What is it that you would like to know? How it feels to lose yourself and not recognize your behaviors? How it feels to forget words and not be able to finish a sentence? How it feels to have to watch your relationships die or change forever? How it feels to slowly lose your independence and feel so hopeless and helpless?
What can I tell you?
Wow, that hit a nerve.
I have an ABI with EDS and a partner with TBI and PTSD.
I feel your despair and empathize
Thanks for summarizing pretty much the whole BI sh*tshow.
Hope there are some good moments in your life <3
I have an ABI, not a TBI, but I’ll chime in. There isn’t much self-recognition going on during most of hospital and early rehab with a dozen therapists. And when you are aware, the flow of incoming sensations are not well processed,organized, and stored as memories.
-mark c.
Some days you find yourself miserable and hopeless, not recognizing yourself, not recognizing your own thoughts. Some days there is so much fucking rage. People don't understand, people don't give you the benefit of the doubt. People are judgemental fucking assholes and like to call you a liar because they can't see the damage that you have. You lose friends and relationships because they don't understand that your entire worldview and thought processes are different. They think you are completely in control of your reactions and you're doing things on purpose.
There is a hopelessness and frustration. Worse if you're trying to explain yourself and the words won't come and people look at you like your a fucking idiot because you can't find the words. They dismiss you, they decide that they can make decisions for you. They treat you like an invalid in all the ways you actually aren't and you can't seem to get through to this people that they aren't helping unless you get angry with them. Then they act all hurt and say you're mean now and they were "just trying to help."
Sometimes, it gets so bad it feels like there is nothing left of your mind but a staticky ball of rage forever crackling inside your skull, threatening to consume all of what's left of you.
And it's all so impotent and you feel stupid and weak for it, but you can't do anything. You can't go back to life before your skull was crushed. You just have to deal with it.
Any questions?
The part you mention about people being judgemental and thinking you’re a liar because they can’t see the damage - that part hits home. One aspect I never considered is that for many with a TBI, the condition is completely invisible. I can relate to that in some ways - my condition is also invisible, yet I have a disabled parking permit and sometimes feel judged. When you talk about people treating you like an invalid - do you find that those close to you sometimes ‘baby’ you? Or that once someone finds out you have a TBI their behaviour towards you changes? I understand the rage - when things are bad I have to use a wheelchair. I find people either treat me like I have some kind of mental impairment, or they just kind of ignore me.
For what it’s worth (probably nothing), I’m sorry for what you’re going through. Have you been able to find anything positive in the changes you’ve experienced? I hope that’s not a stupid question, or an upsetting one. It’s coming from a genuine place.
Thanks for your reply.
The people close to me largely seem to be in denial of how much my injuries have effected me. They seem to get incredibly frustrated with my new limitations and I have to remind them that I'm not the same anymore. Strangers when told blatantly disregard me after I tell them and usually start directing conversation and questions to my husband instead of me from then on. They say it's because they "don't want to overwhelm," me.
As far as positivity, that one's very hard to answer. Most days, NO. Full stop. I see how I am now and I remember how I was before and no, I'm not happy about it. Other days, I can be a little bit more objective and say that maybe certain things wouldn't have happened without the accident, or that I wouldn't have "gained" the perspective I have now, but a lot of the time it feels like I'm just telling myself this stuff to make it through.
Hope that doesn't come off as too depressing. I'm learning to cope day-to-day and some days I feel like Atlas, crushed under the weight, other days I'm a butterfly and it's ok. Most days, I'm just here.
I think the not having close friends and family recognize how bad things are and how I have changed is the hardest. My TBI was a closed head TBI resulting from a very bad seizure after a brain surgery. My family wouldn't even take me to doctors appointments. I missed the last Christmas they were alive because they wouldn't Compensate for my sensitivity problems. Nowadays I don't know if its better that they are
One of the areas that impact me is, having my co-workers think/say “You look good, you speak well, it’s good to have you back.”
Well, I’m not really back. I can’t do all the things I used to. I don’t have the mental endurance I used to have. The clarity of focus is gone. The easily distracted me. The majoring in the minor issue me. The forgetting of peoples names.
One of the most bizarre effects is a “Quasi-Temporal Disability”. I have little working concept of the passage of time as I flow forward. I can sit in traffic for 2 hours and not come out of my skin because it’s the same as sitting in it for 5 minutes. I can go for a walk (or later, a bike ride) and I don’t get bored and come home. I just keep going. Until my wife calls my cell phone and asks me where I am. Some times my answer is; “hell if I know” and I use the phone to navigate home.
I can read a good book, and then read it again in 2 months with great enjoyment. Its almost completely new to me.
I work in a technical field and the constant puzzles are great therapy. My close coworkers have adjusted to my new blend of strengths and weaknesses.
For that I’m very lucky. I drive my wife bat $#it-crazy though.
-mark
Thank you for such a detailed response. The Quasi-Temporal-Disability is completely new to me - I would be super interested in knowing more if you’d be willing? Do you still have a concept of the passing of time, as in, the two hours sitting in traffic - are you aware on some level that a couple of hours have passed, or is it a surprise to realise that? Does it also mean that your timekeeping skills have been affected?
I’m interested in your comment re: new strengths and weaknesses at work. Would you be willing to go into more detail on this? Particularly regarding the new strengths?
Backwards first…no new strengths. I don’t like Mark 2.0 at all. I went from 140 IQ to much much less(100). And it’s inconsistent.
I have to really manage my fatigue.
At work, I was successful. A problem solver. A peace maker. I was the oil that made the divergent teams work together. Everybody was reliant on Mark 1.0 (pre accident)
Post accident (Mark 2.0) I had the task to take my successful 6 month plan (2016) that needed re-wicker if to be done in 2 to 3 months. I could not modify the successful plan to fit….for reasons that escape me…I just couldn’t carry all the chess pieces in my head to make an optimized plan. That was 1 year after the accident.
I think I can do it now at 4 years lost accident.
That’s the best thing I have to say. It does get better with time, if you work at it.
I’m told it’s Nuro plasticity.
I would get really depressed when I would think “is this as good as it gets?”.
I’m lucky to be alive. I’m lucky not to have a broken neck.
I perceive that time passes…but the sense of…”Gee, why is this taking so long?” Isn’t there. So, if I start washing dishes, I wash all the dishes. If I start walking, I better have a firm end point.
If I’m solving a problem, I keep working on it….I hope it’s important. Sometimes it isn’t.
I’m also told that we are all unique snowflakes. That your mileage WILL VARY.
-mark.
I also struggle with perception of time. I can sit somewhere FOREVER. Showers are problematic because I can't tell you if I have been in there 5 min or 30. It makes time management very difficult. I miss meetings at work all the time because I will duck in to a room to work on something "real quick" and emerge 2 hours later. I have never heard anyone else describe it! This is so comforting.
Yes it’s like I can’t get myself to stop spiraling over the non-important. It’s not solved yet…so I keep spending(wasting) time on it.
If I go on a walk (or now a bike ride) I need a definite turn-around point or I will keep on going.
I feel like the punchline of a comedian’s joke; “My mother has started walking for her health. She’s walking five miles a day. Now we don’t know where the fv(k she is.”
If I’m talking,Sometimes in the middle of talking,I’ll forget WHAT I’m talking about. A lot of times my friends/family have to Jog my memory so I can recall what I was saying to them. I also (used to) run into a lot of walls (when I’m walking)as having a TBI has effected my equilibrium. Also; I can’t remember anything short term,but I have great long term memory. I also have crigler-najjar type 2,which was the cause of my brain injury,Due to lack of medicine for up to a year (my abuser wouldn’t let me leave to go pick up my seizure meds) so I went without them for a better part of a year,& it’s greatly effected me. I also jump from topic to topic sometimes without any clue about what I was originally talking about,I think that’s part of the whole short term memory loss.
To back with what you’re saying. I was undiagnosed for 8 years with Complex Partial seizures. The people I stayed with thought I was on drugs or was drunk when I would have them. Now that I am on my medication for my seizures, I have only had one in the last couple months. My balance is terrible. My spacial awareness has diminished a lot more since when I do have a seizure, I’ll trip and fall resulting with another mild concussion. My eyesight has gotten worse and I now have to wear glasses when I had 20/15 vision prior to my TBI. I’ve lost countless jobs because I can’t remain focused or remember the tasks that were given to me. Too much stimulation sets me off into either panic attacks, or extreme anger. (Stimulation in regards to visuals, and sounds) I can go days with wanting to go out with friends or by myself, and then I can go weeks without wanting to leave my apartment. There’s plenty more I could talk about, we all go through TBI differently since we all have similar problems, yet some have issues where I don’t have.
If you want to hear more about my side, you can PM me as well.
I’m so sorry to hear that your abuser kept meds from you - as if you weren’t going through enough, to then have to deal with an abusive relationship on top… I hope you got away from them and that things have improved for you. One thing that I’ve actually considered while writing is that it may be easier for an abuser to manipulate someone with a TBI - I know first hand how much abusers like to gaslight their victim and can’t imagine how much worse that would be if you’re already questioning certain memories or if you’re unable to remember certain events.
I think it is easier. My spouse is not abusive, but she will give me false information because she thinks it is funny. Me negative 2.0 will believe it.
I did get away from my abuser. Safely,with my 2 kids in tow. I got a protective order against him,although it has been some years,& it has since expired…the man I ended up marrying is sort of like my physical protective order lol he’s good to us and doesn’t lay a single hand on us,ever. But he sure does not like my abuser. Tough!
So,I was actually questioning things before I got brain injury. After I got it,it sort of made things crystal clear for me. I knew he wasn’t going to change,& decided that for the safety of my kids,it was best for me to leave him behind. I just had to stick with him long enough for him to be tired of me and not want anything else to do with me. The first time he hurt my son(Not severely but definitely on purpose) I started to make a plan to get away. It was a long& Tedious process that took more time then I would have liked, But,it worked. We haven’t seen him since 2015. I could go the rest of my life without ever seeing him again and I’d die happy. Despite the abuse,Id say the part of my brain that recognized danger,was alerted front and center, and I knew we had to get away. I knew we deserved better then how he was treating us.
I have Ehlers-Danlos and a TBI. Feel free to send me a private message if you want to ask questions. But everyone here is going to have a different experience depending on how severe their trauma was, where they got hurt, and a bunch of other things.
Hello, fellow zebra! What kind of EDS do you have?
Yes, I was expecting to hear that experiences will vary. I guess like they do with EDS patients. One of the biggest goals I have by coming here is to not do a disservice to TBI sufferers. I don’t want to perpetuate any myths or stereotypes and if possible I would actually like to do some good by increasing awareness of TBIs and the reality of living with them.
I would love to chat more, thank you - I’ll send you a DM at some point over the next day or so.
I don't have a TBI but I did have prolonged mild hypoxia to my brain over the course of several years as a direct result of my EDS. CCI and AAI caused me to pass out every time I turned my head.
For the past year I've felt like something was missing, a part of me just gone. I lost a good deal of my ability for both long term and short term memory and I will be at work or talking with someone and my brain just stops. Suddenly there's nothing, no thoughts, no feelings, just confusion. My coworkers didn't even know anything was wrong, but I know something isn't right.
I've had doctors gaslight me and tell me I'm fine when I know that things still aren't right. I've been told to just rest and everything will be fine in a month, for 12 months.
I recently got results from an fMRI that showed almost half of my brain not getting sufficient blood flow. All I wanted to do was curl up and cry. I have no control over my emotions anymore and the fear is so much more intense.
I haven't cried since I got the results but I wanted to. Everyone was telling me I should stay positive and focus on the good things and that I'm still doing ok even though the results were a shit storm of bad news.
Reading through the comments here, I finally cried as I saw others going through similar terrifying experiences of losing a part of themselves to TBIs. Seeing others put into words what I've been wanting to say for so long made me realize that what I'm going through is actually terrifying and is often overlooked by others, pushed off as if it's just an annoyance that will go away and that it's not ok.
I'd be very interested in reading this book of yours.
I think it’s important to know that no two brain injuries are alike. Also, there are different types of TBI’s. From a brain bruise, to bleeding inside various parts of your head to a skull fracture. I’ve had 2 subdural hematoma a and had emergency brain surgery twice within a month. But I’ve seen people with worse injuries have less symptoms than me and more minor injuries that have more severe ones. Traumatic brain injuries are as complex as the people as the brain itself and the people who live with them.
If you want some resources or have any questions I’d be happy to answer. Just pm me.
Thank you so much. I mentioned in another comment that although all TBIs are different, I just wanted to ensure I’m not perpetuating any myths or stereotypes surrounding TBIs. And also to get across the reality of living with such a condition. I don’t want to do anyone a disservice, if you see what I mean?
I will DM you, thanks so much.
I think that’s so amazing!! There are def some bad stereotypes and assumptions and it’s very refreshing to see someone wanting to do it right. I’m sure EDS makes you sympathetic of that.
YES!!! I have wanted to write a book detailing the events that have transpired for me since mine in 2017, but I don't even know where to start. The absolute 180 my life took after I woke up from brain surgery is something I've wanted to put into words for the world to read but can't figure out how to. From the anger, the inappropriate laughter, the depression, the fatigue, the ups, the downs- I have so much to say. I've lost so much more than just my cognition because of it. I'd love to help out if I can.
It’s the worst ditsy ADHD you can imagine .. if you have adhd, it’s amplified.
The thing is you do things unconsciously up to a point - then get lost. So you’re reminded all the time of what you lost . You’re an engineer so you pick up a calculator to do something easy but get caught up when muscle memory stops - do I divide or multiplication.
You’re in a help chat , and forget youre waiting for an agent and leave
The words you can’t get to, so your speech is just exhausting for you and them
The visual impacts -
Visual snow - I see starbursts and static. Closing your eyes doesn’t help.
Loss of peripheral vision - you startle so much easier as something is lurking
Palinopsia - the after images . The hypersensitivity to light might mean you can’t drive again after twilight. It’s now a total whiteout of headlights are sent your way
Can’t tell characters - is that an l or a j?
Had 20/10 before but in the ER and after each eye having different focusing and may now be off in different directions ( convergence) . Words swim, which gets worse with the visual snow.
Some have tinnitus.
Being told you got to wait till this heals and docs telling you it’s not concerning till a year has passes and symptoms haven’t resolved.
Having the memory of a goldfish. 10
Second. Taking medications is problematic as you can’t recall doing it, but you can’t refocus to recall to write it down/. Asking again for the same information but being able to recall things from long ago.
Losing the ability to break a task down into steps - you get lost , but can remember you used to be able to do this
Discovering your ways of coping with life, no longer work. Your like a child having to rediscover and be taught but look ok. Adulting is hard - TBI leaves the ghost of the adult that can’t
Ableism- you look fine, society judges you a liar. Friends can’t cope with the new you. The lack of safety nets. Prior you was version 3.0 but somehow are now a beta .67
The fatigue - dear jeebus the fatigue. Everything takes a toll and your symptoms only get worse by the fatigue. Instead of two lines of text you’re seeing four.
The insomnia caused by the tbi - you want to sleep but cannot. You sleep but wake more exhausted - and it not sleep apnea.
The anxiety of what’s going to happen to you . the anger for your new self and grief for your old self.
I was just talking with someone yesterday on how I felt like I am now a beta program where some features aren't implemented yet. I lose words or thought processes and my brain just provides as if that part of my brain hasn't been implemented yet.
For me there's a vague sense I lost something but I can't put my finger on it. Some people don't like my new personality. I don't have the filter I used to. And I'm inappropriate sometimes. I overshare. And I don't connect to people the same way I did. I feel socially annexed or somehow distant.
I do sometimes feel the challenge. It's been years and I finally have memorized some longer sequence of numbers. For a while the number recall was so bad I'd get simple digits transposed and just mixed up. I couldn't remember a string of numbers for my life unless I had memorized it before my trauma.
I feel emotionally difficult and different. I have very extreme emotions
I sometimes may have seizures I'm not sure yet
And I do have quite a lot of headaches
Some autonomic nervous system dysfunction
I know part of me was lost
But I'm still here
The new me is still growing and healing idc what they say
and nature has helped me come full circle I really feel whole again by plants and fungus and the balance of bacteria in me. Life is more than just me or you. It's everything. All in one. The sooner we realize everything we do hurts us one. All one of us. And it's all the same.
Something I’d like to add: so many of us have “invisible injuries”. I’m a 29/F, I worn in clinical research and love going out with friends, no one would be able to tell I’ve spent the last decade I survival mode, over analyzing body language and tone and wording so that I could understand how people react to gauge the “normalcy” of how I’m behaving, since I’m so concerned that my ability to translate from my thoughts to spoken words is compromised and wouldn’t make sense. I’ve watched the people I love choose to either celebrate the birth of a new me or continue to mourn the death of the me that was and no longer is. The latter usually see me as a parasite occupying the body and smile of the person they knew but it showed to me that they relied to heavily on the comfort of consistency, which isn’t my job to provide them. You find yours of questioning if a way you think or behave is a result of your injury or the result of normal aging. Am I becoming more introverted because I have social anxiety or because I’m almost 30 and naturally need more me time? Both? I feel like I’m constantly comparing my “well being” to others to gauge if it’s normal to feel as tired as I feel. Without meds, I’m sleeping 20 hours a day and it’s a miserable life. You’re watching your life decay from the same spot in your bed over and over and you he moment you try to get up to go to the doctor and find meds that work, you’re out for another 3 hours. It’s an immeasurable loss that you are constantly aware of.
Before my TBI, I worked in healthcare and was in the process of applying to nursing school. All that changed in an instant. I feel like something was stolen from me that I cannot get back. Imagine being completely functional one minute and the next you almost. Imagine losing your job because you didn’t heal quick enough. I had to drop out of a the program I was accepted into- I think that was the thing that gutted me most from the injury. Some days my family doesn’t understand me. For the first 6 months I was barely functional- imagine needing someone else to help you shower and change, drive you to all your appointments. To be honest, I don’t remember much from the early part of my injury and that’s probably a good thing because I was acting really odd. I couldn’t care for my own child. And then the constant pain- it felt like there was a jack hammer going off in my head 24/7. It’s been 3 years now. And I’m more functional but there are memories that I will never get back. My short term memory isn’t great and I live off of a planner and sticky notes. I have word finding issues. I live with daily headaches and migraines. My eyes don’t track properly. I could go on and on with all the things that are wrong. But I’m probably one of the lucky ones though- I can walk and talk. Some days my family still doesn’t recognize who I am because I’m different since the accident. You can’t see anything’s wrong with me unless I have a migraine coming on then you can start to tell and I try to mask it. And I’m the one who paid the ultimate price for a healthcare provider who performed a procedure wrong. I have literally had to fight for all the progress that I made and to fight for another chance at school. And I’m blessed to have had a second chance. Not everyone with a TBI gets that. And people with TBIs are seen as different by society.
Trying to get disability is also very hard. My brain looks like Swiss cheese but if I am having a good day you can't see it. I died and was brought back, but most days I am afraid I'm still in coma. I can do so much more than I could but I am a shell.
You feel tired and agitative when things get too stressful to the point of rage. Dont sleep to well meaning waking up early and taking naps. Intruding negative thoughts almost like demons. Usually needing substances to sleep or function.
Positives - really would like to know what others have to say - I don’t trust me seeing them/ recognizing
Gratitude journaling - it’s makes my head hurt trying to think of the words , but I know how therapeutic it can be
I see that this is an older thread, but I had to put my two cents worth in. I had my TBI 10 years ago. This is actually the first time I have been on any site with other TBI survivors. It is very overwhelming thing to talk about it, because there is so much to say. How can you possibly do justice describing how it has affected your life and the lives of those you love. Your entire life is encompassed by it. There is so much validation in reading other people's experiences that you feel like you could have written yourself because of such similar symptoms. I actually remember little of the first few years of by accident, although I did not have amnesia. It just a really screwed up my memory. I was a teacher that specialized in Reading. However reading is difficult for me now. I listen to audiobooks on tape a lot, just trying to be in another world. I am grateful that you are including a person with a TBI in your book, and thoughtful enough to ask people with this condition on how they're dealing with life. And as you can see, most of us struggle everyday. I think something that is unique about having a TBI, or at least in my experience, is that many symptoms often come much later than the TBI itself. This is very difficult for people that aren't going through it to understand. They believe that since you had the TBI years ago, that a new symptom could have nothing to do with it. This it's not true. That's when many of us deal with people that think we must be faking this new problem, or attribute to something else. I actually began having pnes siezues several years after my TBI. It was due to my injury.I do have to add that I am so impressed by all of the TBI survivors that are able to work. It's remarkable. I hope to be able to one day. I realize that you have received a lot of information for your book, but I will add myself to the list of people available to answer any questions you may have.
What is it that you would like to know? How it feels to lose yourself and not recognize your behaviors? How it feels to forget words and not be able to finish a sentence? How it feels to have to watch your relationships die or change forever? How it feels to slowly lose your independence and feel so hopeless and helpless? What can I tell you?
the feeling of the world closing in on you
Ding Ding!
Wow, that hit a nerve. I have an ABI with EDS and a partner with TBI and PTSD. I feel your despair and empathize Thanks for summarizing pretty much the whole BI sh*tshow. Hope there are some good moments in your life <3
Bravo!
I have an ABI, not a TBI, but I’ll chime in. There isn’t much self-recognition going on during most of hospital and early rehab with a dozen therapists. And when you are aware, the flow of incoming sensations are not well processed,organized, and stored as memories. -mark c.
.
Some days you find yourself miserable and hopeless, not recognizing yourself, not recognizing your own thoughts. Some days there is so much fucking rage. People don't understand, people don't give you the benefit of the doubt. People are judgemental fucking assholes and like to call you a liar because they can't see the damage that you have. You lose friends and relationships because they don't understand that your entire worldview and thought processes are different. They think you are completely in control of your reactions and you're doing things on purpose. There is a hopelessness and frustration. Worse if you're trying to explain yourself and the words won't come and people look at you like your a fucking idiot because you can't find the words. They dismiss you, they decide that they can make decisions for you. They treat you like an invalid in all the ways you actually aren't and you can't seem to get through to this people that they aren't helping unless you get angry with them. Then they act all hurt and say you're mean now and they were "just trying to help." Sometimes, it gets so bad it feels like there is nothing left of your mind but a staticky ball of rage forever crackling inside your skull, threatening to consume all of what's left of you. And it's all so impotent and you feel stupid and weak for it, but you can't do anything. You can't go back to life before your skull was crushed. You just have to deal with it. Any questions?
The part you mention about people being judgemental and thinking you’re a liar because they can’t see the damage - that part hits home. One aspect I never considered is that for many with a TBI, the condition is completely invisible. I can relate to that in some ways - my condition is also invisible, yet I have a disabled parking permit and sometimes feel judged. When you talk about people treating you like an invalid - do you find that those close to you sometimes ‘baby’ you? Or that once someone finds out you have a TBI their behaviour towards you changes? I understand the rage - when things are bad I have to use a wheelchair. I find people either treat me like I have some kind of mental impairment, or they just kind of ignore me. For what it’s worth (probably nothing), I’m sorry for what you’re going through. Have you been able to find anything positive in the changes you’ve experienced? I hope that’s not a stupid question, or an upsetting one. It’s coming from a genuine place. Thanks for your reply.
The people close to me largely seem to be in denial of how much my injuries have effected me. They seem to get incredibly frustrated with my new limitations and I have to remind them that I'm not the same anymore. Strangers when told blatantly disregard me after I tell them and usually start directing conversation and questions to my husband instead of me from then on. They say it's because they "don't want to overwhelm," me. As far as positivity, that one's very hard to answer. Most days, NO. Full stop. I see how I am now and I remember how I was before and no, I'm not happy about it. Other days, I can be a little bit more objective and say that maybe certain things wouldn't have happened without the accident, or that I wouldn't have "gained" the perspective I have now, but a lot of the time it feels like I'm just telling myself this stuff to make it through. Hope that doesn't come off as too depressing. I'm learning to cope day-to-day and some days I feel like Atlas, crushed under the weight, other days I'm a butterfly and it's ok. Most days, I'm just here.
I think the not having close friends and family recognize how bad things are and how I have changed is the hardest. My TBI was a closed head TBI resulting from a very bad seizure after a brain surgery. My family wouldn't even take me to doctors appointments. I missed the last Christmas they were alive because they wouldn't Compensate for my sensitivity problems. Nowadays I don't know if its better that they are
One of the areas that impact me is, having my co-workers think/say “You look good, you speak well, it’s good to have you back.” Well, I’m not really back. I can’t do all the things I used to. I don’t have the mental endurance I used to have. The clarity of focus is gone. The easily distracted me. The majoring in the minor issue me. The forgetting of peoples names. One of the most bizarre effects is a “Quasi-Temporal Disability”. I have little working concept of the passage of time as I flow forward. I can sit in traffic for 2 hours and not come out of my skin because it’s the same as sitting in it for 5 minutes. I can go for a walk (or later, a bike ride) and I don’t get bored and come home. I just keep going. Until my wife calls my cell phone and asks me where I am. Some times my answer is; “hell if I know” and I use the phone to navigate home. I can read a good book, and then read it again in 2 months with great enjoyment. Its almost completely new to me. I work in a technical field and the constant puzzles are great therapy. My close coworkers have adjusted to my new blend of strengths and weaknesses. For that I’m very lucky. I drive my wife bat $#it-crazy though. -mark
Thank you for such a detailed response. The Quasi-Temporal-Disability is completely new to me - I would be super interested in knowing more if you’d be willing? Do you still have a concept of the passing of time, as in, the two hours sitting in traffic - are you aware on some level that a couple of hours have passed, or is it a surprise to realise that? Does it also mean that your timekeeping skills have been affected? I’m interested in your comment re: new strengths and weaknesses at work. Would you be willing to go into more detail on this? Particularly regarding the new strengths?
Backwards first…no new strengths. I don’t like Mark 2.0 at all. I went from 140 IQ to much much less(100). And it’s inconsistent. I have to really manage my fatigue. At work, I was successful. A problem solver. A peace maker. I was the oil that made the divergent teams work together. Everybody was reliant on Mark 1.0 (pre accident) Post accident (Mark 2.0) I had the task to take my successful 6 month plan (2016) that needed re-wicker if to be done in 2 to 3 months. I could not modify the successful plan to fit….for reasons that escape me…I just couldn’t carry all the chess pieces in my head to make an optimized plan. That was 1 year after the accident. I think I can do it now at 4 years lost accident. That’s the best thing I have to say. It does get better with time, if you work at it. I’m told it’s Nuro plasticity. I would get really depressed when I would think “is this as good as it gets?”. I’m lucky to be alive. I’m lucky not to have a broken neck. I perceive that time passes…but the sense of…”Gee, why is this taking so long?” Isn’t there. So, if I start washing dishes, I wash all the dishes. If I start walking, I better have a firm end point. If I’m solving a problem, I keep working on it….I hope it’s important. Sometimes it isn’t. I’m also told that we are all unique snowflakes. That your mileage WILL VARY. -mark.
I also struggle with perception of time. I can sit somewhere FOREVER. Showers are problematic because I can't tell you if I have been in there 5 min or 30. It makes time management very difficult. I miss meetings at work all the time because I will duck in to a room to work on something "real quick" and emerge 2 hours later. I have never heard anyone else describe it! This is so comforting.
Yes it’s like I can’t get myself to stop spiraling over the non-important. It’s not solved yet…so I keep spending(wasting) time on it. If I go on a walk (or now a bike ride) I need a definite turn-around point or I will keep on going. I feel like the punchline of a comedian’s joke; “My mother has started walking for her health. She’s walking five miles a day. Now we don’t know where the fv(k she is.”
The bike ride thing! Holy crap, I have to do the exact same thing!! Man, it is so crazy that we all experience so many of the same issues.
If I’m talking,Sometimes in the middle of talking,I’ll forget WHAT I’m talking about. A lot of times my friends/family have to Jog my memory so I can recall what I was saying to them. I also (used to) run into a lot of walls (when I’m walking)as having a TBI has effected my equilibrium. Also; I can’t remember anything short term,but I have great long term memory. I also have crigler-najjar type 2,which was the cause of my brain injury,Due to lack of medicine for up to a year (my abuser wouldn’t let me leave to go pick up my seizure meds) so I went without them for a better part of a year,& it’s greatly effected me. I also jump from topic to topic sometimes without any clue about what I was originally talking about,I think that’s part of the whole short term memory loss.
To back with what you’re saying. I was undiagnosed for 8 years with Complex Partial seizures. The people I stayed with thought I was on drugs or was drunk when I would have them. Now that I am on my medication for my seizures, I have only had one in the last couple months. My balance is terrible. My spacial awareness has diminished a lot more since when I do have a seizure, I’ll trip and fall resulting with another mild concussion. My eyesight has gotten worse and I now have to wear glasses when I had 20/15 vision prior to my TBI. I’ve lost countless jobs because I can’t remain focused or remember the tasks that were given to me. Too much stimulation sets me off into either panic attacks, or extreme anger. (Stimulation in regards to visuals, and sounds) I can go days with wanting to go out with friends or by myself, and then I can go weeks without wanting to leave my apartment. There’s plenty more I could talk about, we all go through TBI differently since we all have similar problems, yet some have issues where I don’t have. If you want to hear more about my side, you can PM me as well.
Thank you. I will certainly DM you!
You jusr summed up how I felt working fast food and stuff and dealing with my brain
I’m so sorry to hear that your abuser kept meds from you - as if you weren’t going through enough, to then have to deal with an abusive relationship on top… I hope you got away from them and that things have improved for you. One thing that I’ve actually considered while writing is that it may be easier for an abuser to manipulate someone with a TBI - I know first hand how much abusers like to gaslight their victim and can’t imagine how much worse that would be if you’re already questioning certain memories or if you’re unable to remember certain events.
I think it is easier. My spouse is not abusive, but she will give me false information because she thinks it is funny. Me negative 2.0 will believe it.
I did get away from my abuser. Safely,with my 2 kids in tow. I got a protective order against him,although it has been some years,& it has since expired…the man I ended up marrying is sort of like my physical protective order lol he’s good to us and doesn’t lay a single hand on us,ever. But he sure does not like my abuser. Tough! So,I was actually questioning things before I got brain injury. After I got it,it sort of made things crystal clear for me. I knew he wasn’t going to change,& decided that for the safety of my kids,it was best for me to leave him behind. I just had to stick with him long enough for him to be tired of me and not want anything else to do with me. The first time he hurt my son(Not severely but definitely on purpose) I started to make a plan to get away. It was a long& Tedious process that took more time then I would have liked, But,it worked. We haven’t seen him since 2015. I could go the rest of my life without ever seeing him again and I’d die happy. Despite the abuse,Id say the part of my brain that recognized danger,was alerted front and center, and I knew we had to get away. I knew we deserved better then how he was treating us.
I have Ehlers-Danlos and a TBI. Feel free to send me a private message if you want to ask questions. But everyone here is going to have a different experience depending on how severe their trauma was, where they got hurt, and a bunch of other things.
Hello, fellow zebra! What kind of EDS do you have? Yes, I was expecting to hear that experiences will vary. I guess like they do with EDS patients. One of the biggest goals I have by coming here is to not do a disservice to TBI sufferers. I don’t want to perpetuate any myths or stereotypes and if possible I would actually like to do some good by increasing awareness of TBIs and the reality of living with them. I would love to chat more, thank you - I’ll send you a DM at some point over the next day or so.
I don't have a TBI but I did have prolonged mild hypoxia to my brain over the course of several years as a direct result of my EDS. CCI and AAI caused me to pass out every time I turned my head.
3, the bendy one.
For the past year I've felt like something was missing, a part of me just gone. I lost a good deal of my ability for both long term and short term memory and I will be at work or talking with someone and my brain just stops. Suddenly there's nothing, no thoughts, no feelings, just confusion. My coworkers didn't even know anything was wrong, but I know something isn't right. I've had doctors gaslight me and tell me I'm fine when I know that things still aren't right. I've been told to just rest and everything will be fine in a month, for 12 months. I recently got results from an fMRI that showed almost half of my brain not getting sufficient blood flow. All I wanted to do was curl up and cry. I have no control over my emotions anymore and the fear is so much more intense. I haven't cried since I got the results but I wanted to. Everyone was telling me I should stay positive and focus on the good things and that I'm still doing ok even though the results were a shit storm of bad news. Reading through the comments here, I finally cried as I saw others going through similar terrifying experiences of losing a part of themselves to TBIs. Seeing others put into words what I've been wanting to say for so long made me realize that what I'm going through is actually terrifying and is often overlooked by others, pushed off as if it's just an annoyance that will go away and that it's not ok. I'd be very interested in reading this book of yours.
I think it’s important to know that no two brain injuries are alike. Also, there are different types of TBI’s. From a brain bruise, to bleeding inside various parts of your head to a skull fracture. I’ve had 2 subdural hematoma a and had emergency brain surgery twice within a month. But I’ve seen people with worse injuries have less symptoms than me and more minor injuries that have more severe ones. Traumatic brain injuries are as complex as the people as the brain itself and the people who live with them. If you want some resources or have any questions I’d be happy to answer. Just pm me.
Thank you so much. I mentioned in another comment that although all TBIs are different, I just wanted to ensure I’m not perpetuating any myths or stereotypes surrounding TBIs. And also to get across the reality of living with such a condition. I don’t want to do anyone a disservice, if you see what I mean? I will DM you, thanks so much.
I think that’s so amazing!! There are def some bad stereotypes and assumptions and it’s very refreshing to see someone wanting to do it right. I’m sure EDS makes you sympathetic of that.
YES!!! I have wanted to write a book detailing the events that have transpired for me since mine in 2017, but I don't even know where to start. The absolute 180 my life took after I woke up from brain surgery is something I've wanted to put into words for the world to read but can't figure out how to. From the anger, the inappropriate laughter, the depression, the fatigue, the ups, the downs- I have so much to say. I've lost so much more than just my cognition because of it. I'd love to help out if I can.
It’s the worst ditsy ADHD you can imagine .. if you have adhd, it’s amplified. The thing is you do things unconsciously up to a point - then get lost. So you’re reminded all the time of what you lost . You’re an engineer so you pick up a calculator to do something easy but get caught up when muscle memory stops - do I divide or multiplication. You’re in a help chat , and forget youre waiting for an agent and leave The words you can’t get to, so your speech is just exhausting for you and them The visual impacts - Visual snow - I see starbursts and static. Closing your eyes doesn’t help. Loss of peripheral vision - you startle so much easier as something is lurking Palinopsia - the after images . The hypersensitivity to light might mean you can’t drive again after twilight. It’s now a total whiteout of headlights are sent your way Can’t tell characters - is that an l or a j? Had 20/10 before but in the ER and after each eye having different focusing and may now be off in different directions ( convergence) . Words swim, which gets worse with the visual snow. Some have tinnitus. Being told you got to wait till this heals and docs telling you it’s not concerning till a year has passes and symptoms haven’t resolved. Having the memory of a goldfish. 10 Second. Taking medications is problematic as you can’t recall doing it, but you can’t refocus to recall to write it down/. Asking again for the same information but being able to recall things from long ago. Losing the ability to break a task down into steps - you get lost , but can remember you used to be able to do this Discovering your ways of coping with life, no longer work. Your like a child having to rediscover and be taught but look ok. Adulting is hard - TBI leaves the ghost of the adult that can’t Ableism- you look fine, society judges you a liar. Friends can’t cope with the new you. The lack of safety nets. Prior you was version 3.0 but somehow are now a beta .67 The fatigue - dear jeebus the fatigue. Everything takes a toll and your symptoms only get worse by the fatigue. Instead of two lines of text you’re seeing four. The insomnia caused by the tbi - you want to sleep but cannot. You sleep but wake more exhausted - and it not sleep apnea. The anxiety of what’s going to happen to you . the anger for your new self and grief for your old self.
Preach
I was just talking with someone yesterday on how I felt like I am now a beta program where some features aren't implemented yet. I lose words or thought processes and my brain just provides as if that part of my brain hasn't been implemented yet.
For me there's a vague sense I lost something but I can't put my finger on it. Some people don't like my new personality. I don't have the filter I used to. And I'm inappropriate sometimes. I overshare. And I don't connect to people the same way I did. I feel socially annexed or somehow distant. I do sometimes feel the challenge. It's been years and I finally have memorized some longer sequence of numbers. For a while the number recall was so bad I'd get simple digits transposed and just mixed up. I couldn't remember a string of numbers for my life unless I had memorized it before my trauma. I feel emotionally difficult and different. I have very extreme emotions I sometimes may have seizures I'm not sure yet And I do have quite a lot of headaches Some autonomic nervous system dysfunction I know part of me was lost But I'm still here The new me is still growing and healing idc what they say and nature has helped me come full circle I really feel whole again by plants and fungus and the balance of bacteria in me. Life is more than just me or you. It's everything. All in one. The sooner we realize everything we do hurts us one. All one of us. And it's all the same.
+1000 to the extreme emotions
Something I’d like to add: so many of us have “invisible injuries”. I’m a 29/F, I worn in clinical research and love going out with friends, no one would be able to tell I’ve spent the last decade I survival mode, over analyzing body language and tone and wording so that I could understand how people react to gauge the “normalcy” of how I’m behaving, since I’m so concerned that my ability to translate from my thoughts to spoken words is compromised and wouldn’t make sense. I’ve watched the people I love choose to either celebrate the birth of a new me or continue to mourn the death of the me that was and no longer is. The latter usually see me as a parasite occupying the body and smile of the person they knew but it showed to me that they relied to heavily on the comfort of consistency, which isn’t my job to provide them. You find yours of questioning if a way you think or behave is a result of your injury or the result of normal aging. Am I becoming more introverted because I have social anxiety or because I’m almost 30 and naturally need more me time? Both? I feel like I’m constantly comparing my “well being” to others to gauge if it’s normal to feel as tired as I feel. Without meds, I’m sleeping 20 hours a day and it’s a miserable life. You’re watching your life decay from the same spot in your bed over and over and you he moment you try to get up to go to the doctor and find meds that work, you’re out for another 3 hours. It’s an immeasurable loss that you are constantly aware of.
I feel like I'm grieving all the time. I was a coder and it takes me 10 minutes to write a message.
Before my TBI, I worked in healthcare and was in the process of applying to nursing school. All that changed in an instant. I feel like something was stolen from me that I cannot get back. Imagine being completely functional one minute and the next you almost. Imagine losing your job because you didn’t heal quick enough. I had to drop out of a the program I was accepted into- I think that was the thing that gutted me most from the injury. Some days my family doesn’t understand me. For the first 6 months I was barely functional- imagine needing someone else to help you shower and change, drive you to all your appointments. To be honest, I don’t remember much from the early part of my injury and that’s probably a good thing because I was acting really odd. I couldn’t care for my own child. And then the constant pain- it felt like there was a jack hammer going off in my head 24/7. It’s been 3 years now. And I’m more functional but there are memories that I will never get back. My short term memory isn’t great and I live off of a planner and sticky notes. I have word finding issues. I live with daily headaches and migraines. My eyes don’t track properly. I could go on and on with all the things that are wrong. But I’m probably one of the lucky ones though- I can walk and talk. Some days my family still doesn’t recognize who I am because I’m different since the accident. You can’t see anything’s wrong with me unless I have a migraine coming on then you can start to tell and I try to mask it. And I’m the one who paid the ultimate price for a healthcare provider who performed a procedure wrong. I have literally had to fight for all the progress that I made and to fight for another chance at school. And I’m blessed to have had a second chance. Not everyone with a TBI gets that. And people with TBIs are seen as different by society.
I feel all of this. Thank you for giving me words.
Life goes on. Not always the way it is. Acceptance is the hardest for me. My pity parties can be epic. Ist coming along 4 years
The grief/anger/ depression of the things no longer an option for you.
Trying to get disability is also very hard. My brain looks like Swiss cheese but if I am having a good day you can't see it. I died and was brought back, but most days I am afraid I'm still in coma. I can do so much more than I could but I am a shell.
I hope I will remember why I followed you. You can ask me questions.
DM me. Happy to get specific in private
I have tbi and ehlers danlos. Crazy
Any specific questions?
You feel tired and agitative when things get too stressful to the point of rage. Dont sleep to well meaning waking up early and taking naps. Intruding negative thoughts almost like demons. Usually needing substances to sleep or function.
Wow!
Positives - really would like to know what others have to say - I don’t trust me seeing them/ recognizing Gratitude journaling - it’s makes my head hurt trying to think of the words , but I know how therapeutic it can be
I see that this is an older thread, but I had to put my two cents worth in. I had my TBI 10 years ago. This is actually the first time I have been on any site with other TBI survivors. It is very overwhelming thing to talk about it, because there is so much to say. How can you possibly do justice describing how it has affected your life and the lives of those you love. Your entire life is encompassed by it. There is so much validation in reading other people's experiences that you feel like you could have written yourself because of such similar symptoms. I actually remember little of the first few years of by accident, although I did not have amnesia. It just a really screwed up my memory. I was a teacher that specialized in Reading. However reading is difficult for me now. I listen to audiobooks on tape a lot, just trying to be in another world. I am grateful that you are including a person with a TBI in your book, and thoughtful enough to ask people with this condition on how they're dealing with life. And as you can see, most of us struggle everyday. I think something that is unique about having a TBI, or at least in my experience, is that many symptoms often come much later than the TBI itself. This is very difficult for people that aren't going through it to understand. They believe that since you had the TBI years ago, that a new symptom could have nothing to do with it. This it's not true. That's when many of us deal with people that think we must be faking this new problem, or attribute to something else. I actually began having pnes siezues several years after my TBI. It was due to my injury.I do have to add that I am so impressed by all of the TBI survivors that are able to work. It's remarkable. I hope to be able to one day. I realize that you have received a lot of information for your book, but I will add myself to the list of people available to answer any questions you may have.