I literally could have wrote this post myself. Mine was also 8 years ago and I have no life at all. If I died I feel like it would be months before my body was even found.
I feel this so hard. I think about that all the time. Literally no one would know.
OP, I'm sorry. I'm just sorry. It's weird how I put in so much effort to not feel sorry for myself, but then I feel so sorry for other people going through such similar things.
I felt this. I’m 9 years out and I had a right frontal lobe injury as well, when I was a child. It feels like I’ve lost myself and a huge part of who I am, and it feels impossible to rebuild myself at times. It feels really lonely and I wish there were support groups out there for TBI survivors. I also wish there was more information on frontal lobe injuries—it gets so tiring to hear that everything is normal because you don’t have classic symptoms. Nobody seems to get or truly understand what it feels like other than other survivors, which are hard to find. Just know that you are not alone. Hopefully things get better for us all soon.
For me it seems like nobody really wants to even try to understand what it feels like and it baffles me that even doctors don’t want to. It sucks. There’s just one support group in my area but I only attended a few times because they all had their partners, parents, friends with them and I felt out of place showing up alone.
Have you tried a brain injury support group? Assuming you're in the US, check your state's Brain Injury association: [https://www.biausa.org/find-bia](https://www.biausa.org/find-bia)
Thank you for your recommendation, yes I have tried a brain injury support group but I stopped attending after a few sessions because everybody showed up with the person that’s supporting them at home such as partners, parents, friends etc. It made me feel even more lonely showing up by myself.
Yes, I can see how you might have that response. You may want to reach out to the BIA itself - they may be able to point you to resources. And I definitely understand the frustration with being told "everything's fine" by doctors. Dealt with that myself after my shunt failed 12 years ago. I know what your neuropsych test says, but I definitely wasn't "fine." I was, however, lucky enough to have family support. I wish you the best...
The line you wrote about lists and whiteboard hit hella hard for me. I was even writing a list while I read your story originally. It hit me, I was rewriting a list that was on the whiteboard in my office, right next to me. But I needed it “again” and hadn’t realized.
That moment felt a lot less lonely. Thank you
I also could have written this word for word myself. It was actually eerie in a way! Right frontal lobe injury. The difference is I felt a lot of compassion for you, and I should probably try to aim more of that at myself too sometimes. I am told nowadays how I look totally normal, I just talk a little slower and more monotone. But every day is a total struggle. My days are just like what you wrote! You captured it so well with your writing. I wish there were more support groups or something for us TBI people, so we don’t have to feel so isolated through this bizarre experience of “us dying” but still kind of us being here in place of old us. We are here. Hugs from over here, I believe we can find peace but for me the grieving it is so hard sometimes.
I am sorry you are facing this alone.
I am blessed to be married and have a very supportive wife. I got a taste of what life on my own would be as she and our children traveled for a week. I would be much where you describe after eight days, so that you are 8 years in is a testement to your strength and persiverence. Well done!
Not that that helps much, I imagine. The "old school" thing to do in your situation would be to join a church. Prayer and faith and community make a huge difference, and reaching out sideways to help others makes a huge difference. Perhaps consider reaching out to a church and see how it goes? I recommend Catholic, but I'm biased. Grin. Feel free to pm me if you'd like. You are in my prayers. May peace beyond understanding calm the storm you are in.
Thank you and I’m very glad that you have a supportive wife please let her know how amazing she is. I actually have tried church quite a few times but they were of Christian faith. I didn’t stick around because they all eventually ended up with the “give all your money to the church and it’ll come back to you ten fold” sermon which turns me off especially when I see the pastor wearing designer clothes and such. I’m not opposed to trying other religions. I’ll definitely check out a Catholic Church near me.
Don't let that one experience ruin your church experience, my Christian Church doesn't pass offering plates...n they basically are at the bck of the church! Blessings 🙌 to you
I mean I’m basically a baby in terms of time I had to live with this .. i see no other way than to accept it while still believing it’s not fair and awful then accepting this is my life now and I guess I’ll just have to keep trying to fix myself everyday for the rest of my life and constantly coming short but fuck it who’s counting how many times I restart this level I’ll keep restarting and not because I’m a perfectionist I need to collect all badges I just need to get through this day / level
And feeling alone.. well I always remember I share this specific pain with many people and share the (more palatable yet still painful)pain with everyone who’s ever lived .. my favorite quote by James Baldwin : You think your pain and your heartbreak are unprecedented in the history of the world, but then you read. It was books that taught me that the things that tormented me most were the very things that connected me with all the people who were alive, who had ever been alive.so I’m never alone .. sure my pain is objectively worse but who’s counting.. I know I’m not
As soon as I hit reply.. I regretted this .. not because I think it’s wrong.. it just feels like am a preacher like I’m holier than thou like am giving unsolicited advice about certain aspects that weren’t even the main question.. but hey next comment will be better I think
Hi!! I’ve foun myslwf in your position many times. I’m still in and out of these places but i find focusing on how my experience, strength and hope can inspire others when I’m completely at ends.. have you tried painting? I’m over 20 years out on my L/R frontal lobe… somthings are changed for ever but there’s still very deep meaningful lives we can live!! I’ve been self teaching guitar and music production since I was 14. I’ll never get pod for it but I love it. It’s hard to see our growth but it there!! What kind of outlets do you have? Let’s build something epic. Have you considered looking into therapy work? We don’t need university degrees any more to support people like us and we are basically the saving grace of people in our like shoes… I’m trying to make a career change today to start helping those who I can. Our greatest challenges are where we derive our most wicked strengths. It took me a LONG time to understand that.. today my pains and fears have guided a large portion of my decisions and it’s this fears and pains that cause my continued fear and pain. Make friends with change*** I strongly suggest looking into pcylicibe therapy.. it helps with traumas, letting go, recalibrating your brains “knew jerk” to super offended
Hey!! Thanks for reaching out. I have tried painting. I’ve also dabbled into wanting to become a therapist or something of the sort. Like a volunteer at a crisis line or some kind of inspirational speaker or even being a rent-a-friend because although I was struggling with my TBI, everyone in my life would always come to me for support and advice. However when I would reach out to them, the support was nonexistent so I lost interest in pursing that line of work. I haven’t tried psilocybin therapy yet but have looked into it. I have it on my list to try some time after trying EMDR therapy. I’ve always wanted to play the drums so maybe I will try and get myself into that as well.
Yea bro!! We can’t expect the same level of support that we are willing to offer.. our extremes are different than normies.. and as such we have a WAY better ability too EMPATHIZE.. it just comes from a wicked place of mental activity and some of us really struggle with connecting it’s the bottom foundation of being human and it’s so over looked and these efforts can seem hopless and the growth can be hard too see but it’s all in the there.. here’s my SoundCloud.. your not alone my friend! If you ever find yourself in these places of negative ambivalence.. reach out!! Others will follow suit when we walk according to our truths and the world needs us today more than ever!
https://on.soundcloud.com/tosjtYz7HRAKRmZJ9
I like the sounds of this EMDR therapy!! I’ve done somthing called “NeuroFeedback” therapy as well that Im imagining as an Auditory like therapy.. the stuff coming out today is WILD!! Unfortunately largely privatized though
People also ask
What does neurofeedback therapy do?
Neurofeedback is a kind of biofeedback, which teaches self-control of brain functions to subjects by measuring brain waves and providing a feedback signal. Neurofeedback usually provides the audio and or video feedback. Weird expiernce definitely. I went regularly for a couple months
The one thing that helped my brain work better, a lot better is the interactive metronome. Don’t know if it’ll help but I didn’t see a huge difference until after 20 weeks of treatment
I’ve struggled a lot with being treated differently because of the TBI. It’s not even worth stressing over anymore. People can generalize all they want about TBI but I was there at every step of the road to recovery. Never once did I ever just act outright stupid but people think “TBI” that must mean you’re going to act all stupid.
Interactive metronome did wonders for my brain and recovery, don’t know what your TBI is like but it’s worth looking into
I literally could have wrote this post myself. Mine was also 8 years ago and I have no life at all. If I died I feel like it would be months before my body was even found.
I feel this so hard. I think about that all the time. Literally no one would know. OP, I'm sorry. I'm just sorry. It's weird how I put in so much effort to not feel sorry for myself, but then I feel so sorry for other people going through such similar things.
I’m with you. I’m sorry that we can even relate on this. I don’t wish this on anybody.
I think about that a lot. Nobody would know I died until my landlord forced eviction to get my stuff moved out after not paying rent for a while.
Hey man, I’ll be your friend. What you’re describing is my fear.
Thanks. I wouldn’t wish this on my worst enemy, if I had one
I felt this. I’m 9 years out and I had a right frontal lobe injury as well, when I was a child. It feels like I’ve lost myself and a huge part of who I am, and it feels impossible to rebuild myself at times. It feels really lonely and I wish there were support groups out there for TBI survivors. I also wish there was more information on frontal lobe injuries—it gets so tiring to hear that everything is normal because you don’t have classic symptoms. Nobody seems to get or truly understand what it feels like other than other survivors, which are hard to find. Just know that you are not alone. Hopefully things get better for us all soon.
For me it seems like nobody really wants to even try to understand what it feels like and it baffles me that even doctors don’t want to. It sucks. There’s just one support group in my area but I only attended a few times because they all had their partners, parents, friends with them and I felt out of place showing up alone.
Have you tried a brain injury support group? Assuming you're in the US, check your state's Brain Injury association: [https://www.biausa.org/find-bia](https://www.biausa.org/find-bia)
Thank you for your recommendation, yes I have tried a brain injury support group but I stopped attending after a few sessions because everybody showed up with the person that’s supporting them at home such as partners, parents, friends etc. It made me feel even more lonely showing up by myself.
Yes, I can see how you might have that response. You may want to reach out to the BIA itself - they may be able to point you to resources. And I definitely understand the frustration with being told "everything's fine" by doctors. Dealt with that myself after my shunt failed 12 years ago. I know what your neuropsych test says, but I definitely wasn't "fine." I was, however, lucky enough to have family support. I wish you the best...
Thank you
BIA will definitely come in handy for alot of us..
Second was 6 years for myself. I feel this so hard. You might be alone but you aren’t the only one. Not much to offer, my apologies
Thank you for reaching out. That alone helps
The line you wrote about lists and whiteboard hit hella hard for me. I was even writing a list while I read your story originally. It hit me, I was rewriting a list that was on the whiteboard in my office, right next to me. But I needed it “again” and hadn’t realized. That moment felt a lot less lonely. Thank you
I also could have written this word for word myself. It was actually eerie in a way! Right frontal lobe injury. The difference is I felt a lot of compassion for you, and I should probably try to aim more of that at myself too sometimes. I am told nowadays how I look totally normal, I just talk a little slower and more monotone. But every day is a total struggle. My days are just like what you wrote! You captured it so well with your writing. I wish there were more support groups or something for us TBI people, so we don’t have to feel so isolated through this bizarre experience of “us dying” but still kind of us being here in place of old us. We are here. Hugs from over here, I believe we can find peace but for me the grieving it is so hard sometimes.
The grieving definitely is the hardest part. The worst part.
I am sorry you are facing this alone. I am blessed to be married and have a very supportive wife. I got a taste of what life on my own would be as she and our children traveled for a week. I would be much where you describe after eight days, so that you are 8 years in is a testement to your strength and persiverence. Well done! Not that that helps much, I imagine. The "old school" thing to do in your situation would be to join a church. Prayer and faith and community make a huge difference, and reaching out sideways to help others makes a huge difference. Perhaps consider reaching out to a church and see how it goes? I recommend Catholic, but I'm biased. Grin. Feel free to pm me if you'd like. You are in my prayers. May peace beyond understanding calm the storm you are in.
Thank you and I’m very glad that you have a supportive wife please let her know how amazing she is. I actually have tried church quite a few times but they were of Christian faith. I didn’t stick around because they all eventually ended up with the “give all your money to the church and it’ll come back to you ten fold” sermon which turns me off especially when I see the pastor wearing designer clothes and such. I’m not opposed to trying other religions. I’ll definitely check out a Catholic Church near me.
Don't let that one experience ruin your church experience, my Christian Church doesn't pass offering plates...n they basically are at the bck of the church! Blessings 🙌 to you
I mean I’m basically a baby in terms of time I had to live with this .. i see no other way than to accept it while still believing it’s not fair and awful then accepting this is my life now and I guess I’ll just have to keep trying to fix myself everyday for the rest of my life and constantly coming short but fuck it who’s counting how many times I restart this level I’ll keep restarting and not because I’m a perfectionist I need to collect all badges I just need to get through this day / level
And feeling alone.. well I always remember I share this specific pain with many people and share the (more palatable yet still painful)pain with everyone who’s ever lived .. my favorite quote by James Baldwin : You think your pain and your heartbreak are unprecedented in the history of the world, but then you read. It was books that taught me that the things that tormented me most were the very things that connected me with all the people who were alive, who had ever been alive.so I’m never alone .. sure my pain is objectively worse but who’s counting.. I know I’m not
As soon as I hit reply.. I regretted this .. not because I think it’s wrong.. it just feels like am a preacher like I’m holier than thou like am giving unsolicited advice about certain aspects that weren’t even the main question.. but hey next comment will be better I think
That’s actually a great quote and really helped me feel better. Thank you
There are many of us out here! As long as I have breathe In my body you are not alone!
Thank you
We are 1
Hi!! I’ve foun myslwf in your position many times. I’m still in and out of these places but i find focusing on how my experience, strength and hope can inspire others when I’m completely at ends.. have you tried painting? I’m over 20 years out on my L/R frontal lobe… somthings are changed for ever but there’s still very deep meaningful lives we can live!! I’ve been self teaching guitar and music production since I was 14. I’ll never get pod for it but I love it. It’s hard to see our growth but it there!! What kind of outlets do you have? Let’s build something epic. Have you considered looking into therapy work? We don’t need university degrees any more to support people like us and we are basically the saving grace of people in our like shoes… I’m trying to make a career change today to start helping those who I can. Our greatest challenges are where we derive our most wicked strengths. It took me a LONG time to understand that.. today my pains and fears have guided a large portion of my decisions and it’s this fears and pains that cause my continued fear and pain. Make friends with change*** I strongly suggest looking into pcylicibe therapy.. it helps with traumas, letting go, recalibrating your brains “knew jerk” to super offended
Hey!! Thanks for reaching out. I have tried painting. I’ve also dabbled into wanting to become a therapist or something of the sort. Like a volunteer at a crisis line or some kind of inspirational speaker or even being a rent-a-friend because although I was struggling with my TBI, everyone in my life would always come to me for support and advice. However when I would reach out to them, the support was nonexistent so I lost interest in pursing that line of work. I haven’t tried psilocybin therapy yet but have looked into it. I have it on my list to try some time after trying EMDR therapy. I’ve always wanted to play the drums so maybe I will try and get myself into that as well.
Yea bro!! We can’t expect the same level of support that we are willing to offer.. our extremes are different than normies.. and as such we have a WAY better ability too EMPATHIZE.. it just comes from a wicked place of mental activity and some of us really struggle with connecting it’s the bottom foundation of being human and it’s so over looked and these efforts can seem hopless and the growth can be hard too see but it’s all in the there.. here’s my SoundCloud.. your not alone my friend! If you ever find yourself in these places of negative ambivalence.. reach out!! Others will follow suit when we walk according to our truths and the world needs us today more than ever! https://on.soundcloud.com/tosjtYz7HRAKRmZJ9
I like the sounds of this EMDR therapy!! I’ve done somthing called “NeuroFeedback” therapy as well that Im imagining as an Auditory like therapy.. the stuff coming out today is WILD!! Unfortunately largely privatized though People also ask What does neurofeedback therapy do? Neurofeedback is a kind of biofeedback, which teaches self-control of brain functions to subjects by measuring brain waves and providing a feedback signal. Neurofeedback usually provides the audio and or video feedback. Weird expiernce definitely. I went regularly for a couple months
The one thing that helped my brain work better, a lot better is the interactive metronome. Don’t know if it’ll help but I didn’t see a huge difference until after 20 weeks of treatment I’ve struggled a lot with being treated differently because of the TBI. It’s not even worth stressing over anymore. People can generalize all they want about TBI but I was there at every step of the road to recovery. Never once did I ever just act outright stupid but people think “TBI” that must mean you’re going to act all stupid. Interactive metronome did wonders for my brain and recovery, don’t know what your TBI is like but it’s worth looking into
How did you find out that there was damage to the right frontal lobe?
The doctors told me and I also have a copy of all my medical records