Turn Text Only Off

Page Utilities

 
BrainLine Kids is a service of WETA logoCBIRT logo
 

The Real Truth About Brain Injuries

Comments [137]

Dixie Coskie, for BrainLine

The Real Truth About Brain Injuries

Dixie Coskie

Multimedia

Dear Diary,

I’m ready to take a step back, to take time to contemplate, to reflect and to finally tell the truth.

I’m finally ready to put down my book, which has been all too consuming. To discretely slam or just close the pages, consciously smothering the content. Purposely, shutting out all the noise, the battering, the heartache, the horror, the never ending memories and the trauma of living with brain injury.

Yes, my son was one of the lucky ones. He survived.

But at what costs?

Over the years, I have read many, many books about brain injury, most trying to impart a positive twist to its horrors. And, even in the midst of my own chaos, I surprised myself by writing my own memoir which a publisher actually printed. Like other authors, I tried to write to give hope to others, which at the time was my intent. But my intention now is to write a final chapter without an audience in mind. With no anticipation that anyone will read it so that I can give myself permission to just write sincerely with no expectations to always have to be the strong one or to always have to be the one to try to see and share the silver lining amidst the tragedies.

I want to be unguarded. Truthful. Real.

There is no silver lining.

Yes, in my memoir, I wrote about my son Paul’s miraculous recovery from a traumatic brain injury. Do not get me wrong, it is an amazing story and he is an incredible being and will always be my hero. But in my book, I only wrote about his first year of recovery and there have been many, many more years. And there have been other thoughts and real struggles that have never put down on paper.

Most people, publishers, and readers only want to hear the “happy ending” parts to a survivor’s story, grasping for some kind of hope that their loved one could possibly — with determination and perseverance — conquer, too. So that is what I wrote about, partly because I needed that glimmer of hope myself. It has been almost five years since my books have been published, 15 years since Paul’s bike and the SUV collided. Did I really just type “collided”? I need to edit that to read: smashed, shattered, and crashed into our lives, changing everything forever. Wait, I need to also scratch out everything because I just looked in the dictionary and it say’s “everything” means the whole thing. Obviously, Paul is not a thing, but brain injury has changed the core of who he is and was and what his future could have been. The impact from brain trauma has altered Paul and tainted our entire family, derailing the “happily living after” course we had been on.

People often ask me if it was therapeutic for me to write about our family’s TBI “journey.” I usually answer with my standard comment, “Yes, very healing!”  And again, I usually promptly answer when others asked, “How are you, Paul, and your family?” and without hesitation I respond, “Fine thank you and you?”

I lie, often.

The reality of reliving, writing, editing and bringing visualizations and memories to life and ink to paper has depleted my spirit. And man, what about all the caregiving and caregiving and caregiving? Caregiving is exhausting! We have had to readjust to Paul’s needs as his situation has changed, which it has many times. There was the immediate aftermath of injury in the intensive care unit, the coma, the uncertainty of life and death. Then later, in the hospital, trying to grasp all that was happening, then the prolonged stay in a rehab setting not knowing if our son would ever walk or talk again. And then there was his return home when the list became even longer while monitoring his changing physical and emotional needs, cognitive issues and strategies, safety concerns, meal planning and preparation, medications, possible seizures, bathing, dressing, and personal care, structuring and planning activities, transporting to and from therapies, dealing with adaptive equipment, moods and more and more and more. The caregiving continued with his e-v-e-n-t-u-a-l reintegration back into the community and school trying to set up a special program to meet all his needs and later attending an unusual higher education program that would focus also on life skills and then working with so many organizations to help him find possible opportunities for employment. And the long-term issues of constantly advocating and advocating and advocating, seeking out possible resources for Paul and our family. And the finances, and especially all the paperwork and legal and insurance issues. And as anyone who is the midst of brain injury knows, the list is endless — and that’s only the list for taking care of the injured person. What about taking care of other family members or siblings and their activities? What about the emotional needs? What about the basics of daily living such as shopping, cooking, laundry, childcare, house work and yard work? And what about me? What about my needs and comforts, my job, my friends, my marriage, my emotional and physical well being?

Well, the reality is, I have written books, articles, and speeches. I have given presentations trying to bring awareness to this devastating injury, trying to put that optimistic twist to every piece that I write, every presentation that I give. But in doing so, I have stifled real thoughts, real emotions, and I have kept my secrets to myself.

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. Besides, they just think I’m nuts anyway for having eight children. Yes, eight. (Maybe I am crazy?) But today I’m ready to take a step back, to take a moment to contemplate, to reflect and to finally tell the truth. It’s time for me to not sugarcoat brain injuries, to not pretend that this whole experience has not unhinged me or my husband and our children. How I wish that I could write or talk about something else, maybe a mystery novel or a love story or a comedy. I have not really laughed for a long, long time despite all the small and big victories we have fought for. The numbness that comes with trauma coats everything.    

So, here is the truth about brain injury from a mother’s point of view, my point of view.

People often ask how am I. I’m tired! Really, really tired. And like other TBI caregivers, I never thought I would ever end up in an ICU, or rehabilitation hospital, or have the need to attend a brain injury conference, let alone be a caregiver for my son Paul who sustained his injury almost 15 years ago, when a car struck him while he was riding his bike — without a helmet.

I’m also neurotic! Now, whenever I see a kid without a helmet on, I scream out my car window, “Wear a helmet, you idiot!” which usually sends the kid tumbling. Anyway… how am I? I guess I’m mad sometimes that Paul was not wearing a helmet and for bringing traumatic brain injury into our lives. I guess at times I also feel guilty. I feel guilty for feeling mad, guilty for not being able to protect my son, guilty that I can’t change what has happened, guilty that I miss our previous way of life when my children’s biggest concern for the day used to be whether they were going to play on a swing or eat a peanut butter sandwich. Guilty that I cannot help them or be fully present. Guilty that I don’t have time for myself and my friends, and I’m worried that my husband and I talk and have sex so infrequently; we have become distant, like strangers.

I guess if you ask me how I am, I could say I’m often preoccupied, stressed, and depressed. I could say that I had absolutely no idea when I took my wedding vows years and years ago that my husband and I would really have to live out the “better or worse part,” let alone think that we would have ever had eight children! If anyone had ever truly told me about the teenage years or that I’d be dealing with traumatic brain injury, I would have run from that alter in a heartbeat. But the reality is that my children are everything to me and I fear for their safety and their emotional, physical, spiritual, and mental well-being. I miss our family’s carefree days. I miss having fun. I’m also burdened by domestic chores — cleaning, carpooling, cooking. Boy, do I hate to cook, and the kids always know when the oven is on because the smoke alarm is usually blaring. And I hate that Paul had a brain injury! I get sad, really sad and grief-stricken sometimes to have had to mourn the loss of what could have been. I hate all the medical appointments and therapies, and that Paul has had to struggle so much, and that our family has had to endure an abundance of heartache. My heart hurts, and most days my mind does, too. I cannot comprehend all we have been through, all the changes. I cannot understand why some friends and extended family members have not educated themselves about TBI and distanced themselves from us.

How am I? I’m often confused by all the medical words, equipment, procedures, and often the lack of communication between us lay people and the professionals. I’m dumbfounded that I feel like I’m reinventing the wheel day after day to try to find help and resources for my son and my family. How am I? How am I really? At times, very lonely; caregiving can be isolating, demanding, never ending and really, really hard. Sometimes, I have a big pity party for myself. It’s usually while driving in my car when I’m alone. Sometimes I scream at the top of my lungs, “Why did this happen, why Paul, why our son, why our family?” and usually this feels really good, except when I’m stuck at a red light and I realize that I have forgotten to put my windows up. How am I? Numb. Some days I don’t want to get out of bed to face the day, to face the reality that traumatic brain injury happened to me, to my son, to our family.

I would be lying if I told anyone that I have never thought about buying a one-way ticket to Hawaii. I would be lying if I mentioned that we have lived through our son’s brain injury without any scars or battle wounds. And I would be lying if I admitted that I love all the endless caregiving.

I lie a lot. I write books, articles, and speeches, and I frequently encounter people in the brain injury world at conferences and hear of their struggles and accomplishments and the many, many “miracles” like Paul’s recovery. But mostly, I am suffocated with the sadness, the grief, and the hopelessness that these families and survivors have to try to cope with. It reminds me that I’m one of them. Yet I’m supposed to be the pillar, the expert, the one who has all the answers.

I have no answers. There are none.

There is no silver lining to brain injuries. Brain injury does not go away. And can I say that I also hate the word “plateau”? I hate all the clichés I have heard over the years and even at times have repeated: Time heals all wounds. You’ve come so far. You’re son/daughter is such a miracle/blessing. Your family is so amazing and an inspiration to us all. You’re so strong. Good always comes out of bad. There are lessons to be learned through every experience. God works in mysterious ways. You’re so lucky your son is verbal or ambulatory or does not look any different. Your marriage and family must be so strong to have survived the unthinkable!

I’m finally ready to put my book down and to stop writing, at least for now. I’m ready to discreetly slam, or just close the pages, consciously smothering the content and clichés, purposely shutting out all the noise, the battering, the heartache, the horror, the never ending memories and the trauma of living with brain injury.

Our son who is now 26 has moved out of our “one-horse town” and our old colonial home to reside in the big city. Despite lasting repercussions and deficits from his crash, it is now time for Paul to revel in all his hard work and write the next chapter to his own life.

And it is time for me to begin to give myself permission to heal and to live.

Written exclusively for BrainLine by Dixie Coskie. Dixie is an award winning author who is passionate about her roles as a mother of eight and an advocate for all children and the disabled. Her books and talks inspire others with the ultimate triumph of hope and love.

Read a clip from Dixie's memoir, Unthinkable, here.

Click here to learn more about Dixie.

Comments [137]

I'm sorry but I couldn't continue reading because it is very heartbreaking. July of 2013 my kids were getting ice-cream when my son almost 10, my daughter 12 ft behind him, and me watching from the front porch. A 21 y/o driver that I never saw coming hit my son. He wasn't breathing and I remembering grabbing my daughter and praying. After what felt like forever the color returned to his ear. I thanked God that I had a chance. I forgave anyone who wronged me including the driver. My son was in a coma, had half of his skull removed, and a kid known for his smile couldn't until much later. I put a rock in my pocket and thanked God all day and night for healing, as if it was already given to him. About day 4 I didn't want to listen to 90% of his doctors opinion so I didn't. (What did it matter?) I focus on the good and my son always said "If you believe, you receive." ( He used it for Santa lol but I have used it almost 4 years) I get upset when people tell me that I need to stop him from saying Mom so much. ( I prayed to hear the word Mom and I'm so grateful considering the bleeding was over the speech and short term memory. Besides it is usually to say Mom, I love you) I tell him he can quit, but I will Never give up. I am his voice and my daughter is a huge help everyone else has moved on. I wish I could help everyone on here. I can tell you its not easy but Everything is Possible. Yes it is heartbreaking at times, but the greater the challenge the sweeter the victory. I'm going through battle fatigue myself just to get people to stop doing me wrong. I've given up my life (Yes plenty of people tell me I shouldn't but as an unlicensed speech, Motivational, physical, occupational, researcher, etc with OCD & ADD LOL) its the hand I was dealt. I'm in the middle of finding pictures online for motivation and encouragement to hang on the wall. I never imagined this and didn't know you would need to learn how to hold your head up, walk, talk, think, act, and things people don't even think about. If you are playing a game of spades and you were dealt diamonds and clubs you can still win the game. It's never too late. I'm sorry for the spouses who threw in the towel. My ex left me for my friend and I didn't have a brain injury. I was devastated but I thank God for that too LOL. Funny when he wanted me back... ummmm how about NO. Look at Nick Vujicic that was born without arms or legs and overcame his inability ( Sorry, I don't like the word disability ). He lives an independent, rich, fulfilling, and “ridiculously good” life while serving as a role model for anyone seeking true happiness. He is an internationally successful motivational speaker, that spreads faith worldwide. Try YouTube motivational speaker videos all day but please Don't give up. It's tough but possible. You never know what God has planned! At home I have used Oils, homemade devices. bilateral beats, an Electronic muscle stimulator ( That could be a call to DCF lol JK) some $400 oxygen thing at target, even had to use yo momma jokes for speech, vitamin E and fish oil, and the list go on and on. I've seen people on hospice with a funeral planned and 15 yrs later talk about it. Miracles happen daily so today can be your turn! Hopefully God helps out with the Golden Retriever (Just like the one at the hospital) Service/Therapy dog I want for him and a HBO home unit because the 33k dog and 8k for the oxygen treatment is not in my $200 budget.... Hopefully the dog can drive, cook and clean too. IDK Anyone with a connection PLEASE Contact me. 

I Pray this message helps even one person!! XOXO Jamie

Apr 25th, 2017 11:38pm

Thank you so much for sharing that.  It is SO GOOD to finally hear someone talk about the bad side of things, about all the bad that comes along with a TBI.  You could literally have written this piece about me and my life.  My husband suffered a VERY BAD TBI about 11 years ago, and we had NO IDEA what was ahead of us.  This trial and error process has been a very hard one for us both.  We were only kids when this happened, so we didn't know anything about any of this.  
But now sitting here, dealing with these same struggles every day, its hard.  It gets overwhelming.  I love my husband until the very end of time, but some times i wonder how we will get through just another day, yet alone the rest of our lives.

Thank you for sharing your story. 

Dec 1st, 2016 1:28pm

It was 7 years for us on 9/13/16.  Although we do not experience the exact same issues, thank you for writing this.  My son is in Long Term Care.  He is now 40 and he needs care 24/7.  He is hemiplegic and gets no therapy since medicare says he must be in a geriatric nursing home.  He only had 1 1/2 yrs of brain trauma care.  He previously was an Ironman Triathlete.  His wife divorced him and my ex-husband has moved on, as has his older brother.  I have no family support to speak of.  I became his legal guardian.  The guilt I feel that he must be in the nursing home is tremendous.  Of course I see him several times a week.  My life has changed forever and i have become a grieving introvert.  No one I know wants to talk about him.  I think of you often Dixie.  You have every damn right to be overwhelmed.  I'm sorry this happened to your son and I'm sorry it happened to you.  Sending lots of love.......

Nov 30th, 2016 10:02am

I sit in my world of white noise, confusion and feel I am enveloped in black cotton wool. I hear myself ranting at everyone over trivial matters and can't stop. I hate the indecision and confusion I go through every day. I lie to everyone "I'm fine no problem" but my world is like a black and white movie but played too fast.

Most of the time I try to stay positive but find myself apologising for my TBI. I hate it with a passion, tried to grieve but find myself looking back to the good service engineer, the compassionate manager, the brilliant salary and all the travel. Oh well life goes on and on and on.

Nov 30th, 2016 2:37am

my name is mark, our stories are so close its chilling and the way you feel is how i have not been able to express to my wife, she had a massive stroke at 22 years old, 14 years ago, after giving birth to our second child, our 1st and 2nd are 10 months apart, it has been a roller coaster in free wheel mode with no brakes. after 4 months sleeping on an icu floor, a left leg amputation, multiple surgeries to remove the clots her stay at the hospital was over, but our war had just begun. i never knew what the feeling was i just knew it was there, i tried everything the doctors recommended and stuff i thought out on my own. it completely consumed me, my life was her and the kids and the house and the doctors and the medicine we couldn't afford but got by any means necessary, the food we couldn't afford the relationship we couldn't have, my wife and my kids.i felt so alone so far removed from joy, the simple joy in life, my light was gone. and as the saying goes" it gets worse before it gets better" , i had my accident 2 years ago, almost killed me, a steel pole wrapped in concrete rolled off my truck at work and hit me in the back, fractured vertebrae in my neck, shattered my shoulder blade into about 18 pieces, broke ribs, lacerated lung and lacerations over the left side of my face. as i lay there gurgling my own blood my first thought was is she going to be able to be there for me like i was for her, i thought how crass, but then well i did it for her. my hospital stay and next few days were a dream state. now 2 years later. i struggle with being a husband and caretaker to my wife, a father to my kids and my own caretaker, nobody sees it, no one understands it, all they know is dads not the same, hes changed, hes the problem. the same people who i did the best i could for cant even give me a break, i say i'm fine i say alls well, shes doing great they are great kids, and as always i get lost in the shuffle, peoples sniffles supersede my ptsd, family get togethers and parties are more important then my migraines and anxiety. i've been to counseling and have gone the route of explaining some of my triggers and how i handle them seeking acceptance and understanding and instead am met with anger and bitterness, you need to change, your the problem, your the cause of what's wrong with the family, i feel so bad cause i knew we would have issues having one parent with a tbi and physical limitations but know both of us are going through it and even worse i feel i'm doing it alone by myself, i love my wife, i love my kids, but at this point i don't know if i have the strength to keep fighting this battle on four fronts! i've endured 14 years of this, one day at a time, one mountain at a time, one ocean at a time while keeping the 3 of them afloat, i'm just so tired! the home situation is not getting any better and i honestly think if i remove myself i may be able to make myself a better me which can make me a better dad and maybe a better friend then a husband!

Nov 30th, 2016 1:55am

Thank you for your honest writing. Our family tries to just "embrace the suck". But it's exhausting. Let those feelings out. There may be no "silver lining " but honestly expressing yourself hopefully makes your heart a little lighter in the moment. Thank you for sharing.

Nov 29th, 2016 10:12pm

Thank you, I felt like you were telling my story the difference is I only have 3 children and I was in the middle of a nasty divorce. My son was 14 and on his brand new bike. This March it will be 12yrs. Yes, hes a miracle. He was dead at the scene and coded more times then I can remember before arriving by helicopter. I needed this today. My heart breaks for him daily. He knows he's different then most 25yr olds he's also aware he could be much worse. Again, I thank you for saying the things I've only thought.

Nov 29th, 2016 7:43pm

Thank you for sharing your personal story. My son was in a motorcycle accident seven months ago, and he was wearing a helmet. His injury were severed. Everything you talked about touched me personally. And I'm just getting started, I still have a long way to go. Your experience let me know I'm not alone. Thank you so much. 

Nov 29th, 2016 7:01pm

February 13, 1994.   The day that changed my life forever.   My 4 yr old son and I were victims of a 70 mph (combined speed), head-on collision.  My gut was severed at the common bile duct and my son suffered extensive TBI.  Frontal, temporal, occipital lobe sheering and a brain stem hemorrhage.  Truly by the grace of G-d we have survived - transcending any noticeable debilitating physical injury.  Bona fide miracles - both of us. But it's been a very, VERY long, hard road for both of us.  He went through puberty at 8 yrs old - something about the pituitary having been affected somehow.  He has no noticeable defects (unless you really get to know him and discover his lack of common sense and empathy).  He holds a job.  Shows up everyday like clock work.   I know, I know, I'm very blessed.   But what I didn't tell you is that he has a volatile temper (if you happen to hit one of his many buttons).  He doesn't seem to know how to truly love.   His world revolves around himself.  He can't manage money.   He spends every penny and then looks to my wallet.  His comfort is his primary concern.   He's 26 now and just impulsively moved to Florida (from our home in Connecticut).  Here's where it REALLY hurts - he got himself a wonderful dog - a rescue -almost 3 years ago.   He treats the dog like a possession and not like a friend. He's a control freak.   His dad and I have spent most of the time with his dog and he really only had him on weekends and evenings.  So the little dog got lots of attention, walks, runs, good food, and play time with us.   Now he is taking the poor dog to Florida.   FYI - he won't take the dog out to do his business nearly often enough.   He won't buy treats for the dog or allow him to wear the sweater and jacket I bought for him to wear in the cold up here in CT. He is already talking about going on long excursions in Florida and leaving the little dog with his roommates (4 young guys in a band.)   I can't imagine what's in store for this dog my husband and I love so very much.   If I step in and take him, I will never see my son again.  I will, most likely, get arrested in the process.  I'm sure of it.   However I can't stand by and watch his cold, controlling behavior and  negligence of this poor little guy.  He's coming back in two weeks with the dog and I need to have a plan in place by then. 

I know that short of a miracle, my son will never be able to give or understand unconditional love, selflessness, or altruism.   

I believe that my son has actually begun to devolve in his TBI recovery because I remember he was not nearly as evil ten years ago.  Something has changed.   He uses the little dog as a weapon because he knows I love him so.  I have to come to terms with losing my son to save the dog from a lonely, neglected life.   

At this point, I'm ready to do it.  

Tired of being extorted in CT. 

Nov 24th, 2016 7:49pm

Hello, I enjoyed reading this. I am too dealing and struggling with my sons TBI. It had been a year since his accident. We are all still adjusting. I too felt and went through all of what you wrote. It's always nice to hear other family's stories.

Nov 10th, 2016 10:00pm

Thank you for sharing your story.  Your story touched my heart and made me cry -  probably because most everything you have said rings true for our family.  My son, 18, was in a serious car accident in December (fell asleep at the wheel).  It is so heartbreaking when you look at your child as this is not the life you had dreamed for them.  I am suffering as well from PTSD ,as we were at the scene of his accident (took over an hour to extract him) .  When he didn't come home we went looking for him, only to finally have his girlfriend's parents find him 4.5 hrs after the accident happened on a rural road - no street lights as we live in the country (5 minutes from home).  I live with the guilt daily that we drove past him and didn't see him down there.  To be unable to find your child and to finally get the call that he was found but they were not sure if he was alive is one of the worst things a parent can experience.  He finds it hard to make new friends (as they do not understand and he doesn't like telling them the details) and I to feel a disconnect with my friends and family as they don't understand TBI.  He walks, talks and looks the same - but he isn't - people do not understand it.  Some days I just want to scream and throw things (and sometimes I do).  This journey is a roller coaster ride - you just never know what a day will bring.  God Bless all of you caregivers and survivors.

Nov 9th, 2016 2:42pm

OMG you have said the truth and hit the nail on its head!.  I have been through so much misery over the years with my husband.It is so not rainbows and unicorns because they survived.  I am dealing with the financial fallout he caused and its actually a relief he is in a nursing home after a new TBI from falling after a seizure while on blood thinners. His bad self is finally gone.  I too have fantasized  about running away.  I have a passport and credit cards. I am however way too responsible and love my dog and grown kids too much.  Also very tired of hearing how strong I am.  I'm just practical.

Sep 1st, 2016 10:41pm

You said how "you wished to write a Love story"? Well, I can tell you right now, You just DID it! And it is Amazing! Your heart and soul just poured out every ounce of love that you and your entire family have endured since TBI entered your life. It is a true love story, and testament of faith and strength that your family has endured and has hung in there thru this. I once heard that people are best at writing what they know, and You and I both have walked this path, and I believe that sharing the challenges of this intense love through our writing is helpful to others . . . and to ourselves. 

Aug 27th, 2016 5:59pm

Thank you for saying so concisely many things that I have thought but never put to paper.  I had to laugh about the one way ticket to Hawaii.  Mine is to be a hermit in a hut on a beach in Mexico.  I say it all the time, and I preface it with "I'm only half joking".

Jun 25th, 2016 10:30am

I am new to the TBI world, my husband sustained his injury in November 2015.  Thank you for your honesty - I thought I was the only person feeling this way, like I was selfish and should just be happy he survived. Knowing that others feel the same way gives me strength, and makes me feel a little less alone.  Thank you.

May 1st, 2016 12:47am

I am recovering from multiple tbi's & cptsd on welfare in Uk, no support & a daughter who probably has tbi & cptsd. I am trying to write & need some sort of job but hard to know what. We have a very difficult relationship esp since the tbi & the house etc is too much as is school etc. I do not drink or see anyone as all alcoholics & nasty. I find everything hard. It is such a challenge at home & out in world. The GP has been abusive etc. I need to get a life which is not find a boyfriend as everyone including state & my daughter is saying. I hate the responsibility of parenting & the house. I wish I had a different life but not sure what at moment & so difficult to organise anything or make decisions.

Feb 28th, 2016 5:44pm

There has to be more out there for family's who support family members with Brain injuries. It's hard dealing with it on any level and the frustration they entail on a daily basis. My son is in his second year of PCS and no sign of him returning to his normal life, work and going out with friends. His friends seldom come around, as he doesn't want to engage in there conversation about work etc. He finds it depressing. So he chooses to stay in and play video games most of the night and day. We need support groups to help the care givers to get through this. Tough love has helped and meditation and Reiki has helped me the mom through this journey.

Jan 12th, 2016 1:59pm

Being a survivor of a moderate to severe T.B.I....I truly was appalled at the descriptive word "tainted" used to describe how you're son's tragedy affected the rest of the family, sweet.

Jan 10th, 2016 3:26am

I've had multiple concussions, with the worst being a sub dural and gcs of 6. I was also boxing at that time and had to quit. Many head injuries were before I even started boxing though and I never got knocked out or even a headache. After the gcs of 6 though I boxed secretly and every punch caused severe pain, headache and jarring feeling. Now its 26yrs later I'm 45 and am in incredible shape. I want one more try at it! If I would have told the doctors of my previous history before I started boxing they wouldn't have allowed me to ever start in the 1st place so I may fly under the radar and monitor myself. Maybe it's been long enough with no head injuries now. I loved it so much!

Nov 15th, 2015 9:23pm

I will add my thanks to your brutal honesty.  My husband acquired a brain injury 12 yrs ago.  I hate it.  I miss my friend, my partner, my lover. He is very functional now but he is not the man I married and never will be again.  Gone are the long talks, understanding the financial problems, fixing and maintaining things in our home, etc, as the list goes on and on.  I am a jack-of-all-trades now-I can't afford to hire people, and family and friends are "too busy".  But isn't it great when they always say "if you need anything, just call!"  Most of all I miss a hug now and then.  I need someone to tell me I'm doing a good job, that's it's OK not to like my life.  I have 4 grown, married children whom I love dearly, but still don't "get it".  Oh, they say they do, but they don't.  If they did they wouldn't criticize me.  I'm not allowed to be mad, depressed, angry, or God forbid if I lose my patience. No one lives it 24/7 like we do. I should be planning my retirement now, not wondering how many more decades I have to work and will anyone keep me that long!  Where are my friends?  Where is my smile?  I don't laugh much either.  But I'll see it thru-for better or worse stinks!   Moping in Maine. 

Aug 26th, 2015 3:55pm

I found the last writer's comment, "it's the worse thing that ever happened to me, and it didn't happen to me" to be so right on! Ten years of it "didn't happen to me, but it happened to me"!  I don't know how much longer my husband and I can deal with head injury and mental illness. We deal with it every night. The ranting, the denial, the paranoia and delusions, are bringing us to our knees. Medications have not been the answer since 2014 when he was more stable. Haldol and fluphenazine are the drugs tried and don't seem to be working now. My son has been good about taking his meds but they are not working on the mental illness. Anyone else dealing with these two difficult issues?

Aug 6th, 2015 6:58pm

Thank you so much for this.

Jul 22nd, 2015 8:35pm

Love love love this. My 28 year old so. Was injured in a bad accident that was not his fault. I am devastated by it. It has turned my family if 6 upside down. I feel like something is wrong with me. Other people deal with tragedies and this has unhinged me too. I look at pictures of me before and now I'm different it forever altered my life. It is the worse thing that ever happened to me and it didn't happen to me. It is painful to watch your child struggle through brain injury which are often accompanied by physical too. Makes me feel like I'm not the only one responding this way. I can spin it too but it's a devastating life altering occurrence. My youngest just turned 18 now my oldest who has the TBI is dependent again. My friends are marrying if children having grand babies and empty nest... I don't see that.

Jul 22nd, 2015 4:16pm

I'm a TBI survivor and can only get through one page right now, due to focus issues... but I love this so far. Great writing style, real and raw!

Jul 21st, 2015 5:14pm

Thank you. We are 3.5 yrs post, single mom of a 16 yr old survivor. You literally put into words all I feel day in and day out. I appreciate you writing this. As its hard for me to talk about still. And I'm forced into it. Thank you

Jul 21st, 2015 3:45pm

Dixie - I dare say that YOUR story sounds almost a duplicate to my own mother's story.  There are no adequate words to describe this TBI experience and we live it every day.  Even those well intentioned family and friends who try to provide comfort fall short in their empathy.....they cannot know or understand the daily heartache. Added frustration comes when family will infer that we are somehow enabling our loved one.  This is an indescribable journey, but what I have learned is that I believe the journey says far more about ourselves than the one affected by TBI. How will I handle it all? What does it say about MY character, MY patience, MY strength, MY faith. This event has changed the lives of everyone connected to my son. As a mother having gone through it far more closely with him than anyone else I am grateful (yes, grateful) for the daily rigors.  I am also human and are there days when I am angry?? You bet.

May 6th, 2015 3:42pm

I just wish I knew if and when it will be okay to grieve, It's been 5 years and that person he was is gone. I really love who he is now but oh my God, I miss my son too. There was no funeral for all who loved him, especially his sisters. To even think it feels like a betrayal but our other son truly left us that day. His injury was one of the bad ones. We've just kept doing what had to be done, no choices. Deepest sorrow hits me sometimes. I can't let him see.

Mar 15th, 2015 10:23pm

I read your post and am amazed that you have made it as long as you have without blowing up! Now, as Frustrated as you sound, I am a Survivor of Brain Surgery nearly 4 years now. What would you think of I told you that what you are going through is normal....try going through the Actual Process as a Survivor...the Guilt you feel for having to rely on others to do the most basic things that you know, you used to do but can't do any more. The frustration we feel Trying hard as hell to get better FASTER, so that we won't be a BURDEN on the lives of our Families and Friends. The ENTRAPMENT, ISOLATION, CONFUSION and EXHAUSTION we go through on a minute by minute basis because our Memory has dissipated into oblivion yet, at times, it appears.... Just to know when you fall asleep from exhaustion..complete and utter mental exhaustion, and wake up...we have to begin All over again. Forgetting how old we are, what day of the week it is, watching the time tick away and there's nothing we want more than to be our old selves again. Imagine the Frustration You Feel ....Multiplied by 10...being TRAPPED by your OWN MIND that won't Heal Fast Enough, NOT JUST FOR US! BUT SO THAT WE DON'T HAVE TO CONTINUE TO BE A BURDEN ON OUR FAMILIES. Your frustration is at least something you have the mental capacity to spew it out and release all of the negativenrss that you are feeling. You have the ability to sort it out...because you Brain Functions Properly. We have what you call, Survivors Guilt! Knowing this is putting a hardship on our Families and Friends. Just to keep it in perspective, We Didn't Ask For This either. We feel sad to be Sooo reliant on others. Your Frustration is valid....but walk in my shoes for a day. You might just feel Blessed, to be able have your Son around. God Bless! Be Well..... Sparks

Feb 9th, 2015 11:08pm

~Dixie,
I read your son's story and tears came to my eyes, as they have reading many stories from the Mother's point of view regarding their child's TBI experience.  I just want to hold your hand and cry with you, for you and your family.

The beginning of my son Brett's story is very similar.  My son's incident (I don't say "accident" anymore because people assume it was a car accident that caused his injury.)  When Brett was 13, he had a knife in his pocket that shot open and severed his femoral artery, he bled out.  He was in a Coma for 3.5 weeks, with our Neurologist asking if we knew who Terri Scheivo was, and that we were "not even going to get that."  My pen was on that paper to take him off life support.  My ex-husband refused.  Thank God.

Here we are, almost 8 years later and currently, my son's future does not look so bright.  We went through all the recovery aspects that you described in your story, wheelchair, walker, cane, Rehab of all kinds, non-stop...all on my own since ex-hubby decided to step away and live his own life. 
During the first 6 years or so, EVERY thing Brett did was a milestone....a lot of "firsts" like a new baby.  First time to see the ocean, the first concert, the first date, the first time for EVERYTHING!!!  Just so grateful that my son is still on this earth to experience ALL life has to offer.  The first 6 years were for Positive thinking, healing, developing and believing that he was left on this earth for a reason!  He had purpose!

But for the last (almost year now-my son is 20, almost 21), he is changing.  Now he is mad, mad that he LIVED, mad that he is different, mad that it was HIS life that changed so much.  He was able to deal with his friends slowly tearing away from him, the fact that he was mobility impaired and walks with a limp for the rest of his life, that he spoke differently, slow and monotone....(we practice pronouncing continually), just so STRONG that his life had changed so much but he was going to overcome!!!

Now, he has a deathwish....He does not want to be here anymore, does not see a positive future, does not care if he lives or dies, actually HOPES his time is short.  He is preparing me for his "end."   He feels, "is this as good as it gets?- forget it." 
I have contacted his new Neurologist (me moved to a different city so he is starting with a whole new "team") for help.  Hopefully I can get him some help before it is too late.  His impulsive behavior has become extreme recently.  I am terrified I am going to get THAT call again, any minute.

The worst part is, I am on my own.  My family has always been a little emotionally "dead" and I guess they just don't know what to do.  My son's Father is currently in jail (AGAIN) for drug and theft charges....and since he decided 8 years ago to live that kind of life, he has not had much contact with Brett.  His Uncle and Aunt have become quite distant since the divorce, and not much contact with Brett either except the annual Christmas card and money.  My older children live in other states, with their own lives,  Actually, Brett's older brother, I believe has felt somewhat "abandoned" since Brett's incident because unfortunately, from that moment - May 19, 2007....it has been ALL about Brett, his survival and his recovery.

Personally, I am at my wit's end.  I am exhausted...drained of all energy, emotion, money etc.  I spent the last 8 years dedicated to helping Brett revive to the fullest.  I felt we were special because God didn't "take" him.  Brett had a special purpose, and I was assigned to make sure he fulfilled that purpose.  I have been financially, physically and emotionally devistated, but kept "chugging along" for Brett to reach his FULL potential.

And now he wants IT over??!!??

I am happy that your son sees his purpose and realizes what a gift he was given.  Being at death's door and given another chance is such a gift.  Have you experienced any of this with your son.  It would be inspiring to read that there may be light at the end of the tunnel.

Dec 23rd, 2014 2:19pm

I am so afraid of the future for my son. He does things that further injure his brain and he does not really learn from his mistakes. He gives in time and again to alcohol and drugs to dull the pain of what he is now. Although he is better off than many more disabled brain injured people, he is lacking in maturity, wisdom and humility. His medications, doctors and family provide enough support to keep him alive but his own nature, frailties and confusion may win out.

Nov 29th, 2014 7:25pm

Thank you. You wrote exactly how I feel. I am angry, sad, and at times feel guilty for feeling that way.

Nov 23rd, 2014 7:25pm

thank you , it has been 10 years for my son and sometimes the sadness of his future overwhelms me.

Nov 22nd, 2014 10:07pm

Thank you to everyone responding here.  Sometimes I never know who to talk to about having a TBI.  I usually don't tell anyone, because they just don't understand.  I certainly don't tell employers. Reading Dixie's role as caregiver helps me understand what it must have been like for my mom. I truly believe my mom is the one, who saved my life.  Mom, Cynthia, literally moved into the hospital with me.  She asked to have the catheter removed, and changed my sheets and pajamas if I wet the bed!  Of course, I remember nothing of the 1 1/2 month hospital stay.  I do remember waking up from the coma not knowing who I was, where I was, what had happened.  I don't really recall feeling anything to see that I was bald, and having had really long hair, I must have noticed.

It has been 30 years since the car accident, where I was thrown into a rock ledge, face smashed, semi paralysis on my left side. BUT here's the good news, if there can be good news with TBI,...things will get better. It's mostly attitude. 

My heart breaks for those as caregivers coping with severe cases of TBI.  As a care provider myself to the elderly, the compassion shown, care provided, emotional support to the patient is all very draining.  Not to say any less well intended, but providing care to others is a huge responsibility and a heavy job. So many cheers to those parents, spouses, children rendering aid to someone with TBI.

Even after 30 years, and a miraculous recovery, albeit long recovery, there are still challenges.  Reading and writing is tough, although easier with a computer.  Mailing a letter!  It is so hard for me, and I don't know why. I still have issues with people, but then who doesn't? Course, I am cross eyed, and I see double of everything, and I can't believe how stupid some people can be.  If you could see me, there's little evidence anything ever happened, except for my looking cross eyed.  Oh, and the little evil monster ( I call it) >depression<  It will rear its ugly head sometimes.  Got to get right on top of depression and kick it out!!!!!! I won't take any meds (period!) Go for walks, find good news, anything to rejoice in. 

Thank you all for sharing your stories.  write to me anytime.  HUGS>Melanie

Nov 21st, 2014 7:32pm

Dixie, if I were to sit here and type until the end of time, I would not be able to properly express my appreciation for your having written this article!!  My husband suffered his TBI falling from a ladder as a self-employed sign maker 7 1/2 years ago...he too is considered "lucky" as he is high functioning, the majority of the changes are only seen by me and my daughter, when he turns into the Tasmanian Devil who swears A LOT, and he's really mean!!  So I find it difficult at times to read/hear all the "rah-rah turn it into a positive"...your article has given me the much needed permission to CUT MYSELF SOME SLACK and realize that I am not a horrible ogre of a wife...and I REALLY needed that!!

I tried the Support Group route, but I felt guilty complaining about his bad temper when others were dealing with more complex physical challenges...by comparison, my life hadn't "changed" as much as some others...you've helped me tear up my score card  (i.e. gonna stop comparing myself to others!) and just keep doing the best I can with what I got!

Thanks again for lightening my load...have a great day!

P :)

Nov 21st, 2014 11:54am

Dealing with the TBI is in a lot of ways harder than dealing with my sons all 3 born with autism because you get to live in the reality of normalcy before your child receives a brain injury. You get to experience what your son was like as a typical child. That loss I think is harder than for your child to be born with an intellectual disability. The road to acceptance for that would be very difficult, but what I do understand is the caregiver role. It is unrelenting and I don't think very many people understand how intense it is but at the same time the fact that your son has moved out of your house is something I will never be so lucky as to have happen for my three boys. The caretaking will never end for some of us as our children were born with their disability and will die with their disability with no hope of progress, independence is not a possibility....so while I respect your struggle with BI, I hope you also appreciate the truth that for some of us caregiving never ends, but there is always love and thats the silver lining for us. Warm Regards Lori

Nov 21st, 2014 3:02am

I too am a TBI survivor but I don't have any negativity. It hasn't quite been a year but it took work HARD to get back like I was. I was as close to death as humanly possible. But I can and have worked back positively. I have lost my marriage along the way basically because I wanted to live. And do things. Some semblance of a return was all I wanted. But I was places as "all the rest" and it was assumed I had an attitude issue. I take it from reading too much negative. Trust me when I say we all aren't like that. Yet we get plagued by those that are. Please, we are going through enough. Can we please not add to it? Luckily I'm strong and have the truth on my side. But I wouldn't want someone worse off to go through what I did. They may not be able to handle it as well as I did.

Nov 20th, 2014 8:17pm

I like you try to see the positive but its not going to go away we have to live with the mood swings, paranoia, anger and yes the laughter and joking. It is tiring and no one understands or wants to hear it anymore. It's been over 12 years and we always felt so blessed and then we were hit with another complication that changed his mood just when we got used the the person he was post injury. We tell ourselves that for 12 years we've been blessed and lucky but now we have to adjust to this new person that is not as nice as the last person post injury. Losing our son twice makes me angry and sad and depressed but I can't show those emotions I have to smile and act like we're ok and he's ok and wait for him to get better again if it happens.  But I have faith and I keep praying and giving myself pep talks otherwise how else will I manage.

Nov 20th, 2014 7:24pm

Sometimes you just have to let it all out!  Thank you for doing so.  I could have written that myself, every last word.  I am almost 3 years post op with my son, Samuel, who will be 18 on Saturday.  He had a brain tumor removed and things went from bad to worse after surgery.  Though cognitively he is all there, he is still dependent on a vent at night and cannot yet swallow.  Hope and faith is all we have for these things to come back.  God Bless you and all who live with a TBI.

Nov 20th, 2014 5:34pm

Thank you for honesty. I have found most people only want to know the positives which can make the caregiver feeling even more alone because we feel we can't be honest. Feeling the negatives doesn't make us any less grateful for what we have it just makes us human. In our situation there is a sliver lining, we were already growing apart and still struggling with the death of a child when DH had his stroke. Through this we have grown closer and have been able to appreciate each other more. Fighting through this together helped us to heal not only our marriage but, also from the grief of the loss of our child. Whenever we get down, we allow the sadness for a short time then focus on the positives again otherwise we could easily sink into the pits of despair.

Nov 20th, 2014 2:43pm

From someone that has suffered with TBI for 3O years. Thank you Dixie It's good to hear the point of view of a care giver. My mom has tried to get me help, taken me to psychiatrists and put up with my behavior which she has not understood. I know that it has been frustrating for her the lose of jobs, every ones expectations of me  to live a normal life; it has been hard on her but she is the only family member that hasn't shut he door in my face. My marriage fell apart after I was hit by a carload of drunken teens. I lost someone very close to me my step daughter. I fell into a big depression and quit my job at the water department and when I couldn't pay my bills I started steeling to make end meet.(stupid) I feel like I could write a book about all the crap that I have been through. It's good for me to read about others that have had the same problem. I wish you well in the recovery and after math of your son's tragic accident. I know that it is hard on you at times just from what I have seen my mom go through. I pray that you don't ever give up on your son. D.C. 

Oct 29th, 2014 11:42pm

I am responding to the caregiver who commented on October 14th about her son's mental issues after TBI. If she or anyone dealing with these sad results of head injury want to share, my email is debam52@gmail.com. 

Oct 21st, 2014 7:19pm

Thank you for posting this article.  I'm glad to read something about TBI that happened years ago yet still there issues.  Everything I read is about the first year or two after the accident, but nothing long term.  My son's accident was 10 years ago and we deal daily the grind of care giving. He has no physical disabilities, it's all mental. I sometimes think, is this still from the TBI, or is this just all mental illness now?  It's both!!!   Thank you again. 

Oct 14th, 2014 1:43pm

Hello, my name is Ryan Alex. On May 12th 2001 (Mother's Day) at the age of 16 I experienced a severe tbi. I wrecked a motorcycle doing (from what the police said) anywhere from 75-120mph head on into a ford f-550 service truck. I was in a severe coma for 3 1/2 weeks and literally died 4 times throughout the initial hours/days in the hospital. I was in the hospital for approximately 4 months total. Including the inpatient rehabilitation center. I had to learn EVERYTHING down to tieing my shoes but for some reason maintained a two year college level reading ability....i have a hard time remembering much of anything before that wreck happened to me, except for triggers that once in awhile t bring back memories. sometimes I wonder if they are actual or fabricated by my brain. Because a lot of times my friends or family don't even remember them happening. I personally lived through this life altering event. I had a girlfriend at the time of the accident that dumped me soon after because "I wasn't the same person as before the wreck" I lost ALOT of "friends" because they weren't sure how to act around me, or other various reasons they all came up with. I suffered from severe depression for years. If I don't wake up in the morning with something hurting......something is wrong....I've also been through 16 major surgeries involving bones I've broken ( getting hardware installed and removed) and that is not counting all of the cosmetic surgeries I have had to endure. I can't even begin to explain how frustrating life in and of itself became after my bike smashed into that truck. I felt like nobody understood me, like I was going to be alone my whole life afterwords, because in my mind...I was some freak and I hated myself for being who I was. I could never see that I was still me due to the fact that coming out of that coma. I didn't even know who I was or who I was supposed to be. I tried so hard to be the Ryan I knew. A lot about me did change, and I hated it. I hated it so much that I tried to end it all for myself twice (unsuccessfully). I just couldn't handle being so "different" and I didn't stop to think...how "different" could I be when I had absolutely no idea who I even was before the mishap. I cried for God, I plead with him, I screamed at the sky in tears many a night trying to figure out my purpose. But in all reality of the situation. I never had taken a step back to look at things and realize that maybe, just maybe. My purpose wasn't in my hands at all. It is now 9-22-14 and I am still here to tell you that recovery has been very long and difficult...I still struggle with anger/temper issues as well as impulsive decisions I make without thinking things all the way through before I move forward with the decision. I am a single father at the age of 28 raising a beautiful 8 year old son, I have an associates degree and am working a job that brings in close to 70,000 dollars a year. Now, with that. I am by no means trying to brag or flaunt about my success but rather provide inspiration to victims of tbi and families of tbi victims showing them that everything can work out to be ok. With my personal tbi, I had what you would call a subduralhematoma with my brain hemoraging (bleeding) inside my skull with no room to expand due to it being a closed head Injury. The doctors put a drain into my scull to relieve the preasure until swelling and bleeding subsided. I still have a large problem relatively often with my short term memory but it has improved over the years and I am still at high risk for having seizures. (Haven't had one yet) but in closing, If you are a victim of a tbi or family of a victim of a tbi (traumatic brain injury) reading this comment. DONT LOSE HOPE!!! DONT GIVE UP!!!! PERSEVERE THROUGH IT!!! It may not be the end all be all! Everything happens for a reason!!! You may never understand why,so don't even bother wasting your breath asking yourself that over and over and over. Just see it through. I hope everything works out for you as it has for myself.....and don't ever doubt the ability you posess to see it through to the end. If you do,Say a prayer! I will say one with you! I'm sorry you have to/are going through this. Either way you look at things...it will all work out. God bless you!

Sep 22nd, 2014 5:36pm

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.

Sep 11th, 2014 4:07am

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

Sep 5th, 2014 6:18pm

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.

Sep 5th, 2014 12:36pm

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.

Sep 4th, 2014 10:43pm

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. 

Sep 4th, 2014 9:24pm

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 judgements 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" ....

Sep 4th, 2014 11:04am

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

Sep 4th, 2014 11:01am

I have TBI Traumatic Brain Injury and PTSD and possibly CTE Chronic Traumatic Encephalopathy 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 the other 23, on a scholarship in Mech Eng at Texas A&M. The NFLPCF has tried to help, but they say I'm to 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 step dad 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 ww.RTCAF.org

Aug 25th, 2014 1:02pm

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.

Aug 24th, 2014 8:19am

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.......

Aug 23rd, 2014 7:47am

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. 

Aug 23rd, 2014 7:30am

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. 

Aug 22nd, 2014 9:50pm

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.

Aug 22nd, 2014 8:11pm

I am a TBI survivor ,try being on the other side the person injured

Aug 22nd, 2014 8:01pm

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.

Aug 22nd, 2014 7:01pm

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.

Aug 22nd, 2014 2:31pm

Great article.

Aug 22nd, 2014 2:21pm

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.

Aug 22nd, 2014 12:56pm

Thank you! 

Aug 22nd, 2014 10:50am

Thank you for sharing

Aug 22nd, 2014 10:34am

Thank tou really for real truth.like breath of fresh a

Aug 16th, 2014 7:01am

This could be also written for patients with brain diseases like alzheimers, natural pressure hydrocyphalus, and other brain conditions, and their caregivers.

Aug 10th, 2014 4:00pm

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 hospital, the Dr's wanted me to take 11 pills a day and I told mum no way, I did'nt 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

Aug 8th, 2014 11:38pm

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.

Aug 8th, 2014 1:11am

I can understand everything you say. Stay strong

Aug 6th, 2014 4:37am

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.

Aug 5th, 2014 10:18am

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.

Jul 31st, 2014 10:07pm

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 paybills, 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 couldn not relate to the positive tone.  I relate to this post , because to me it is a more real 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

Jul 31st, 2014 2:47am

Thank you you hit everything I feel every day. Since my sons avm rupture! Thank you prayers and strength to everyone

Jul 29th, 2014 10:39am

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.

Jul 29th, 2014 8:09am

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, facilites 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!

Jul 28th, 2014 9:47pm

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

Jul 28th, 2014 6:13pm

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 

Jul 27th, 2014 9:53pm

But...You are strong and you have made such an amazing differents 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 exspressing What I never could! Well said! God bless you and your family! xo

Jul 27th, 2014 7:57pm

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!

Jul 27th, 2014 5:02pm

thank you for your article it was insightful.  I had a TBI or ABI which ever 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 it's challenges and the cycle of depression and anxiety that I ride never goes away. 

It took approx 20 years before I coudl 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 ageing 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.  

Jul 25th, 2014 2:00am

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.


 

Jul 24th, 2014 11:36pm

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.....

Jul 24th, 2014 10:04pm

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......

Jul 24th, 2014 7:18pm

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!

Jul 24th, 2014 6:25pm

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.

Jul 24th, 2014 2:16pm

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 for ever 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 cant 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.



 

Jul 24th, 2014 1:28pm

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? 

Jul 24th, 2014 12:45pm

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!

Jul 24th, 2014 12:36pm

Thank you for putting on paper what has been on my mind and in my heart for the last 10 years!

Jul 24th, 2014 12:35pm

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! 

Jul 24th, 2014 9:56am

Well said.

Jul 24th, 2014 9:38am

Thank you for expressing  all that I have never been able to do! I look forward to your book! Gods blessing!

Jul 24th, 2014 1:03am

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!!!

Jul 23rd, 2014 11:49pm

My son is Brain Injured, I wanted to see what you have to say

Jul 23rd, 2014 10:56pm

My heart goes out to you.  My son suffered the same injury at age 14... drove his bike into the path of an SUV, with no helmet.  As an ER nurse, I knew the severity of his TBI  and tried to prepare myself for what child I would now have, if he survived.  He became the poster child for medical miracles...he began an intense physical and mental rehab program...he not only lost his one sided weakness, but began to run again.  We were told this talented and gifted child (pre-injury ) would probably never be able to manage college.  He continued to heal and not only graduated from high school, but completed a 2 yr degree in computers.  On the outside, no one would know he almost died.  He is a different person on the inside...quicker temper,  less inhibition...etc., but we know how blessed we are to have our own medical miracle still with us.  WE were the fortunate family.

Jul 23rd, 2014 10:30pm

Thank you for writing this!  I am my boyfriends caregiver who has a tbi and it isn't always easy.  There are mood swings, depression, negativity, irritation that can turn into arguments.  At times It feels like a rollercoaster ride for both of us.  I know how much he struggles and it pains me to see him struggle with certain social situations.  Then there is the difficulty of times when he may process words differently than myself.  I find reaching out to others who understand traumatic brain injuries helps a lot.  It is even more helpful to hear the raw truth of what the caregivers and patients deal with individually and together. 

Jul 23rd, 2014 9:07pm

Thank you for this piece.You are quite brave to put out in the open the dark side of this terrible journey. And you have a way with words that makes your testimony very powerful. Yes we need to rely on hope, humour and love, to focus on love and small victories and good moments, because yes there are plenty of those. But this is only one side of the story... Reality is that this is a trench war we know deep down we will never escape from. Good luck to your son, you family and you. N.

Jul 23rd, 2014 7:55pm

I know what you mean. After 20 years of marriage to my brain injured husband I feel more isolated than ever. How can anyone understand my typical day?

Jul 23rd, 2014 7:48pm

True, true, true. I sometimes have pity parties and mourn for all our lost dreams. But most of the time I think " it is what it is" and continue on because there is no alternative.

Jul 23rd, 2014 7:22pm

Wow.  Amen.  Thank you.  Amazing.  Dixie, it is so refreshing to have someone else voice the same feelings I have/am experiencing so often.  I too get tired of being 'hopeful' and 'optimistic' about our situation.  It is our son as well, who is the survivor (although we are all the real survivors) and he is now 28 going on 29.  7-1/2 years ago he sustained a Sudden Cardiac Arrest (SCA) while attending college.  How our lives have changed!  The biggest difference in our stories is he is our only child.  I cannot imagine how you can go on with 7 others.  It is exhausting enough with one with a brain injury.  I applaud your efforts to shine the light on what it's actually like to live with and care for a BI survivor.  thank you again for making me feel not so unique.  I share your feelings and struggles every day.  

Karen

Jul 23rd, 2014 6:52pm

Truely describes how it feels to live in this new TBI world. As a caregiver, it is almost funny how people will ask how are things going. They don't want to really know. "Fine", is just a simple answer and all I really have time to give. My free time is so limited and precious, I really don't want to spend it on educating another person who won't remember what I said one hour after the conversation. It's hard to go out and hear what others are complaining about. It seems so trivial compared to what my son or my family worries about hourly. This TBI life is not the life I dreamed of, but more like the nightmare I am forced to live.

Jul 23rd, 2014 5:55pm

Thank you so much, it is nice to finally see the words I would like to say about our son's brain injury. He is 18months along from his injury and we have a new son , a different person living with us. Brain injury can be so cruel , just because you can't see any obvious injury . Everyone says he looks fine, he looks normal , all must be good. How you can be so wrong! 

Jul 23rd, 2014 5:09pm

I to am a parent AND uncle of a TBI survivor's and can understand how and what your going through and agree with what you've said in this article. I would love to be able to allow my daughter a chance to tell her side of the story as well as our family events as well. I have been looking for support groups that is local and not on the other side of town, or even considering starting one in this area, But I am having bad luck with getting other people in this area interest up and finding doctors and experts who are willing to help out. I will not give up and will keep working at it until I find the answer. GOD BLESS ALL THE TBI PATIENTS AND THEIR CAREGIVERS AS WELL, BECAUSE THE FACT THAT THE PATIENT SURVIVED THE INJURY AT ALL, IS TRUE POWER OF GOD'S HANDS ON THE SITUATION, AS A CAREGIVER FOR MY DAUGHTER, I SEE HER FRIENDS AND OTHER FAMILY MEMBERS KEEPING THEIR DISTANCE, BUT TRYING TO BE THERE IF WE NEED THEM. I COULD GO ON AND ON ABOUT THE REAL SITUATIONS OF A CAREGIVER GOES THROUGH. BUT IT'S NOTHING LIKE THE PATIENTS GO THROUGH. "I CAN SAY THAT ALL LIVES INVOLVED ARE TURNED UPSIDE DOWN AND IN ALL DIRECTIONS AT ONE TIME" AND "IF IT WASN'T FOR GOD'S GRACE, MIRACLES, FAITH, MERCIES, ETC.. THAT GOD HAS GIVEN US", I AGREE I WOULD NOT BE ABLE TO HANDLE IT.

"THANK YOU GOD AND ALL YOUR ANGELS FOR THE MIRACLES AND BLESSINGS AND GRACE, ETC...., AND FOR STILL BEING HERE TODAY AND FOREVER", WE COULDN'T OF MADE IT WITHOUT YOU

I COULD KEEP ON GOING ON TBI AND THE REAL STORY BEHIND IT, BUT YOU ARE EXPRESSING THE PAIN AND CONFUSION AND STRUGGLES GOOD ENOUGH TO GET THE POINT MADE, SO I JUST WANT TO GET SUPPORT GROUPS AND ALLOW THE PATIENTS TO SPEAK THEIR PART.

HOW EVER I AM WILLING TO EMAIL AND TALK TO ANY ONE ABOUT IT, SO PLEASE EMAIL ME AT: douglasgraham27@yahoo.com

Jul 23rd, 2014 5:01pm

As a survivor, you never regain your life but you do live a new one. It is so hard for people to understand. Having watched a friend struggle with his ABI I can understand to a certain degree the frustrations of close family who support the survivor. It does not get better you get better at managing it.The frustration, the hurt. the anger is always there. My plan was to work at it everyday and try. \some good days too many bad. I never stop, It is worse that we are invisibler to most people and they can never understand how picking up something I dropped makes me smile so much.Why smile, easy it took me 4 years to be able to pick something up without falling over. Now to stop dropping things. Find the little wins and build off them.

Jul 23rd, 2014 4:51pm

There are some people I wish would read this. Mostly people who have told me how to handle our tragedy.

Jul 23rd, 2014 4:39pm

So true that in the end I walked away to save myself

Jul 23rd, 2014 4:04pm

I love it!! Thank u! I feel less guilty now knowing that it's ok to not pretend like everything is 'fine'...because it isn't! It is very difficult! I care for my sister, 7 years post 'truck smashing into her tiny car'...im a single parent too...and sometimes I just do not want to. But I do, because I chose too 7 years ago...still doesn't make it easier.

Jul 23rd, 2014 3:46pm

Wow, someone has finnally said what I have been feeling for 2 years.  I thought that I was alone in what I have been feeling.  My husband has had TBI, and I am his only care taker.  Its hard feeling like your alone.

Jul 23rd, 2014 3:28pm

I am a caregiver to a mentally ill adult and I have a TBI , walk with a cane, have cognitive and emotional issues. As  caregivers we often forget to think about our selves. I laughed out loud when I read about you shouting out out at people about helmets I have felt like doing the same. You a wonderful woman. All your feelings are important thank you for sharing.

Jul 23rd, 2014 3:06pm

We went did all the ICU  and rehab, the hopes, the failures.  Our son was in a accident 17 years ago we had hope, we prayed, we cried most of all.  In rehab he came to a point where insurance wouldn't pay any more so he had too go too long term care, we bought a Van and took him home every weekend, he has a feeding tube and had too be changed and cleaned.  He feels pain blinks his eyes, can't move or talk or eat.  This is his and our TBI .  Jeff has been in a vegetive state for 17 years and he is only 46 years old now, I cry every day, if there is a God I don't think so.  He is expected too live, if you call this living, until he is in his 70's.  We, his Mom and Dad are in our 70's now, we can no longer take him home.  He is married she is his guardian  and she won't divorce him, so We have to get her permission to even call to see how he is doing, she is with another man.  She no longer talks to us.  She moved him too a place where he is in bed or wheel chair sitting in front of a TV.  They are closing all the  long term rehabs.  This is what TBI is for us, people don't understand and I wish they would stop saying they do.  I have been told to get over it. It is what it is, That's it.  I have no more too say right now.  Judy

Jul 23rd, 2014 3:06pm

Thanks you so much for your honesty!. It brought tears to my eyes. My 33 year old son suffered a traumatic brain injury a little over a year ago.  I am his primary caregiver.  He played football in high school and fought in the MMA for about ten years until he suffered a traumatic brain injury and brain bleed from repetitive concussions.  A preventable injury in retrospect, if only there were do overs.  The nightmare of helping him through recovery is not over and may not be for years.  There are so many areas physically and mentally affected with a brain injury:  cognitive, smell, taste, balance, seizures, depression, suicidal ideation, migraines, mood swings, memory loss, the list is endless. I find fighting the battle to bring him forward to his new self, exhausting but as a mother, nothing I would ever stop because tragically that could be his demise.  It still could happen.  I often think about those adults that do not have families to help them navigate the systems.  While I am grateful for the small gains, I realize the mountain ahead in my retirement.  I plan to advocate for better safety procedures for MMA fighting resulting in head trauma.  I would like to see no other parent go through the loss we/he has suffered from preventable sport injuries.  It could be years before he can make peace with his new self and brain function.  It is exhausting, depressing, lonely and hard to convey to others that do not understand because traumatic brain injury is such an invisible injury.  Again, thanks for sharing!  It is a hard to stay positive every day.  I too lie.

Jul 23rd, 2014 2:42pm

Very Powerful,  I'm a TBI survivor and in my life I realized mothers stick by their children, not so for spouses.....sad situation to be in.....No one deserves any of this!

Jul 23rd, 2014 2:08pm

This really makes sense. I feel this. I have not given up yet on my daughter's recovery. Her youth is gone; but, I pray for a normal adulthood. She was exceptionally talented. I pray that what she recovers will take her to normal, not just functional. Maybe a miracle will bring back her athletics, but a part if her life is lost forever. I understand your why questions. My daughter was wearing a helmet while on her bike ride. She had planned a safe and reasonable route. However, she had with her a bad influence, a teen who led her across a busy road against the light. It was so out of character for my daughter. I think peer pressure was at work. Not only does no one else understand, that others teen's family does not understand. They are upset that my daughter traumatized their daughter by providing a collision for her to witness.

Jul 23rd, 2014 1:52pm

I can relate all too well to what you've shared. I'm a TBI survivor, experienced the exact same accident as your son. I would say no one understands what I've been through or how I feel every single day!

Jul 23rd, 2014 1:32pm

Wow! So glad that was honest and so true. That is exactly how I feel taking care of my husband and it's only been 9 mos. Thank you, thank you, thank you for writing this article. I know I am not alone.

Jul 23rd, 2014 1:26pm

Only those of us that have had caregiving duties thrust upon us instantly can even start to feel what you have been thru. I am very mad still, several years later; very sad still, several years later; but most of all, I would not ever say it was easy but I came out of it a better person, a more loving person and a more patient person all of which I really wasn't before. And yes I still cuss and swear "Why weren't you wearing that seat belt?" "Why were you in such a hurry that day?" RIP Dad.

Jul 23rd, 2014 12:53pm

Wow, you said everything I know and feel everyday, especially driving and screeming in the car..been there done that.. Thank you for what you have written.

Jul 23rd, 2014 12:22pm

Thank you for being real and honest. <3

Jul 23rd, 2014 12:20pm

Yes honesty is sometimes much needed.  As a wife of a brain injury survivor, I often feel guilty when I don't see everything in rose colored glasses.  No one wants to hear about your challenges ...  In fact most don't really want to hear about any of it.  This is where the isolation develops.  This is your life, therefore you have nothing to add to the normal conversations everyone else is enjoying.  The verbal abuse is debilitating, even though I understand the source, it handicaps a person.  I have forgotten how to dream.  What I miss most, is sharing these fears with my spouse.  I have no one to share the reality that faces me everyday, or at least no one who truly understands.  And there is no end insight.  But life goes on.

Jul 23rd, 2014 12:15pm

It is refreshing to see someone actually give an honest account of a TBI mom. Some people need to hear the truth to really understand how difficult it is to deal after the initial injury is " healed ." Having worked in a hospital, I know that it is a long process for recovery and often there are small victories that are not easily seen. I think that the hardest part for all of them, as stated in the article, is having to deal with all the cliches. Sometimes your support is better than words. Offering to help with carpooling, bringing meals, offering to take care of others in the house is extremely helpful. I commend anyone who has the strength to meet the physical and emotional demands that these injuries have on families.

Jul 23rd, 2014 12:02pm

Dixie, thank you so much for opening your hurting heart to us. It's a good thing to be so honest with yourself, and also to share it with others. People need to know about the truly painful, difficult road that families travel after a brain injury. I hope that now you can find some rest and some real time just for you. You deserve it.

Jul 23rd, 2014 11:59am

Thank you so much for the truth! I feel the exact same way as a mother and caregiver. I don't have 8 children, I have 4 , but with a child with tbi, it feels like a lot more. My extended family has been very supportive of us during this time and wouldn't be able to take my son to his appts without their support.

Jul 23rd, 2014 11:44am

Thank you! It's so difficult to put on a " happy" mask everyday and never utter the negative so that people won't think you are ungrateful.... while you are mourning the loss of a child you knew and loved and learning to adapt to the new ( constently changing) child. Honesty is refreshing.

Jul 23rd, 2014 11:34am

Wow..!! Well that said exactly how I was feeling, after my wife of 32 years had a brain injury from an Acute respitory attack, the last 2.5 years were also  weekly trips to Dr's appointments , monitoring her for seizures  which she got after her ABI, working full time..12 hour shifts..days and nights, the endless advocating for her to get the services that were out there but nobody told us about. Unfortunatly I would have it all back in a heartbeat , My wife developed Cancer 2 months ago and left this earth in 17 days...But i understand how you feel. Thank you for your honesty and God Bless you.

Jul 23rd, 2014 11:10am

Finally, someone who understands.

Jul 23rd, 2014 11:05am

What a relief to hear my thoughts expressed as I've been too exhausted and numb to even catalog them in a useful way. Thank you.

Jul 23rd, 2014 11:03am

THANK YOU SO MUCH!!  My husband is 11 months post-accident & 2 months home from rehab. This has been SO HARD! Even tho I have a little break while he's in out-patient therapy, that ends in a month and I don't know what we'll do then. Plus I am a school teacher and have only 2-3 weeks left before I go back. Thank you for being so honest about caregiving and advocating. It's truly a full-time job in itself. 

Jul 23rd, 2014 10:53am

To the person who suggested writing something for caregivers, I think that is a fabulous idea. As the family member of someone who suffered a TBI 10 years ago, I have had a hard time finding information on the long term. There is a lot out there about what to do for the first year, but after that it seems to drop off. We were told that my cousin would never walk or talk again and would require full-time caregiving; however, he defied the odds and re-learned all of those things. On the outside to others he appears fine and in many ways he is; however, I worry about things like how to help him handle his headaches, his rigid thinking, his challenges with jobs, etc. It doesn't seem like there is anything out there to help for 5 years and beyond. Thanks so much to the author who wrote this article. Your sincerity and blunt honesty is refreshing! 

Jul 23rd, 2014 10:41am

Dixie is right on with this articleur son is 7yrs out from my searching not only did he have a TBI but injury from hypoxia/anoxia also. He will never be able to live on his own. So our nest will never be empty. The morning of the loss is so hard and the cliches really get to you. We just smile and say all is well. I am so thankful to have him with us. You don't have time to explain it to anyone that hasn't experienced it.

Jul 23rd, 2014 10:25am

Wow.. I couldn't have put this any better. It's amazing that there is someone who really gets it. My son's brain injury happened 14 years ago. He us 30 now and I believe we have finally got the answer we have been searching for. I can't even begin to tell you my story. I wouldn't know where to start and you pretty much said it all. And very well I might add. I always said , "If it wasn't my son I'd run like hell and never look back. " And I meant it. No one gets it. NO ONE!

Jul 23rd, 2014 10:22am

My sons accident happened in 1995 when he was 3, he fell 22 feet down and landed on concrete, he survived, and made it through the brain surgery, we thoguht he would be normal and go on to a normal life, his lower left vein was severed, and they tied it off after many days of fear we would loose him. As the years went on, back and forth to doctors specialists, therapy, but it has been anything but easy, he is now 22 and has had a very hard road, he graduated from ese school, but his battle has been so hard, he has chosen a road which parent ever wants their child to take, he self medicates to ease the pain they say is not there and to feel something other that what he is going thru, this is the worst battle i have been thru, he has been incarcerated in and out of rehab. it has been the hardest thing i have ever had to gone thru, but i thank god  every day he is in my life. I feel so guilty as a parent i can not take away his pain and suffering, my family and friends say i need to let it go, but how can you?? 

Jul 23rd, 2014 10:19am

I'm glad I'm not the only one who isn't trying to lie to myself anymore. Of course I am grateful that my husband survived his TBI (he was given a 10% chance at the outset), and that he is functioning on a nearly-normal level. He drives, he does many things for himself, helps around the house. In addition to the TBI he is on kidney dialysis and has severe glaucoma. Because I am the one here helping him with all of this, I become the one who is blamed. According to him, I want to 'control' him. When he was told he was getting near the top of the transplant list, he said I was probably disappointed because it meant I wouldn't be able to control him by making him do dialysis anymore (wtf?). If he only knew what my REAL first thought was: that he wouldn't need my help anymore, I could leave him and get my own life back. Sometimes, I admit, I feel I'm only sticking around because I feel obligated. If there was a way out, I would take it and say sayonara. I'm not appreciated for what I do, and he doesn't know or care what I went through those months when I didn't know if he was going to live or die. He has changed, and not for the better. We fight a lot, we never used to. The irony is, he doesn't want me telling him what to do, yet when I don't help him, he gets angry at me. I am so frustrated. I'd like to be an alcoholic but I fall asleep before I can drink enough. 

Jul 23rd, 2014 10:15am

Yes! Thank goodness for some honesty and raw emotion. I have read many books and articles with those positive reinforcements, silver linings, happy endings; and then often felt like there must be something wrong with me for feeling so angry, so miserable, so lost. As a caregiver for a husband with TBI (4 years), and as all caregivers know, it can be a very isolating place to be. And it is more difficult when you hear all these uplifting stories and then wonder "what is wrong with me?". Especially when others don't see the same person that you live with every day and then think there is something wrong with you or that you sure are just a grumpy, miserable person. Sure, it is good to know that people survive and conquer and move on; but to know you are not alone in this roller coaster life, and that others scream out their car windows, is a reassuring thing. Thank you, and good luck to us all.

Jul 23rd, 2014 10:15am

Thank you. I am the caregiver for my wife. Her brain injuries occurred at the end of an operation in 2007. She was 27 and our daughter was 6 months old and son was 10. It has been hell on earth and always will be. I understand the depression, loss, guilt, lonleyness and emptyness that follows. My son couldnt take it when he got older and ran away. My wifes family were and still are worthless. Our only support has been my mom and our church. There are no happy endings. And we caregivers are not heroes. We are people who have been dropped into another world full of grief.

I too have folks, that mean well, that tell me how they admire us or what a great husband I am for staying and more. I hate the comments. To be honest I will always blame myself for Angelia's injuries -- simply because I could not save her. As a husband we are to protect at all costs but I couldnt. I miss her and all the promise of a future that is long gone. As a Christian it makes me question everything -- even begging God to take me instead only to wake each morning knowing the nightmare is so real. Yet we go on. There are Dr visits to make and rehab to continue and even more questions that go unanswered.

Prayers for all the caregivers. Charlie

Jul 23rd, 2014 9:55am

TBI for our family has been devastating in every way. My son was 15 now 19. Severely disabled. Daughter now 21 was the driver. She's trying to live & keep the guilt at bay. The care and stress is killing us. We prop him up for nice pictures but it's just props. Life sucks with TBI.

Jul 23rd, 2014 9:44am

Dixie Coskie's  writing is so true and human!  Thank you so mcuh for sharing the ''reality'' the emotional and physical toll brain injury causes.  I am not a brain injury caregiver , but have a brain injury and am a caregiver for myself, my three children and husband.  I was a socialworker and a published writer.  I can completely relate to the the exhausting  and neverending emtional rollercoaster ride of being a caregiver and someone with brain injury.  The loss is a cavernous void....the sadness is unfathanable , and Dixie Coskie is so spot on when she says most others dont want to know or could not comprehend or understand the magnitude of loss, loneliness and grief that brain injury causes.  Thank you so again , Dixie Coskie for your honesty , your gift of writing, your invaluable spirit.

Jul 23rd, 2014 8:59am

Powerful article. As a TBI survivor, I am writing my book too. But part way through it, I'm thinking maybe it would be better to write an instructional guide for caregivers. Would be more useful rather han to tell my TBI story to try to lower the barriers of communications between the rehab professionals and the caregivers. As a former practicing general physician, I still remember all of the terminology that took me years to learn and no doubt to confuse others. I'm looking to see if such a caregiver's guide, written in lay language, has been written already. So if any of you who are reading my reply knows of one, let me know. If any of you want to contribute to such guide using a Wikipedia-like people contribute their ideas, project, let me know that too. Dr. G  

Jul 22nd, 2014 12:53pm

Thank you for your honesty. It is a relief to read about someone who isn't working so hard to say it is all ok. I often feel discouraged when I read about caregivers, especially wives like myself, who seem to find a way to love this totally different person they now live with, and make it all work out. We are two years post accident and it feels more and more like an abusive relationship with all that anger directed at me, the lack of empathy, the extreme self involvement. I know these are standard TBI  effects, but they are very challenging to live with, especially when everyone else sees a very different guy.

i hope your son does well out in the world and you can regain a normal life. 

Jul 22nd, 2014 12:41am


BrainLine Footer

 

BrainLineMilitary.org is supported in part by generous grants
from the Bob Woodruff Foundation and the Infinite Hero Foundation.

Bob Woodruff Foundation  Infinite Hero Foundation

© 2017 WETA All Rights Reserved

Javascript is disabled. Please be aware that some parts of the site may not function as expected!