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.
This is spot on! I honestly felt like I was the only one who felt like this.. I was in a Traumatic Vehicular Accident in my childhood and I was diagnosed with TBI. My motor skills, my speech, and my development was impaired from day one. I attended physical therapy afterwards and was rehabilitated somewhat as far as my motor skills, but I still feel clumsy. Throughout my Teens I've always felt different(like I don't belong, like I'm not worth it). My dad was always distant as well as verbally abusive and manipulative(this made me feel much worse). My mom has always been there but she loves me deeply and worries about me greatly, I don't want to disappoint or hurt her with how I truly feel. I'm currently involved in therapy as a young adult struggling with depression, suicidal thoughts, anxiety, social anxiety, a messy breakup, my parent's divorce. I've overcome alot, I'm working, I'm a musician, and I'm an artist. I just want to say I'm grateful for you writing this article and helping me feel like I'm less alone. Thank you!
For the attorney responding 5/13/15: I was an attorney when I suffered my severe TBI in a car wreck 20 years ago. My career path nose dove, and I retired. I understand your comments (multitasking is no-go), and I too appreciate simple things (mostly outdoors). Don't waste time thinking about the past or persons' perceptions. Just focus on finding and doing what makes you feel accomplished. You CAN do this! (That person who got through 3 lousy years of lawschool 'ain't' gone. Think about focusing him/her on finding a way forward. ie. New facts (TBI) but same law (guts bring glory). Good luck, Counsel!
OMG...I am so there! Because my BI was caused by medication...there are no external indications...so people don't get that I am not the same. One of my kids is in the military...and came to our home state on leave recently, with his wife and kids. I wanted so badly to see them...but he could not understand that I could not spend time with them at his in-laws..where there would be 20+ people milling around...that I needed it to be in MY element. So...much as it broke my heart not seeing them...I just couldn't do it. So many people tell me to just "suck it up" and do things...and I DO...more and more...but some things I might not ever be able to. I used to like being "different" than others...but now I wish I could just blend in AND hang onto my little bit of sanity at the same time.
All of these things can be annoying for sure. For me almost anything that starts "You JUST", is the kind of thing that makes me feel like kicking some ones ass. A speech pathologist, at group use the 'JUST', work over and over talking to me one day. That was the last time I went to group. I JUST needed to make a list. I JUST needed to make a schedule. I JUST needed to get organized. I JUST needed to make a plan. Maybe, I JUST needed to to him to shut his mouth. I have marked loss of parenchymal tissue, gross appearance of encephalomalacia, gliosis and glial scarring, bilaterally in my frontal lobes. A 1x11/2 cm hole in my Rt. temperol lobe. Lets see that is my planning/organizational, executive functions, and good old memory. W.T.F
Just yesterday my husband called me lazy. Is been a year since my head injury and today I been crying about it all day alone I feel as no one understands me I hate to depend on people I want to drive again, work and just be the old me this hurts me and sometimes I ask myself why be alive living in these situation with this head problem I should of just died
A few years ago I could memorize everything I needed for a court trial with no notes. Now I have a one task brain in a multi-task world. It forced me into retirement and a very simple existence. Most days can be so frustrating it's beyond explanation except to shout and curse for a while. I've lived in this different world for 2 years now. The damage is permanent. I enjoy the simple things now. The laughter of my kids, a sunny day, just whatever. Those who don't know this world expect me back to work soon. If they lived a day in my head, they would not ask questions like that.
Last week my coworkers were asking about something and I could not recall the situation at all. This is pretty typical of me since my head injury. I always need a couple of minutes to focus and try to remember anything, it's really intimidating when people are staring and waiting. While I was trying to remember one of my coworkers made the comment "you're really going to milk this head injury as long as you can," she was joking but it absolutely mortified me. Ever since then I try so hard to avoid situations where I cant remember and I feel like i should never mention my injury again, which is pretty difficult since it is a part of my daily life. Careful with your words.
Another thing to add would be "have you noticed this is all you talk about" i don't know about anyone else but this has made me super insecure and scared I annoyed people. I basically woke up in rehab and was forced to withdraw from college for the semester and stay at home alone. My family has told me that it's not annoying and it makes sense that it's all I talk about because it's all I have that it going on but it still sticks with you. Of all the things I forget so easily I can't forget that.
This is me I am Sherry, I know who I am now! I am different, But it is still me. I'm not who we knew, but this is me. Time has pasted, I've stopped fighting to Be as I was.I've stopped trying to find My voice. I've stopped searching for Who I once was! I can not find what I have lost. I can not go back to what I was! My fear has come true I forget the voice I once had! I forget how I was. I had to let go of Trying to be as I was. Trying to remember was holding me back from Being who I am now! So I have become a victim of a man who ran a red light. Forever changing me! I had to surrender and except these changes in me So I could move forward, and just be! I am me., No longer a prisoner inside myself. This is just me! So when you see or hear me, don't remind me of how I am different or sound. Just accept me for how I am now. I am Sherry. This is me! I just sound ,look and act different! But it is me! Couple years after Car accident resulting in TBI. Life Is Tough but what makes it Tougher is Loved ones don't understand me And I am now alone even Distant from My son I Love him and Miss him so Much I wish I could explain myself better !
Me Who am I? I hear myself speak yet I don't recognize the voice . The words I once spoke are lost inside my head , I have to search and search. I look in the mirror and I see me ,yet I know something is different,but I can't tell you what . I know I'm different! I look deep inside for me, I try so hard but I am lost, I am there I just don't know where. For I am lost inside myself. I cant find words, I don't remember when or even where . I cry and cry, I ask myself,why has this happened to me !.. I was sharp, I was bright. I once had fight I had no fear . I never said, I can't! I just did it.. I was neat! I was organize..I knew where everything was. I was Great with money ! I Knew where every penny was spent..I Loved to have fun,and play ! But now it's gone! I won't stop working for the mind I once had. I won't stop working to be the Me I was! I want my Confidence back! I can't go forward for I'm afraid, I fear I'll forget the me I once was. I must be brave! The me I am I'll never except! I am different now. I want Sherry back!. So forgive me if I repeat myself I'm not being rude if I dont Know where or cant remember when. Forgive me,I might not even Remember you! I barely know who I am, since that Aug. night some guy blew through the Red light ! Im trying hard to find Myself... I won't give up until I break through This fog in my mind and I'm the me that I once knew!A better me will do! Old me or new I will get there. I am lucky to even know I am here! I will get there, hard work and lots of prayer! Sherry !! 2006.
I had two brain tumors removed years ago., resulting in total deafness. My least favorite thing for a hearing person to say when I don't understand what she said by lipreading is: "It doesn't matter."
Everything I read in this article is me. My daily life is throwing theses symptoms at me regularly. Although I feel ok I find it tough to deal with. It's just one small piece of a bigger circle.
Everything I read in this article is my son. He had a brain injury in October and recently turned sixteen. It is very hard and I've now realised I have said some of those things much to my dismay, I'm going upstairs to give him a big hug and apologise to him! I try mainly to be positive but not always easy. Thanks for the info!!
So true, people just don't understand what we go through, everyday is different and a struggle but you do your best and just tell yourself it's going to get better just take time for the brain to heal. You just got to stay positive and pray everyday that your brain will heal. Life is good even living with a brain injury just got to take it one day at a time.
I had a snowmobile accident that led to TBI. It also damaged my left eye so my pupil wont dialate. Im dizzy whenever awake....this article helps me see im not alone. People just need to b understanding. My article is www.mlive.com. search miracle january 2010. Probably 1st one about walking miracle
I know what you are talking about being alone. It is so hard to be alone. Especially when people that used to love you walk away. That is what happened to me. I can not afford therapy so don`t bother trying.
I am 56 years old and due to my health issues I chose to just not date. I do not want to get hurt nor do I want anyone to take advantage of me. I hope your find something that will make you happy Dave. If you wish to contact me my name is Janice and I am in Canada
The man I love has a pretty severe TBI from an accident eight years ago. He is great because he ended up being the guy with the perpetually great attitude and wonderful spirit. His memory is bad and he can't remember more than 15 minutes. He remembers better for me. When we first met his memory was a few seconds. His sleeping habit is pretty bad but I think he gets enough sleep overall. The main obstacle we have is outsiders. Too many NOSEY people who don't get it, or don't understand how this works. A lot of my friends don't understand how this makes me happy. You just have to ignore other people and live your life.
My name is Gissel I'm 15 I was in a car crash in 2014 I can. Barely remember my 8th grade year or my childhood memories or my birth mom (she died in the accident that caused me to loose my memory) I remember her eyes and her blood and I had broken the front windows glass we were hit twice it was a 3 way car crash my cousin was okay he was in the back all that happen to him was he head hiring the side he was fine he got me out of the car and out of the front window I slipped into a coma for a week I didn't remember my dad or my step mother or my uncles and aunts when I first came back "home" only it wasn't "home" its just a place I have trouble remembering things and sometimes I wake up where I don't remember a thing and some times I remember everything but that only last a couple of hours I want to remember so badly but I don't think there is a chance because I have internal issues more often and its been getting easier to remember and now when I wake up and forget its only 2 times every 3 months I am afraid I've been depressed and I still am scared that one day I will never remember what I love and hold dearest to my heart right now I am living proof of a now and loving and living it I love life but I don't want to loose it in an instant can someone just someone tell me if there is an easier way to deal with this instead of therapy and meds I would love to hear it I really wood
Ive recently begun a relationship with a man who has TBI. He was in a car accident years prior to meeting me. The past months have been fine, but the past week has been extremely difficult as hes been very much different. Slow slurred speech, the only way to describe it is a "drunk" like state. I can barely understand him. I try my hardest to help, and to understand and allow him to be independent. IF anyone has any advise to give please do so.
I was hit by a truck while on a motorcycle in August of 2013. I was thrown 58 feet. I literally was thrown out of my shoes and socks. My leg came out of its flesh and broke the bumper. My head broke the windshield (no I didn't have a helmet on). I remember everything until the ambulance came. I have since met by chance the doctor who lived on the street and saved my life and the policemen who was the first responder. I met them months after the accident in public by chance. I recognized them. They thought I died. They said it was a blood bath. I had many operations. Shoulder replacement, pins and screws in my hip, thigh, knee, calf and ankle. I dislocated my other shoulder and fractured my back and neck. My scalp was peeled back and sewn back. I have a traumatic brain injury. Why am I writing this ? I guess it feels good after almost 2 years to put the accident in writing. I am not mad. I do not seek pity. I am back living at home with my wife and 2 sons after months of hospitalization, living in a rehab facility and much physical and mental therapy. My life and the life of my wife, kids and family will never be the same. I really don't know how to end this post and put a big bow on it. I guess it could be a lot worse. But I guess it couldn't have been at all. But it happened. I am alive and happy for that !!! For anyone else who is going through a similar event or has a friend or family member going through a similar event. I am there for you. Really I am.
To the people who replied to my question and request for advice on how to support and reassure my husband following his accident - thank you so much. I have read both replies over and over and will take and use your advise. Thank you for taking the time to help Many thanks
It's been over 10 yrs since my car accident caused a head injury. I see a therapist since my accident. I have short term memory loss, brain damage . It hurts so much when family gets frustrated with me . It is so hard to try to make people to understand..I've been told by family to stop bugging them because they feel like they have another kid, can't you think for yourself? Many other hurtful things have been daid to me. But do they not realize how hard it is? To try and tell them any conversation you cannot and do no longer able to say the correct thing you want to tell them and some other sentence comes out .I remember how confident I use to be . And that it bugs me so bad to. I'm forever talking to myself telling my self that I mess up again .I wish people could understand .I myself don't understand and I hate it.
To the lady about her husband (January 17th 2015; 4:31 pm)...I sustained an ABI about 5 yrs ago along with both my children. We have gone through quite a journey just as you and your family are. We were told that my son would never pass a 6th grade level and he has blown all the doctors away with his continued development that should NOT be possible..currently he is 15 and is totally in love with QUANTUM PHYSICS of all things! Total miracles...but certainly not without MANY challenges.
I applaud you for your incredible faithfulness to your family! Stay the course...many of these things will subside with time but of course you cannot ignore them while they are present. I have found that most ABI/TBI issues the patient suffers through have an element of truth in them and the injury is blowing it out of proportion. I don't mean that you would actually leave husband, I mean that he has a genuine belief that's at the core of his issue, but it could be incredibly small in reality or more likely, that the belief is NOT ABOUT YOU, but more about him...he can't understand how you could possibly want to stay with him. Many people think that they're value to their family has to do with their ACTIONS...the things they provide for the family. Therefore, when injured like your husband is he may not be able to understand how you could possible have ANY true feelings for him other than pity (and men especially despise pity). By your comments it seems obvious that his true value to you has NEVER been what he can do for the family (those are just needed perks) but rather just simply HIM! We don't usually talk about it this way, but for many the highest value their significant other holds for them is "to be KNOWN" by that person. Actions can be replaced in other ways...things he used to do, but for you NO ONE can replace being known by him. If you agree that this is how you feel (or something similar) then getting him to understand that his value has ALWAYS been this to you, then it might help him with those feelings. I have struggled through these feelings myself and have felt like an empty shell of a person without real value. But realizing what I just mentioned was huge; understanding that my presence holds emotional, mental, spiritual ties in place for my family and that there is no greater value than that!
All that being said, if he isn't already, at some point he will probably deal with the very idea of being known himself, because for him this has all changed now. Having walked through this so far, I believe that our core personalities may not necessarily change, but the bridges we have used to express ourselves have been destroyed. It takes a newborn many years to develop ways to communicate but we expect that...after something like ABI it takes years to find alternate ways to communicate ourselves again, but we don't realize that so added to that journey tends to be fear, anxiety, anger, depression because we don't understand what's going on and if we will get where we need to be to ever feel normal again. But it's just a new normal...he gets to explore and find new ways to express himself. It's hard, but it's worth it! The brain is incredible...its greatest strength can also its greatest weakness...belief! Right now it sounds like you have an incredible amount of belief...keep pouring it on him!!!
I think this article should be spoon fed to the general population. I have a best friend who is learning to walk and talk again. And he has made leaps and bounds. I just find myself wanting to remind him how athletic and awesome he is. And I've noticed he gets a little thrill when I remind him of how he does things. Like washing his hands and using his hair to dry them on. Or the way he cooks and the way he hides things. He's so strong and his family is great. I don't want him to get in the dumps. I want to keep him pumped up. This article really confirmed what I was thinking. And the person who commented about people needing more empathy couldn't be more correct. Thanks for this article. I'm going to spread it around.
Omg. People tell me all of these all the time. I just wish people could understand. If things don't make sense to them, that's because they don't to me either half the time. Seriously, this world needs more empathy.
You know what you're doing don't blame everything on your brain injury when they don't know how it takes affect on your mood, speech, movements and character.
Having suffered an ABI early last year I can really relate to some of these things - particularly everyone saying "you seem fine" when you feel like you are struggling!
In response to the lady who wrote a comment on 17th, 2015 at 4:31pm about her husband who is recovering from an ABI, I'm not an expert but I wanted to reply with my thoughts and hopefully help in some little way. Both you and your husband sound like incredible people. Him for battling against all odds to make such an amazing and quick recovery. And you for being there supporting him throughout. My advice (as I say I am no expert so take what advice you want and ignore the rest!! And all I know of your husband's ABI is what you have said in your comment so I may get things totally wrong)...my advice to you would be to read as much as you can about brain injury. You are probably doing this anyway as you have found this website but get to the library and find books on brain injury and look at the Headway website which has some good leaflets to download. This will help in your understanding of what your husband might be going through. Everyone experiences a brain injury differently but maybe he doesn't yet have full insight? He is possibly still realising/coming to terms with his situation? And low self esteem, anxiety, depression and suicidal thoughts are all common effects of an ABI. It's still very early days for him and he probably has a long recovery journey ahead of him. Try not to be too upset by his words and not take too much of it on yourself. He's in a safe place right now and hopefully as time goes by he will start to gain a better understanding and insight and see that you really are there for him. Keep telling him how strong and determined he is and celebrate all his achievements no matter how small and hopefully he will begin to take it on and feel a greater sense of self worth.
Would he be able to access a counsellor? Maybe through the hospital or Headway? Then he can talk about his worries to a professional who can help him explore his thoughts. And any information about the ABI that he could take in could be useful too...like those Headway leaflets...before I saw those I didn't understand what on earth was happening to me and why I felt certain things. It was like a light switch was turned on when I read them,
And maybe you could look at some counselling for you to help off load your worries and all the emotions you have had to deal with? I imagine Carers UK have a helpline...maybe you could start there?? And can a friend watch the kids now and then so you can have some "me" time? A nice bath or just an early night? Look after yourself and you will be able to look after your husband best.
And what do you do when you go to see him? Could you do some simple crafts together? Listen to some nice music? Read stories/the news? Skype a friend? Can he mobilise/be taken on a wheelchair outside for a wander around the hospital grounds? Maybe doing something nice together would take his mind off things and you could enjoy having a laugh together.
Just ideas...but I hope they might help. I still have a long way to go on my recovery but for all the things I have lost I have gained an even stronger relationship with my partner and a real appreciation for life and the beautiful things and people in life. Good luck on your and your husband's journey. The world is on your side xxx
This is so true. I suffer from a acquired brain injury as a result of an accident and it's so hard to explain the feelings I have.. Arguing with someone is especially hard to deal with as u don't know If what they are saying is the truth or if they are using the memory loss against u and making up things.. I find it hard to trust anyone as I can't even trust myself.. This will help paint a less confusing picture when I'm trying to explain things!
I was run over by a car at the age of 11, the car was doing 60 - 80 km/h and as a result of the accident i got a sever brain injury and the most annoying thing about people that don't understand the feeling of having a brain injury is that they think your incapable of doing things for yourself because you have a injury. And when you get called a retard and mocked because you stutter words constantly but you can't help it because its now a part of you. Or when you have a shorter temper than most people and snap or when you have problems that are affecting your family so much that they can't take being around you and separate because you are too much of a burden to them.........
Having a brain injury is the worst thing in the world, it ruins your life.
Thankyou for sharing your comments, if any one could help me, I'd be so grateful... My husband had a very serious car accident in August 2014 and is still in hospital. He was scored a 5 on the GCS scale upon admission, and shortly afterwards a 3- we were told there was no hope and we were as a family devastated and prepared to say goodbye to my best friend and partner of 19 years. I told the doctors if he remained in VS I'd still love and support my husband, and I 100% meant that. However just 5 months later, he has been an inspiration and fought so hard to overcome everything he was up against. He is fully awake from coma state, he had his traceostomy removed (something we were told would never happen) in October, he's eating and speaking and beginning to overcome his physical difficulties with strong rehab care and his determination. What I worry about and would like some advice regarding this is, his emotional state,he's convinced il leave him for someone else "able bodied" his words not mine. I always reassure him that I won't leave him and I love the new man he is as much ,if not more than before, to see such strength to overcome such obstacles and prove experts wrong has blown me away, and made me so proud to be his wife and to embrace our second chance after coming so close to death, but he won't believe me. It has become almost an obsessive thought (discussing for around 6-7 hours a day- I'm at the hospital for around 8 hours a day) and is followed by suicidal threats should this happen and I'm terrified I won't be able to convince him I mean every word. I've received advice from neurophychiatrists how I should handle this (distract or reassure) but how, as someone effected by Severe TBI would you handle this please? I desperately love him, we have three young children who have adapted brilliantly and treat daddy just like daddy. We just want him to realise he is so special and we feel nothing but admiration and love for him.
God Bless you all who have posted on here. No one can understand your struggles day to day except you. May you find peace in rebuilding your lives and support where/when you need it. This country absolutely fails people with lack of support systems.
August 19,2009 I was rear-ended by a woman texting and driving at highway speeds and I was at a dead stop. The impact sent the rear drivers side tire into mt back and caused the shock to explode sending parts into my head. By the time the reached me my heart had stopped and I was not breathing. I was fortunate to be resuscitated but I lost 7 weeks of memory and those memory issues occur absolutely every day. I am constantly retracing my steps or re-reading the same paragraph over and over until it sinks in. I used to be an avid reader and I think I miss that part the most. Some days I feel like throwing in the towel but I refuse to let this ruin me!
Hello I had been diagnosed and cured in 2007 of a brain tumor, the biopsy had said it was in my head since 2003. I was cured in 4 and a half cycles of Chemo-Therapy and I had done so, through my positive attitude, while going through Chemo-Therapy I would hear nurses fighting to get me as the patient they would tend to on their rounds. After Chemo, I was home schooled when I got back, and too many people said to me "You're lucky to be alive" and I realized as a survivor, how belittling that sounded and felt to me. Because I wasn't lucky I have a WILL within me to live and a STRIVE for LIFE! God Bless ANYONE who must go through these horrid conditions of Chemo/Radiation Therapy.
Hi my name is dave. I sas assaulted seven years ago. And it has completely wrecked my life. I have spent so much time in mental health care due to taking overdoses and alcohol abuse. My family say I am lazy and useless and have never given me any support. I now live alone and very often wonder if it is worth going on. I fall in love with every woman who is understanding and kind to me. But I am 52 and most of the time they are to young for me and I have to keep away as they dont realise what I am feeling.and I get very depressed. These women are all in health care as I dont have any freinds does anyone else suffer from the same problems thankyou dave...
Background: I was a timber feller for a logging company and in 1999 i was hit by a widow maker. I wasn't even actually working at that exact moment; just happened to be standing under a tree which a brisk wind shook a dead limb out of which struck my hard hat. Out of these 9 things i get told all but number 7 & 8 frequently. Mostly from my wife. The one that really pisses me off the most is the "you're lazy" comments! I'm not lazy and I'm actually a hard worker. It's just hard to stay focused and keep interest in what I'm doing. If I were lazy I wouldn't have returned back to the same job, which by the way is the hardest job I ever had in my life, just 2 month after spending 2 weeks in the hospital, and do it for another 2 years until I screwed my back up and could no longer do it. I am even guilty of one of the things. I tell myself often that I am lucky to be alive, but then I immediately go to the other end of the spectrum and start thinking "no, maybe you would've been better off if it would've killed you then your loved ones wouldn't have to go through the after effects". And that is weird because the after thought always comes in that way...not i maybe would've been better off, rather "you would've", and "then your loved ones", so that tells me that something off because of the way my brain goes from as if I'm saying it to myself to immediately as if I'm saying it to someone else.
I have severe TBI from a horrific car accident now I am being told I was a Aweful Mother and the sad part is I have no memory of it at all I have 3 grand babies that I can't be around because of it
I live with post tbi now due to a horse accident, the horse fell over on top of me and slammed me head first to the ground. Life isn't as easy as many may think on outside looking because they do not know what we who live with this do feel, and for myself most days can feel like being stuck in your own body watching the world knowing what you want to say or do and know how it needs to be said or done but still can't get it right that is a life of hell some days. This is a great article for many to read and I myself have educated myself so I know what I, dealing with and try to show others so they know and can handle dealing with me but sometimes not even that helps because people choose not to deal with the changes that come with post tbi so I do deal with many people in my world who do not care to adapt to life after so I now raise three kids on my own for most part and as if I never had this happen and that isn't easy but for these babies I keep going and keep trying to live life as normal as possible
Unless you have a traumatic brain injury you'll never understand what it's like to lose everything that you into and you are never the same again, you are FOREVER CHANGE...but I'm glad it happened to me instead of my two sisters. But most of the time they don't understand!!
I had been diagnosed and cured in 2007 of a Brain Tumor. With that all of these side effects which were spoken of, above, have surely befallen me. I applaud whoever wrote this article and how accurate it truly is to how WE the survivors of Traumatic Brain Injuries (TBI's) feel. Especially with how in the final piece that you discuss. How we all HATE when anyone says to us, "You're lucky to be ALIVE!" because we aren't "lucky" at all, we were STRONG individuals who loved life too much to just want to give up, as many can if they feel too weak. Not only that but it makes us feel Shame when people compare our victory in the war against cancer to just simple luck.
It is 7 years on since this comment was posted, but I wanted to reply to the person anyway.
I hope you are still doing well.
I was diagnosed, had surgery and treatment for a malignant brain tumour too, 4.5 years ago now, my next checkup MRI is this week, 1 day before my birthday.
I found this website and have been reading all the comments because I googled whether the epilepsy medication (Keppra,) I have been using since diagnosis could cause me to hear voices that aren't really there. It's something that happened once quite severely before I was diagnosed, but this morning (New year's Day) I got up and fed my dog, sat outside while he ate his breakfast and just as I was about to open the door to go back inside I heard what sounded like someone turning on a TV with the volume too loud then quickly turn it off again. I heard a voice say "Oh, squeaky" or "voice clicking" or something like that, clear as day, but nobody was in the house. I'm not sure if it was a sound that was actually there, was it a neighbour talking in their yard next door? Weird, I just don't know if what I heard was actually a real sound or not and I got all worked up and doctor Google'd it and here I am. Anyway, reading the comments here has helped me feel less alone, especially as there are other brain tumour survivors as well. I can relate to most of the symptoms and after effects people here have experienced to some degree or another.
Last night I visited 2 friends for new year's and spent probably 3 hours driving (yes I'm still allowed to do that), I drank 1 beer with each friend I visited, probably didn't get to sleep until 3am but woke up at 6:30. Maybe the voice thing was just because I didn't have much sleep, had a little alcohol (rare thing nowadays) spend time on the road concentrating, was feeling a little off but went out anyway because I wanted to see someone to celebrate New year's Eve, which we couldn't last year due to COVID lockdown.
It's good advice with a brain injury that you have to be kind to yourself, know your limits and get plenty of rest, you just have to accept that to have quality waking life, you have to spend more time asleep, recharging otherwise you'll end up with these kind of meltdowns. People don't understand, that is true.
Sometimes I have to be blunt with people and say "if you look at a scan of my brain, there is a cavity on the right side which you could fit a small lemon into, where the tumour was cut out. I think the Keppra has been causing me a lot of problems over these last few years, especially depression and irritability but less often now. They said I could try a different one "lamotrigine" but The Keppra is probably preventing a lot of seizures so I am too scared to stop and change incase they start happening again or new side effect develop. Potentially, I could be having minor seizures still in the form of any number of little symptoms I get, which is to be expected after such alteration to anyone's brain. I know a lady who had an aneurysm and she reassured me, she gets all kind of little symptoms and you just have to put up with it. They are so minor that I can't even remember what they are to name them when a doctor asks how I'm doing lately, yet when I get these symptoms my anxiety, stress and depression always skyrockets, thinking the worst. It's scary.
Also, I don't hear from former friends much any more, some I've lost completely, but it was ok catching up with them last night.
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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 Permalink
This is spot on! I honestly felt like I was the only one who felt like this.. I was in a Traumatic Vehicular Accident in my childhood and I was diagnosed with TBI. My motor skills, my speech, and my development was impaired from day one. I attended physical therapy afterwards and was rehabilitated somewhat as far as my motor skills, but I still feel clumsy. Throughout my Teens I've always felt different(like I don't belong, like I'm not worth it). My dad was always distant as well as verbally abusive and manipulative(this made me feel much worse). My mom has always been there but she loves me deeply and worries about me greatly, I don't want to disappoint or hurt her with how I truly feel. I'm currently involved in therapy as a young adult struggling with depression, suicidal thoughts, anxiety, social anxiety, a messy breakup, my parent's divorce. I've overcome alot, I'm working, I'm a musician, and I'm an artist. I just want to say I'm grateful for you writing this article and helping me feel like I'm less alone. Thank you!
Anonymous replied on Permalink
For the attorney responding 5/13/15: I was an attorney when I suffered my severe TBI in a car wreck 20 years ago. My career path nose dove, and I retired. I understand your comments (multitasking is no-go), and I too appreciate simple things (mostly outdoors). Don't waste time thinking about the past or persons' perceptions. Just focus on finding and doing what makes you feel accomplished. You CAN do this! (That person who got through 3 lousy years of lawschool 'ain't' gone. Think about focusing him/her on finding a way forward. ie. New facts (TBI) but same law (guts bring glory). Good luck, Counsel!
Anonymous replied on Permalink
OMG...I am so there! Because my BI was caused by medication...there are no external indications...so people don't get that I am not the same. One of my kids is in the military...and came to our home state on leave recently, with his wife and kids. I wanted so badly to see them...but he could not understand that I could not spend time with them at his in-laws..where there would be 20+ people milling around...that I needed it to be in MY element. So...much as it broke my heart not seeing them...I just couldn't do it. So many people tell me to just "suck it up" and do things...and I DO...more and more...but some things I might not ever be able to. I used to like being "different" than others...but now I wish I could just blend in AND hang onto my little bit of sanity at the same time.
Anonymous replied on Permalink
All of these things can be annoying for sure. For me almost anything that starts "You JUST", is the kind of thing that makes me feel like kicking some ones ass. A speech pathologist, at group use the 'JUST', work over and over talking to me one day. That was the last time I went to group. I JUST needed to make a list. I JUST needed to make a schedule. I JUST needed to get organized. I JUST needed to make a plan. Maybe, I JUST needed to to him to shut his mouth. I have marked loss of parenchymal tissue, gross appearance of encephalomalacia, gliosis and glial scarring, bilaterally in my frontal lobes. A 1x11/2 cm hole in my Rt. temperol lobe. Lets see that is my planning/organizational, executive functions, and good old memory. W.T.F
Anonymous replied on Permalink
I get 1 and 2 a lot. "You seem fine to me" "wanna try trading spots?"
Anonymous replied on Permalink
Some stuff so true to me. Thanks for sharing.
Anonymous replied on Permalink
Just yesterday my husband called me lazy. Is been a year since my head injury and today I been crying about it all day alone I feel as no one understands me I hate to depend on people I want to drive again, work and just be the old me this hurts me and sometimes I ask myself why be alive living in these situation with this head problem I should of just died
Anonymous replied on Permalink
A few years ago I could memorize everything I needed for a court trial with no notes. Now I have a one task brain in a multi-task world. It forced me into retirement and a very simple existence. Most days can be so frustrating it's beyond explanation except to shout and curse for a while. I've lived in this different world for 2 years now. The damage is permanent. I enjoy the simple things now. The laughter of my kids, a sunny day, just whatever. Those who don't know this world expect me back to work soon. If they lived a day in my head, they would not ask questions like that.
Anonymous replied on Permalink
Last week my coworkers were asking about something and I could not recall the situation at all. This is pretty typical of me since my head injury. I always need a couple of minutes to focus and try to remember anything, it's really intimidating when people are staring and waiting. While I was trying to remember one of my coworkers made the comment "you're really going to milk this head injury as long as you can," she was joking but it absolutely mortified me. Ever since then I try so hard to avoid situations where I cant remember and I feel like i should never mention my injury again, which is pretty difficult since it is a part of my daily life. Careful with your words.
Anonymous replied on Permalink
Another thing to add would be "have you noticed this is all you talk about" i don't know about anyone else but this has made me super insecure and scared I annoyed people. I basically woke up in rehab and was forced to withdraw from college for the semester and stay at home alone. My family has told me that it's not annoying and it makes sense that it's all I talk about because it's all I have that it going on but it still sticks with you. Of all the things I forget so easily I can't forget that.
Anonymous replied on Permalink
This is me I am Sherry, I know who I am now! I am different, But it is still me. I'm not who we knew, but this is me. Time has pasted, I've stopped fighting to Be as I was.I've stopped trying to find My voice. I've stopped searching for Who I once was! I can not find what I have lost. I can not go back to what I was! My fear has come true I forget the voice I once had! I forget how I was. I had to let go of Trying to be as I was. Trying to remember was holding me back from Being who I am now! So I have become a victim of a man who ran a red light. Forever changing me! I had to surrender and except these changes in me So I could move forward, and just be! I am me., No longer a prisoner inside myself. This is just me! So when you see or hear me, don't remind me of how I am different or sound. Just accept me for how I am now. I am Sherry. This is me! I just sound ,look and act different! But it is me! Couple years after Car accident resulting in TBI. Life Is Tough but what makes it Tougher is Loved ones don't understand me And I am now alone even Distant from My son I Love him and Miss him so Much I wish I could explain myself better !
Anonymous replied on Permalink
Me Who am I? I hear myself speak yet I don't recognize the voice . The words I once spoke are lost inside my head , I have to search and search. I look in the mirror and I see me ,yet I know something is different,but I can't tell you what . I know I'm different! I look deep inside for me, I try so hard but I am lost, I am there I just don't know where. For I am lost inside myself. I cant find words, I don't remember when or even where . I cry and cry, I ask myself,why has this happened to me !.. I was sharp, I was bright. I once had fight I had no fear . I never said, I can't! I just did it.. I was neat! I was organize..I knew where everything was. I was Great with money ! I Knew where every penny was spent..I Loved to have fun,and play ! But now it's gone! I won't stop working for the mind I once had. I won't stop working to be the Me I was! I want my Confidence back! I can't go forward for I'm afraid, I fear I'll forget the me I once was. I must be brave! The me I am I'll never except! I am different now. I want Sherry back!. So forgive me if I repeat myself I'm not being rude if I dont Know where or cant remember when. Forgive me,I might not even Remember you! I barely know who I am, since that Aug. night some guy blew through the Red light ! Im trying hard to find Myself... I won't give up until I break through This fog in my mind and I'm the me that I once knew!A better me will do! Old me or new I will get there. I am lucky to even know I am here! I will get there, hard work and lots of prayer! Sherry !! 2006.
Anonymous replied on Permalink
I had two brain tumors removed years ago., resulting in total deafness. My least favorite thing for a hearing person to say when I don't understand what she said by lipreading is: "It doesn't matter."
Anonymous replied on Permalink
Everything I read in this article is me. My daily life is throwing theses symptoms at me regularly. Although I feel ok I find it tough to deal with. It's just one small piece of a bigger circle.
Anonymous replied on Permalink
Everything I read in this article is my son. He had a brain injury in October and recently turned sixteen. It is very hard and I've now realised I have said some of those things much to my dismay, I'm going upstairs to give him a big hug and apologise to him! I try mainly to be positive but not always easy. Thanks for the info!!
Anonymous replied on Permalink
So true, people just don't understand what we go through, everyday is different and a struggle but you do your best and just tell yourself it's going to get better just take time for the brain to heal. You just got to stay positive and pray everyday that your brain will heal. Life is good even living with a brain injury just got to take it one day at a time.
Anonymous replied on Permalink
I had a snowmobile accident that led to TBI. It also damaged my left eye so my pupil wont dialate. Im dizzy whenever awake....this article helps me see im not alone. People just need to b understanding. My article is www.mlive.com. search miracle january 2010. Probably 1st one about walking miracle
Anonymous replied on Permalink
Most common thing my family and roomates say are "I'm just lazy and stupid"
People don't give a s****. That's the problem.
Anonymous replied on Permalink
To Dave,
I know what you are talking about being alone. It is so hard to be alone. Especially when people that used to love you walk away. That is what happened to me. I can not afford therapy so don`t bother trying.
I am 56 years old and due to my health issues I chose to just not date. I do not want to get hurt nor do I want anyone to take advantage of me. I hope your find something that will make you happy Dave. If you wish to contact me my name is Janice and I am in Canada
Anonymous replied on Permalink
The man I love has a pretty severe TBI from an accident eight years ago. He is great because he ended up being the guy with the perpetually great attitude and wonderful spirit. His memory is bad and he can't remember more than 15 minutes. He remembers better for me. When we first met his memory was a few seconds. His sleeping habit is pretty bad but I think he gets enough sleep overall. The main obstacle we have is outsiders. Too many NOSEY people who don't get it, or don't understand how this works. A lot of my friends don't understand how this makes me happy. You just have to ignore other people and live your life.
Anonymous replied on Permalink
My name is Gissel I'm 15 I was in a car crash in 2014 I can. Barely remember my 8th grade year or my childhood memories or my birth mom (she died in the accident that caused me to loose my memory) I remember her eyes and her blood and I had broken the front windows glass we were hit twice it was a 3 way car crash my cousin was okay he was in the back all that happen to him was he head hiring the side he was fine he got me out of the car and out of the front window I slipped into a coma for a week I didn't remember my dad or my step mother or my uncles and aunts when I first came back "home" only it wasn't "home" its just a place I have trouble remembering things and sometimes I wake up where I don't remember a thing and some times I remember everything but that only last a couple of hours I want to remember so badly but I don't think there is a chance because I have internal issues more often and its been getting easier to remember and now when I wake up and forget its only 2 times every 3 months I am afraid I've been depressed and I still am scared that one day I will never remember what I love and hold dearest to my heart right now I am living proof of a now and loving and living it I love life but I don't want to loose it in an instant can someone just someone tell me if there is an easier way to deal with this instead of therapy and meds I would love to hear it I really wood
Anonymous replied on Permalink
Ive recently begun a relationship with a man who has TBI. He was in a car accident years prior to meeting me. The past months have been fine, but the past week has been extremely difficult as hes been very much different. Slow slurred speech, the only way to describe it is a "drunk" like state. I can barely understand him. I try my hardest to help, and to understand and allow him to be independent. IF anyone has any advise to give please do so.
Anonymous replied on Permalink
I was hit by a truck while on a motorcycle in August of 2013. I was thrown 58 feet. I literally was thrown out of my shoes and socks. My leg came out of its flesh and broke the bumper. My head broke the windshield (no I didn't have a helmet on). I remember everything until the ambulance came. I have since met by chance the doctor who lived on the street and saved my life and the policemen who was the first responder. I met them months after the accident in public by chance. I recognized them. They thought I died. They said it was a blood bath. I had many operations. Shoulder replacement, pins and screws in my hip, thigh, knee, calf and ankle. I dislocated my other shoulder and fractured my back and neck. My scalp was peeled back and sewn back. I have a traumatic brain injury. Why am I writing this ? I guess it feels good after almost 2 years to put the accident in writing. I am not mad. I do not seek pity. I am back living at home with my wife and 2 sons after months of hospitalization, living in a rehab facility and much physical and mental therapy. My life and the life of my wife, kids and family will never be the same. I really don't know how to end this post and put a big bow on it. I guess it could be a lot worse. But I guess it couldn't have been at all. But it happened. I am alive and happy for that !!! For anyone else who is going through a similar event or has a friend or family member going through a similar event. I am there for you. Really I am.
Anonymous replied on Permalink
To the people who replied to my question and request for advice on how to support and reassure my husband following his accident - thank you so much. I have read both replies over and over and will take and use your advise. Thank you for taking the time to help Many thanks
Anonymous replied on Permalink
It's been over 10 yrs since my car accident caused a head injury. I see a therapist since my accident. I have short term memory loss, brain damage . It hurts so much when family gets frustrated with me . It is so hard to try to make people to understand..I've been told by family to stop bugging them because they feel like they have another kid, can't you think for yourself? Many other hurtful things have been daid to me. But do they not realize how hard it is? To try and tell them any conversation you cannot and do no longer able to say the correct thing you want to tell them and some other sentence comes out .I remember how confident I use to be . And that it bugs me so bad to. I'm forever talking to myself telling my self that I mess up again .I wish people could understand .I myself don't understand and I hate it.
Anonymous replied on Permalink
To the lady about her husband (January 17th 2015; 4:31 pm)...I sustained an ABI about 5 yrs ago along with both my children. We have gone through quite a journey just as you and your family are. We were told that my son would never pass a 6th grade level and he has blown all the doctors away with his continued development that should NOT be possible..currently he is 15 and is totally in love with QUANTUM PHYSICS of all things! Total miracles...but certainly not without MANY challenges.
I applaud you for your incredible faithfulness to your family! Stay the course...many of these things will subside with time but of course you cannot ignore them while they are present. I have found that most ABI/TBI issues the patient suffers through have an element of truth in them and the injury is blowing it out of proportion. I don't mean that you would actually leave husband, I mean that he has a genuine belief that's at the core of his issue, but it could be incredibly small in reality or more likely, that the belief is NOT ABOUT YOU, but more about him...he can't understand how you could possibly want to stay with him. Many people think that they're value to their family has to do with their ACTIONS...the things they provide for the family. Therefore, when injured like your husband is he may not be able to understand how you could possible have ANY true feelings for him other than pity (and men especially despise pity). By your comments it seems obvious that his true value to you has NEVER been what he can do for the family (those are just needed perks) but rather just simply HIM! We don't usually talk about it this way, but for many the highest value their significant other holds for them is "to be KNOWN" by that person. Actions can be replaced in other ways...things he used to do, but for you NO ONE can replace being known by him. If you agree that this is how you feel (or something similar) then getting him to understand that his value has ALWAYS been this to you, then it might help him with those feelings. I have struggled through these feelings myself and have felt like an empty shell of a person without real value. But realizing what I just mentioned was huge; understanding that my presence holds emotional, mental, spiritual ties in place for my family and that there is no greater value than that!
All that being said, if he isn't already, at some point he will probably deal with the very idea of being known himself, because for him this has all changed now. Having walked through this so far, I believe that our core personalities may not necessarily change, but the bridges we have used to express ourselves have been destroyed. It takes a newborn many years to develop ways to communicate but we expect that...after something like ABI it takes years to find alternate ways to communicate ourselves again, but we don't realize that so added to that journey tends to be fear, anxiety, anger, depression because we don't understand what's going on and if we will get where we need to be to ever feel normal again. But it's just a new normal...he gets to explore and find new ways to express himself. It's hard, but it's worth it! The brain is incredible...its greatest strength can also its greatest weakness...belief! Right now it sounds like you have an incredible amount of belief...keep pouring it on him!!!
Anonymous replied on Permalink
Thank you for this article cause my biggest problem is doing everything for my daughter who has a TBI
Anonymous replied on Permalink
i had a brain tumor when i was 5 years old
balance, concentration and memory used to be the only problems i had... untill the last year or two
speach, and words coming out, i have myoclonic minifits caused by tremours, and my hearing is damaged from the radio therapy...
i'm trying to not give up on things and am getting help from my mum with filling a housing form out...
to all the survivers out there i wanna say a big GO YOU!! :)
Anonymous replied on Permalink
I think this article should be spoon fed to the general population. I have a best friend who is learning to walk and talk again. And he has made leaps and bounds. I just find myself wanting to remind him how athletic and awesome he is. And I've noticed he gets a little thrill when I remind him of how he does things. Like washing his hands and using his hair to dry them on. Or the way he cooks and the way he hides things. He's so strong and his family is great. I don't want him to get in the dumps. I want to keep him pumped up. This article really confirmed what I was thinking. And the person who commented about people needing more empathy couldn't be more correct. Thanks for this article. I'm going to spread it around.
Anonymous replied on Permalink
Ive had 2 brain tumours removed, 1st at three & 2nd at eleven, l cant even get out of bed some days, l now walk with a crutch
Anonymous replied on Permalink
Omg. People tell me all of these all the time. I just wish people could understand. If things don't make sense to them, that's because they don't to me either half the time. Seriously, this world needs more empathy.
Anonymous replied on Permalink
I know a few people who need to read this and realise how I am affected by my condition.
Anonymous replied on Permalink
You know what you're doing don't blame everything on your brain injury when they don't know how it takes affect on your mood, speech, movements and character.
Anonymous replied on Permalink
Having suffered an ABI early last year I can really relate to some of these things - particularly everyone saying "you seem fine" when you feel like you are struggling!
In response to the lady who wrote a comment on 17th, 2015 at 4:31pm about her husband who is recovering from an ABI, I'm not an expert but I wanted to reply with my thoughts and hopefully help in some little way. Both you and your husband sound like incredible people. Him for battling against all odds to make such an amazing and quick recovery. And you for being there supporting him throughout. My advice (as I say I am no expert so take what advice you want and ignore the rest!! And all I know of your husband's ABI is what you have said in your comment so I may get things totally wrong)...my advice to you would be to read as much as you can about brain injury. You are probably doing this anyway as you have found this website but get to the library and find books on brain injury and look at the Headway website which has some good leaflets to download. This will help in your understanding of what your husband might be going through. Everyone experiences a brain injury differently but maybe he doesn't yet have full insight? He is possibly still realising/coming to terms with his situation? And low self esteem, anxiety, depression and suicidal thoughts are all common effects of an ABI. It's still very early days for him and he probably has a long recovery journey ahead of him. Try not to be too upset by his words and not take too much of it on yourself. He's in a safe place right now and hopefully as time goes by he will start to gain a better understanding and insight and see that you really are there for him. Keep telling him how strong and determined he is and celebrate all his achievements no matter how small and hopefully he will begin to take it on and feel a greater sense of self worth.
Would he be able to access a counsellor? Maybe through the hospital or Headway? Then he can talk about his worries to a professional who can help him explore his thoughts. And any information about the ABI that he could take in could be useful too...like those Headway leaflets...before I saw those I didn't understand what on earth was happening to me and why I felt certain things. It was like a light switch was turned on when I read them,
And maybe you could look at some counselling for you to help off load your worries and all the emotions you have had to deal with? I imagine Carers UK have a helpline...maybe you could start there?? And can a friend watch the kids now and then so you can have some "me" time? A nice bath or just an early night? Look after yourself and you will be able to look after your husband best.
And what do you do when you go to see him? Could you do some simple crafts together? Listen to some nice music? Read stories/the news? Skype a friend? Can he mobilise/be taken on a wheelchair outside for a wander around the hospital grounds? Maybe doing something nice together would take his mind off things and you could enjoy having a laugh together.
Just ideas...but I hope they might help. I still have a long way to go on my recovery but for all the things I have lost I have gained an even stronger relationship with my partner and a real appreciation for life and the beautiful things and people in life. Good luck on your and your husband's journey. The world is on your side xxx
Anonymous replied on Permalink
This is so true. I suffer from a acquired brain injury as a result of an accident and it's so hard to explain the feelings I have.. Arguing with someone is especially hard to deal with as u don't know If what they are saying is the truth or if they are using the memory loss against u and making up things.. I find it hard to trust anyone as I can't even trust myself.. This will help paint a less confusing picture when I'm trying to explain things!
Anonymous replied on Permalink
I was run over by a car at the age of 11, the car was doing 60 - 80 km/h and as a result of the accident i got a sever brain injury and the most annoying thing about people that don't understand the feeling of having a brain injury is that they think your incapable of doing things for yourself because you have a injury. And when you get called a retard and mocked because you stutter words constantly but you can't help it because its now a part of you. Or when you have a shorter temper than most people and snap or when you have problems that are affecting your family so much that they can't take being around you and separate because you are too much of a burden to them.........
Having a brain injury is the worst thing in the world, it ruins your life.
Anonymous replied on Permalink
Thankyou for sharing your comments, if any one could help me, I'd be so grateful... My husband had a very serious car accident in August 2014 and is still in hospital. He was scored a 5 on the GCS scale upon admission, and shortly afterwards a 3- we were told there was no hope and we were as a family devastated and prepared to say goodbye to my best friend and partner of 19 years. I told the doctors if he remained in VS I'd still love and support my husband, and I 100% meant that. However just 5 months later, he has been an inspiration and fought so hard to overcome everything he was up against. He is fully awake from coma state, he had his traceostomy removed (something we were told would never happen) in October, he's eating and speaking and beginning to overcome his physical difficulties with strong rehab care and his determination. What I worry about and would like some advice regarding this is, his emotional state,he's convinced il leave him for someone else "able bodied" his words not mine. I always reassure him that I won't leave him and I love the new man he is as much ,if not more than before, to see such strength to overcome such obstacles and prove experts wrong has blown me away, and made me so proud to be his wife and to embrace our second chance after coming so close to death, but he won't believe me. It has become almost an obsessive thought (discussing for around 6-7 hours a day- I'm at the hospital for around 8 hours a day) and is followed by suicidal threats should this happen and I'm terrified I won't be able to convince him I mean every word. I've received advice from neurophychiatrists how I should handle this (distract or reassure) but how, as someone effected by Severe TBI would you handle this please? I desperately love him, we have three young children who have adapted brilliantly and treat daddy just like daddy. We just want him to realise he is so special and we feel nothing but admiration and love for him.
Anonymous replied on Permalink
Mental retarded because they stutter their words out and keep repeating the same words until they can get it out
Anonymous replied on Permalink
God Bless you all who have posted on here. No one can understand your struggles day to day except you. May you find peace in rebuilding your lives and support where/when you need it. This country absolutely fails people with lack of support systems.
Anonymous replied on Permalink
August 19,2009 I was rear-ended by a woman texting and driving at highway speeds and I was at a dead stop. The impact sent the rear drivers side tire into mt back and caused the shock to explode sending parts into my head. By the time the reached me my heart had stopped and I was not breathing. I was fortunate to be resuscitated but I lost 7 weeks of memory and those memory issues occur absolutely every day. I am constantly retracing my steps or re-reading the same paragraph over and over until it sinks in. I used to be an avid reader and I think I miss that part the most. Some days I feel like throwing in the towel but I refuse to let this ruin me!
Anonymous replied on Permalink
Hello I had been diagnosed and cured in 2007 of a brain tumor, the biopsy had said it was in my head since 2003. I was cured in 4 and a half cycles of Chemo-Therapy and I had done so, through my positive attitude, while going through Chemo-Therapy I would hear nurses fighting to get me as the patient they would tend to on their rounds. After Chemo, I was home schooled when I got back, and too many people said to me "You're lucky to be alive" and I realized as a survivor, how belittling that sounded and felt to me. Because I wasn't lucky I have a WILL within me to live and a STRIVE for LIFE! God Bless ANYONE who must go through these horrid conditions of Chemo/Radiation Therapy.
Anonymous replied on Permalink
Hi my name is dave. I sas assaulted seven years ago. And it has completely wrecked my life. I have spent so much time in mental health care due to taking overdoses and alcohol abuse. My family say I am lazy and useless and have never given me any support. I now live alone and very often wonder if it is worth going on. I fall in love with every woman who is understanding and kind to me. But I am 52 and most of the time they are to young for me and I have to keep away as they dont realise what I am feeling.and I get very depressed. These women are all in health care as I dont have any freinds does anyone else suffer from the same problems thankyou dave...
Anonymous replied on Permalink
Yes, I have anoxic brain injury myself from a accident and I'm having trouble finding support groups.
Anonymous replied on Permalink
Background: I was a timber feller for a logging company and in 1999 i was hit by a widow maker. I wasn't even actually working at that exact moment; just happened to be standing under a tree which a brisk wind shook a dead limb out of which struck my hard hat. Out of these 9 things i get told all but number 7 & 8 frequently. Mostly from my wife. The one that really pisses me off the most is the "you're lazy" comments! I'm not lazy and I'm actually a hard worker. It's just hard to stay focused and keep interest in what I'm doing. If I were lazy I wouldn't have returned back to the same job, which by the way is the hardest job I ever had in my life, just 2 month after spending 2 weeks in the hospital, and do it for another 2 years until I screwed my back up and could no longer do it. I am even guilty of one of the things. I tell myself often that I am lucky to be alive, but then I immediately go to the other end of the spectrum and start thinking "no, maybe you would've been better off if it would've killed you then your loved ones wouldn't have to go through the after effects". And that is weird because the after thought always comes in that way...not i maybe would've been better off, rather "you would've", and "then your loved ones", so that tells me that something off because of the way my brain goes from as if I'm saying it to myself to immediately as if I'm saying it to someone else.
Anonymous replied on Permalink
I have severe TBI from a horrific car accident now I am being told I was a Aweful Mother and the sad part is I have no memory of it at all I have 3 grand babies that I can't be around because of it
Anonymous replied on Permalink
I live with post tbi now due to a horse accident, the horse fell over on top of me and slammed me head first to the ground. Life isn't as easy as many may think on outside looking because they do not know what we who live with this do feel, and for myself most days can feel like being stuck in your own body watching the world knowing what you want to say or do and know how it needs to be said or done but still can't get it right that is a life of hell some days. This is a great article for many to read and I myself have educated myself so I know what I, dealing with and try to show others so they know and can handle dealing with me but sometimes not even that helps because people choose not to deal with the changes that come with post tbi so I do deal with many people in my world who do not care to adapt to life after so I now raise three kids on my own for most part and as if I never had this happen and that isn't easy but for these babies I keep going and keep trying to live life as normal as possible
Anonymous replied on Permalink
This is truely an invisible disabiity....the victums struggle everyday with usually no signs of what they are struggling with.
Anonymous replied on Permalink
Unless you have a traumatic brain injury you'll never understand what it's like to lose everything that you into and you are never the same again, you are FOREVER CHANGE...but I'm glad it happened to me instead of my two sisters. But most of the time they don't understand!!
Anonymous replied on Permalink
I had been diagnosed and cured in 2007 of a Brain Tumor. With that all of these side effects which were spoken of, above, have surely befallen me. I applaud whoever wrote this article and how accurate it truly is to how WE the survivors of Traumatic Brain Injuries (TBI's) feel. Especially with how in the final piece that you discuss. How we all HATE when anyone says to us, "You're lucky to be ALIVE!" because we aren't "lucky" at all, we were STRONG individuals who loved life too much to just want to give up, as many can if they feel too weak. Not only that but it makes us feel Shame when people compare our victory in the war against cancer to just simple luck.
Teejae replied on Permalink
It is 7 years on since this comment was posted, but I wanted to reply to the person anyway.
I hope you are still doing well.
I was diagnosed, had surgery and treatment for a malignant brain tumour too, 4.5 years ago now, my next checkup MRI is this week, 1 day before my birthday.
I found this website and have been reading all the comments because I googled whether the epilepsy medication (Keppra,) I have been using since diagnosis could cause me to hear voices that aren't really there. It's something that happened once quite severely before I was diagnosed, but this morning (New year's Day) I got up and fed my dog, sat outside while he ate his breakfast and just as I was about to open the door to go back inside I heard what sounded like someone turning on a TV with the volume too loud then quickly turn it off again. I heard a voice say "Oh, squeaky" or "voice clicking" or something like that, clear as day, but nobody was in the house. I'm not sure if it was a sound that was actually there, was it a neighbour talking in their yard next door? Weird, I just don't know if what I heard was actually a real sound or not and I got all worked up and doctor Google'd it and here I am. Anyway, reading the comments here has helped me feel less alone, especially as there are other brain tumour survivors as well. I can relate to most of the symptoms and after effects people here have experienced to some degree or another.
Last night I visited 2 friends for new year's and spent probably 3 hours driving (yes I'm still allowed to do that), I drank 1 beer with each friend I visited, probably didn't get to sleep until 3am but woke up at 6:30. Maybe the voice thing was just because I didn't have much sleep, had a little alcohol (rare thing nowadays) spend time on the road concentrating, was feeling a little off but went out anyway because I wanted to see someone to celebrate New year's Eve, which we couldn't last year due to COVID lockdown.
It's good advice with a brain injury that you have to be kind to yourself, know your limits and get plenty of rest, you just have to accept that to have quality waking life, you have to spend more time asleep, recharging otherwise you'll end up with these kind of meltdowns. People don't understand, that is true.
Sometimes I have to be blunt with people and say "if you look at a scan of my brain, there is a cavity on the right side which you could fit a small lemon into, where the tumour was cut out. I think the Keppra has been causing me a lot of problems over these last few years, especially depression and irritability but less often now. They said I could try a different one "lamotrigine" but The Keppra is probably preventing a lot of seizures so I am too scared to stop and change incase they start happening again or new side effect develop. Potentially, I could be having minor seizures still in the form of any number of little symptoms I get, which is to be expected after such alteration to anyone's brain. I know a lady who had an aneurysm and she reassured me, she gets all kind of little symptoms and you just have to put up with it. They are so minor that I can't even remember what they are to name them when a doctor asks how I'm doing lately, yet when I get these symptoms my anxiety, stress and depression always skyrockets, thinking the worst. It's scary.
Also, I don't hear from former friends much any more, some I've lost completely, but it was ok catching up with them last night.
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