The Real Truth About Brain Injuries

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My son is Brain Injured, I wanted to see what you have to say
Standing ovation for this, Dixie!! No part of this TBI stuff is okay. It is hellish and rather exhausting. And most times we get all settled feeling and then one incident sends it all reeling backwards. Perhaps over time, we get better and faster at reeling ourselves back in place, but it never gets easy or feels okay, so bravo for your raw truth. Before I wrote my own book about my dad's injury (17 years now) I often asked who could simply just say to me that my dad having a TBI is not okay. Today, I'm different woman than I ever thought I would be and I am beyond grateful for most, but when I'm about ready to give a talk or present on TBI, about the time when I'm double checking something in the mirror, I end up asking my reflection: why the hell did I end up here doing this? Over the years my solace has come from being "okay" with not having to know the answer. Shut the book, get down and dirty with what's real and oh my goodness do I wish us all peace. Xo ps: I'm sending this to my mom!!!
Thank you for expressing all that I have never been able to do! I look forward to your book! Gods blessing!
Well said.
Thank you! Finally! Someone else truly feeling, thinking, saying out loud exactly how I've been feeling for the past year and been terrified to admit to even myself!
Thank you for putting on paper what has been on my mind and in my heart for the last 10 years!
Wonderful article! You hit the nail on the head! I am so tired and I have no one to complain to or take any of the load! Besides if I complain, everyone thinks I am ungrateful for this miracle that I have been given! I love my husband, more than anything, but I need my marriage back and my life! And I find I lie too...me who always hated when anyone told a lie! When people ask how I am, it is either fine or I talk about how my husband is! I really feel like when my husband hit that tree three years ago, that I ceased to exist! I know my marriage and family life died! Thank you for sharing the TRUTH!
We too know the pain, but feel so blessed that we still have him. Different yes but a true sweet blessing in our lives! My heart hurts for what if, but I try to leave that behind us and enjoy each day as a gift.... He is a great person and loves us and life.....what could be wrong with that?

Dixie, things are so much more complicated than just a quick story you can read in an hour, a day, or a week. You have to live it to get it I'm afraid. I mean no disrespect to my additions to your story and my comments. Your son moved out of your 24/7 and I only pray someday my son can reach that far not only for me, but for him. You know we love you for your helpful knowledge and honesty, as you lie. As we lie, we are also honest. Sounds like a contradiction but it's not when you live it. Read on:

Her son moved out of her home, to the big city. I can only imagine how that will go, or not. He's gone and her life has a small sense of relief, for now, maybe forever if she can help it, so it seems by her story. She had a husband and 7 other kids that in some ways eases the loneliness associated with a single parent/caregiver regardless of how alone she claims she feels. After all, she is a liar by her own admission. We have to be as a defense mechanism. Even with other kids as we know there is no "real" lasting help. It's more like a chore to the others and they distance themselves and blame anything and everything they can so they don't have to actually have to deal with it, not as a full-time caregiver or even a part-time caregiver. More like, I'm going to take ( TBI'er) for a walk, or to the store, or less. A few times a week or month or a year at best. As little as possible. As in my case years pass and not even his own mother will spend one second of time with him. It hurts too much, she's too busy, it's my fault he acts the way he does, his medicine makes him crazy, the list goes on, the neglect persists and they will find a reason not to be involved no matter what.  It takes work and the one they loved is a shell of himself, mentally incapable of what they want him to be. He will never be that because he has severe permanent brain damage. No one seems to get that. Calling it a brain injury is in itself a sugar-coated description. Call it what it is for God's sake - SEVERE PERMANENT BRAIN DAMAGE. I had someone not long ago ask me what exactly that meant because his behavioral issues are out of control. Once I explained, brain injury is "severe permanent brain damage" it was as if a light bulb went off. Oh, he said, now I get it. It was not his fault. He was uneducated at what TBI is, like 99.999% of the population. Oh yes we/caregivers/ I continue myself to live in denial in many ways he will and can get better. At what point does a parent quit or give up? I see small fractional improvements that never seem to last long but some do. As an everyday caregiver we notice every tiny thing and pray for those small improvements. That's all we have. We can't just quit. If we did then what would happen to this person, our child, one we love. His friends, sisters and own mother are busy and never looked out for him and never will. The system has very few, or nothing to offer. Most programs that my son has tried want a person who is docile, maybe a concussion, and an easy case but not someone that really requires you watch them and are difficult to deal with. More medicine to make them zombie-like is the answer isn't it? No, if they are medicated to that point what chance do they have to ever use that damaged brain and learn, to make improvements? That option is diminished greatly. We press forward, pray and be thankful for every day even though it's unbearable at times.

I'm a mere caregiver that has experienced every single thing you write about and more.

Thank you Dixie.

Your honesty is so refreshing! We caregivers need to stick together if for nothing else but to have an understanding place to vent real fears, frustrations, and exhaustion. One pain I know most mothers feel, as I do, that was not totally addressed is the pain I experience seeing my child (mine is now 20, TBI at 16) recognize their deficits, to see their pain when friends leave them behind, not to be able to understand why people don't have the patience to listen to her, to be her friend. The anguish you feel as a parent when they say they don't want to live anymore, to see them cry themselves to fitful sleep. Watching them suffer is, truly for me, is the hardest thing to do, day after day after day. All that Dixie has written, I want to shout out to the world along with the pain I suffer for the pain my daughter suffers every day.
Very powerful, moving article. Thank you for writing and sharing your thoughts. Remember we are only human. I wish your son the best of luck in his new chapter, but I also hope you can find some happiness in your new chapter. You and your husband deserve that peace and so much more!
The depths visited by TBI Survivors and their loved ones is like no other journey on this planet. Only those who have traveled the deep waters within can ever fully know the agony of a defeated time and person that once was. Thank you for your gifted talent by touching countless survivors and their loved ones by sharing your experience, strength and hope. John Snyder, TBI SURVIVOR, 24 years Post......
I'm so relieved to see someone step up and talk about the reality of brain injury. I too got sick of the candy coated support groups, the lies, the lies I have had to tell and still do 14 years post injury. I had no one to care for me....my family turned away...my friends stopped answering the phone. I lived in danger and in a blur everyday dealing with deep depression and pain. I finally got sick of all the bull crap and wrote my own book called Neuro Warrior available at fastpencil.com. It candy coats nothing. I tell it like it is. I know you may get sick of reading the books but I'm throwing it out there if anyone is interested. 14 years post injury and it's still like its day two. Tomorrow I'll wake up and lie some more and bitch in private and then go out and look normal because I know that people simply don't understand what it's like to truly live with TBI.....
Wouldn't it be wonderful if we could all get together and just be because no words are needed when we are all dealing with the same stuff. My husband is a brain aneurysm survivor and I, too, lie. I'm tired of all the cliches and all the compliments for staying. If I could, I would run but I feel an obligation to care for him. So we are entering our 8th year. Life goes on, lying to myself doesn't have to.

thank you for your article it was insightful. I had a TBI or ABI whichever acronym you like to call it as a 10-year-old and was not supposed to live like your son. Fortunately, I have made a good recovery and I live a life that to me is full and active and fulfilling, not without its challenges and the cycle of depression and anxiety that I ride never goes away.

It took approx 20 years before I could say that I was fully whole again, but since then I have studied three Masters degrees and a graduate certificate and worked at some very challenging jobs.

I have tried hard to understand the impact my accident and life has had on my family and my parents but am unable because to do so diminishes my achievements. Perhaps my life and that of my family would have been different but I don't know that for sure. Just like I can't say your life would have been any different if your son's accident hadn't have happened.

I have worked hard to accepts what occurred and I wake up most mornings knowing that in many ways my life is better because I have had a mostly loving family about me. It is my turn to give back to my aging parents now and I am learning how hard it is to do what they did but it is my life and I have to go on and accept it.

I wanted to say thank you for sharing your road is hard but don't mourn what you son may have lost celebrate what he has and has achieved because that it all we have and all we know.

Incredible sharing of what many of us feel and never say out loud! Thanks for validating the caregivers who put everything aside for the TBI journey!
But...You are strong and you have made such an amazing difference for all of us who do not know how to put our thoughts into words. I too have an adult daughter who suffered a TBI. She has drop seizures and can never live alone. Her TBI was when she was 6 and know she is 35. It has been a long hard road and now that she is older and so are we, my worry goes to those who will have to care for her when I am gone. Thank you so much for expressing What I never could! Well said! God bless you and your family! xo
It is comforting to read all of these testimonials to the difficulty in caring for a loved one who has suffered a TBI. I didn't even know what one was before my son's accident. The medical care today for initial TBI trauma is incredible and, for those of us that chose to let our loved ones continue living after initial injury, are left to deal with the consequences not knowing what the final outcome would/will be. The choice (we) made was out of pure love and partial ignorance of what lay ahead. This "life" we as a family now witness is not what any "normal" family should have to. My son is now a total care person that cannot talk and is fed via g-tube. The care is endless and the daily heartache of never being able to have "him" with us like he used to be is the hardest for me to accept. I miss him so deeply. Carla

Thank you Dixie - for sharing in such an honest, raw, emotional way. this is the part no one wants to acknowledge and the only way to heal is to look at the dark side of it, the costs of what is happening to the caregiver as well as the survivor. I don't know how to ease your pain, other than to listen & affirm. I too, don't have the answers, I keep asking God for something closer to normal, something a little more focused on my desires and wants - which I think you are also asking for. I pray that you have some peace and that, with time & patience, you will find a new sense of peace & purpose for yourself, now that things have changed for you & your son. It sounds like you could use a vacation, until you don't need a vacation - just time to reflect & figure out this new Dixie and the "real" next step. Again, thank you for sharing the "not so perfect" reality, no shouting it - we need to hear this part too, for validation and to remind others about the hidden costs of BI. The surface is not always what it seems...... we need to do more than survive, we need to thrive too. I mean, caregivers need to find their hopes, dreams and a new way to thrive & live life again......the secondary trauma can be more devastating than the initial injury. take care, Dixie..... I hope the best is waiting for you soon :)

Julie

Bravo for being so brave in telling "like it is"! I have lived with my brother's brain injury for 46 years now and yet, in my experience, it is not his brain injury that is the problem. It is the physiatrists and neuropsychologists, lawyers, facilities CEO's, case managers, guardians, co-guardians, guardian ad litums that are shameful people in not having any compassion nor empathy in all that we and my family and my brother have gone through. It is the horrendous care in these institutions and supposed community-based centers, the making fun of me, the making fun of my brother.

And to top it off recently the medical doctor and owner of this last facility and the attorney (who I fired back in 2006 when I had to get the Dept of Protection and Advocacy involved to remove him for abuse/neglect and damages at the last place) who is now guardian seeking over 19,000 out of my brother's estate for my filing for a third time with the Human Rights Committee and the doctor's medical board for horrendous treatment of both of us per the Commissioner and LongTerm Care Ombudsman!

Am I fed up with this industry? You bet I am. I am fed up with their lies, their deceit, their sociopathic personas, their fame come from using insurance money to promote themselves. You bet I am fed up to here!

Time to tell the truth and I admire you for doing this!

Thank you, thank you, thank you! My daughter survived and is doing very, very well. The truth, however, is that my daughter is a completely different human being and I miss the girl she used to be SO much. Her brother lost his sister and never truly accepted the person she is now. Our family that was once so very tight, is fractured and will never, ever be the same again. I am beyond grateful for my daughter's life, but deeply cringing when she says the wrong thing, explaining her invisible disability, and endlessly supporting her and all the while I am desperately fearing her irrational plans may never be realized. It weighs so heavily. She wants a job, she goes and gets a job, she can't possibly be quickly trained for that job, and then she cries when she is quickly replaced, usually because someone who had the job before her came back and they need to be loyal to them. If she holds the job for any length of time, eventually someone new moves in as supervisor and they "release her." She refuses to talk about her disabilities and won't let me discuss them either. The bottom line is do I love my life now, NO, HELL NO, but how would I like my life without her? Not much. We have fun together, we are each other's best friend and we are the only two in this world who know her true struggle; we don't talk about it, but we know it.
Thank you you hit everything I feel every day. Since my sons avm rupture! Thank you prayers and strength to everyone

My husband survived a cerebral aneurysm that ruptured. This type of cerebral accident has a 2% survival rate. After 31 days in ICU and 2 weeks in a step-down unit, he was sent home. No rehab, and with no idea of what to expect. I was told he should have died and to be thankful for each day. I don't know how to deal with the mood swings, depression the anger he feels. He has no desire to get out of his recliner to bathe, to walk the dogs or just to live. I work full time and manage the inside and outside of our home pay bills, shop, cook do laundry. At times worked 3 jobs to keep our daughter in college.

My oldest child is in the military and is being medically discharged. He has a TBI and severe PTSD. He is so angry and feels like his country has abandoned him. What do say to that? The care he is getting is substandard at best.

So when I read your book Cindy I could not relate to the positive tone. I relate to this post because to me it is a more realistic picture of what it is like to be a caregiver for anyone with a brain injury. I don't want anyone to feel sorry for me, but to know what the brain injured have to deal with when on the outside they look normal. Sometimes it is an invisible disease.

I hope we continue to reach out to one and other and to pray for each other.

Marianne

There is a part of me that gets some comfort in knowing this TBI marathon is not just happening to me and my husband and sons. It is the elder one who is 10 years post car accident. The effect on our family is deep and constant. The anxiety which caused his alcohol dependency has resulted post TBI in some paranoia and delusions. These cause us great stress and cannot be reasoned away. Antipsychotic medication helps but does not erase these beliefs. He is able to function to some extent in the real world, but when stressed reverts to his fears and anger at people he believes are against him. There is not much in the literature about the double whammy of TBI and mental illness. I have read many articles and books to help me get through these two issues. The ones that have helped me the most are two books: A Three Dog Life by Abigail Thomas, I Am Not Sick, I Don't Need Help by Xavier Amador, and an article that was in American Scholar magazine by Bethany Vaccaro entitled "Shock Waves". I am happy to add this column by Dixie Coskie to this list that helps strengthen me for the many years ahead.
Thank you for writing about the real truth about brain injuries. In my view, there are partial answers for a lucky few (vs no answers ever). These partial answers fall into a very narrow and small group (not everyone) who responds to the right FDA approved medicine (for the brain/mind). Examples are Dilantin (Jack Dreyfus) and Tirend (C. Thomas Wild) and the writings by Walter C. Alvarez about nerves in collision. If you are unaware of the previous examples, it's because the news media/the powers that be/or the idea they tend to fall into a narrow area of interest (brain concussions/brain injuries/whatever) that few know about them. Brain concussions tend to upset the logic/value systems of various non-profit religions which can view everything in terms of light/darkness, yin yang (my view). Brain concussions do not upset the logic/value system of a few non-profit religions which view all as only light (aka Divine Love/Infinite Intelligence)(my view). There are answers to some brain injuries; however, some of those answers may not be ones a person wants to hear.
I can understand everything you say. Stay strong
Thank you for your honesty! I have wondered if others were living what we were. My son was injured in 2010 and is also a miracle. The loneliness, depression, paranoia, and anger are so intense. Noone addresses these issues and it needs to be.

08.08.2014 Wow alright, I myself have had a TBI, I was hit on an open road by my own car, a Morris Marina, the guys that hit me should not have taken it, there was no newspaper report or police investigation, I was wandering with no shoes and socks on, getting hit on a main road going to Kaiangaroa Forest, I was taken to Rotorua hospital where I had a hole drilled through my head to relieve pressure, then flown to Auckland hospital for another 5 holes drilled and I am thankful they did that, the brain does swell and some dr's don't bother to relieve as such. I was in a coma for 10, the first 3 days when I was in isolation, my dad's brother in law came to see me and walked telling my mum that I would be up and walking within a month, yet on the 9th day five Dr's got together with my families and said that I only had a little bit of brain activity and if I do pull through, I would be a vegetable and they wanted permission to turn my life support off, no my mum said and yah! I woke up the next day and started talking. within 3 weeks I was flown to Blenheim, my hometown and was out of the hospital, the Dr's wanted me to take 11 pills a day and I told mum no way, I didn't even get a headache, they also wanted me to wear an epileptic bracelet, again no way! This all happened 21 years ago and I have isolated myself, once people know you have a brain injury, they treat you way different. I am thankful to be alive, I don't know why this happened and I have lost a lot, I go to church and love it, but would probably have taken my life if I didn't go. I am wanting to massage to help people heal without relying on medication, although I am not a Dr and would never interfere or persuade someone to go off their medication. Yes, I did heal physically in one month but am still very emotional and angry about what has happened. God Bless you, Dixie, I never really got to talk about my injury, professional's would say to me, wow you don't look like you've had an accident, or try to tell me what part of my brain was injured and why I was like I was! Don't talk about an injury just cause you studied it, listen to someone who has actually had one is my quote to professionals!

Lyree

This could be also written for patients with brain diseases like Alzheimer, natural pressure hydrocephalus, and other brain conditions, and their caregivers.
Thank you really for real truth. Like breath of fresh air.
Thank you for sharing
Thank you!

As a shock trauma nurse who has "helped" many families through the initial part of the brain injury, I find this particularly refreshing and brutally honest. Brain injuries forever alter their personality, thought process and perceptions often leaving an unrecognizable human behind. They are of our flesh and blood but at the same time not humanly familiar. The sad truth is that the person we knew as a son, father, mother, lover, husband or wife, has died at the point of impact---this is a new person that is left. And sadly, sometimes we don't like this new person.....and that's ok. Forgive yourself and find out how to love differently, safely. Brain injuries continue to injure beyond the impact, like ripples in a pond when the surface is broken.

Great article.
Thank you for sharing your true thoughts and feelings. As a family dealing with a slowly degenerating brain disease and many other challenges your words resonate in my heart.
I admire your honesty. As an OT who works with survivors and their families in the community, post acute recovery, I see this very sentiment in the words and hearts of many of my families, but in the battle to survive the day, the week, the months and years, it does not often get said. Blessings to you and all survivors & families for all that you everyday.
I am a TBI survivor, try being on the other side the person injured.
Our family also travels that broken path of post TBI. I cling to my Lord and deal with all the negative emotions. I will be glad when its over.
It is so refreshing to read/hear that others feel as I do. The "good for you for staying" attitude sucks. If I could run, I would.
Ah! The raw, bare bones of it!! Thank you Dixie. I too lie but what I'd really like to do is shout...WHY US, WHY ME, WHAT IF....This happens to other people not me. I want this nightmare over, for it not to have happened. I want my beautiful, vibrant, feisty, intelligent and caring daughter back. I worry reach day how we will go on but we do go on. We will go on and I will continue to lie. And lie. And lie.
Ah! Finally the raw bare bones of it all!! Thank you Dixie! I too lie but what I'd really like to do is shout...WHY US, WHY ME, WHAT IF... This happens to someone else not to us. I know she's a miracle, a survivor but I just want my beautiful, vibrant, intelligent and feisty daughter back. I want this nightmare to be over, to never have happened. I worry every day how we will carry on, how we will get through this but we will. And I will continue to lie and lie and lie.......
Thank you. Your words are the echoes of my heart...things I have rarely uttered and barely let myself acknowledge. Thank you for having the courage to say them. In some ways, it's a relief . In the brief few moments while reading them, I could just let go of the façade.

I have Traumatic Brain Injury (TBI), PTSD, possibly Chronic Traumatic Encephalopathy (CTE) and repeated head injuries symptoms from football. I'm my own caregiver. My wife died in 97', with a 5 and 6 year to raise.

I knew that something was beginning to happen me, but nobody would listen. Thank "God " I have respectful and intelligent young men now. One 24, in the U.S. Navy, and the other 23, on a scholarship in Mech Eng at Texas A&M.

The NFLPCF has tried to help, but they say I'm too complex and won't deal with me anymore.

All that you went through has to get around the TBI community. You're a brave and mighty powerful woman. I live with mom who 82 with Parkinson. My stepdad waits on her hand and foot. He's out of town now, so now it's my job. It's rare to have understanding caregivers and children. Great article.

Scott Boucher
Retired TBI and CTE Athletes Foundation
www.RTCAF.org

Thank you for being so honest. It is refreshing. I wish you, your son and your family all the best.

Thank you for writing about this... I have a TBI which I acquired as a result of a brain hemorrhage and brain surgery due to an AVM (Arterial Vein Malformation) rupture. The ignorance about my TBI, my "invisible disability" can be maddening at times. However, after 11 years, I am FINALLY learning to accept what I cannot change and to chalk other's attitudes and judgments about my brain injury as sheer ignorance and arrogance.

The good news is that I DO continue to get better and improve every day... even after 12 years! My disability has changed MY OWN ATTITUDE about others and THEIR disabilities too... I think that I used to "assume" that I understood what others experience, even if I didn't articulate that, I think at some level, I believed it.

Today/Now, I am much more compassionate and I try very hard to remind myself that I really DON'T KNOW what others are experiencing/ going through and to just try and have "compassion"...

Our only 2 sons were in an accident 2 years ago. Our oldest son Aaron didn't survive. Steven miraculously survived sustaining a severe TBI. We experienced majory double trauma and can relate to so much of what you shared. Thanks for sharing...truly hit home in so many ways.

At times, I have become isolated from others, so it can be awkward when I feel entrapped by friends or acquaintances as they sometimes persist on asking curious questions when all the while I’m secretly thinking that they could never, ever, ever possibly understand the magnitude of the real answers.

This really resonated with me. It's easier to say "fine" than to try to describe the loss of a person STILL IN THE ROOM WITH YOU to someone who cannot possibly comprehend that.

Thank you, Dixie. Your well written comments are echoed by so many of us living with the effects of TBI. I've lived with a TBI for almost 20 years, and because I push myself and fake "normal" well, few know the devastating effects it has had on me. Everything takes ten times the effort it did before the injury and the emotional and physical toll gets exhausting. The loss of what you once were is an ache that never goes away; and something that only those who have been touched by TBI seem to understand. Yes, it could have been much worse and I was "lucky" to have survived with enough brain cells to bypass the damaged areas and activate unused areas to help me function as a relatively intelligent person rather than leaving me too damaged. I am thankful for that. It's just difficult dealing with all the challenges of TBI on a day to day basis when it's so invisible to others. Like you, Dixie, I get tired of throwing out the automatic responses that I'm fine, I can handle it, everything's ok, etc. TBI changes everything forever and not in positive ways. If you dig deep enough, you may find a few silver linings, but the negatives far outweigh those few positives. All you can do it make the best of what life has handed you and go from there. It doesn't have to take all the joy out of life, but it does make you dig deeper to find it.

Again, thank you Dixie for voicing our reality.

I've always said that brain injury has no silver lining. I'm glad to hear someone else say it.

I wrote from the heart, without the need to be right or wrong, of what it is like as a mother, living with, advocating for a son with TBI. While the book was well received in some quarters, others were amazed at some of my real thoughts. Today I am glad my son survived but it was many years down the track before I came to this point. Recently I have sustained a brain injury myself, albeit mine is mild in comparison. One has no idea what it is like from the perspective of the patient until you sustain injury. Coping with the physical impairments is easy, cognitive deficits, fatigue, and overload is something else. It is extremely difficult when you look good therefore you are good.

Mind you most folk are not keen to read about the truth, one must not be so negative. Ironically I have been fortunate that from previous experience I know what to expect, some treatments needed, but it is hard advocating for such things yourself.

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