10 Things People with a Brain Injury Would Like to Hear...

BrainLine
10 Things People with a Brain Injury Would Like to Hear

TBI defined by the people who are living with it ...

BrainLine asked our online community to share the things they would most like to hear from their friends and family, and the list below captures some of the many responses so generously provided by people with TBI.

Every individual’s experience with traumatic brain injury is unique, but there are many common symptoms and emotions. Anger, fear, sadness, and anxiety may be accompanied by difficulties with memory, pain, and the challenges of maintaining relationships.

We encourage you to add your own definitions in the comments section below, and to join the BrainLine community on Facebook, Twitter, YouTube, and Pinterest.


1. I'm sorry. How can I help?
– Alison

2. Please tell me what having a TBI is like. Can you tell me where I can read more about TBI?
– Melody

3. I don't know how you feel, but you are my friend and I will always be there for you.
– AmyRenee

4. I admire your willpower. You will get through this.
– Amina

5. I know I don't understand what it's like, but I will try my hardest to be patient and understanding.
– Christy

6. Take your time — we are not in a hurry.
– Lisa

7. When are you going grocery shopping, I want to go, too. Or, what yard work can I come do?
– Darla

8. I don't know what to say but I'm sorry it happened to you.
– Crystal

9. The you that is YOU hasn't changed. You just have a harder time thinking than you used to.
– Fred

10. I will bring you some delicious healthy brain foods and snacks — and come to sweep and do laundry, but don't worry, I won't stay too long.
– Heal Your Concussion

Posted on BrainLine September 30, 2013

Comments

You know, all we can do by ourself is the best we can do... EVERY DAY. It's hard isn't it?!?!

You are a lucky man... you have your wife, she is supporting you! WOW, that says a lot about her. As I'm sure you know, that is exceptional! Great for you!

I feel your pain... she deserves an unrestricted life also! By giving your continued solidarity (not feeling or giving retribution) she knows your true love because you show appreciation! I'd love to talk one-on-one or with a group as I am a survivor also. Dawn at Health South has helped so much but it is up to us to do the right thing and the best we can! Let's feel good about ourselves and happy! If there is anything I can do... Make it a great day! Randy

Get CBD oil. It will heal your brain.
I know how you feel. It tears me up to read your story. Hard to explain a tbi to someone that has not lived it. Never give up. Keep your loved ones close.

In the year 2003 I awoke after a crash in University Hospital to a wonderful loving wife, unfortunately, TBI came with the awakening. Now, after the years have gone by, TBI never goes away, and the symptoms from it have caused a strain on my wife's life too. I wish it was easier after all this time, but it isn't, I am certainly glad to still be here, but in what content, so many things do not compute, I wish I could fix myself, and be the person I used to be. Where to turn to help my wife's life be better and me stay in it too?? I have met so many people who desperately need help, but society seems to only go so far, is there someplace where we both could be helped,..I realize I cannot be the person I WAS, but maybe understand and deal with things enough to be the loving husband I used to be and for my wife, she could understand and cope too, she deserves a happier life as well. Thank you Very Much.

Getting extremely upset when asked the same question constantly, but on different days.

Just an FYI for caregivers-watch for loops-being caught in a cycle of repetition that leads nowhere. This is extremely frustrating and would be nice to have this pointed out, because most times we don't see it. I saw the above comment and had to add. I get stuck in a loop all the time. As a matter of fact that's exactly the word I use to describe it. My poor husband takes the brunt of it and I don't know how to stop it. I see 3 different doctors now. I'm over 3 years POST TBI and I am straining our relationship. How do you stop the loop??

My ex husband was a very violent and abusive man. He had head on brain injury due to an accident in a swimming pool during his teenage years. His personality greatly changed after that. I wonder... Are all reckless behavior by TBI patient purely unintentional? Does he know that he is reckless and impulsive?

There are several posts expressing a need for connection and understanding. If anyone whose friends aren't there right now wants to reach out, I would be so happy to connect with you. Even if its just email, I'd love to just talk. My name is Ross. I am a student at Arizona State University. My email is recarlto@asu.edu   

I know this is kind of weird and out there, but please don't be afraid to reach out.

When I ask for help or accompaniment for a seemingly simple task or walk to the store it would be nice to have that person say sure ok lets go rather than a selfish un-understanding no or brush off reaction as that is infuriating. Like its not embarrassing enough to need assistance for basic ass shit. Add a mental breakdown and full on embarrassment ensues.

Nobody understands me anymore. This is my third TBI. I am fifty two. One of my kids messages me this big note and I can't understand it. Other then I have been disowned. I ca not communicating back because garner mistakes get me in trouble. Everyone laughs. I me if I get a word wrong. One relative keeps saying when are you going to get better, then it all turn religious and stressful. I just wan to kill my self. I even had years of psychology treatment. I am so tired of insurance adjuster on my case bugging me. Now I have a new neurologist that is against the seizures drug I am taking I was about to walk out of the office. He didn't hear anty of my thing about the head ach after rolling a SUV no nun of that matters. All that mattered was that the drug I was taking causes weight loss and that was why I w "claiming" to be epileptic. OM fingers G. This was not my first seizure. Where are these doctors getting their licences. And that is only the frozen water droplet of the iceberg of the shit I have been going through scince 2006

You're never going to get well, you're now marked as crazy and people will take advantage of you and manipulate you for the rest of your life.  Nobody will ever give a crap about you, so go find a desolate place and hide for the rest of your miserable life.  This is just an honest truth.  Don't ever get your hopes up.

I'm so glad these comments are here. My son suffered from TBI, it's been 8 years and he's still trying to find ways to live a normal life day by day

I will not stray away from you, you are my friend . Smile, you are so special..

It would also be nice to hear, I love you

Okay first of all I have TBI supposedly.  I was in a car accident in a coma for 2 1/2  I had to learn everything over again but I do so much for everyone and when they can't find someone I find the for them I don't even live with someone and I make a suggestion and it's there I can do everything I did before my accident so why do they treat everyone with TBI the same it's getting really old I feel like I'm a kid again and what I want to look up there's nothing about what I want to look up is that because they don't know anything or everything about TBI I think it varies from person to person and also I think the person ask the way that you treated if they get treated like a kid they act like a kid to get treated like they have responsibilities they act like they have it so I think they better do a little more research on the subject case close

I received TBI following a RTA in 1972. I lost my vision speech and my left side Useless. It was worse than learning as a child as I was  5' 10" farmer and rugby player.my Vision slowly returned.It took 30 years for my speech to not stutter, this gave me more confidence and I felt less self conscious. I have to take part in exercises to continue my ability to walk with a limp,I just wonder how long I can continue.How it would be good to run. So lucky to be able to take part in outwardly normal life.Nice to hear you look fine, l understand how any disability effects you.

You are doing great! I admire your strength and courage, please help me to understand what you need me to do to help you.

Just an FYI for caregivers-watch for loops-being caught in a cycle of repetition that leads nowhere. This is extremely frustrating and would be nice to have this pointed out, because most times we don't see it.

it would be wonderful if someone said 'well done' or 'good job' after I have struggled for ages to do some simple task in their minds.  it is exhausting to accomplish anything and a kind word would mean so much to me.  all I get is 'you're too slow' or 'you need to hurry'.  people need to stop and think :)

Would be nice to hear at least one of theses... Not sure if I ever have? Living with a broken brain has been rough but I'm still going.

https://vimeo.com/channels/novavision/41094802

My acceptance of my TBI has taught me that "the old me" is gone, and to deal with me now! # 9 is not true for me!

I disagree with number nine. Because we have changed and that's the problem! Everyone wants the old you back, but that's not possible.

I was told that talking about my brain injury was victim mentality. I got TBI by domestic violence and don't know how to deal with it. It scares me

I was in the backseat and the car began to flip and my head smashed through the back window, the two in the front walked away with nothing. I woke up in the hospital forgetting my whole childhood and paralyzed. I can now walk but do not remember my childhood, just middle school and up. Since the accident all my best friends stop talking to me and seeing me, these have been life long friends but now they say I complain and cry to much. Do I want to? No. My emotions just jump on me, I wish they knew that. These times are hard for me, I used to workout everyday and school and work, now I sit at home with an IV and get pumped of fluids. I have lost 50 pounds and continue to lose. More then ever I just want my friends, but they are gone. As the old me is as well.

At the time of my injury I was a Level III Trauma Emergency Room Nurse.  Now I sit at home and have never been called by my supervisors or my Manager, it is coming on 2 months,  I was in the ICU unit of the hospital, I was there for 3 days until I was downgraded.   I have only been called by 2 nurses I work with and other nurses are telling them to ask me what I need.  If the nurses really cared they would put out an effort to talk to me and assess for themselves what I need, I sometimes cannot express what i need and also call some of my conversations, word vomit, and when I hear another you told me that yesterday I actually repeat it again every 30 minutes until i get my point across that yes I will excuse your rude behavior but that that person will have to put up with what I call "my therapy" until I feel their ignorance has been handled or in other words "reeducated".  I am proud to say I spent seven years taking care of patients in the emergency phase of their care and being their voice and their advocate to their families very sad I may not do this again,  I am a medical professional with training in this area and it is still very hard for me everyone is not alone

I suffered a TBI in 2008. I am what some call, "high functioning". People don't seem to understand how hard EVERYTHING is for me. A lot of effort goes into not looking helpless. I don't know which words could be said to make me feel better. I, most likely, would forget them pretty soon after hearing them, anyway.

I GET REALLY MAD WHEN PEOPLE SAY, WELL YOU LOOK ALRIGHT TO ME, IGNORANT BASTARDS, IF THEY SAID. I CANT IMAGINE WHAT IT MUST BE LIKE FOR YOU, BUT IF ITS ANY CONSOLATION, YOUR LOOKING QUIET WELL. IT WOULD MAKE ALL THE DIFFERENCE. GOD BLESS ANYBODY WHO IS GOING THROUGH THIS SHIT, STAY STRONG, AND TRY AND STAY POSITIVE, X DENNIS.

I have a brain injury and people try to do everything for me and do my thinking and just drive me nuts if I do things on my own then they come and baby talk me then say I do a super job and then critique what I do. Then do my house cleaning or laundry

I've been reading and learning a lot about TBI. I'm so sorry for all the hurt that my words actions have caused you. I will never get in your face or complain about things you haven't done yet. I understand that this happened to you because you fought for our Nation and were providing a great life for me and our kiddos! I promise that I will NEVER call you names or make fun of you again! I will never nag at or blame your for my problems.

This July will be 19 years  suffering from TBI.. And  only 5 years ago  I finally found a doctor  to help me with my issues.. The memory is the worst  part of  my life  like remembering  to take my meds remembering things  my wife ask me to do  and just dealing with everyday things... The  biggest  and dumbest thing  I have ever heard is ......"there isn't anything wrong with you" and "Your just as normal as  anyone else you dont have any issues."

i will walk beside you on this new journey in your life, if you would like a friend. at your pace

Do you have any paperwork that you might need help filling out?

I wish family could be more understanding. Just because it happened 12 years ago doesn't mean I'm all better. Some symptoms will never go away. Like narcolepsy anxiety etc.

When I was six months old I suffered from a TBI. I'm now twenty one and many things have been said to me and the worst one ever said to me was " your first real steps were your last real steps". That one gets me the most. It's hard for people to understand what we have gone through but that's no reason to be rude and hurtful to us.  

I would like to hear .... They finally approved your social security .... After all these years it would be great! Been A TBI Survivor since 1975 when I was 1yrs old.... makes me wanna cry now just thinking about it ....

My husband always tells me he just wants to help me have the best life I can. It is very comforting. It is not easy to be a carer or to be understanding at all times. When he is frustrated or cranky with me I remind myself that he does truly care and has been an incredible support for the past 12 years since my brain stem stroke and surgery.

I may not mention your health issues however I know you have them and I know you struggle. Please let me know when you are not coping or need to rest.

I WILL TRY TO UNDERSTAND.

That people don't believe you because you are high functioning at times and apparently look normal but they don't see the struggles you face. That people would just listen and believe what I am experiencing is very real for me.

If you take longer, can't do something as well, or need a certain thing:

"It's OK."

and

"What would you like to do today?"  

I'm over 14yrs post severe TBI. The WORST thing said to me is "you are living in a NORMAL world, you HAVE to be NORMAL!"

In addition to most all of these things, I would appreciate not being preyed upon.  Don't steal my inheritance, because it would be "wasted" on me or take my home, because you think people with disabilities don't deserve dignity, respect, nice things or a life.  Don't assault me, because you can get away with it, because the police will just lie, and say it never happened when it did, and then don't cause me more brain injury as revenge.  I have a brain injury, and even though I may not be able to organize my thoughts, I do remember clearly without hallucination or conflation.

I HATE when people tell me that I'm to high functioning for TBI. I have speech impediment, memory loss, hard time processing auditory information, have difficulty with coordination, word and reading comprehension, etc... I maybe able to have high levels of conversation and be able to walk without assistance but don't you DARE tell me I don't appear to have a TBI

Im about 20 years out from a serious tbi. im able to be a functioning member of society. i have some memory problems still, coupled with a knee injury. i have to try harder. but, thats just the way it is. i dont set unrealistic goals. i try to keep things as simple as possible. for example, my place is small. that way i dont lose track of things and its easy to keep things organized. i dont have a checking account. dont need one. its just unnecessary clutter in my mind. i write myself notes if i need to remember something. i never wanted kids or a family like that. i do ok for myself, but would struggle to support a family. i try to keep things as simple and strait forward as possible to eliminate confusion.

Follow through with your offers of help.  So many times, people say "anytime you need anything, let me know, I will be there to do whatever you need".  Yet, whenever you need them, everyone disappears. 

I believe you and that day to day struggles are real. I wish family would not get defensive and take it personally. Some days im worried about the future because at this point I dont know what to do. Its like I lost the ability to plan and my past jobs are so spuratic that nothing makes much sense. Im 25 years out and wish I had the connectivity and figuring things out again. Its hard to explain.

I am an advocate for people with brain injuries. I let them take their time when trying to do a task.  They feel so wonderful when a simple goal can be reached. Be patient ,kind and understanding. Take them on outings, the store,a walk, a meal, helping clean their house or something they enjoy.  Most  of all be patient and kind !Do not judge,make fun of or put anyone to shame. Remember  they are people too. Its never a burden to help a person with a TBI, its a joy to help friends!  Aloha

Can you tell me how you feel?

I am coming up on 15 years, this August and my FAVORITE comment has always been:  "so, are you completely recovered?"  If they only knew the journey that lasts a lifetime....

I have suffered from TBI since 2007 & am still dealing w/memory issues, since of direction & depression. I Ann able 2 return to work in a different career as before the TBI. I'm having problems getting support from my family financially due to me being on disability & not having money to purchase the vehicle to perform this job. Being told no so many times has made me stop wanting to try anymore.

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