jist of the comment entailed wanting to educate people.
Educate people who are not living with brain injuries to understand. To understand so that they do not continue to minimize, marginalize, dismiss and discount.
Self-Disclosure
I have and continue to experience this attitude from a significant individual. Because the impact of the traumatic brain injury is invisible, it is hard for me to communicate my deficits and limitations. It is equally hard for them to accept when I tell them I am doing the best I can and they tell me, “You are not!”
Trying to get them to understand leaves me feeling frustrated, blamed and shamed for not feeling enough.
My experience has proven that trying to get them to understand or accept what they are unable or unwilling to is like going to a hardware store looking to find bread. Accepting that they are unable to understand or accept the invisible nature of my disability has been a “hard pill” to swallow. A hard pill to swallow, so to say, when I want or would like them to understand and accept.
Letting Go of Them Getting “it”
Letting go of wanting them to understand and accept, I will admit, has been and is a hard expectation for me to let go. Trying to “educate” them on the invisible nature of my disability (because of the impact of a traumatic brain injury that I sustained in 1967 when I was 10 years old) continues to be pointless. Sad but true, because I “look normal” and have been able to succeed in many ways.
Not Much Known about Brain Injuries
When I sustained my traumatic brain injuries in 1967, at age 10, not much was known about brain injuries or rehabilitation. Consequently, I grew up with the impact of an invisibility. Because of what was not yet understood and accepted I found myself blamed, shamed and scapegoated. In the process, I developed strategies to cope through being a people pleaser, an approval seeker and a mind reader.
Insufficient Strategies
These strategies left me feeling like I needed to do more, in attempt to be more so that I would feel enough. Enough to not feel blamed, shamed and scapegoated for what I was unknowingly powerless to change.
Awareness, Acceptance and Action
But thank God through my ongoing brain injury recovery process I became aware. This awareness helped me to grow in acceptance (of what I was powerless to change) so that I could get into action. To realize that I had/have choices and I did not/do not have to spend my time and energy. Time and energy defending, answering and explaining what people are unable to understand of accept.
Insights and Awareness
Over the past 39 years I have gained some insights that helped me to grow in awareness, acceptance and action. Action that helped me to live me life in a way in which I understood the impact of my traumatic brain injury and invisible disability. Insights that have helped me to understand and accept myself when other people could not, cannot or will not understand and accept what they cannot see.
Growing in Awareness, Acceptance and the Ability to Do Something Different
My Struggle living with an Invisible Disability — Part 1
My Struggle living with an Invisible Disability — Part 2
My Struggle living with an Invisible Disability – Part 3
My Struggle living with an Invisible Disability – Part 4
Traumatic Brain Injury and the Identified Patient Part 1
Traumatic Brain Injury and the Identified Patient Part 2
Making Our Lives Magical after a Brain Injury and Stroke
Accepting Myself when Family and Friends Can Not Part 1
Accepting Myself when Family and Friends Can Not Part 2
Traumatic Brain Injury and Denial–My Perspective as a TBI Survivor
Displaced/Unresolved Sadness — Why You May be Feeling Depressed?
Discovering a “New Normal” after Experiencing a Brain Injury Part 1
Discovering a “New Normal” after Experiencing a Brain Injury Part 2
Discovering a “New Normal” after Experiencing a Brain Injury Part 3
A Very Important Question — Whose Shame are you Carrying Part 1
A Very Important Question — Whose Shame are you Carrying? Part 2
A Different Course of Action
As I grew in awareness, acceptance and was able to take a different course of action. A different course of action that helped me to reclaim parts of myself that I discard. Discarded through people pleasing, approval seeking and trying to make everyone OK with me. As I grew in awareness, acceptance and was able to take different course of action my sense of who I am emerged.
In the Process I Developed Strategies that Helped Me to:
Build Self-Esteem, Stop feeling Helpless, Grow in Self-Acceptance, Celebrate Success, Create Hope in my Life, Know Peace, Find Purpose, Fulfill Dreams, Overcome Bullying, Have a Relationship with Myself and Other People and Not Give up on and trust the Process, a Loving God and Myself
Over the course of 16 years and into my 17th year I have written articles that helped me to grow in each of the above ways. Below are 13 categories that contain articles. 2173 articles and video presentations in which I share information that encourage, motivate and empower. Encourage, motivate and empower our ability to advocate for ourselves so that we can better understand and accept ourselves.
Understand and accept ourselves living with the impact of brain injuries when other people can’t or won’t.
13 Categories of Articles and Video Presentation
Category How to Stop Feeling Helpless after Brain Injury
Category Creating Hope after Brain Injury — List of Articles
Category Self-Acceptance after a Brain Injury — List of Articles
Category Fulfilling Dreams after Brain Injury — List of Articles
Category Finding Purpose after a Brain Injury — List of Articles
Category My Journey Living with a Brain Injury — List of Articles
Category Relationships Following a Brain Injury — List of Articles
Category Overcoming Bullying after Brain Injury — List of Articles
Category Building Self-Esteem after Brain Injury — List of Articles
Category Brain Injury Recovery An Ongoing Process — List of Articles
Category Celebrating Success Following a Brain Injury — List of Articles
Category Finding and Knowing Peace after Brain Injury — List of Articles
Category Peer Support after Brain Injury — We are Not Alone — List of Articles
Like if the information is helpful Any questions, please ask. All questions are great questions and welcomed.
I would love to read all you have here. I too feel I have been walking the same path as you. Although, unfortunately devistating situations have troubled me and set me back even more since 2009. I messed up my new chance at life. Nobody gets that. I have several times. (A chance to start new)
I now feel I want to run to a deserted island (if only I could bring my grandson) and be away from everyone. I think life is lived the best through the eyes of children. Bit they make them change in ways today that are not so good.
My major problem at this moment is that I am stuck in everything I do & many emotions the “normal” person would have a hard time dealing with… never mind me with my many “unseeable side effects”
3 years ago , again , I was taken down by the “undertow” .. I consider myself a pretty good swimmer but I really think this wave is the end of me.
I cannot do this alone anymore and because I try to act and do “normal” I always get treated that way – even though I ask for help or try to explain….
I need someone or something in my corner but I will tell you – advocates arent what I thought they were and I absolutely do not feel strong enough to swim “up” again with no life vest or hand reaching out to grab hold.
I want to read it all…I want to find my perpose – I need to fix things- I dont want to stop trying. I want to keep learning ways to cope and live with this & be happy, or even just ok. I could share my experiences to help others .
Its been over 15 years since that “brain injury wave” tried to take me out.
Today / I wish it did.
Hi Deb, Sorry for the late reply. I have found for myself, over the years that nothing is a waste, only a learning opportunity. I just need to be willing to look for the lesson. And seeing and understanding the lesson (s) has taken various amounts of time. In my experience, I have found that it just takes what it takes. I have found that I need to take what I like and leave the rest. What I mean by this is that for me to wait for people to understand my journey and process of living with the impact of a brain injury is maddening. I am powerless over how people choose to see me, for whatever reason, Deb. What I have found is that brain injury recovery is about a process and a journey, not a destination. No one may understand my journey and process because I am the only one who can walk my path. What I have shared through the articles and video presentations that I have written and created may help you to have more peace on your process and journey. Peace by accepting yourself when other people can’t or won’t (for whatever reason). Here is a link to the resources that I have created on Second Chance to Live: https://secondchancetolive.org/second-chance-to-live-resources-to-create-hope-after-brain-injury/. In my experience, as I have grown in awareness, so have my acceptance, which has helped me to realize I have choices. Click on the link and look over the resources and let me know if they are a benefit to you. And, as I need to remember is that ongoing brain injury is about a process, not a destination. That is what I have found during 56 years living with the impact of a brain injury and an invisible disability. Hang in there, Deb, and don’t give up. Move will be revealed with time. Craig
Hi Deb,
Reply to your comment on April 4, 2024 to my article: https://secondchancetolive.org/2024/04/04/traumatic-brain-injury-and-wanting-people-to-understand-and-accept-us/
Sorry for the late reply. I have found for myself, over the years that nothing is a waste, only a learning opportunity. I just need to be willing to look for the lesson. And seeing and understanding the lesson (s) has taken various amounts of time. In my experience, I have found that it just takes what it takes. I have found that I need to take what I like and leave the rest. What I mean by this is that for me to wait for people to understand my journey and process of living with the impact of a brain injury is maddening. I am powerless over how people choose.
How other people chose to see me, for whatever reason. What I have found is that brain injury recovery is about a process and a journey, not a destination. No one may understand my journey and process because I am the only one who can walk my path. What I have shared through the articles and video presentations that I have written and created may help you to have more peace on your process and journey. Peace by accepting yourself when other people can’t or won’t (for whatever reason). Here is a link to the resources that I have created on Second Chance to Live: https://secondchancetolive.org/second-chance-to-live-resources-to-create-hope-after-brain-injury/.
In my experience, as I have grown in awareness, so have my acceptance, which has helped me to realize I have choices. Click on the link and look over the resources and let me know if they are a benefit to you. And, as I need to remember is that ongoing brain injury is about a process, not a destination. That is what I have found during 56 years living with the impact of a brain injury and an invisible disability.
Check out my article:
https://secondchancetolive.org/2014/10/03/developing-and-defining-a-mission-statement/
Hang in there, Deb, and don’t give up.
Trust the process, a loving God and keep learning.
Move will be revealed with time.
Craig