To Share or Not to Share: Life After Brain Injury

David A. Grant, TBI Survivor
September 8, 2014
To Share or Not to Share: Life After Brain Injury

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I have so often referred to the first year or so after my own traumatic brain injury as “TBI boot camp.” It was undoubtedly the hardest year of my life. Nothing, absolutely nothing in life can prepare you for all that encompasses a brain injury.

The first year or so was painful as life-long friendships dissolved. It was financially abysmal as my ability to work on a full-time basis stopped the moment I was struck by a teenage driver while cycling. My sense of self was as shattered just like the windshield that I flew through.

They were tough days indeed.

As time passed after my crash, my broken and bruised body did exactly what it was supposed to do — it healed. My brain was another story, but I underplayed it. Well-intentioned friends would ask how my recovery was progressing. My stock answer for much of that first year was about the same, perhaps with a touch too much enthusiasm: “Other than my traumatic brain injury, things are progressing as well as could be expected.”

The loss of my emotional and social filter was one of the reasons I found it easy to talk about my brain injury. But sadly, so was my naiveté. Don't let anyone kid you. There is still a very real social stigma attached to having a traumatic brain injury. Just ask those souls who used the opt-out option and quietly faded into the background of my life.

It's been several years since I graduated from TBI boot camp. The reality is that I have to live daily in a world where most of those I come in to contact with do not have a TBI. These days, I have adopted much more of a "need to know" approach when sharing. In fact, even the terminology I use has changed.

If I am in a position where my brain injury needs to be talked about, or is even referenced, I use a bit of finesse. Comments like, “I still live with some long-term challenges from a concussion,” seem not to alienate others. Unlike the sometimes awkward silence that on more than one occasion has come from calling my brain injury by name, the use of the word “concussion” seems to be accepted by others much more easily. While “brain injury” carries a stigma, “concussion” does not.

This may sound like a small point, but in reality, it is not. I have come to really cherish those relationships that have stood the test of time. I have some loyal friends and family who knew the "old David" and who accept me as I am today. I do what I can to maintain those relationships.

This brings me full-circle to over-sharing versus under-sharing.

During that first year, not a day went by that I didn't talk about my brain injury. My wife, Sarah, bore the brunt of my endless TBI monologue. Looking back with the benefit of clarity that comes only with the passage of time, I realize I needed to talk about my traumatic brain injury. I needed to work through what was the biggest life change I never expected to happen. I needed the ability to hear myself sort through the chaos and fear. Daily, I would talk about my vertigo, my incessant ear ringing, and the ambiguous grief if felt as I realized I was never going to be who I was before my crash. The list goes on.

And Sarah listened.

Over the years, I have found it unnecessary to continue to share every hill and valley of my day-to-day challenges. This is partially because I have come to accept that this is my life. But also, by speaking of it incessantly, it again becomes center stage, and we’ve both had enough of that.

This past summer, I did what I do most every day — I went out on a 25-mile bike ride. Occasionally, I deal with memory lapses. My damaged brain ceases laying down new memories for a while. On that particular summer day, something happened. I blinked my eyes only to find that I had travelled to a point a half-mile or so away from home with virtually no recall. In what amounts to a sign of post-traumatic growth, or maybe full-throttle acceptance, I regained my bearings and simply continued along with my ride. It really is amazing what you can learn to live with. I came home, showered, and told no one. There was no intent to be evasive. No desire to hide anything. Rather, I chose not to say a word as I just chalked it up as part of what my new life entails.

Over the years since my TBI, I have developed a very strong passion for living transparently when it comes to my brain injury. I often write about many of these events that define my new life. Much of what I write ends up on my personal blog.  And on the day of my amnesia ride, I wrote and posted the story without as much as a second thought. And, as it so often happens, other people with TBI chimed in that my experience was in virtual lockstep to their own.

Later that week, however, my Dad and I spoke. He shared that he had read of my experience and shared it with my mom. My dad is 81 and mom is not far behind. I do all that I can to see that they don't worry about me. I was immediately conflicted knowing that others with TBI need to know that they are not alone while, at the same time, wishing that my dad had not chosen to read that particular piece.

But the real game-changer was when my Sarah shared something I had not even considered. “If anything ever happened to you, it’s important that I know of anything like this. I need to know if you are forgetting your bike ride, or parts of it.” Suffice to say, she was right. Life with a brain injury means that I live in a world where things can change in an instant.

Just as I learned that there is tangible effect on others depending on the specific words I use in describing my brain injury, it’s equally, if not more so, important that anything that falls into the "”big stuff” category is properly discussed.

I continue to learn as I go. We all do. Rather than beat myself up for any miss-steps, I'll just call it a learning experience.

Just like recovering from a brain injury is a life-long experience, so is learning to live life as a a person with a brain injury.

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Comments (56)

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.

Anonymous replied on

Hello,I was curious about Researching others and i of my TBI I've had for 25 yrs. Yas that's a long time and I wonder how long ppl like me live after receiving one or life expectancy?. I'm alone w/ this injury in this world i believe and idk how to handle it being solo. Id love to meet others in my shoes in this day.

Z replied on

Thank you for having written this post. Recently had an injury and as I come up to the one year mark, I’m realising the potential permanency of it. It’s comforting to read how you’ve dealt with it and to know that it’s okay to be processing the injury a lot during the first year. Hopefully I can get to a place where I resume life without much thought of the injury, whilst finding a balance with accepting my treatments and support. Thanks again and best wishes!

Anonymous replied on

January 31st 2018 changed my life forever! I suffered a left cranial hematoma...Cracked skull and was mid flighted they almost lost me on the OR table...28 years old at the time with two kids by the Grace of God I was able to WALK out of the hospital 8 days later! But no one told me about the life after it. I thought it was over once the staples were removed...I suffer from random depression and sometimes memory loss. It’s a mental battle everyday but I found that talking and writing about it really helps! Thank you for sharing your story

Abubakar Shehu replied on

I just received my final follow up appointment with my doctor regarding my TBI prognosis. I was expecting good news but I received a disheartening and saddening response as I was told that he wouldn't be able to tell me how I would heal and that I would need to learn to accept my current situation as a new normal. I totally thought that all the therapies and rehabilitation activities that I undergo were going to help me heal and get back to my former self but now I know that it wouldn't happen. I must learn to just accept my situation and never put my hope and expectations beyond my reach. I might sound like I'm giving up but I'm not. I rather choose to live a life with love,enjoyment and satisfaction than to live a life full of sorrow,disappointments and depression.

Murray Dunlap replied on

You are right on the money, David. Social media made over-sharing too easy. I left Facebook for that reason. greatly appreciate your essay and hope I too will overcome. My outlet has been writing, and I pray that I can publish my new book, rather that talk about my life. Thank you again for this.

Murray W Dunlap replied on

Not only did I not remember reading this already, but I now see I left a comment. This seems like a pretty good example of my TBI path. I have no idea what I have done. I will forget this very note by tomorrow....

Charlie replied on

Thank you for sharing this post. I had very severe tbi in 1999 aged 16. I am a miracle. A miracle of healing and all the other good stuff. And so are you. And, anyway you get to decide exactly what you are. Anyone that survives this experiment of physical neuro plasticity is a true pioneering hero. You chose to survive (you could have easily given up and said, no thanks, not for me, but you didn’t.. but you are busy wasting time comparing your before and after... to hell with the before...) You are not “injured,” you just don’t fit in to this robotic, oppressed world so well anymore, (and that’s great, because you see the cracks.) You are getting to experience life from another perspective, you get to see through the man made constraints. The “friends” that leave you are the ones losing out, let them and their closed minds go. If everything was always ‘just so’ we would never have the opportunity to learn, grow and make things better. And to the carers - see your ‘charge’ as the whole, perfect, powerful human being that they are and you’ll find this particular experience a lot more rewarding. Love to all

David J. replied on

I myself was in a car accident my Senior year. I spent a decent amount of time in shock trauma and then was moved to Kernan for treatment. I understand what you are writing all too well and wanted to thank you for doing so. It has been years and I still feel myself healing mentally and physically. My best to all who read this and understand this.
Keep healing!

Ana replied on

Thank you David for sharing. I too had a TBI in 1997 and totally relate with your gaps in memory. I struggle everyday wishing of way to find out what to do with my life. I took an acting certificate program at a local Community college and yes I said acting . I know whst you are thinking and I think it too. How is it even possible with amnesia? But then how is any thing possible for me? I wish there was a place or person who could guide me on what to do with my life. OVR was a bust, local temp agencies was the same. Sometimes I wonder if I am living with the biggest curse, the curse of not remembering.
I often wonder, why dream? what’s the point?

Anonymous replied on

Thank you for your article! It speaks to my experience as a severe TBI survivor as well.

Anonymous replied on

Thank you David for writing my feelings down. Also good to know that your memory still checks out...I am almost a yr older than the new you, I think, but stress seems to make the memory thing worse. I am afraid to drive for fear of forgetting where or how to get there. I am afraid just riding in the car...not quite sure what I am afraid of, I am not afraid to die, I am pretty sure I have at least once....oh yeah, this is just now occurring to me, it is the LACK OF CONTROL...do you have this problem? thanks again Mr. Grant

Anonymous replied on

Thank you for your post, I relate to everything you wrote.

Anonymous replied on

David, thanks for displaying that my experience isn't exclusive. It's amazing how friends scatter when *hit truly hits the fan.

Anonymous replied on

Thank you for your story.  I am 6 months into TBI. It is so hard. I never thought my life would change the way it has or the people that are no longer in my life. 

I have a lot of the same issues you have/had. I fight every day just trying to remember what I did the day before. 

God Bless you and your family. I hope nothing but peace to you. 

kt1117@yahoo.com

Anonymous replied on

Unfortunately, I've let myself become defined by my tbi, and that has to change for the sake of those around me. Good article.

Anonymous replied on

Thank you.

Anonymous replied on

David, my husband, Tom, and I have just survived our twenty-eighth   year since his devastating closed head injury, his short term memory is debilitating and can last perhaps one or two minutes.  We are currently dealing with the results of a prostate surgery to remove cancer and with his inability to understand what is happening and lack of short-term memory, it is a major challenge.  I am his 7/24 hour care giver and it is a lonely existence for the care giver as well.  

We have lost friends along the way and we have been used and abandoned by family on both sides.  However, isolation has become a method of survival, if you can understand.  People may say that they understand what we deal with, but I guarantee that they would not be able to be Tom's support for one week.  It takes a very special person to be a true friend, and there are some in our lives that are long term friends who do understand and accommodate Tom's needs and take care of mine.  And we have a son, Mike and daughter-in-law, Amanda and their family that share a bond.  Mike was ten at the time of his dad's accident and my proudest achievements have been to keep my family intact and to raise a son to be a man who knows what is important in life.  He had to mature at an early age.

I have learned this lesson, that the experts and the medical community are not as experienced or educated when it comes to the individual survivor. For example, Tom was given his driver's license, he has mood swings and one of the medications the neurologist prescribed created a monster.  Imagine the worst dealing that you have ever had with a mouthy, angry teenager and times it by 10.  When it happened while I was driving, I grabbed my keys and left the car for 10 minutes, then we went directly to the Emergency Department.  The neurologist was in disbelief and the social worker suggested "anger management" for a man without a memory.  The police and court system do not recognize the differences of dealing with a survivor of TBI.  Then there are the insurance companies and the relationship between you and the person with your file.  Both companies and personnel change and it takes time to re-establish the connections.

My comments probably address the viewpoint of a care giver for a spouse with TBI rather than your story; however, Tom is not able to comment and I felt the need to open this dialog.  Both Tom and I wish you well as you continue to adapt to new changes and challenges.

Michele Kossack

Veronica Ochoa replied on

Hi Michele,
I know this is an old post but it rings true to me as this time. My husband suffered a TBI and he still in the hospital mainly for rehab. It's good to know that even if he looks like a lot of improvement will be made, the sequels are forever present, and that's helpful to me as his caretaker. Thank you for sharing

Anonymous replied on

My feelings, thoughts and experience exactly (minus the windshield). Trying hard, still, after 5 1/2 yrs to not let this define me. It's so difficult. Thank you for sharing.

Anonymous replied on

Thanks for the great read. I had a major stroke in 2000 then a smaller one in February of this year. I've been doing boot camp, but I've also been denying that this 'event' or 'little blip' was anything to worry about. After all, I've done this recovery thing before, right? It's only been over the last couple weeks that I've given my family full disclosure - that I can't follow through plans, I'm impulsive, I get vertigo, I forget to eat, that I walk to places I didn't intend to.Worst of all, I fear that I might never get it all back. I've been really clear on the effects of my first stroke. I always tell people I'll probably forget them, but it's (probably) not personal. But this is a little too close, a little too tender for jokes, yet. It's good to know I'm not the only one who struggles with how much to say and to whom.

Mary

Anonymous replied on

Thanks for writing of your experience i can relate to so much of what you've said. Its so good to read the stories of others and to know we are not alone. i am in that stage of transitioning from needing to talk about it a lot to how to be more ok with what is. You make good points about what's important to share. Its a balancing act really getting it right, not over identifying with the TBI but also not dismissing whats happening. Thank you so much for you sharing .

Anonymous replied on

Great story thanks for sharing your experience!

Anonymous replied on

Yup! 10yrs out...one day at a time. :)

Anonymous replied on

Thank you for writing about it, I had an Subanachroid haemorraghe and can identify with your boot camp. Unlike you I said little for years, I could cope, I wasn't going to be a victim. The result? I simply reinforced the view that I was a strong man and would cope, I didn't cope as it happens. In fact the denial and panic that by wife went into, the trauma that effected my child simply got even worse and I loved in a warzone between them, I got worse and worse. After two years I was a so close to suicide as it gets and the marriage broke apart and my wife still lives in denial of the consequences of a bargain trauma. I don't exist in their lives, I have not seen my child in months, her last words were they I was making out that a brain Haemorraghe was a big deal! My own family turned in me and all of that could have been avoided by support and talking about It. I don't give a damn who know now and it hasn't effected my life or my standing. Odd say it s different for us all, the personalities involved and the circumstances. But I don't want to go back to the boot camp that is for sure.

Anonymous replied on

I love this! I'm going to start describing "it" as a severe concussion rather than as a brain injury. You're right, definitely less stigma calling it a concussion! Great idea!

Anonymous replied on

My husband just had an accident at Indy car races so cal racetrack fell off of top of ladder from rv he had 4 separate brain injuries and had brain surgery 9/11/14 our 32nd anniversary he didn't know his or my name after 2 days after sedation after surgery he was unconscious for 3 wks before surgery they flew him closer to home 9/19 and I drove 36 ft rv with 2 lArge great. Dane dogs by myself the next day we don't have any children. And family is finding it difficult to visit him or me they are scared but if all times of needing families I need them now! He has a long way to go st/pt/ot learning how to walk talk and think even. Feeding himself and following instructions I will stand by him forever but it's so hard doi,g every thing. By myself there are already few friends or family they all say anything. We can do just ask I have broken down and begged for just family. They all have excuses of how busy they are how do you handle it all especially the spouse all alone I am so tired and spent if it weren't. For my dogs and my husband I don't know how I'd. Make it. Any suggestions? !!! 8 G to by

Anonymous replied on

My boyfriend who is 62 just had a motorcycle accident. It's his 4th brain bleed. He was in the hospital for 3 weeks. Then was sent to rehab . It had only been 2 weeks in the rehab. He still had a long way to go before getting discharged. His 22 year old son checked him out of rehab took him home and dropped him off. My boyfriend lives alone. I have made many calls to friends for help but his friends, a lot of friends are no where around. Nore of them call. If I sak for help everybodys busy. I work 40 hours a week. I only see him 3 to 4 days a week. I'm so tired. I haven't got 5 minutes for my sent. I am trying to get a nurse to come into his home to help him. I fill his meds for the week and there are times when he takes more then he should. There is no supervision over him. This is so frustrating trying to find help. I'm on the phone for resources calling these places that say they can help but after talking with them they can't help me. Sometimes I feel like my brain stops working. I can think straight. I've asked his doctor for help. Shes looking into it for me. Its been about 3 weeks since he's been home. A few days ago I had to call the police to do a well fare check on him because I could not get a hold of him. I live 45min away. APS came to the door yesterday. I was there and they ask me if he was OK? I told them he needed help in the home. He can't drive. He can't cook. He can't take his meds right. I've tried to get him back to rehab but they won't take him back. I'm just lost for getting the help he needs. I don't understand his friends not coming around or helping out. I'm so burned out. I don't know to I am anymore. All my time is on him. I would think rehab would help with the brain healing. But I guess it doesn't matter because nobody wants to take him because he left A M A. I'm wondering if someone can help me in some answers. Please help me so I can get him better. Angel,

Anonymous replied on

After decades, I am just coming to terms with the fact that I have suffered from TBI for my entire life. I was physically assaulted and have lived in the community in which this happened all the while not knowing that it happened. I feel very angry and panicky over this and am tempted to talk about it all the time and name names. I know that this is not going to help me in any way and of course, now that I know, I often hear that I need to just let go. it is very hard.

Anonymous replied on

once again David you have put into words exactly as I feel...I am glad that Sarah confronted you bout the memory thing & your bike. I no longer drive because of that...I did drive when I had no one to count on, but now I am indeed blessed w/a partner who takes care of me...

Anonymous replied on

Another "Thank You!" for sharing your story. Having been the "recipient" of a severe TBI at age 15 (29 years ago) and having family & friends being told I would be fine - no lasting effects at all, I have realized in the last 5-15 years that what I considered normal was not. I have also realized, as I have felt comfortable sharing my history with people who did not know me in the past, the harsh sting of the same stigma you have described. 

It comes, in my opinion, from ignorance concerning brain injury and its specific effects, along with other's fear of those different from themselves, which is not limited to brain injury. The way I see it at this point is that those who choose to distance themselves because of the stigma are truly showing who they are and who is worth being friends with.

When it comes to close family, it is a much harder situation to deal with. I do not know the answer to this. I deal with this, as well. Again, lack of understanding plays a major role. However, if those close to us do not want to take the time to understand, what does that say about them? What if they try and simply do not understand? This is an extremely hard idea to take in. The most important thing is not to blame oneself, the world, life circumstances, etc. The way we feel about ourselves reflects outwards and that is something I have to remind myself everyday, while taking things one step at a time.

For all of you who may read this, good luck, and do not ever give up. The more that society learns and understands, the better things will get. Find others who "get it" if you can, learn more about your own situation, and again, never give up.

Anonymous replied on

I had my tbi 5 years ago, I fell through an unlocked basement door backwards. Same thing you experienced I didn't want to tell anyone that didn't know about my accident. Didn't want them to see me as different. Dating has been hard, only told one guy who I had a serious relationship with, and he knew me for 6 months before I had the guts to open up. Current bf knows nothing. I don't work, but did for U Of M for 26 years. My kids dad from a motorcycle accident 1 year after my tbi. My kids have had a difficult time. Sometimes I get angry at someone else in front of them and they are embarrassed. I realize it later but not how inappropriate it was at that time it happened. I feel like I have to hide this secret of my tbi always, it saddens me that I can't trust people with knowing what happened when I had my tbi and what problems I still have, cognitive ones can come out of nowhere, wrong word for the word I was thinking. I laugh when I do these things to distract them. I'm 51 right now. I enjoyed finding this site and reading your story. I see a social worker to vent once a month still but it helps release my thoughts to non family member.

Anonymous replied on

I'm 6 months out from my own cycling accident right now. What you wrote here really rings true for me.

Anonymous replied on

Thank you for writing this ...

Anonymous replied on

I had brain anurism this is my poem I just wrote a year after. Since my brain made me hit the ground. I feel like I'm a member of the lost and found. Every day I give it the hardest I can try. Loosing a year sometimes makes me cry. I got to try harder to pick it up and go. Will I ever be the same I really do not know. I ask God for help at night when I pray. Thanking him for letting me live another day.

PD replied on

Wow nice poem, that's how I felt.

Anonymous replied on

I wish you the best, I have lost most things including my career and car for now. What hurts the most is not interacting with my 4yr old son.

Anonymous replied on

My son was was hit head on by a semi, stayed in a coma for 28 days. it has been a long road and yes it is hard on him when friends & family think different about you. what hurts more is when people say things like be carfule don't hit a semi joking not funny. to make jokes about something this bad that has happened to you. he is doing really good. it's been 7 months. he still has short term memory loss but he's getting better every day he is truly a walking talking miracle. god was with him in all of this

Anonymous replied on

My Life before and after the brain injury It’s really hard to explain what I have been through in my life after my brain injury. There are number of things that have changed which I could realize. The anxiety has level has definitely increased in my personality making me agitated and angry for simple things increasing my blood pressure. Whenever someone scolds I can’t control my temper and reply straight back at them. I am not so confident about myself which previously I was which definitely has hampered my career and not taking so serious about my studies which was my prime importance for my personal long term growth. I have lost a lot of friends and find myself very lonely across the borders. I even broke up with my long term relationship with my girlfriend and really don’t know what did I say to her causing a big problem. I thought to myself and try to positive at whatever happened but even then there is a greater impact on my life and my career. My priorities in my life has definitely changed and trying to be satisfy myself with at least a degree coming all the way long from my home. I have thought my completing my masters however hard it was in accounting and apply for residency. But coming to this point of life my career and destinations in life has changed and don’t really know what my future would be. Human beings live in the society where there is lots of cooperation and help between people and friends. I miss all the support that I would have got with my life on hold with that incident. It’s really hard thing for me to relax these days but don’t know why. If I consider my sleep it seems all good but even then I get tired quickly without any work. In addition to this I sometimes do have palpitations of my heart beat without any reason of walking quickly or running. It’s quite astonishing. I really have mixed emotions as whether I could be able to do whatever I have planned in my life. It’s definitely affected my short term memory followed by stress. I am not able to focus and concentrate on things which are very important thing while studying. I do realize I have become too emotional and things making so upset. I do feel I have wasted a precious part of life for no reasons. Apart from that I have trouble with giving my time to the lawyers and processing things which is a tedious process where I should not be involved so and just think about my studies. But I had to be involved as things are not in my favouor and I should be able to speak for myself as human rights. I would not be able to change the things in the past but definitely be able to work on my future and my brain injury is not letting me do that physically creating more fatigue and mentally change in my thinking pattern more towards negative rather than being positive side of my life. I sometimes think why I have become so impatient and rushing too much when things could be carried on so easily. I really don’t know the reason behind it. I may look good physically well sound enough but really don’t know what goes on with my brain creating problems to myself. Things have changed a lot with me my career, personality and my well being. I hope it would go well with psychological counselling but everything will definitely take me a lot of time as usual. My background as I am coming from a third world country where medical research is a long way to go to even when I go back might have some complication on psychological part of my life creating problems. I definitely have made my life boring living to myself. I presently having problem with constipation and it’s been a long time. I recently notice dark circles in spite of not much of sleep disturbances. I am beginning to doubt on things becoming so sceptical with the things that I do or must be lack of confidence in myself. I find myself keep on talking with people even if the people get bored of my talking which might be relevant or irrelevant to others. I really don’t know much about how to avoid talking too much which might get me into trouble some way.y Apart from this I sometimes I don’t really remember what I was doing I would be doing something and in between if I leave what I was doing I would be forgetting what I had to continue doing the first thing that I was doing due to short term memory loss which makes me frustrated and leaves the things undone. I really have to remember every appointment that I was supposed to meet somebody again and again and had troubles not keeping with the appointment which are really important ones and on which I would have 24 hours notice to cancel the appointment. I really think I am making things more complicated which aren’t good for me. Just sharing my story Bepin Charan Shrestha...... These are several major things which have really changed and which would definitely have an effect on my life .

Anonymous replied on

I too have become sick and tired of retelling my story of being a brain injury survivor. I have begun to move on and live as a thriver. Thank you for sharing your experience and proving that it's possible!

Anonymous replied on

I received a TBI and recovered quite well. I'm going to college now to be an OT. I assist people who have brain injuries right now for work and it's sad to see how they are. I'm so happy to hear you're doing good though.

Anonymous replied on

I hope you can say something about your decision and journey back to biking again. That's what makes me saddest, that it'll be better, safer for me not to ride, that there's less chance of putting my husband and daughters through that again. But who can say for sure? What do I need to know about my recovery in order to make this decision...? Is it that cut and dry: you fell and have had a TBI so no more athletics that carry a risk of hitting your head - which is really just about everything.

Anonymous replied on

I am 62 y/o & still have problems with post traumatic amnesia. I got a TBI when i was 13 in a car accident. I was in a coma for 2 months. I don't have seizures anymore, but my short term memory is kind of flakey.. Thanks for your writings, they are helpful. Deb

Anonymous replied on

My son was attacked and hit in the head with the thick end of a pool stick, hit hard enough to break the pool stick. He had surgery to remove tpart of the skull so his brain could swell and 2 weeks later they went and put the piece of skull back in. This happened in 2007. My son isn't the same. I think the hardest part are the mood swings. As a Mom and being here 24/7 with him we clash alot. If I give him time within hours he really doesn't remember how he had been acting. I love him so much and I have seen him go from very outgoing to being very reclusive. His friends have seemed to have given up on him. He makes alot of bad judgment calls because he can be impulsive. He takes medication but I feel that he abuses it and this is a very hard subject to approach him with. He watches tv alot but mostly history channel shows, hes very smart but in other areas he needs to be reminded to take a shower or other daily routines. His siblings and my husband don't deal with him very well...they get angry or they distance themselves. I feel for all that are caregivers and for the ones suffering and living with TBI everyday. Their are many challenges they face that all of us take for granted. My son will be going somewhere and he comes back into the house at least 5 or 6 xs in case he is forgetting something. He has post it notes all over his room to remind him of certian things. I love my son and I have to dig deep sometimes for more patience...I do cry alot but always privately. Reading these stories has given me much greater insight. Thankyou.

Anonymous replied on

Wow - this is a great post. Thank you and everyone for sharing their story. I can relate to absolutely everything you said, as I, too, suffered a TBI in 2007. I love the point you made about "concussions" vs "traumatic brain injury." I thought I was crazy when I noticed this along my own journey. 

To all of the survivors and family members, hang on tight. It's a very rough road, but the good news is the brain is resilient and with time and a lot of patience, things can improve. We may not be the person we were before the TBI, but who says we can't be better? 

Peace to all of you.

Anonymous replied on

Hello thank you all for your stories. I'm Bob I had a TBI in 2002 (I was 17 at time,) due to a car accident. I was in coma at the Walton Center for roughly 2-4 weeks. When I was finally released my work who stood by me when was in hospital spoke to my dad and said there will always be a job there when ever I wanted so pretty much with in 2 weeks of getting out I was back working in cafe only washing cups but it was getting my brain working. When nurses came round to see me at home (checkup,) they were more than happy with me being back at work and never seen them again.

After coming through evil things my mother (toughest part of recovery,) had said and a relationship break I moved away. I was working in a pub that's when I really noticed my side effects/problems. My short term memory was bad some times I would forget to charge customers, but the main problems are my mood I go from being happy and calm and if something winds me up I instantly turn I go red and my right shoulder starts shaking. There is no middle bit with me I go from ne extreme to another. The other (most noticeable,) is my right arm it shakes from the shoulder when eating drinking its most noticeable. When I told docs about these they just prescribed me tablets which effected my sleep and didn't help with either of the problems.

I have had same friends for 15years or so they know me inside out but when I meet new people I never tell them about TBI or don't want to, if someone ever asks about shaky arm I just say I need a drink and laugh it off. I am 31 years old now I have never had a career but always worked low paid jobs laboring shop assistant etc i would love nothing more than a career but when I do curses I always flap on exams tests etc.

I still live in hope that one day I will wake up and it will all be ok.

Thanks again for all your posts stories

regards

Bob.

Anonymous replied on

I thank you some terminology I did not know. The brain ceasing to lay down new memories. I have for eleven years called it "blinking out". Doctors have called it absence seizures. I've been on an anticonvulsant for most of the eleven years for it. But I still have them. Makes a lot of people nervous because no one can tell when they are happening. The first time scared the hell out of me. Now they are annoying cos I'm like "ok, how did I get here or what just happened, I missed it. I could make a very long list of all the differences my TBI has made in my life but I can never remember them all at the same time. (That's suppose to be funny. Lol) I had a fall. My then 7 year old grandson was the only one there. I did not even know I had been unconscious till he told me about it 3 days later. Anyway I went to my doctor the morning after my fall and got "post concussion syndrome." Had a headache 24/7 and finally it hurt so much and the sun was blinding me so I went to a walk in clinic. The doctor there sent me immediately to the hospital and faxed a requisition for a CT. Well ER Doctor decided I didn't need one and sluffed me of with a prescription for Percocet (which I never filled cos that stuff is addictive). I left in tears cos of my headache and wondering how a doctor could ignore the requisition. I spent the whole summer with numerous trips to my doctor, the walk in clinic, and the ER and no one would listen to me. I started limping and falling down. (I even fell off the toilet once. Again, funny?). By the time an ER doctor took me serious it had been almost 10 weeks since the fall. I got booked for a CT two days later. By the time I got to that appointment I was slurring my words, the world seemed like a very silly place and a friend with me said I looked like a stroke victim. Rushed into surgery with what I do remember the doctor saying a "massive" subdural hematoma" both a chronic one plus a new recent bleed. I still have a huge amount of anger at this Dr Ming that turn me away when I first went for a CT. I totally believe that there would have been next to nothing in brain damage. I was 48 when this happened. I was studying for a degree then. Now I basically don't read. I can read but I just don't remember what I've read. New learning just doesn't happen for me. I'd like to sit down once in awhile and not have to jump up cos I forgot my glasses, didn't turn off a light, forget to let the dog in, etc. And I'm talking getting up two or three time in one sitting, all day, every day. There are too many effects to make a list. I could probably be ok with most of it except. This lack of motivation and difficulty getting started on anything. I tell people that I just want to want something, anything. If you told me that tomorrow I was going to Disneyland it would fill me with dread. I wish someone had an answer for this because I haven't accomplished much of anything these last eleven years. I'm often told "just do it" but it doesn't work that way. Dread, how difficult it is to plan, total lack of interest and if someone tries to push me, anger

Anonymous replied on

I experienced a TBI in 2009 while mountain biking on vacation. I deal with some memory lapses and paranoia. I've only now, begun seeking support groups and resources in coping as I thought I was OK. I pursued and completed a degree after my brain injury, as well as have gotten back on the bicycle, completing four triathlons so I seem to have thought that I was healing fine. In social situations is where I find my challenges. At this point, in addition to my reaching out to discuss my brain injury, I want to help others who are in similar situations. Thank you for your posts!

Anonymous replied on

Thank you for posting a bit about your experience as a person with a TBI. I relate to your decision to step back from telling people that information, changing it to a concussion. I've begun to follow your path. Unfortunately my initial TBI with PTSD is more visible than before due to multiple TBIs and SCIs since the early years. I'd appreciate advise regarding presenting myself to rehab programs and specialists. How much do I tell them? In fact, I'd like advice about presenting myself in general. The multiple TBIs, concussions and Spinal Cord Injuries (SCI) prohibited me from giving testimony for my brother in his son's custody case this year. The first TBI was two weeks after my wedding day. I was going to continue working at Bed Bath & Beyond as a store mgr while my husband handled two internships and grad school. Everything changed that day. The warehouse was overflowing with floor-to-ceiling stacks of shipping containers. Those near me toppled, striking repeated blows to the back, base, top and sides of my head. I fell unconscious & given a Dx of TBI, post-concussion syndrome, brain contusions, cervical SCI, etc. Injuries to my occipital nerves, endocrine glands and blood-brain barrier were recently attributed to this TBI. There've been multiple TBIs, concussions, comas. In 2014 I fell forward striking my head on the wood floor causing significant injuries to my vision, the frontal-temporal lobe, a new TBI and Spinal Cord Injuries. SCI include compression fractures to 27 vertebra, sternal dislocation and fractures, and bilateral rib fractures. These restrict breathing so I now require oxygen and ventilation.24/7. I was hospitalized for 7 months at UCLA after this fall, during which I attempted to transfer to Mayo Clinic for consults with surgeons or their TBI/SCI rehab program specialists. Mayo received reports by my out-patient providers, personal friends and patient advocates. We had an Angel flight for transportation. A DC plan. Mayo still responded "there's nothing anyone here can do for you" before they'd seen me. I've had the same response from out-patient programs. One final note My husband of 23 years moved us this year to a rural area of the state, away from our home since 1999, away from medical resources that were healing me. He was my biggest support. Someone I've been in love with since I was a teenager, but now is cruel and physically abusive. He charms police when called. Since here he found "caregiver respite services" through a local hospital that sends him to a counselor and a support group. They send strangers to "watch me" so he can be gone for long periods of time, even though I don't need that. He tells me that he is no longer my caregiver or family member and wants me out of our home and his life. He won't go to marriage counseling or try anything to repair or have fun with me. How do I make all of that something a doctors, rehab program, etc is willing to bet on?

Anonymous replied on

I do not mind telling people. That way I really found who are my real friends. And part of my TBI is isolate, so I do not mind if people leave me alone. I kinda like it. But for those who like me as I am, I am happy to say hi.

Unafraid replied on

Dear Permalink....loved your post. Identified with you completely. I notice that most people think you are crazy or something if they find out that you are a brain injury survivor. Little do they know that we are crazy STRONG, rather, to get through something so horrendous. My prayers to you and everyone on this board. Stay strong, you know what you have had to endure. Love yourself, always, and God bless. It gets much better.

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