The Real Truth About Brain Injuries

The Real Truth About Brain Injuries

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.

Posted on BrainLine July 21, 2014.

Comments (149)

Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.

I totally understand. I'm right there with you. As a human being I will do what it takes as a caregiver. Inside I am empty. I lost my soulmate and the future we could of had. I've literally spent my whole life caring for someone else. I'm really tired of being miserable.... but you have to push on...... My wife and I used to be so........ close.......

I appreciate the honest perspective. Our daughter who is now 36 was hit by a drunk driver 2-1/2 years ago. She lives with my wife and I and we are the objects of her anger and frustration. Don't get me wrong, we thank Jesus every day that He spared her life and we are so grateful for her. We live in south Florida and the treatment and therapy is pretty much worthless so we stopped that a long time ago. Although nearly all of our daughter's friends have dropped her now however they all had time to influence her that there was nothing wrong with her and she should be driving (God forbid), working and living on her own. Believe me, we both want those things for her and the sooner the better. But we live with her 24/7 and we have to help her with all the things her friends are not aware of. Memory lapse, confabulation, poor judgment, unable to work through instructions, very slow reaction and response time...and so forth. But when she talks socially on the phone to her friends they don't experience this. She is told we should just let her go out on her own and stop making her stay here. Actually she could leave anytime she decides but she also has to be supported. Now which of her friends are going to do that for her? So our daughter who we dearly love and have given up our normal lives for gets mad at us and yells and tells us how much she can't stand us or living with us. It breaks our hearts. She is not mad at the guy who nearly killed her but she can't stand us. We go to tbi support groups and they are helpful because we are finally validated. That is the only place where people get it. Doctors don't, nor do the other necessary professionals, at least those we have been in contact with. We hope our daughter will go with us to these meetings one day but for now she says she doesn't need them. Yes, tbi sucks for the survivor and the caregiver...

This was so close to home. I read it to my husband and he agreed. We have been the caregivers for our 36 year old son for almost 14 years and through that time since his car accident and brain injury he has had and lost apartments, lost friends and one girlfriend, worked parttime and now not at all. Unfortunately mental illness has complicated his TBI and now is in his fourth commitment at a mental hospital. He was living at home prior to this and yelling and swearing many a night. Pot smoking was a mixed blessing that we thought would help the anger but made him more paranoid too. We have decided that we will not live with him any more since it was getting toxic for him and us. It's sad because we used to have a pretty good relationship and he was trying to have a life.
I do think time will make her deficits more apparent to her and her friends. One book I liked a lot was Head Injury Recovery in Real Life, because even though my son is not a success story, I see what it takes to be one. Maybe your daughter will be one. The website has been a great resource for TBI and I think Dixie Coskie's essay is spot on. Good luck, Deb M

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.

How is your husband now? Am I right that you are the wife to a TBI husband? My dad was in an accident 4 years ago and today we are at a loss. We do not know why the next step should be. He works daily but the second he leaves work he drinks. He will not let my family help him or even speak about it or talk with him, especially my mom. She does not know what to do next.

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
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.
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.

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

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.
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.
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??
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!

I get it! ❤

Dixie is right on with this article. Our 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.
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!
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.
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.
Finally, someone who understands.
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.
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.
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.
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.
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.
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.
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.
Thank you for being real and honest.
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.
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.
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.
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!
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.
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!
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.
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
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.
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.
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' 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.
So true that in the end I walked away to save myself
There are some people I wish would read this. Mostly people who have told me how to handle our tragedy.
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.

I to am a parent AND uncle of a TBI survivor and can understand how and what you're going through. I 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 are 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.





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!
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.
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
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.
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?
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.
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.
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.