How Being Brain Damaged Felt to Me

I began writing this piece in August 2018, three years after my RTC, it largely relates to my first month of conscious awareness in the Haywood Hospital rehabilitation centre.  Many of the thoughts which appear negative, were thankfully only fleeting.


  • I’d look in the mirror in my hospital room and visually appear to be me, but somehow I felt I was a different person.
  • When asked how my head felt I'd respond cloudy.  Cloudy didn't properly describe how I felt, it was simply impossible to explain.
  • When people said it could take two or more years to recover it felt like I was being fobbed off, I genuinely felt I would never get better.
  • Hopeless and helpless summed up how I thought about my situation.
  • I sometimes referred to my brain being like a Cadburys cream egg.
  • When I saw ex-patients on visits to the hospital who had recovered I was convinced they could never have been as bad as I was.
  • ​I sometimes tried to appear extra positive and would say something along the lines of "In a year's time I'm sure I'll be better and looking back on my brain damaged state as a memory in my past".  When saying these words I never believed a word, they were a lie.
  • I could remember that I was once normal, was successful and had a great life, I never felt I could return to anything approaching how I had been.
  • Dealing with being brain damaged was always a threat to me becoming depressed, I was made fully aware of its potential impact.  Whenever I felt a little miserable I refused to succumb because of the impact it would have on my loved ones.
  • I never felt sorry for myself, I felt sorry for those who loved and cared about me.
  • I thought my daughter, Olivia, would miss out on being with my hopefully useful parental influence.  I wanted to be Olivia's dad, not her grandad.
  • I used to think "What had my life partner (Ruth) done to deserve being lumbered by me?"
  • When discussing my comatose period, people would say things like "It must have been terrible".  I had to be honest and say I didn't feel a thing, but recognised it must have been terrible for my loved ones.
  • I knew I was a reasonably intelligent person, but was aware that I wouldn't come across as such.  I was sometimes asked what work I did (IT security consultant), when I explained my senior roles I felt a little like a fraud.
  • I couldn't watch the TV when anything came on which showed London or New York (happy places for me).  I used to screen the TV with my hands until the scene was over.
  • I often recalled how we'd gone on a family holiday to Florida the previous year, I was delighted that we'd had the wonderful family experience together before it was too late.
  • I'd keep apologising for being so limited at many things which previously came naturally.
  • I sometimes wished I had never been successful and the RTC hadn’t cost me so much.  My sadness was not about the lost money, it was the knowledge that I was once an achiever and now I was very limited.
  • I couldn’t walk - not through physical impairment, I simply couldn't do stuff
  • I was not prepared for normal life despite being given fantastic support.
  • I remember the things I used to think, but I do not recall how it felt.


The following quote was taken from a neuro-psychiatrist interview in May 2016 (ten months after the RTC): When asked about his hopes for the future David responded: “Grim... I have a horrible perspective of the future.”


Brain Injury Tips

https://www.brainline.org/article/9-things-not-say-someone-brain-injury

The advice is all plausible and helpful.  You may receive the comment "You seem fine to me" with well meaning intent, but it only confirms that people cannot possibly grasp how you feel.


https://www.brainline.org/article/10-things-people-brain-injury-would-hear
Some of these tips are really beautiful, for example: "I don't know how you feel, but you are my friend and I will always be there for you."


Brain Injury - Thoughts of Others
https://www.brainline.org/article/traumatic-brain-injury-is

I've copied lots of comments from the web-site and pasted them below.  I can see how easy it would have been to fall into a pit of despair, I'm so grateful I didn't.  I have emboldened some comments which I strongly identify with as I can remember having some similar thoughts during the very early stages of my recovery.

  • ​A puzzle … all the pieces are there, but in the wrong order.
  • When the cursor disappears from your mental computer screen.
  • Brain fog, confusion, difficulty learning new things, being able to be “high-functioning” but being very slow at it.
  • An invisible thief.
  • Devastating. Exhausting. Widely misunderstood.
  • Scary. I look the same but I feel like someone else.
  • MIA or AWOL … Missing in Action or Away Without Leaving!
  • An invisible memory-taker, mood-changer, life-changer!
  • Like being under a constant waterfall and I’m just trying to catch my breath and not drown!
  • Thinking with speed bumps.
  • Like an earthquake in my brain that knocked down bridges and damaged highways and knocked out some - but not all - lines of communication. Some of these things get rebuilt more quickly than others, and some are easily re-damaged.
  • Like having everything in your life suspended in Jell-O, and just when you reach out for something, the Jell-O gets blended.
  • A family affair … when a family member has one, it affects everyone.
  • A constant struggle for the rest of your life … you know how you used to be and you want your life back … but it won't happen … it's like living in thick fog.
  • Scrambled egg between my ears.
  • The absolute hardest thing that you can imagine going through!! Unbelievably frustrating and isolating.
  • Learning to live in a brain that sometimes feels like it belongs to a stranger.
  • Like having the flu all day, every day … for the rest of your life.
  • 2015, I died in my mind. Now I have no idea who I am. I knew what I was. But she is gone. I see the face but the brain is off. MIA Missing In Accident!!!!!! I have changed 180 degrees. I hate the new me. My voice, foods, smells, lights, noise, music. I hate who I am now!!!!!!!!
  • Waiting for people to be quiet without telling them to shutup so you can continue with what you were doing, but wanting to tell them to shutup.
  • Isolation, emotional roller coaster, suicidal, invisible, a different person, over react, angry at doctor's lack of understanding, miss normal interactions and activities.
  • Eternal "on-hold" (the music stops, you think someone is going to answer, then the crappy, old music starts again).
  • Some days I feel like I am wading through waist high mud, trying to complete tasks that used to come so easily to me, I never gave them any thought, and it doesn’t matter if I’m told I’m doing a good job, I still feel like I’m doing everything in the slowest gear and I can’t verbalize how worthless I feel.
  • I had brain injury and life has so changed for me. It is very frustrating that I am slower. My memory is not good and for no reason at all I am filled with either sadness, fear or anxiety. These emotions i feel daily. I just want to thank god for the support I have from family and friends.
  • TBI is like you’re screaming at the of lungs but no one hears you. You're struggling to say “I’m In here, give me some time to gather my thoughts“.
  • Walking through a field in the dark. You don’t know where the holes are until you fall into one.
  • I know I have mashed potatoes for brains and do wish I could remember things as they were.
  • My brain is like a hornets nest....and somebody kicked it
  • After TBI, you are a computer of which the hard-drive is loaded with 5TB of precious data, but the RAM is broken, and the processor is also damaged and terribly slow slow slow slow slow ... Now do what with 5TB of inaccessible date?
  • Often like being thrown back into childhood. New tasks are difficult to learn and sometimes scary. Living in a thick fog.
  • The loss of a normal, everyday life. A move into a new, challenging, redeveloping  life that causes tears and appreciation of every morning...
  • Like being a child again. I went from straight A about to graduate adult college senior who just landed my dream job to a month or two in and in danger of not keeping my job or completing/passing.  I can't take light, cant sing songs on the radio, stutter, and struggle to get words out or do my work.  And when I make myself work I am nauseous, dizzy, and my brain hurts for days.  A dangerous traffic felon that shouldn't have had his license returned stole everything I have given up years to give my child and in an instant with an illegal left in front of oncoming traffic.
  • Waking up a different person. And no matter how much you want to, you know you'll never be the same.
  • It's like being in a different country. Everything has changed. You don't always know what they are saying but you know they are talking to you or about you.  You don't remember where home is and can't get there.  So you just wonder.
  • Like having my cognitive radar turned off all the time.  When I want to interact with someone, I struggle to focus as hard as I can to process what they are saying.  I understand, but eventually my mind drifts off and I battle to concentrate on the interaction again.  I forget some or a lot of what we discussed.
  • Doctors saved my life, but I’m not really sure it’s a life worth living.
  • Beyond words....I have lost it all and work diligently to get it all back regardless.  One valuable lesson for me ~ who my friends truly are.
  • Memory taker, life changer & makes you a "new you" that don't like. Beyond words.  I lost everything.... 53 years old and starting from scratch..
  • Being dropped into the wrong body.
  • Like a puppeteer controlling you, and you are aware of it happening but unable to tell them to stop.
  • You know all the answers to the questions, but they are just out of reach and when you try to stretch to grab them it feels like your brain is being wrung out like a towel.
  • Having this injury no one understands, not even yourself is frustrating because you look normal and no one understands what is going on inside!  You can't see a heart attack victim, why can't people realize this is the same (not being able to see) and you would change it in a second if you could.
  • Like I have pop rocks going off in my head that I cant control.  I relearn birthdays I once knew and am thankful for life, God and my family and that my loved ones are patient and kind.
  • I died 446 days ago.  I lost the life that I loved.  I lost the person I should be.  I keep reminding myself that it hasn't always been this way.  But I realize now, that, it will always be this way.  I wish I could turn back time, even for just a second, just to feel something real again - to sense time, to feel laughter, to be able to remember.  I used to believe in God. But not anymore. It hasn't always been this way.
  • Thinking I'm the same person, why can't I still do the same things.
  • I have come a long way since my TBI, but it has changed my entire life and left me feeling so alone. I am very intelligent and can do many things. However,when I do tell others I have had a brain injury and I honestly don't understand something, they look at me like I am crazy. Whats even worse is when I try to explain, the best I can, where I am coming from or how MY thought process works....I am told, "There is nothing wrong with you. It's you, you just don't want to (whatever). I don't believe that brain injury crap." My problem is that I have learned how to adapt into society and mask things to try and lead a normal life again but emotionally i feel like i am dying at times. JUST BECAUSE YOU CAN NOT SEE IT, DOES NOT MEAN THAT IT IS NOT REAL!!! I just want to be able to live life and to be happy on the inside and stop just maintaining from day to day.
  • Brain injury is like being trapped in space, with no ground below and darkness ahead - just floating around.​
  • I feel like a ghost and I can see the real world and people living there lives.  But I just can't be part of it no matter how hard I try.  I now realize how a fish must feel in a fish bowl.
  • Scaling a wall without suction.  You can see it, touch it, know what needs to be done but you just can't get it all together.  It's almost as if you're an unexplainable magician.  You start the trick with multiple objects and you concoct this awesome looking piece but neither you nor anyone else knows how you got to the finished product.
  • Part of me died that day, but other parts of me flourished.
  • Missing who you used to be, while you don't remember who that was.
  • Having this TBI is like trying to see through frosted glass you can't tell what you see.
  • Stripped to the core.  No identity.  Cut the cord.  Restart.
  • My brain injury has robbed me of my life.  I am like a puzzle with a lot of missing piece.  I am a new person and I don`t want to be me.  I want to be who I was.  I have become reclusive, it is easier than dealing with people who will never understand me.
  • It's like the real you died and this really old person took over your body you cant focus.
  • Like a prison with invisible walls, You lose everything: family, friends, and yourself.  Because the past is taken and you are left to stand alone in the now, with no hope of a future.
  • Being very easily overwhelmed by too much of anything around you.  Too much noise, conversation, images, wind, rain or sunlight.
  • Realizing something is different but unable to define it.
  • Compare to someone updating your computer with a new and unexplained operating system without your permission.
  • Communication is the hardest thing to do...how do you tell someone something is wrong if you can't explain what it is? 
  • A long strange trip without a light at the end of the tunnel.
  • Like looking in a mirror and seeing someone else.  Brain injury is living a life that you do not even know, being replaced by a new you!
  • I feel lucky each new day because I know I am alive.  Do I wish it never happened ?  Of course I do but I'm realistic and this is my life now.  And the most important thing is I have life!  Its a journey each new day.
  • Like being robbed of your identity and purpose in life but every single day you get up and try so hard to be even half of what you were....and never getting there.
  • It's like trying to think clearly and live my life in the middle of a hurricane.
  • I feel like I'm never going to be the same.  I look in the mirror and I see me but, it's not me.  I don't think the same.  I don't feel the same.
  • Traumatic Brain Injury is the hardest struggle one can ever have!  It puts us in a fight with ourselves, a fight that cannot be won!
  • Standing on the sidelines of life wanting to be included but at the same time afraid of the crowds.
  • I consciously watch thoughts leave my head as I'm saying them.  I am still the same person trapped in this limited mind.  At times I mourn the brain I used to have, but I also celebrate the person I am today who is conscious of it all and still finds the strength and courage to keep on keeping on.
  • Like having handcuffs on you brain.  Keeps you restricted in your thoughts most times.  When you do have a thought or something to say.... by the time you try to get it out... the thought is either gone or changed all together.
  • It's like forgetting who you are and wondering if you will even come back.
  • I'm getting better!  It took me a year to be able to read a book. But I can do it now.
  • Living with a brain that makes you become a NEW you unwanted.
  • Hard for others to see a condition that has no apparent visual tells.
  • Being alone in a crowded room.
  • The lights are on, but nobody's home.
  • It's like death, only you get to live.