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

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.

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

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'm in my 10th year adjusting to a TBI, PTSD and constant chronic pain from extensive back and neck injuries from a vehicle collision. Having extended family and friends not believe my injuries and challenges are real is like salt in a wound. When I'm in sweat-soaked sheets fighting chills, sleeping by the toilet, having nerve ablations, or standing lost in Lowes...I chuckle to myself "Yup, I'm faking this SH@#!" I'm walking by faith, and not by sight. Heaven's a Pain-Free Zone...ya just can't get there on your own terms. Never quit!

I was in a car, stopped at a cross walk, rear ended by a truck. "Only" injury was a delayed onset TBI (30 min. maybe?). Why didn't you go to the hospital in the Ambulance? Well, because they asked if I wanted to go. How dumb is that? Anyway, lost my home, lost my business and lost me. Would have liked to know there was support available from BIA and 'net.

I get depressed every time I'm done working. I have a tramantic brain injury. Of short term memory problem. People at work talk on the phone to people about me all the time. And to the guests. I work as a housekeeper at a hotel.

I love you today and tomorrow!

I had a injury, my X boyfriend hit me in the head 7 times with a fireman flash light, in the back on top where Yr memory is affected, I went to the doctor, memory loss ,throw up head aches ,dizzy ness vertical ,my mind is to fast to connect for what I'm doing at the time. Inpatient, irrationally when I get irritated., loss of family and frirnds

My son was extremely intelligent and prided himself with his above average problem solving ability. After his TBI, he lost all executive skills.we asked him to separate cans and vegetables that were mixed together in a box. He couldn't do it. He knew the difference between them but has no organizational skills to know how to put fruits on one side and vegetables on the other. He says it is like someone flips a switch and turns his brain off. He calls himself retarded. That kills me. I told him that all that intelligence is still there, he just lost the ability to express it. I tried to think how I could explain it in his terms. I told him it is the result of a physical injury. You had a serious car accident that you weren't expected to survive. You didn't break your arm or leg, you broke your brain! The most difficult thing a TBI person has to deal with is knowing that he will never be the person he was before the trauma. After hearing other people's stories I know that my son isn't the I only one who lost the people who were supposed to be his best friends. It hurts me so much to hear that they just want to remember him the way he was! I just want to shake them and tell to celebrate the fact that he beat all odds and survived... He's different... Not dead!!!!!

Here is a few I wish I heard. My reasons are beside them

I believe you have issues I cannot see...... I am tired of explaining my TBI's and what they do to me.

If you want help just ask...... Almost as bad as no help, is being suffocated with help. We need to push our limitations but as always safely. Missing a few teeth by pushing too far.

I know your not stupid or drunk..... We all had that one, your drunk/stupid etc

Well done, that was tough for you........... Bit of praise goes a long way especially in the early days

You have changed but you are still you, just a bit different than you were......... The fear of losing yourself is a base fear non survivors never understand. Just once it would have been nice to hear the truth. Better than your the same. WE KNOW WE ARE NOT, lying about it makes it worse.

What do you want to do and how can I help......... This is a hard one as you hear it said but it is not what is meant.

There are loads more but they would be a start.

I can't say I understand all of the struggles. But am an empathetic person. I was in a bicycle vs car collision at 14. A small fracture to my head. I remember the severe blinding headaches lasting 2 years. The memory problems and anger just cropping up out of nowhere. I am 57 now with an eventful life. I have been a caregiver 3 times so far and love and patience is the best I could ever do. Happiness comes in small moments not always big events. Grab onto them. And a hug is always appropriate just not always accepted.

I have TBI.....am 28 have an 8 year old son,I feel as though HE HAS MORE FREEDOM THAN ME :( This website is helping me understand things much better

I don't know.  I wish that people would talk to me.  That they would accept that im someone else.  Im so lonely but yet I cannot communicate well enough to move on.  I was a powerful self motivated person bofore but now im weak and need encouragement but get none.  Im laughed at and ignored. I just need someone to give me hope. Someone to love me.

When I am lost in my car and cannot find my where I'm going (in spite of having GPS) or cannot remember which way I turned at the last intersection,  I am frightened.  Deep breathing saves me from an instant anxiety attack.  This inability to lay down a retraceable path still interferes with my living comfortably with my disability.  Still I am grateful that I'm alive every day, and  that I can drive.  I send love and energy to both the TBI's and their caregivers out there.

"What happened to me inspired me to go into this field and do the job I do every day, to help people like you. To let you see it's not over and you can get back to where you were! I wouldn't change a thing that happened to me." -Said by me (Kasey) to my patients. I'm an 11yr TBI survivor and An Occupational Therapy Assistant.

Just seeing you smile is fantastic for me

ACCEPT THE HELP-when given to you!-that was HARD for ME to "accept" since I wanted/am a "very independent" person!:)-don't "think" more about "things" than you should-write you "a reminder post it note"-I have "post-it" notes EVERYWHERE in our house!-lol-if your reading something-HIGHLIGHT IT or "follow along" with your finger and BOOKMARK IT!(helps ME a lot)-smiles-and "tell" your caregivers "THANK YOU" verbally!....and SOMETIMES A HUG IS "APPROPRIATE" OR A "HAND SHAKE"-they do a lot too!-Marcia, a TBI "survivor"

"One cannot smell flowers from a galloping horse."....Chinese proverb....

Have a good sleep, I'll see you/ talk to you when you get up.

Its not so much what is. said as a mom of a child with brain injury, it really bugs me when people treat my child as non human, she just wants to be accepted justlike everyone else.

I should not have to be the one to that has to educate you on what it is like to live a day with my chronic and life long condition of brain injury, but I will try my best to! As I am taking it upon myself to continually learn & accept my entire life! Caring and simple compassion go a lot farther in helping me to understand what I am up against and dealing with on a daily basis, going moment by moment! Judgement, ridicule, guilt and shame are reckless tactics to control by individuals who really have no control in their lives! So they think by controlling your broken world with their numerous convictions and judgement are what makes the world go round and makes themselves feel better! When truth be told that is the farthest from the truth! It sucks to be openly honest at times, but this is our reality now! I still have support from wherever I can receive it and by those who accept and do not judge intentionally!

You are not damaged goods. You are still worthy of love and I still love you. You're not stupid and I am sorry for making you feel that way.

I don't understand your injuries or how they affect you and your family, but I believe in you enough to know they are real.