Playing Defense After Traumatic Brain Injury

Playing Defense After Traumatic Brain Injury

I was accused of faking my brain injury for attention. There is no way to soften the blow of a statement like this. I took what is arguably the toughest hit of my life, had to be rushed to the nearest trauma center with cuts, bruises, broken bones and a damaged brain – and was subsequently called a fake.

As I began my second life as a brain injury survivor, I found myself having to play defense against stunningly hurtful and relationship-ending accusations. 

Brain injury is blatantly misunderstood by so many. The healing process for most injuries follows a predictable path. When I was plowed down by a car back in 2010, my orthopedist let me know that I would be in a cast for three months and that most of my pain would be gone within six months. Broken bones heal at a predictable rate. In fact, you could have set the Atomic Clock by his prediction. Six months after my accident, almost as if scripted, my physical pain ended.

But not so for my brain injury.

There is no end-date. No ah-ha moment when you wake up one day and say, “Thank God that nightmare is over!”

Our bodies heal, as do our brains. But we, as survivors, are left with unseen, invisible and silent injuries that we carry for life. They represent TBI battle scars on our collective souls.

Those who know us, and often those closest to us, see us regain our physical wellness and expect our brain injury recovery to follow in lockstep.

Kids, how’s that one working out?

My oldest son turned twenty-eight just last week, and we haven’t seen each other in years. His birthday tore open a still festering wound.

In 2011, the first year of my second life, the whispers started. “Dad is faking this whole brain injury thing for attention.” These fires were fanned by a family member no longer involved in my life until they grew from small flames to fires only a dragon could produce.

My life lay in utter desolation, withered by false accusations. We know the old TBI two-step: I looked “normal.”

The most insidious part of it all is this is that many are accused at the same point in time that they are least able to advocate for themselves, to defend against falsehoods. Early on, many of us have yet to find our footing. Our lack of the ability to meaningfully defend our injury is perceived by many as a passive admission of wellness. And to have an injury that needs to be defended is another can of worms entirely.

I, you, and anyone impacted by a TBI has much better things to do than walk through life “pretending” to be compromised.

This topic hits a raw emotional nerve with me. Can you tell?

I’ve not seen my oldest son since 2011. He drank the Kool-Aid and thinks I am a faker. His younger brother walked out of my life as well. For the first couple of years, I kept calling and texting him:

How is life?

I heard you had a new girlfriend.

I heard you moved to a new place.

You can only reach out for so long and have texts and calls unanswered before you realize that each call, each text opens the wound anew. Last week was the first time in twenty-eight years I’ve not wished him a Happy Birthday. His life is moving on, and these years are unrecoverable. What I wouldn’t give to hear his voice, to hear how his day passed, to feel my phone vibrate and see a text from him.

Later this month, his younger brother turns twenty-seven. He drank the same Kool-Aid. He moved from New Hampshire to Wisconsin last year –at least that’s what I’ve heard. He’s been gone for years as well. 

Is life after brain injury complicated?

You tell me. I already know I am not alone in this one.

As time passes, I have found that by being painfully open, others who share my fate know that they no longer travel alone. Such is the power of survivors sharing with other survivors. Thank you for being there to hear me, and please know that I am here for you in this strange reality we share.

Comments (30)

I am so sorry you have undergone such terrible trials with your children. It is so painful when people accuse us of "faking." There is no way to defend ourselves, yet our challenges should make it obvious we are impaired.

I suffered my TBI in May of 2002.  And some of my family have also said the same hurtful, very hurtful thing that I looked "fine."  After an administrative judge turned me down for SSDI on my second SSDI "attempt," I ended up in a psychiatric unit with serious suicidal thoughts.  But I am still here 6 years later.  I felt soooo depressed, and worked so hard through rehab, a rehab program which included so much assistance in helping me to "accept" the reality of my mental functioning losses secondary to my TBI .... only to have a descendent of  Atila the Hun as a SSDI judge say that I should just "get a job." 

I have learned to live in the moment a lot.  Try to distract myself as much as possible by listening to music or reading (although I couldn't read a book for the 12 years after my TBI), as I am just lonely, lonely, lonely.  I am grateful for the health that I do have .... and intend to be mindful of what I do have now ..... but honestly, am NOT desiring for "many, many years ahead for me" as I just hope my years on this earth run out when my modest IRA account runs out.  Being lonely is not fun.  Being lonely and totally impoverished is more than I can handle.  I want to live ..... not just survive.

I am tired of being on the defensive....do people really think I like this?  That I can't do the "normal" things I used too?  How do you fake something like memory loss, retention loss, comprehension loss, forgetting how to turn on the shower? I just want to be understood....remembering how I was, not everything, but knowing I am not the same is so hard...I try to keep moving and trying....Thank you for writing this...it helps....I was told by disability that while my injuries are severe they are not severe enough?  What is enough? The frustration levels are beyond anything I can deal with now.....but fight on I will...its what keeps me moving...

God bless us all wt TBI

I'm almost 18 years post TBI from a head on collision wt combined speed of near 100 mph. Recently my ex husband has taken away my custody of our 7 year old bc he claims I can't be a single mom with 2 children. My sister has abandoned me and has been cruel by informing me that I died at the time of my wreck and my life is a burden to our family. I'm depressed & feel helpless fighting for the custody of my child. I'm extremely high functioning but still have the same troubles every other TBI survivor experiences. I keep praying & will continue to rise above my feelings & move forward every single day. My heart is broken & it seems there is no legal help for a TBI mom!

I am very sorry for what happen to you. I had a hard time believing my accident in 2013 was now called a TBI, and yes everyone says I look great and thinks I am fine. I do attend therapies still and so grateful to have professionals tell me and not friends. It is a lot to believe myself. But to be accused is incredibly will . No one wants a TBI . Thank you for sharing . GLF

Hi Everyone!  I dont have a TBI but my sister does.  She was in a 4wheeler accident June 6, 2014, her partner saw the whole thing, her partner stood over her and pulled the blood clots and blood away from her airways so that she could breath.  She saved her life.  She was medivaced to Syracuse, Upstate to the brain truma unit.  She was there for three months, her partner was there every day with her and I would go down on weekends and days that I had off.  When my sister came home to her and her partners home before the accident, it was tough, all I did was cry and think that my sister will never be the same as she was on the day, before her accident (she was sitting in my office that morning talking and laughing with me), she will never be 100%.  Well she stayed with her partner for 3 months, because my parents thought that her partner was not taking care of her and not feeding her and this and that, arguing with her partner, telling her partner that they dont have to listen to the doctor.  They would take my sister for a day and let her do everything that she wanted to do, they would not discipline her, and then take her back home.  So the structure and the rules that her partner had made were just thrown out and her partner would have to start all over.  Well, now my sister is with my parents because her partner could not handle my parents anymore.  So they are no longer engaged and no longer have a relationship.  My parents do not discipline her.  She is 32 years old and they are letting her act like a 10 year old.  They eat out everyday, she buys little girls rings, jewelry and stuff that she would not have normally bought before her accident.  I could just sit down and cry, I miss her so much.  I dont know what to do.  I want to know will she remember any of this?   Will she wake up one day and ask why am I staying with you(mom and dad) and why am I not staying at my partners home?  Will she remember that she had a relationship with this person?  I have so many questions and no one to ask.  Does anyone know of a support group in St Lawrence County, New York?  Thank you for listening. 

I had a brain injury at 17...car wreck.  My life went on seemingly w/o many changes.  Then at 50 I had a mini stroke and I couldn't process numbers and I began to stutter.  One leg, one arm and my speech were not functioning well.  But when I went for medical care...I was told I had a nervous breakdown...???  Then I tried to draw short term disability thinking I would get better.  The dr sent my insurance papers in saying I was 'depressed'!!!!  I had to go back to work in 2 months because I had no income and I could not do numbers at all.  I finally left work and my son wanted to know what the hell was wrong with me.  My daughter has stood beside me...but did not truly understand.  I'm 62 now and I visited with a neurological research doctor and he explained that what happened to me had happened to others.  An early head injury can be somewhat dormant until years later something will set it off.  I had made a living all my adult life doing finance, accounting, budget, etc and writing federal grants.  Now, I really can not keep a checkbook.  My family seemed to and continues to seem to think I will get better or should be better.  I don't sleep well and sleep deprivation makes the aphysia worse.  I've accepted that I will never be the same.  It always amazes me that people want me to be the same because they think I look the same.  Stress causes me great confusion because I can't process fast enough.  I understand every one that has commented.  Blessings to all 

I honestly thought I was the only one who was accused of faking my injury. When my husband made that sharp toothed comment I couldn't even respond properly. I got out a "f*** you" about 10 minutes later. I'm 2 and a half years into recovery, and with each accomplishment there seems to be someone waiting to tell me that I should have achieved these goals months or even years ago. It's incredibly painful and isolating to go through these events, and I appreciate knowing I'm not alone in this struggle. Thank you for sharing your story. 💖

I have an employee with TBI. I really like to read this, as it helps me to understand that a simple constructive criticism, can launch a meltdown! This person is a really great guy, and an extremely hard worker. I am blessed to have him on my crew, but sruggle at times trying to figure out what I said wrong. His enthusiasm makes up for his injury, but I need this to help me figure him out at times. Thank you all for your thoughts and comments!

Thank you for sharing your story. My son suffers with an Acquired Brain Injury. He contracted Meningitis at the age of 11 and will be 30 next month. It has been a long journey for both of us with ups and downs. Apart from walking with a limp and having to wear a specially made  Lycra Glove there are no other signs that he has a Disability.. I have been told by people that they cannot see anything wrong with him and I feel that they think he is probably faking it. Nobody can understand what it is like until they are in that position. It's nice to be able to share my story..Thank you once again. And God Bless You.

Anne 

Thank you I too have lost so many, I think my boys understand now. My mother is a whole new story just a couple of days ago she actually called me restarted very hurtful!

So sorry this has happened, David. Thanks for opening your heart and sharing this difficult part of your story.

Excellent piece, David. Brave of you to write it & it will resonate with so many survivors. Our brain-injury community grows closer with posts like this. Thank you.

You are such a brave brave soul to be able to tell this story. It just doesn't seem fair that those who have been through such trauma also have to suffer more loss and to play defense in thier life. Thank you for your wite up!

I work very hard to stay a part of my dads life. I work with some individuals who have TBI. I understand the feelings you have...and there are times when i want to bail but i remember no matter how difficult he can be...he never ever bailed on me. Im sorry your sons dont understand...your brain healed...but its like a computer with a virus. It still runs, but it doesnt function like its supposed to. Some of your system files are corrupted...but you can get help...with a neurologist and. Cognitive therapist. I finally convinced my dad. ..for me, my mom, my kids...if not for himself. Have you done what ever you can do to get better? If not...arent your boys worth it?

I'm sorry that you have to deal with this. I believe you . Live it myself. Meditating and talking to God helps me cope better. I wish you all the best and I hope that you get to talk to your children soon

I am 59. My tbi was in 1959 when I was 4. I have had similar treatment in my adult years from people who proclaim they help the needy and disabled, blah, blah, blah. But have no patience with hidden disabilities. Thanks for your candid story.

Don't fret and carry on with your life with T.B.I. the best way you can life is too short !

I am in the same position as you!  I know exactly what it is like to have friends and family members say, "She looks good to me!"  I also know what it is like to have your child turn their backs on you , only because you had a life altering brain surgery!  I just want to scream, "Do you think I would really choose to be this way on purpose?  Did you forget that I had BRAIN surgery?"  What is the matter with people?  I just don't understand.

WOW David....... this hit so very close to home I thought you were actually in our house. Our daughter, Becky, sustained her TBI in 2006 under very difficult and trying circumstances.  To this day she gets so angry when people accuse her of "faking it" OR "Oh she's using that brain excuse again" OR "you look fine".  Unfortunately in 06' we really had no idea what lied ahead for her or us as a family.  Wish we would have been given a heads-up and told the hardcore truth, not that we would have believed them but they could have tried.  I love reading your daily experiences and I know we are never alone in this adventure.  For now, I just want to give you a HUGE THANK YOU for being so open and honest. Take care

I believe you and completely understand every word you have written.  My husband is still dealing, nearly 7 years later, with the fallout of being run over in a hit and run accident.  He has come far, as I expect you have as well, but life has never been the same.  I GET IT.  Wishing you strength and courage in what always feel like uncertain days - goodish ones and bad ones (I'm sure you can relate).  Find the people who understand and keep them close to you.  You may not be the same person you once were but you are still most deserving of love and respect,  Wishing you courage and peace.

I know what your saying. i have a tbi and my stepmom has even been a nurse in neuro for over 20yrs. my relationship after 14 years is over but i get pity visits and anger for talking and asking questions. my son was coming over to steal money from me. guess I was an easy target. 

 so much i dont understand when its happening.  my father wants me to buy a condo right downtown and go walking around to "get over it"  says i need to expose myself to everything that makes my daily life terrible and put into bed for 2 days with migraines, sun, glare, motion, noise. traffic. he says that will force my brain to heal.  he just doesnt get it. brother doesnt have 1 min to help me with anything,  most days I think that if this is how my life will be, i should just end it . only thing that keeps me here is my Pug, she seems to know when im in really bad shape and wont go more than 5 feet from me. typing this she just moved up to sit behind my head .  Your not alone . Im not alone. but it sure feels like it.  I started seeing a local brain injury support group. it helps a lot and I also hate that I now am part of a group that needs a support group.   i HATE going for a walk and people say, that guy is acting strange. i think hes drunk. out in the sun for 20 min and im slurring my words and stumbling around trying not to fall down, people call the cops. and I have to do my best to explain. but in my dark condo with drapes pulled i can think better and function more. sorry, i dont want to sound like this is about me. i started typing to say that I understand what your going through. I hope things improve for you .

based on personal experience with TBI, I can only say that the best way to avoid these 'false accusations', is to not even divulge anything about it to anyone. Very few people are worthy or even adept at understanding what I had gone through, and needless to say, I don't have many close friends today. This suits me fine.    TBI......you only know it if you live it

David, my brother, also named David, sustained a TBI in 1987, He had last rights given but miraculously pulled through  and was in a coma for a month. He had been working as a flagman and was hit in the head by a  speeding truck  mirror and thrown 30 feet into the air. After his 1 month stay at the hospital, he was placed into a facility to relearn how to walk, talk, feed, bathe and dress himself. His behavior bordered on the bizarre but he looked so handsome and healthy that the insurance co. refused to pay for his rehab costs until we had to beg and prove that he needed these services! This is because these reps do not understand TBI and if you don't have a broken leg in a cast...well then..".it ain't broke"! in their minds! Unfortunately there were some family members who did not comprehend the devastating changes and stated that he was "faking" it, which caused a rift in our immediate and extended families. As a Speech-Language Pathologist who was school based and working on speech and language issues, TBI issues were a whole new ballgame. It did prepare me to work with a young TBI student in school and opened my eyes and  I began reading everything I could find on TBI and EXECUTIVE Functions which helped me to inform my family and to speak at a Neuroscience Nurses Organization about the paucity of TBI info available to families in emergency waiting   rooms at that time.  My brother-in-law, a lawyer was also TBI several years later by a chunk of ice which fell off the top of a tractor trailer he was driving behind in April! It is such a tough experience for families.  Unfortunately, it is your sons' loss as they sever the ties to you out of their own misinformation and unwillingness to learn all about TBI. It is heartbreaking for you to experience what is considered (by me) a Double Loss....1. the loss of your previous PRE-TBI life and 2. the loss of your support system-from your sons. But forgive them as they clearly lack the understanding of the life-ling implications of TBI... My advice to you is to find an advocate from a TBI association who could speak with your sons by phone, skype or arrange to meet to help them build their awareness of TBI. Even folks with concussions suffer implications which  state of the art research has clearly demonstrated with brain scans.  One has only to recall the compelling article in TIME on concussions and sports from last fall! The information is there, your sons just need to be ready for it.  By the way, whenever folks would tell my family there was "nothing wrong" with David, it frustrated us until my older brother believed it as well. With my brother-in-law, his wife would get so angry because people would tell her there was nothing wrong with him yet they were not the ones living with him around the clock and walking in her shoes. Hang in there! It can be a lonely road, but you are not alone, DAVE! All good wishes. Sincerely, Betsy 

Thank you so much for sharing. I also "look normal". I had a brain tumor and subsequently had 3 brain surgeries. I found a neuropsychologist and told him I didn't have a brain injury but I didn't know who to talk to. He replied, "You had your brain opened THREE times and you don't think you have a brain injury?! It was then I found solace with someone who knew what I was going through. Someone who wouldn't say, "But you look fine" or "Get over it" or any of the other hosts of hurtful, and ridiculous comments. We are survivors damnit!  Let's wear it like a badge!

I had several brain injuries and only one adult child.  He doesn't debate my injuries, just resents them.  I haven't seen him or his family since Oct 2010.  After years of the same unanswered emails, I quit!  Nothing offered for birthdays (all in Oct), Christmas/New Years.  I had tried to cut off the pain in the past, and folded. Not this time, I'm done.

wow, well at least I am not the only one. I do also feel in some strange way...It is easier for other people to walk away then to actually deal with "Life". It is not always fair and sometimes messes with people we actually know. "you can't handle the truth"... but we are stuck with our new truth.

Thank you for sharing, everything you know as true, is true. The system adds the last disability, it takes away your independence, good luck to us all!
Karen Stroke survivor New Zealand.

Just a week ago someone whom I thought was a friend said what am I doing traveling and standing outside in the snow if I'm sick? I had brain surgery in May and I'm trying to recover. The moment I try and do a "normal activity" I'm accused of fraud. It's as if the world is all telling me I should be better by now, but when I try it's frowned upon.