Hi everyone, Paul here and this is my first post on this site, I’m a patient with a TBI suffered 6 years ago but diagnosed about 6 months back.
My soon to be wife and I were in a head on collision back in October of 2011, I was pretty torn up in the accident, the physical damage has required 6 surgeries (body not brain). I was not diagnosed with a brain injury and what has happened is that with each surgery my brain got worse and my behavior got increasingly worse, after the fourth surgery my personality and behaviors took a major nose dive and my denial kicked in even more, I would try and justify and defend my every bad move. I truly thought I was going insane I could no longer handle stress and was flying off the handle at everything, concentration was incredibly difficult and I could barely work. I quite working thinking that it would be the cure all but things just got worse. Surgery 5 a year ago turned me into an unbearable to live with, total wack job, sending our relationship into a tailspin, then a sixth surgery this last June was the big kicker. I woke up from the surgery with no memory and in the worst shape of my life.
My surgery in June, had a multitude of ramifications but the biggest was the fact that I could no longer deny the TBI and have had the worst depression in my life, it’s like all of my defense mechanisms quite working and I could see all the bad behaviors that have driven my wife to kick me out of the house.
At this point I am living along with my 2 dogs, desperately seeking help, just got a treatment plan and feel like I’m on brick 1 of the yellow brick road. So much more to add but I feel fried at this point. Lost, alone and terrified. Paul.
What kiknd of surgeries did you have? Sometimes the anathesia can react badly on certain patients. Have you been genetically tested to see what is best for you? Did they inject you with gadolinium if you have MRIs? Gadolinium can build up in the brain and cause a host of troubles.
One things to start is detox. Have you ever had FlorEssence Tea? Green drinks and turmeric are powerhouses, too…Cilantro and Chlorella is a great combo…
You have been through a lot. List all the medications and injections and anethesias you have had and see if you might be overloaded right now. You can get better…but you have to see what you are dealing with first.
Sorry for all the typos. It is 5:30 and I am up early today!!
We often share experiences here, including complementary therapies like those that Okrad has used. If you decide to try any of non-medical complementary therapies, please do tell your doctors what you are doing: even though they may seem harmless, anything you do or take could have an effect on your condition or your treatment. So that your treatment is as effective as possible, talking to your docs is the thing to do.
Absolutely! I forgot to add that it is imperative you speak to your Dr about what you take. When your brain in injured, things are different! I have an Integrative Doctor who supports alternative medicines and even prescribes them, so that is an option. She is a full MD and an Alternative Doc on top of it, so she can look at it from both sides.
I agree, don’t just go freelancing unless you have already consulted. You can get better!!
Thank you so much for the replies everyone, I am actually in the process of gathering all of my medical records and have a person helping to file for disability (a place I never thought I would be), I just got the new application appointment scheduled yesterday and started my first OT session yesterday also, big day for me.
Unfortunately I only became aware of the brain injury in late June or July after five and a half years of things just getting worse with each new surgury. Now that I am aware of the fact that I do indeed have a brain injury, I keep getting flashbacks of just how insane I was acting for so long and to be in such denial of reality blaming my wife and others and being incapable of seeing reality. The worst part of becoming aware was the bottom I had to hit for awareness to be possible. It was as if all my defense mechanisms and ego had just been removed and all my past trauma came flooding back in and sent me into a state of suicidal depression that was debilitating and needed to be dealt with before dealing with the TBI. I truly feel like I was in a black out for the last five and a half years and just came to, going WTF just happened.
I will try and work on what happened and list the surgeries and stuff that goes with it but I just hit an emotional wall writing down what my life has become and need to take a brain break, thank you for understanding and your kindness, Paul.
Thank you for reaching out for support and I relate to what appears to be deep burning anger. From my experience, I express rage when I feel overwhelmed and violated, powerlessness and hopelessness. Then when my mental connections go haywire, and has no basis in fact, the madman will attack. If I retreat from life or need to defend myself, while trying to restore the feeling that I am capable and competent, the situation naturally becomes worse and overwhelming. This will lead to rejection and detachment, then my anger just burns.
My suggestion to you is try not to withdraw from others and life. Also maybe try to move yourself into a position of non-attachment. Non-attachment is a place where we do not cling to anything, inner or outer. It is a place where we no longer cling to the mind as a source of identity and orientation to the world. Non-attachment is not based on anything, not our thoughts, not our feelings, not our body, not our perceptions. Everything in the mind just arises and disappears.
From my experience when I tried to find security and power it created insecurity and powerlessness. This created a darkness, which was repulsive and filled my mind with hatred. The best I found if I turned this darkness into non-attachment it helped to deal with the powerlessness. Non-attachment teaches the mind it does not need to understand. Practicing non-attachment lets everything pass through and nothing “stick” in consciousness. It allows the mind to have clarification of boundaries and can better discriminate color, texture, form, movements and your value. (This is strongly practiced in Buddhism, if this is any interest to you.)
I sorry Paul you have to experience this, as it is intense, confusing and complex. You may feel horror and uncertainty, then nothing is clear or certain and anxiety increases. I can just say try not force anything to a conclusion and try not to force your mind to find order or impose an order of your own. I realize it is extremely hard not-knowing the outcome of things and yet non-attachment should allow your mind the ability to relax and heal. Maybe try to not cling to any of your own ideas about how things should work and just observe life. From this non-attachment I believe the anger will diminish and this complexity should become simper for you. I also feel this non-attachment will give you a key for understanding the whole.
Maybe just understand non-attachment is where words, theories, and symbols are left behind, and then allows this place to leap from the known into the unknown, which clearly becomes the great achievement or an opening into a still mind.
Hey Paul, I will stay away from the medical issues, because I am not and never was a doctor, but I did work in community service before my car accident, and will stick to emotions. You are entitled to feeling anything. Sad, glad, frustrated, relieved, anything in any combination. Nobody knows how you feel, and nobody has to know, but in this group, you wil find support,empathy, and encouragement. Talk to us. This is a support group.
Hi Karyn, thank you for your support, which is what I am looking for most and to say the things I’m afraid to tell people that don’t understand like today when a guy I know (that also knows I have a brain injury) calls me to see if I will setup his entire mac computer system to connect his phone and Ipad along with router and tv (I was a computer network administrator and ran a one man business) we had talked the night before and I told him some of the thing that I can’t do anymore including work. so when he called today I again had to tell him that I can’t work on computers anymore and his response was “I’ll pay you”. Just wow!
People who have never been you, even those who have a BI cannot know what it is like for you, each survivor’s experiences are unique to that person. You know what you can and can’t do, even therapists and doctor’s only know what people who have injuries like yours should be or have been able to do. You are the only one in your skin (I hope lol). You should listen to people who know about TBI, and understand they have seen it before in others, but that’s not to say it will definitely apply to you. I know people in my condition usually are bedridden, and never eat orally, much less sit up and communicate, and that was assumed about me, but I am none of those things because of talented medical personnel yes, but i decided i didn’t want that life. I am in a wheelchair, and likely will always need one, but i am working on short bursts of walking. You are not able to do things you once could, and people only see the old you. You are a new person, but keep in mind that not everybody understands that. It’s okay, people who know you know that, but it’s often easy to slide back into used to be. Even for you. Try to forget what used to be. It is hard to accept and some people never do, but the old you is gone. You may be able to learn, even reaquire your old skills, but until and unless you do AND want to make use of them, just say no. You are not required to explain unless you just want to. As far as you explaining, and him offering to pay, PLEASE! Just say no, accept that he’s got a mental deficit and move on with your life. Some people can’t, or won’t accept your change, don’t be one of them! The old you is gone, now it’s time to learn the new you. Has taken me half my life to reach that point, but I have learned a lot in the process. You are still you, just different, and few people understand that difference. My husband of 13 years divorced me 8 years after my accident. He simply could not accept that I’m a new person. People who do not understand are not worthy of concern.
Karyn Hughes
This is good words from you and good observation about your “grief, sadness, shame and guilt and a hole lotta fear….” I also appreciate your courage to face this nagging feelings of something missing inside. If you can keep practicing your courage I believe it will move you into a fearlessness and become this tremendous support. Speaking of support I experience this place within you willing to give yourself to others and you appear to want others to respond in kind. Your supportive nature appears to be your stability from within and it seems to me Paul you now may need to tap into this inner courage more deeply to offer this stability to yourself. I even wonder if your courage could not be a talent and training for others and for yourself. I not sure, but I feel you can help create genuine security for others and maybe now your courage wants you to experience it directly. There is something in you, courage I believe, that is solid and to me this quality is particularly effective for leadership. Thank you for your significance and what I feel is your deep courage.
Paul … You do not know what you can do and at this point and you need things to do to give life direction. If I can do those same kinds of computer work so can you. You just need to break the process into steps that you can handle.
Hi there hartcreek, sorry if I miss represented myself, the reason I talked about the computer stuff was to show how people don’t understand a brain injury and expect you to be the person you where before the brain injury and the frustration ensues. At 58 years old and at a bottom with my brain injury, struggling to even look at a computer screen. I have to take continual breaks at this point due to headaches and vision problems. You are right I don’t know what I can do yet but I do know what I can’t do now, Thank you for your advice. Paul.
Just wow Syd, made me cry to hear such hope and compassion thank you so much, I truly hope that I can get to a point where I can help others and to be of service to my fellow man, I went to my first TBI support group last night and it really helped to be with people that understand. Thank you so much for such kind words. Paul.
Karyn, you are amazing, thank you for such a kind and meaningful reply, I will be reading it over and over as I start the journey of who am I now… I really am starting to wonder about the future and your outlook is very helpful, thank you so much. Paul
You might want to see a specialist for concussive eye syndrome.
Hi there hartcreek, sorry if I miss represented myself, the reason I
talked about the computer stuff was to show how people don’t understand a
brain injury and expect you to be the person you where before the brain
injury and the frustration ensues. At 58 years old and at a bottom with my
brain injury, struggling to even look at a computer screen. I have to take
continual breaks at this point due to headaches and vision problems. You
are right I don’t know what I can do yet but I do know what I can’t do
now, Thank you for your advice. Paul.
Paul, wow! Your story in and of itself is proof that not everything can be fixed and sometimes fixing one thing makes another worse. You may find yourself in a tailspin a lot for the rest of your life or not maybe only for a few months or years. I know what it’s like to wake up and not remember anything. That’s what happened to me. Your not alone when your here. We may all be miles and miles away from each other however we are all connected through what we are dealing with. I’m not saying we are all the same with what we’ve been through cause trust me we are definitely not. Acceptance seems like it played a key role in your start of recovery. This is a long hard journey that no one and I mean no one wants to go on. Its okay to feel lost, I feel lost a lot. If you have questions just ask on here if you want. Also a suggestion. Have you tried dry needling on your suboccipital muscles??? Insure that you check with your doctor cause this can make a head injury worse if your not careful. As I said before feel free to open up about your problems. We will try and help you through this as much as we can.
~Adilyn
Hi Paulyaya nice to meet you. You know it is a sign of progress when you can reflect on how surprising was your behavior. I certainly didn’t like what I found when I could finally “see it”… then again I am glad that I could.
If you can walk with your dogs then that is probably one of the most powerful mood medicines there is.
Maybe you can find a medical advocate to help you weave your way through this whole thing. It is difficult to do it alone and you are not the only one who has found this (through different stories yet they all have a shared core).
Keep at it Paul you reached out and that says so much good about your recovery you might be astounded. Not to set expectations too high but it being able to share the madness of it all somehow makes it less mad. And it even makes it so you can start to appreciate things more than before too.
