"You Look Fine!" - The Real-Life Struggle of an Invisible Injury - TBI Awareness
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- Опубліковано 20 вер 2024
- The real-life experience of a brain injured person explained in simple terms. They may "Look Fine", but don't feel, act, or think "fine". Join our online brain injury support community: hopeafterheadin... | More: cristabellebrad...
When people say 'you look fine' I imagine myself having a neuro fatigue and ptsd episode and handcuffing them to me to enjoy the ride.
Holy shit SO well said!!!
I'm 6'3 210lbs man and Im in tears right now thank you for informing others how it feels. I was dropped on my head as a baby and have had idk how many concussions lost count. Its really been hard my entire life to even socialize with others, hold a job or relationship, not get emotional its like a roller coaster constantly, always tired, can't focus, anxious, stressed, and body is effected by the brain High BP, autoimmune, food intolerance, body swells. Idk if people realize how important and fragile our brains are. Again I really appreciate this video!
Best wishes, friend. Turn to Jesus. He understands, if no one else does.
Hope u recover soon
Wait wait wait you mentioned body swells!!!!!!!
I am crying because you hit the nail on the head and put it perfectly and made me feel like someone honestly understands. THANK YOU!!!!
Same. But since I'm sitting next to my mother currently I'm crying on the inside and trying my hardest to not cry on the outside. This video really hit the nail on the head. I got goosebumps listening to her talk in the video.
It hurts so bad
This lady really hit the nail on the head. UNTIL you have suffered from a brain injury, it is nigh on impossible to convey to another person what it is like to try to get through the day. It is hell. Things which you previously took for granted can become enormously difficult. It's like a dial has been turned down on your former capacities, which are now operating FAR below their old level. Everything seems slower. To use a poor analogy, it's as if your brain is weighed down at all times by it's own lead suit, with the fogginess of a murky day hanging over every single thought process. It can be really hard to maintain attention, especially if there are multiple forms of sensory stimuli surrounding you. Public spaces with lots of people can become overwhelming to the point of being frightening, due both to the amounts of movement in your visual field, and auditory overload. You can sometimes find yourself "tuning out" and just staring into space, not knowing where you are, or what you are doing. There is a battle to remember words, and sometimes their specific meaning doesn't actually make sense to you anymore. Simple mathematical tasks can pose major problems. Short term memory can be very spotty. It can feel like the 'me' that I always knew is slowly fading into memory, and that what is left behind is just a shell of what used to exist. All of which can lead to despair and hopelessness, knowing WHAT you've lost. The battle of my life.
"You look fine". A standing ovation for you
Yessssssssssssss
Soooooooo true! People expect you to be drooling, cross-eyed, and wearing a diaper.
Asking for prayers for my Brother Jesse who has been in the ICU for three weeks after suffering a severe TBI after falling down a basement staircase at my parents house. He had immediate brain surgery that saved his life after removing a very large blood clot on the left side of his brain. He also had a smaller bleed on the right side. He suffered several other broken bones and is in really bad shape. We were told to consider quality of life for him after only six days, the doctors said he would be on a ventilator for the rest of his life and would never speak or be aware of his surroundings. Well they were wrong because after about 2,000 or more people praying for him on the night of the 6th day, he opened his right eye when my mom asked him for a sign to either keep fighting for him or let him go to be with God. He is now off the ventilator and has a trache, two days with his trach and he was breathing on his own 100% off forced oxygen! He now shakes his head yes and no in response to questions and a few days ago he sat up twice on his own in his bed!! Today he isn't doing so well. He has pneumonia and a UTI and isn't feeling well at all. We still have such a long road with Jesse and he needs all the prayers he can get right now. Anyone who is a believer please pray for my Big Brother during his recovery. Thank you so much! 💖❤💜💙💚💛
Katie Sago - Prayers to your brother, strength to you, and awareness to others 💛🕆
Katie Sago I hope your brother is doing ok
2018A.D.
Hoping for the best for your brother, you and your family💖
Hi Katie sago how is your brother now please reply me
I came across this video about 6 months after being discharged from hospital following an accident and TBI. This is the first explanation of a TBI that resonates with me and i can say "this is me". I have since shared this video with several work colleagues to better explain my symptoms and experience.
Thank you for this video. It has helped me personally and means a lot!!
15 years since my traumatic brain injury and I am just now coming to terms with everything... for so long, you think your fine, everybody keeps calling you crazy, and you scream, I'm not crazy! there's nothing wrong with me! And you don't even know there's something wrong with you, and when you start to realize there is something wrong with you... you forget again. I feel so alone.... I know I have christ! He loves me always... but sometimes I get so scared.
❤❤ God bless you
I have had a brain injury when I was 5 years old. On my families way out ice fishing a drunk driver hit us. Like I said before I got the worst of the injuries. Doctor's said I would never be able to walk or talk again, but soon after I learned how to do both all over again. Life has been full of ups and downs this video really help thank you.
This video made me cry at 230 am. No one understands how much effort you put into just existing and dealing with the general and everyday life. I was rear ended at a standstill and I smacked my face against the steering wheel. After that day, i felt i changed. I was sensitive to everything! Meds, noise, light, emotions... just everything. Its hard for me to have motivation and to concentrate on doing simple tasks like doing the laundry. Some days i would just stare and cringe because i would have deal with figure out a chore. No one understands until they have it. Thank you for making this video.
it really is a hard injury to explain to ones who havent gone through it i thought i was crazy or something until i finally talked to someone who also had a brain injury and felt the exact same thing i was going through...thank you for this video also its helped alot and is the darn truth...
If one more person tells me that they forget names too and we have the same memory problems, I'm going to lose my mind even more than I already have!
Spot on!
Every day is different. Actually every part of every day is different.
It's been 3 years for me..and I STILL forget to be cautious making commitments. BC I may be coping well "right now" , but I may be overcome with any of the various symptoms anytime!
Fatigue.
Or vertigo>nausea>headache.
So foggy I can't think.
Or it's way too bright.
Too loud. Too much motion. Everything is too fast!. Talk slowly.
Or I blurt out something. Or
Or
Or
Or
My circle has shrunk to almost just me.
Family? Friends?
Ghosted since TBI..
It is so nice to see people understand the difficulty we go though. People say all the time how I look fine. It is so frustrating. I feel trapped in and isolated. I find myself trying to believe it all in my head. Only to find myself way over my head in situation that I struggle with. When I tell people I get tired easy. They think it's like when they are tired, I must be lazy. My stroke was 7 yrs ago I have mild Aphasia. Thanks for getting message out.
The crash after overstimulation from a simple lunch out last days - sometimes weeks - that is it exactly. And when I am in the grocery store, even with my list, I don't mean to be rude, but please do not approach me and talk to me. I will completely forget why I am there.
+Antoinette Arsic I don't have a brain injury but I experience the same type of thing due to other issues. I forget what I'm doing when moving from one room to the next. And I forget what I'm talking about midsentence. I forget simple words and get frustrated.
Kirsten Lenz I tell my dad this all the time, I often find myself lurking in doorways trying to prevent this from happening. I'll be focusing hard and try and concentrate and if anyone asks what I'm doing I forget everything. My co- workers can be a blessing and a curse if they catch me doing this funny act, as sometimes they remind me, and sometimes they tease me.
You took the words right out of my mouth!!!
Yea me too! If I actually do go to a store. I have to keep my head down and strictly focus on what I'm doing. I always miss stuff from my list. To overwhelmed. Then it's a few days of recovery
ty very much for this wonderful explanation! As a brain injury survivor (so i was told) I am sick and tired of explaining myself to others!
So relatable 💜✨ 🙏🌼 .
I need someone to connect with.
No one there to understand my problems
Looking forward to see your reply 💜
@@lav856 hi sure emial would be cool! stacychang47@yahoo.com
@@chrischang9036 19zizu85@gmail.com
Thanks for sharing .
I understand, but no one else really understands the deep impact it has on life...as mentioned... making decisions, overwhelmed, etc... Early on afterwards not only did I have many internal injuries that cause a lot of pain and will.... Some say I should win an Oscar. Faking it. But what else can one do? If you don't have support from family and friends who really care (and my parents died during this time) then is there anyone who is deeply committed to understand because of love? A few, This has made me more aware that the connection between others is broken, and it's broken because there is a lack of interest. The side effect of that is typically deep depression and PTSD. "Just snap out of it", "think positive".... well, people, if I didn't try to snap out of it and if I didn't try to think positive, then I wouldn't be here. I fight wanting to die because who would notice? That is the attitude I have gotten for many many years. Recently, after 16 years, I've noticed there are some who are now willing to talk about it and understand. It helps, but maybe if this woujld have happened earlier.... One other thing I hate is others who don't want to talk about their issues. Because mine is worse than theirs. I DO NOT HAVE THE CORNER ON PAIN, and I'm interested in you. Let's support each other~. I love your video's.
Fabulous!!! I am a Survivor of a severe TBI myself, and your words are Right On Point for Us All! Bless You So Much!!! I can't wait to Share the heck out of your Video, it's amazing! We get so tired of the old "You Look Fine", "You Don't Look Like You Had A Brain Injury" and the rest of the Negative Hurtful crud!!!
I get seizure.
They should have a support group for all of us since we probably all understand each other , since each of us has been in each other’s shoes , literally .
Very Good ☺️. It's been awhile since my aneurysm when I almost died. It does get easier but I have to be kind to myself on difficult days
"You look fine" or "you look great" used to bother me so much after my TBI. I heard it from everyone, and each time, it triggered me like an insult, I'm grateful my physical injures healed well, that's all they see and understand, and no amount of explaining it changes the perception that "you look fine"
This is amazing. The hardest part of these past 7 months and counting is feeling so alone. This helps a lot. Thank you.
Are you good now tony?
took Me 2 Years to see what was going on
Trust me, focus intently on what you’re interested in with conversations and shut out the negativity and blatant ignorance of individuals
54 year old man here with a brain injury dating back to seven years of age. Fractured skull impacting the frontal lobe area. I felt like crying listening to this. Thank you!!
I'm just losing everything. It's so hard. I used to be exceptional at spelling and I'm losing it. I'm so exhausted. When people talk to me for too long I start to phase out. I am trying hard. I hate this.
I have been arguing about this with a bunch of my relatives talking about my own experience with TBI, they still don't believe that it is real and changes you throughly, even though I ain't look fine from on the outside, 'cause even the ones who don't know me while walking down the street,they can tell that I have a brain injury due to my skull's damage, it appears right on easily! As you said, it's an invisible injury they can't grasp it unless they get there one day, and I hope good health for all, a brain injury for a nutshell is relatively like living in hell,each day you have to suffer to get thru the day.
My favorite is. You're very lucky. Lol you think? Sometimes I think I would have been luckier if I died.
Mr Hill i feel u
But no matter what dont
I hear ya man, I ask myself what did I do to deserve this? I must of been a real rat bastard in my past life for this
Mr Hill I know the last several years would have been a lot less painful if I had died, and so would the next however many ever years I have left. Please, don’t anyone be alarmed, it’s just that these thoughts are such a constant companion that I don’t flinch at shit anymore. Best of luck to all, this is the worst.
Vashu you can't feel pain if you're dead. Can't feel pleasure, either. Our TBI's are a challenge most don't have to face, but we can take pride in ourselves knowing that we are still moving forward. Shopping for groceries as a normal person vs someone with a TBI is quite a different affair, but we manage. Take a second to appreciate how tough you are, and what you do even with an injury like this. I hope life is going well for you!
This older video will never lose its truth and impact. I dont think very many people outside of TBI really care but as for me and others who have survived TBI my heart goes out. Thank you
Thanks for bringing awareness to our daily battles. For this very reason, I go shopping first thing in the morning when it's dead in the store and I work on my list and screenshot my list to my phone to be able to have a visual in case if I'm struggling I can show the employee what I'm looking for. I avoid going out when it's crowded or in the afternoon or evening since by then I'm completely drained of all energy. I do have other disabilities that are somewhat visible in the way that you can see I have to use a walker which is partially due to brain injuries with major vertigo and ruined knees that need to be replaced. The other thing that people can't see is the heart condition that has developed as well that causes me to pass out so the walker comes in real handy to be able to sit when I feel it becoming too much. This heart issue from what we understand is due to an autoimmune condition that can happen sometimes after brain injury since the whole brain can change and mess with other parts of the body. As you said they may see me on a "good" day which is more like a good moment while I'm out getting groceries but when I get home I have to go lay down for hours and sometimes days of rest after and the rest before going as well.
I thank you. That is my life i was injured in car accident 2015. With severe. But people don't understand only my family knows my struggles. People only shocked when i have trouble speaking. But its nuch more than that. Of day to day.
Thank you for this. I had a TBI back in March. I have to grit my teeth when people say “oh, you look great, you don’t look like you have had a brain injury” or “are you better now”
I wish people would think before they speak 🤯😥
I had a 2 strokes over 5 years ago, left with Aphasia. People always say how great I look, they can't tell. As nice as it is to hear, It drives me crazy. Just wanted to thank you for sharing this video. So much of your monolog is spot on...
the issue of grocery shop... it was the only thing i could manage on a Saturday . i had to rest for the rest of the day .... noisy over stimulation. often losing my trolley. going back and forward to find things. so exhausting.
This is so unbelievably an exact description of what it feels like for me. Looking normal but inside fighting with virtually everything I have to do it. Walk, talk anything
I take care of a wheelchair bound man who has a TBI. This video was so enlightening. I'm going to have to put the bible into more of my actions.
Yes!! Everyone has been judging me and talking crap to me and about me. (Co-workers and families). Not my friends though. It’s so good to listen to this. Thank u.
Since my avm rupture a year and a half ago I've lost all my friends. They don't understand any of it from the survival and recovery to the daily battles.
I may not have a brain injury, but I understand what it's like to be told 'you look fine'. I've a genetic heart condition. On the surface, it doesn't show. No visible deformities or whatever people expect to see when you have something that practically cripples you.
So they don't understand. They think it's all in your head, that you can get over it. They'd probably think that about someone with a brain injury and say it exactly like that and be incredibly insensitive.
I subbed to you. And will share this for you.
You're trying to make a difference, and I respect that.
Mine was bad enough, it was a long time before I could remember anything.
Just know, that god has a great plan for you, that is what I striving for.
Green is my new favorite color! A viewer just sent this to me because I tried to explain some of the things I'm going through. I'm so glad they shared your video with me. Subbing! Thank you!
Yup. I'm 52. 31 years into this TBI. I get CLOSER to 100% but know I'll never BE 100%. Life is difficult. But life isn't bad. If you think life is bad because life is difficult, life will never be good.
Life is difficult. That's the first sentence in the book, The Road Less Traveled.
THANK YOU for making & posting this video. I hope it reaches all the right people. I'm 3 weeks out of the ICU after a burst brain aneurysm. You are SO RIGHT about how appearances affect what people expect from us. The crashing is real. The headaches are debilitating. Even telling people doesn't seem to work when they are conditioned to expect 110% from you.
The DAYS of recovery after a 'stimulating' event,, or a good 'productive' day or two in a row, is the WORST! - It makes you feel mentally and emotionally unstable --especially because you 'get' how this must look to the outside world... and it's really depressing to go from knowing that the people close to you think highly of you to 'knowing' what they must think of you now... even though they don't say it, you "know" your losing they're support, interest and respect.
This is the best way I've seen it described. Best wishes.
Thank you! Often we have to remind, educate, re-educate and prove my son’s injury especially to his school. Your words ring so true and it is comforting yet so maddening that we have to keep explaining. The best people around a brain injury child are those who do not make assumptions, show humility and sincere empathy. We find that kids are way better than adults at demonstrating the aforementioned (and especially those adults who chose special education as their career). We move (battle) forward for equity and re-discovery of life’s gifts. Regards.
I wanna say this is the best video I’ve seen that explains what having a brain injury is actually like. I currently have a brain injury that I got a little over 3 years ago from a serious, near fatal car accident on the highway, so what she says about what it’s like to actually have a brain injury and the fact that it’s a silent injury, because it’s not visible, everything with you looks fine but it’s really not, your brain is on a roller coaster.
Thank you for your video! ❤ I think the biggest view/comment by others, as you said, is the WORST. I'm thankful for others like me, who I can share with, learn new ways to cope and rest in. Hi out there!!
Thanks for sharing this, and so true! Lets add to "you look fine" the sentence: "you should have recovered alteady" Devastating.
Having tbi is incredibly difficult, also means where more prone to most other mental illnesses too, for me the tinnitus and depresion is the worst trying to keep on top of and you only have so many moments too meditate and keep some sort of balance going, the tinnitus can go really over wack in stress to the point where my brain will get nerve shocks and they hurt mad crazy 😥 most of us diagnosis comes late because after a serious head injury most of us arnt warned about neurological deterioration over time, the best things us eating healthy and fitness particularly heavy weights that release a hormone in the brain from our muscles that imap tvthe brain on all the best levels to give us more space to grow better 😉😊
i feel all of this .people don't unstand and i make music before theTBI and its harder now to do the thinking that I love TO IS MUSIC.ALL YOU SAID I FEEL ALL OF THAT . THANK YOU
Your first 30 seconds are SO TRUE! I was fortunate to have my face put back together pretty well by the reconstructive surgeons as well as my other injuries. People keep saying exactly what you said. "You look great. You don't even look like you had an accident." As if looking ok is the only thing that counts. I want to scream that I would give just about anything to feel well again. I honestly don't care as much about how I look cosmetically. I just want to feel like my old self. I know people mean well, and I know that what people say is coming from a good place and they mean well, so I don't let them know how what they say affects me. So, what you said in this video is spot on!
I struggle with a brain injury, no one really seems to understand. I struggle with depression
Thats real talk right there. We have been suffering for 4+ years with a brain injury. We have recovered to about 85% of what we were prior. It took a very long time to get there.
Amazing video for those of us who have never known these things about TBI. I have a family member whom I dearly, dearly love who was recently in an accident and suffered an acute subdural hematoma, and have begun researching how to care for and communicate with a person who thinks and acts different than before. In the past, all I knew to do is to feel sorrow for the person and the family. This has opened a new door to make a difference to the relationship I can have with my loved one, and to make awareness to TBI. The first thing I learned from this is how all of society needs to understand this. It will make the world a better place if we can know what is needed to help anyone with this injury. I'm getting a GREEN SHIRT, and I might just wear it every day. Please share this video. Everyone who has this terrible injury deserves the best chance to live the best life possible. They need our love and understanding just like everyone else, and the more we know, the more we can help them. We don't have to just feel sorry for them anymore. If we understand how their mind works now, it's a way to help them to enjoy life more and go forward with love and hope and being a part of our lives. So let's get started.
Very well said there 😒
Yep. I saw a friend today who said those exact words and I know they meant well cause my TBi is new but I was like “well the wrapping paper looks good but what’s inside the box is only partially assembled”. It’s a soul crushing, every day is a new “WTF, who is in charge of my body??” Moment and I am just along for the ride. Thank you.
I get fustrated at times and angry . I feel unpredictable and im just trying to get my life back together. Feels so hopeless at times.
Engels1 Trevizo i can relate especially when no one else around you knows or cares and you have veen misdiagnosed
I truely have a TBI. I didn't understand what it was at the time. I was comfused. I didn't know what it meant for me, im i going to be labeled as a person with tbi . Am i brocken or what that was my question for myself to answer honestly.
Engels1 Trevizo idk i know i have it too but i have no help and i feel conpletly broken sorry you have to go threw that
Yeah the reason i found video because i put tbi in the search and found this video. Then watching these videos helped me make sense of it.
Engels1 Trevizo did you get help from hospital/suppport family/friends ?
Thank you for making this video. It touched me deeply and I finally felt understood!
you are understood my dear
Thank you for this you explain it so well, if I get ppl ask me what is like to have a #TBI I just show them this video. Thank you for making my life mush easier x
I need to share your video w friends and family. I still have neurofatigue and people think I'm lazy. I had my BI when I was 50. I did not return to work. I think alot of friends were jealous and didn't understand what I was going thru and still am. 😢
For two years my doctor fought me like hell that I did not have a brain injury! Even when I could not get off the sofa for weeks at a time she insisted it was sleep apnea. She was worried that I would collect a settlement from the car accident.
I walk around dizzy all the time. Sometimes I think I am getting better and then it starts all over again. I get headaches that last for days and I have terrible sleep patterns. I can type far better than I can talk and there are times that I can hardly make sense of what I am doing.
I finally found an eye doctor who would listen to me. The accident gave me a lateral shift in my vision. Every thing is offset to the left. He prescribed prism glasses and it has helped a little. He has reassured me that in six month I will notice a huge difference. It is unknown at this time if I will have permanent brain damage.
I cannot help but wonder if that doctor had sent me to the right people in the very beginning if it would have made a huge difference. I have not worked in a year and no one will hire me because I am not the same person that I was. I am almost child like at times.
Please take a head injury serious and if your doctor is not listening to you than please go to another one. Keep going to doctors until you get one that wants to actually help you.
These simple lines took me nearly hour minutes to write. I kept making spelling mistakes and had to keep rewriting.
I too have a brain injury! Two car accidents! No outside scars, they are all inside! I have had O.T and a Life Coach for the last 8 years! I am wiping the tears as I am writing this! Please.. understand I can relate to Everything you said! I also love the colour Green! Thanks again, my daughter shared this to me! xoxo
Great video ... I sustained a ‘mild’ TBI just over two years ago and completely understand everything you said... there’s not enough awareness out there so the experiences I’ve found recently on UA-cam are reassuring... it can be very isolating post BI... especially when time has passed and the expectation is that ‘you must be better by now’!!! People mean well when they say those things as they can’t have any idea unless they, or someone they know well has, or is, in the situation.... I didn’t know that March is BI awareness month!! All the best to all you guys out there in this situation... my one piece of advice - other than the obvious of taking care of yourself - would be to be okay with letting people know what you’re going through, just be open and honest with people... take care...
getting off SUGAR helped get rid of my TBI headaches
I wish more people understood TBI...
17 years battling and recovering. The struggle is real.
So true in my experience. Thank you for making this video.
Wow, every single word you said here is what I experience too! I had major damage to my face from my last accident and the surgeons did an incredible job putting my face back together and only a very small, almost unnoticeable scar remains visually. But all of the issues you describe I feel too. When I show people the pictures of my face in the ER, they all focus on how I look, and no one asks how I feel. I have a total of six documented head injuries, including three concussions, two facial reconstructive surgeries, and in my body there are 18 pieces of titanium holding me together. Yet, people only comment on how I look. I know they mean well, but I would give anything to be able to ride a bike, jog, or do anything I used to do. How I look pretty much seems unimportant to how bad I feel and how much functionality I lost.
Was informed that I have mild TBI. Yet have slirred speech, forget things, and many things that you mentioned.
I cried so hard watching this... It's been so difficult for me to deal with this. Thank you, because it's been almost impossible for me to communicate this to my family and friends. Thank you from the bottom of my heart.
FYI: I was hit by a car going highway speeds, while I was walking. It was a hit and run, and they left me in a ditch, in the middle of nowhere. I'm full of metal plates, pins, rods, etc...
Jonathan Calamateos send this to people so they can learn.
I have all new friends. that's normal for people with TBIs. it's ok because you're a different person.
Subscribed to your channel today. Like losing the love of my life in a work place shooting I was naive enough to think until that moment a mass shooting was something that affected other people's lives. Not without compassion of course I just never dreamed it would happen in my life. The only people who who are aware or truly understand how hard my life is right now are the array of specialists who are trying to help me reach maximum recovery. I am so scared because I don't know what that is going to look like. I do know I will never work in Critical Care again which is heartbreaking. I know I shouldn't have survived that horrific accident. But no one close to me beyond the miracle of my surviving has a clue what I am dealing with. Someone asked me yesterday to write an essay of the miracle of my surviving. They just don't have a clue..
Thank you so so much for this. The part where you say that after events no one sees the crash aftermath started my tears. I finally don't feel so alone, because you described it so very well! This was a video I wish everyone could see and hear, then maybe the understanding would be there. TFS!! God bless everyone of us that have to struggle through this rveryday.
You are amazing. My tbi occurred in 2004. I can relate to a lot of that.
Thanks for the kind words, I wish everyone was as understanding
Hey, I've just discovered your channel, I can definitely relate strongly to this. I was attacked and mugged in 2009 and I'm still struggling with many things as I had a severe frontal lobe subdural hematoma with contusions, I didn't find out until last year that I even had brain damage, let alone permanent brain damage, until close friends noticed issues and I went to the hospital for assessments, so all this is still quite new to me, luckily I have some great friends to support me. Thank you for your uploads and dedicated time to helping us in a similar situation :)
Best wishes to you, Jonathan.
This, a millions times this...I wish I could force my executive Chef to watch this and process this video. It's been 2 years since my accident and life forced me to get back to work in a stressful environment (if any culinary folks are in here you know the stress of being a chef) Every day back to work is still a struggle and he still gets upset and irritated that I am not the same productive, efficient chef I used to be. My work load is minimal, my days are short and so is my work week, but it's still hard...I am getting so sick of this post TBI life.
yeah, my one chef would just throw food, knives and pans at me and go "what do you have ADHD""Its not hard, look."
Junk food makes me feel like I'm on street drugs, health food makes me feel like a genius, lack of sleep makes me suicidal... I have been hit by a car twice while on foot at the ages 11 and 17 that were going 45 mph. Life is very hard when your brain feels inflamed half the time and can't concentrate. I'm glad I'm not alone.
I am the luckiest, smartest, and happiest person who ever experienced a traumatic brain injury.
TBI Survive I'm interested in your story and your feelings.... Because I feel the same as you do... Luckiest and not yet the smartest but the happiest
Taylor turco, or anyone else. If you're interested in how I became the happiest person alive, here's my story :
play.google.com/store/books/details?id=S3qLBAAAQBAJ :
I wrote this book after I traumatically injured my brain,then got married.
It is very frustrating, to live with a brain injury. When I have to explain to someone that I suffer from PTBI I feel like im sprouting nonsense because I know they wont understand. I always hear "oh, you look fine, you are smiling all the time and being so enthusiastic" its true but I feel the opposite on the inside. I always feel crazy or like i'm different from everyone else but this video... gives me hope. Im not a lone and I wish I found this video sooner, it would have saved me from a lot of self doubt that I go through now
🌸💗✨🙏🧸
Thank you for showing this video. I feel alone sometimes trying to understand how we feel with brain trauma. Appreciate this so much.
Spot on been there sending love from headway Nottingham UK thanks for video got mine in March lol been ten years never give up on yourself you are doing amazing x
I had had sleep one off. Couldnt handle daily functions anymore. Tried for a while but couldnt snap out of it. Finally decided to get in bed and sleep. 16-20 hours a day for 7 months I laid in bed and slept. Got up afterwards and felt fine. Then went to Las Vegas for a year.
Thank you for sharing everything I go through on a daily basis. I had a stroke in the occipital lobe last year. It took away my eyesight on the left side of both my eyes. I have headaches. Frustrations with simple things. Loud noises, overstimulation. And other things. Dizziness, grouchy sometimes. Memory loss, especially short term. It takes a lot of prayer and understanding as well as meditation to get me through sometimes. Thank you for sharing your info. I've been wanting to watch your video for some time now. 🙏😉
People always say but you look so normal..thank you for explaining this so well :) It's hard explaining to my friends because I do not want to lose them or be a burden when we go out and have fun. I can do most things they can do, I just do it a little differently and sometimes clumsily. I just wish they knew how much I love doing these fun things even though it requires a lot of extra effort on my part to do it. Some times I over apologize or pre-apologize for my short comings because I'm afraid I will frustrate them or lose them as friends.
Over the years I've had a few survivors with invisible brain injuries tell me that I'm lucky people can see that I'm disabled. What they say is absolutely true in two key areas 1. getting the medical care we need and 2. people accepting the severity of our brain injuries.
I had a severe brain injury. But so did many people whose insurance cut them off in two days to a week. This wasn't their medical teams saying they were ready to go home. Their teams fought tooth and claw
to try to get one more day, one more day.
To make a change I think we need to see this as a problem for all of us survivors, rather than leaving people with invisible brain injuries to struggle on their own.
sister you are absolutely right,people say to me you look very good despite my brain injury,and it is very very hard,everything you said is correct,I was three weeks in coma by the way
That was good to hear:) I cry a lot after a massive epidural hematoma from an assault but only in private. I'm 1.5 yrs out and my family have not spoken to me once. They pretend it hasn't happened and that I am the devil for not talking. Apparently I've made a 'full recovery' except for the hole in the side of my skull which has not been replaced. So why do I feel so scared for the future? Some friends say, oh it's only a hole, your fine. Shame it's not that simple.
Harry Hayward im sorry thats the worst of having no one understand
I’m glad you put this out there. Many people need to hear this I wish I watched this back when I was struggling to find why I’m not getting “better” I’m going to like and share and subscribe thanks
She hit the nail on the head....
Well said, I've shared this with my friends bc you say it much bter than I could, Thank You!!! (esp the store story)
After getting up from coma after my accident....
I wasn't even able to recognize my parents....
My surgeon told me that i wud be able to get 60 percent of my memory back at the most...
Its been 16 yrs....but still I m dependent on my parents....
Though I was a science stream student buy after my accident I did BCOM from DU....
Worked in a couple of international BPOs...
But...even after clearing the intervies and tests....
After a couple of weeks my colleagues were able to disguise me and started making fun of me and laughing at me...
Calling me a PAAGAL...PAAGAL...
thus i had to change BPOs one after another...
Wherever i went i became the laughing stock for everyone....
I'm so glad that I'm not the only one who feels this. I constantly joke with friends that I'm the best person to tell a secret to, by the time you finish telling me, I'll forget the secret. I used to love going to Nascar races, concerts, etc. The one time I tried, I ended up hospitalized because I got brain overload & I literally just shut down. Now I go for very peaceful places, not too many people around, just me & my dog.
I don't take it as discrediting because I try to take kindness as kindness. I do SO much MORE appreciate if people say "I can't even tell." or "From the outside, I would never know." Because I feel recognized for my hard work focusing and (yes) hiding the gnarly symptoms.
To be now involved with other people with the same difficulties has opened a new door for me people have no idea how hard things can be and to engage with supporting organizations can be a relief !
And the overload from visual input and just light. Much love to all of you living with brain injury!
Thank you for this. It feels nice to know you're not alone.
I still watch this every 6 to 8 months. You put the words that I can’t find.
Spot on! Good information for those that genuinely care about you for sure.
My brain injury happened on March 20th. I died three times and they had to bring back. It was the most excruciating pain I have ever been through I can't even word what it was like it was so hard. Thank God my wife loves me. And has been with me for 31 years she needs the world to me at least my mind remember to people are, I remember names of people and my best friend Eddie. It is so hard having a brain injury I don't wish it on my worst enemy it is horrible(except for maybe my ex-wife>)
I get exactly the same “complement” you look fine in so many places. Thank You for the video.
Thanks. Just had emergency brain surgery in early May....this video helps me understand my situation better.
I know if I always rest I may as well be dead. If I move when I'm tired I'm feeling less sleepy. Still I have to kick back around mid day for an hour, or so....I know it would have been easier to die, but now want to fight to live a better life than before when I was on pain killers for years.
No more of that, no nicotine so I've got a new life.
Just have to stay awake to appreciate how lucky I am. Guess I almost didn't make it.
yes, people always saying how "normal" I am, but exclude me from extended or in-depth conversation. No more social life except for doctors. Its a horrible nightmare that never ends.
Thanks for posting this! You hit it right on the 'head'. Have you been following me? Serious, this is so close to what I experience. THANKS!!!
Cristabelle: I just discovered you today. If you have a CD I shall buy it. Thank you for summarizing so succinctly and compassionately what we go through every day. I've had 2 TBI's and surgery on my facial bones after taking a window out with my head in a car accident and, you're SO right, when I hear people say, "I can't even tell" it's almost discrediting what I've gone through.
"You look fine" is just a very polite way of saying "I think you're exadurating." It's one of the most rude things someone can say while giving them an excuse to feel like they're being nice. Like you NEED to acknowledge what's happening for this to move forward and for us to get anywhere. Until you come to terms with what your friend is experiencing and learn to HEAR them, you are no help to them, and can actually be harmful because they won't trust you when they have a crash emergency and are trying to figure out who to call. Substance abuse and other things like that are much higher in people with a TBI history - for more severe cases, it doesn't just go away after a few months. It takes sometimes up to several years to recover. But just because the injury is invisible doesn't mean that it's fake. If you care AT ALL about the people around you, LISTEN when they tell you that their cognitive and mood issues are TBI-induced. What they're really dealing with is often much more than they're telling you, so if they're telling you any of it, DO NOT tell them they seem fine!