Lost & Found: What Brain Injury Survivors Want You to Know

hi all, read a lot here which pretty sums up my experience, i got assaulted fell back and hit the road and fractured my skull with blood and bruising at the front of the brain, first year was horrible with fatigue and trying to build strength, always told the first year you show the most improvement, to look at me now you would think i was exactly the same as before, but i have about 4 good days and 3 bads in a week depending what i do, it happened when i was 25 so im coming up to the 2 year mark, i was sport mad before it happened and obviously went out drinking a lot, i have had to turn my whole lifestyle around since the assault and haven't had a drop of alcohol as i want to give myself the best chance of a good recovery even thou its hard been young, ive tried to return to football obviously i don't head the ball anymore taken it slowly i just been doing small cameo roles at 6 a side and try to build up slowly but get immense head pain after, i was wondering if anybody had some good insight into similar experiences in returing into sport and the use of alcohol after? i`ve tried doing strength work but go light headed after and normally have a come down period of 2 days of feeling shite after, so as much as i try to motivate myself i no the after affects will ruining the next 2 days which puts me off

I found this in depth insight into how a person with a brain injury feels really informative and helpful. My daughter suffered multiple strokes aged 7.I know that even now 3 years on she still struggles with learning and emotions.

5 years later and I still have some of the same symptoms. I am learning how to look after me because others don't know or understand the day to day things it takes for me to have less stress, fatigue, and/or confusion. The thing I miss the most I think is the ability to sense when someone is near me yet not in my visual space. So I easily don't know if someone is waiting for me to move out of the way, has come up behind me to scare me or has entered the room I'm in. My driving seems impacted by my inability to sense as well. And I am not comfortable in many places and am bothered by light changes and darkness. Thanks for this article. As others have said I will print to remind myself that others are going through the same things that I am. Things may get better but I am glad to be alive after a person almost took the lives of me and my family while trying to end his own life.

I'm one of brain injury cases. I've a lot to share. I still see 20 days missing from my life. And sometimes i can see it all when Im angry or very happy. :)

Almost 3 years ago, a 12ft metal pole slid down and smashed into the side of my skull. The fracture was several inches long and even though the skin didn't break, it stretched as far as it could with the bone and swollen brain pushing it up. At the time there was also a depression fracture the size of a half dollar coin. Because there was very little blood and I didn't lose consciousness for very long, I was told that I was fine and to walk it off by my family. They weren't worried, so I didn't worry, but that didn't stop me from noticing all the things I was suddenly having trouble with. I needed more sleep, I couldn't stand the light, I cried over nothing, I was forgetting things. Words, memories, events, schedules. All gone. I'd get stuck trying to find a simple word like "dryer" while doing the laundry.

3 years later, and my head still hurts. I still have periods of confusion, but I do hide them better. But 3 years later, and everything on this list is still so relevant. If I'm feeling overwhelmed, I withdraw, and even though I try to push myself to the point and past the point of being overwhelmed, I know that may not be the best medicine. But I still have so much trouble conveying that I am trying. I'm not lazy, nor have I become stupid. I'm glad to see I'm not alone in this.

It's been 8+ years since my TBI.  All of these things still apply.  Just the other day I was reading (which wasn't possible at the beginning!) but what I was reading required a lot of thought and I was sick for the next two days.  It sounds ridiculous to say it out loud but thinking makes my brain hurt.  Thank you for re-posting this article.  SO true!

Barb J

This is one of the best articles I have read that totally explains what I have been going through. I was in a head on collision in 2012 and suffered with headaches and this feeling of just being "off". It was very difficult to explain or understand. I started getting some treatment a year after the accident from a chiropractor who specialized in headache control/relief. After months of treatment the symptoms started to get somewhat better. Then in 2014 I slipped on the ice and hit my head again pretty severely. This started all of those symptoms up again about 3 times worse than they had been. Now having had 2 concussions within a short amount of time and being a busy person thinking I didn't need to take time to recover, I tried to keep going on. Around the middle of last year my head decided it had done enough and just quit allowing me to function right. First my eyesight went from seeing ok one day to not being able to focus in on things, then the headaches got so bad they never stopped.  Then it go difficult to drive. I finally saw a neurologist and was diagnosed with post concussion syndrome. Unfortunately there is no quick fix and I am doing Botox for headaches, vestibular therapy and vision therapy. I am having some better days but like others have said, there are still lots of bad days too. I have become an expert on understanding most of my triggers though and that has helped me to avoid certain situations that may be difficult for me.  

I am a survivor, at age 3 I fell from a balcony to the concrete steps below. i was rushed to the hospital. i was in a coma for 3 months and on valentines day 1978 i was given a plaster replacement for the shattered right side of my skull. i am now 41 have a wife and daughter and with some coordination defects on my left side. i have regained all my physical movement although struggle with spelling, and comprehension related issues. my hope is i can find a way to GIVE HOPE to those that have or are experiencing similar struggles 

Great list and all symptoms I have suffered from one degree to another. I had to learn to drive again because my attention span was so short I would forget I was driving if I looked away from the road for a second.

All this was caused by a surgically induced TBI from an ENT that was performing a ‘routine’ sinus surgery. He punched two dime size holes into my brain and pushed sinus bacteria into my brain then tried to cover it up. The resultant brain infection pretty much scrambled my short term memory and the follow on brain surgery removed ½” of necrotic left frontal lobe.

This has led to all sorts or memory issues as well as typing dyslexic. Everything comes out backwards. For years I was ridiculed by my wife and kids for my poor memory. I would repeatedly tell them if I don’t acknowledge you and confirm what you’ve told me then it hasn’t registered.

After ten years I feel pretty much normal but still have issues of recall when trying to think of things. Just glad I’m alive and functioning pretty well. 

I had a TBI in June, 2012. I fell 13 feet onto a concrete floor. I have not been the same since. I sometimes feel like I am a person watching an animated body in autopilot. No one anywhere is sympathetic to my problems. Which is weird--I don't want sympathy, I want functional understanding so the New Me can function within the previously existing system I lived in. But that seems impossible. No one around me is willing to flex at all, or to encourage what I am doing well, and they make wild accusations about the discontinuity previous to my injury. I am not doing anything wrong, but still I am abused by those around me who in their ignorance do not understand what comes of a TBI. It is very despair-inducing. I am not improving at all, which is also despair-inducing. I wish that American society would pull its collective head out of the sand and stop insisting that every living creature be a perfect healthy happy clone. I am not happy, perfect, or healthy and as much as I would like to be, it's not in the available options. The very last thing I need is judgment for memory lapse, emotional breakdown and social fear. I am sure many can relate. Love is what we need.

I had a brain tumor removed from my brain stem 54 years ago. I woke up a human vegetable I was blind and could not do anything but hear. It took me over two years to mostly recover but have dealt with aphasia and balance problems ever since. I have had a wonderful life, married had two children and a great life. My children grew up supplying words when I couldn't find the right ones. Now my grandchildren say that they can speak grandma too. Mostly when I am tired.

My brother in law is brain injured. Love him to bits. Another thing that occurs to me though, on reading this, is how much it reminds me of dyslexia. In many ways processing is time consuming and affects my ability to cope in similar situations. Of course, not to this extent. But I thought the similarities might have a basis from a biological science point of view. I'm dyslexic and suffering from stress also because the people I worked with did all the things the article says not to do. But they knew what they were doing. I'm currently suing. My dyslexia mainly revolves around short term memory problems. I also can train my brain but also forget basics not done regularly. I have to think through very basic things with great care sometimes. I related to a lot of the points in the article about processing, tiredness, repetition and emotional ability. Brain injury is misunderstood. I've seen my brother in laws condition misrepresented at mental illness in an court case with appalling consequences. And it's so obvious! Dyslexia is also hard to understand and I've suffered as a result. People can't accept what they can't see. Anyway, I just wanted to say thanks for the article. Very helpful. Julie Prince Ilkeston Derbyshire

Every thing listed I deal with every day and night. I was in a motorcycle accident and got hurt very bad. emts said I was dead, Drs said no way I could live. I live with ptsd and a brain injury but I'm alive.

My husband suffered a TBI in June 2012 from car accident. The doctors told me he would die that fateful night. It has been hard to witness a man who would love gardening to clicking the remote over and over. He is so different and I wish there was more support for the caregivers. The TBI person gets the support and love..but as a caregiver for my husband and epileptic brother....really wish more support. Bachc1958@gmail.com.

My little girl suffered two TBIs four years ago at age thirteen during brain surgery. One of them was a stroke which initially left her paralyzed on her left side. She is severely autistic and non-verbal as well. She has recovered a lot of movement on her left side, though she walks like Quasimoto, and seems to have frequent headaches. She has poorly controlled seizures, serial episodic vomiting and often stays in bed till early afternoon. She is missing part of her skull which they were unable to replace because of complications, so she wears a helmet to protect her head. Reading these stories gives me more insight into how to help her have better days. Thank you. Is anyone else out there walking around without part of their skull?

Thank you for sharing. I struggle with contraction and focus with too many noisy things going on around me too.

Almost three years ago I fell onto a hard tile floor due to an absence seizure and severely injured my brain. Taken to hospital by ambulance and was in an induced coma... five weeks in the hospital. Finally the problem was diagnosed and the correct medication prescribed. I quickly came to myself (sort of) and was discharged. Off driving for a year. I cannot remember many things from that period, so my family filled me in. I still have memory lapses and I think I am still on the slow road to my normal self. Many thought i was not going to come back when I was in hospital. God is powerful in this. I continue on my road to recovery. This article showed me what I am going through is what I can expect. My prayers continue.

I want to add recovery never ends no matter how many years pass. In my case I have very little pre severe closed right frontal lobe tbi memories at all due to my head injury occurring at 9-10 months of age about 25-26 years ago ( in the age range with the highest fatality rate ). The fact I have memories from before at all is due to hyper development of my brain prior to the injury resulting in a cognitive age of 12-13 when the injury occurred. The only reason I survived is theorized to be other abnormalities in my brain that minimized damage, and excluding minor behavioral issues and difficulties with soft social skills and short term memory I have recovered very well. I had years of therapy though and for two years of that I could not articulate properly and was " trapped" in my mind and suffered from suicidal depression by age four. All these years later articulating my thoughts into words can still be an issue and I still fumble words on occasion. All the tips on this list represent what people should know at minimum.. Sadly they don't and getting them to understand can be a pointless endeavor. My injury has been with me my whole life more or less, at 26-27 the thing I notice most is people ( especially family) still treat me like a child, or a freak because I am different and can never be normal because I never knew how to be that way in the first place. Even my friends notice my oddities many I can't control and try to " help" me unaware that I have spent my whole life coping with these issues despite my explanations. If I could have one more thing added to the list it would be : Don't presume I am stupid due to my head injury, don't think I lack comprehension of what it has caused and changed in me, and never tell me my tbi is an excuse or not the cause of my behaviors when I know it is and exactly what it triggers. And never point out how abnormal I am because I am fully aware of this, and it kills me inside some days to know that I never had a chance to be normal, just imagine what that is like.

so good that this is reaching so many people 

My 37 yo daughter had a prenatal stroke which resulted in her having cerbral palsy and which has impacted her mentally as well as physically.  So many of these points seem to be true for her also.  The article gave me a lot to ponder.  Maybe if we were aware of these issues with her, her dad and I would be more patient and understanding of her needs.

OMG--Reading this article was amazing...I kept saying to every line....Holy Crap, that is me. I was involved in a Commercial Vehicle Accident on 11/13/2013..ejected from the vehicle, flew airborne into a concrete bridge post, was knocked unconscious and required (37) staples to put my head back together. I will, like commented above, print and hand out this article to every person who is a part of my life. Thank You.

last week my boyfriend fell and he hit his head so hard and was knocked unconscious and was revived at the hospital and was told he was going to have short term memory loss . And now doesn't remember anyone but his young sister...,it breaks my heart....,not knowing if he'll ever remember again.

Please hold hope and pray. Our son was never expected to survive and he is our miracle as we are approaching 3 years post accident. Life is never the same but it can be enriched. It takes time, patience and faith.

So true! I have a tbi from 05. Was in a coma from us two . I had to relearn everything. every bullet point matches my the symptoms

Omg you literally just summed up my whole life!! I'm a brain tumor survivor, 6 left temporal lobe surgeries '91-'07 I struggle every single day with short term memory since the day I was diagnosed with epilepsy in '88. I'm seizure free since 10/'06, but life will never be easy for me!! I'm 33 yrs old, and still trying to find a career and independent life for myself, sometimes life just sucks..