Hello all , this stuff is new to me so here I go . I was wondering how I can get some joy back in my life . After my accident everything changed. Being able to remember things is all but a dream . I can remember small bits of information but let me put it like this I can hide my own Easter eggs . It’s ben two years i have to sell my home I’ve lost my boat , I use to commercial fish , I can’t work and disability has not come threw ,so what does everyone do ? if I try and work I can’t get benefits. Not that anyone would hire a busted up 52 year old man . I live remote Alaska this has ben my home for almost 27 years now . It’s like a nightmare that won’t end . Not trying to be a cry baby but I’m starting to loose hope . Was wondering what kind of help I might be able to get . Any suggestions? I am trying to become a pastor but really struggling in the memory department, will this get better or is this it ? And I’m not really sure what it is , I’m not sure if I’m even making sense . Thank you for any input .
I do not have a TBI, I’m just a Mod Support person who roams around all the Ben’s Friends sites. However, I would just like to say that you are making sense and then some.
You sound to me like a very courageous & determined person. I hope you get some really helpful input and fellow-feeling from the members here, I am sure you will.
Christina from Moderator Support
I can assure you no one here sees you as a cry baby. This is an awful route that nobody would take by choice. Life has changed for many of us and unfortunately not for the better. For a long time I kept trying to find joy in the same places it was before but it was not to be. My memory which used to be one of my better qualities has disappeared. I now have CRAFT disease (Can’t remember a f%$&ing thing). I now run my life by lists, that’s when I can remember where I put the damn list. I now have a diary to keep a track of appointments and this is where I ‘try’ to remember to write my lists. This diary is big, black that way I don’t misplace it and has a zipper cover around it, so I don’t lose bits or appointment cards. I just have to remember to look at it daily, luckily I have a wife who reminds me “What’s in your book…”
“Will it get better?” No one here can say for sure. For me, some things have returned others have not. After my last episodes I initially pushed myself to return to work, only to end up back in hospital requiring further surgery and those surgeries REALLY screwed me over. The dr’s now tell me I won’t be able to return to my former role. This annoys me beyond measure, but as much as I push myself, my body pushes back telling me “Lay down or I’ll put you down” and it does.
Being in a remote area of Alaska services maybe difficult to obtain, although I have located a service called The Alaska Brain Injury Network (ABIN)https://alaskabraininjury.net/
They will know more regarding available services. Also being a U.S. state the Brain Injury Association of America may have relevant info too. https://www.biausa.org/
You may possibly think that you don’t need that much assistance, but I’d recommend you use every resource available to your own benefit. For example, they may have connections within the Social Security system or even people who know how to work the SS system to more easily obtain the assistance you need. I must admit It took a bit of bashing my own head (No pun intended) to get SS to accept my situation and although I’m in another country it was a battle to obtain the payment.
Let us know how you get on.
And as for the “… I’m not sure if I’m even making sense…” none of us do Brent and at times that can be just so frustrating. We understand that exactly.
Thanks merl , I’m looking into those links you sent . Will update after I find out something , thanks again
I had to leave work because my cells stop producing sufficient energy for my muscles, which created lots of exhaustion and fatigue. In order to get disability I had to use my brain injury, which involved doing psychological test to prove I was semi-retarded. These test made me deeply sick, vomiting and my brain would go haywire, which took multi-times before I complete a testing session. These psychological test were horrifying and it made no sense I could not connect the dots. Being consider semi-retarded was also an intolerable idea and raised lots of aggression up in me. When my mental connections were going haywire, deteriorating into craziness, and the psychologist could care less this filled my mind with this burning hatred.
I am deeply sorry if you feel your body is alien and you feel your brain is turning against you. This may make you feel the environment is turning against you also and this could split your consciousness into two parts. For me this made me feel the need to defend myself from the environment and it cut me off from every connection with life. My mind became terrorized by this, so to stop the tormented memories I threw everything away. It is like parents who, stop being tormented by memories of a dead child, throw everything away that reminds them of the child. The mind, from a brain injury can then move into an inner emptiness and becomes this inner life from the ability to think, to feel, and to do.
Again I am deeply sorry, so I suggest you learn a new self-acceptance here. Acceptance is the starting point which makes everything else possible. Acceptance involves accepting painful truth about ourselves and it can cease this temptation to be false about ourselves. Self-acceptance is, at its simplest terms, acknowledging that one is a limited human being. Acceptance seems to offer a firm foundation to build upon and I would have done better if I had greater acceptance.
With a brain injury it can be learning acceptance within powerlessness and if this acceptance is true it can offer a great peace here. However, it is never easy and my rage was more genuine and authentic than any acceptance. So if you can I suggest you learn to acceptance within your mental limitations, lower your expectations, and learn act courageously in all circumstances, which usually means the courage to accept what your limitations are telling you. I suggest this because the brain works better relaxed and acceptance learns to trust this powerlessness.
Thanks for being here and being real.
Thank you for that Syd ,
It takes some time to readjust after a head injury, it did me. Only until recently feeling empowered.
Take a look at inspiration videos like the man with no limbs is a motivation speaker. If you want I can share a few videos? That picks me up when upset.
I believe these are my rock.
All the best.
Thank you Danial , I should have a million reasons to be happy , I’m alive and have to accept this . This is what I’m left with . Kicking and screaming is going to change the fact lol . I’ve gotten some great feed back from this site and am thankful for my new friends here . It amazes me how many people are out there with the same struggles in life . I sat feeling somewhat sorry for my self , I’m lucky to be alive ,and shouldn’t be so petty when I read other peoples struggles in here . You folks are amazing . Thanks for the kind words
I think it is normal to get what I call the ‘poor me’s’ and in a way it is a grieving process. For many of us, the lives we had are gone and if anybody tells you that that fact is easy to deal with, they have never been here. Some people talk of ‘acceptance’, well, I didn’t/don’t want to accept ‘this’. But the fact of the matter is I have no damn choice. I too tried the ‘kicking and screaming’ route, rebelling against this awful reality only to end up in exactly the same place I’d started at. So that didn’t work. I think, as you say we’re “…lucky to be alive…” and as bad as things are, they could be a hell of a lot worse. As I’ve said to others here previously, I used to work with people with disabilities and I’ve seen some of the ‘worst case scenarios’ and (selfishly) I think “well, at least I’m not in that situation” and I know I could so easily be. So I gotta be thankful for the little things eh?
I also had my accident almost 2 years ago and am still awaiting SS. I believe the one thing that has really helped me is that I am slowly becoming at peace with things. I have tried for so long to become exactly who I was before. We try to fill the shell of who we used to be…only to keep coming up short and failing at it everyday. Its because we are not the same and probably never will be. And you know what? That is ok! God has us where we are for a reason and he dosent want us to be sad or upset. So I am choosing to try everyday to be happy and have patience with myself. I am slowly getting to know the new me. Everything from the food I loved to how I view myself has changed. It is hard don’t get me wrong but I want to be happy again and I know you do to. Your story touched me and I wish you luck in your journey to become a preacher! You are a blessing and have a wonderful testimony. God is Good!
Hi Brent52. Nice to meet you. Be sure to read some posts because you’ll get a lot out of them, as you already have. The brain injury recovery is a lesson in frustration unlike anything we’ve gone through before. Here is one of the best places to vent because it is simple: you don’t have to explain a lot of it to anyone here because we understand. The only thing that I’ve got to share with you is advice that was shared with me (although I didn’t need to use it I want to share it):
What I was told by a trusted individual was that Allsup is virtually the only way to get SSDI approved in a reasonable time period. Allsup was founded by former social security people, so they know how to negotiate the system. Maybe that will help.’
Either way have a great one.
Thank you all for the info and good cheer . Crazy how many people are affected by this , just blows my mind . Sorry I had to meet you all this way but am grateful for all the help . Definetly a new life before me . Hope everyone has a great week
Hi Brent, I just wanted to say I hope things are going better for you and I hope you are having a good day.
I just found your message in my junk mail…noticed it’s from Feb 2018. I wonder how you are doing now?
My daughter acquired a brain injury in Alaska at age 15,…8 years ago. I have gone through all her stages or recovery to this point, from when she was in Anchorage ICU (with closed head injury) to now.
There are stages of grieving the lose of the old you and acceptance of the new.
Apart from the constant physical pain from injuries she struggled/struggles with social skills, not able to relate to others, misinterpreting what they are saying or their body language. Unexpectedly crying at any given time and not knowing why. Overwhelmed with too much information and mentally exhausted by the end of the day. Having no filter, saying things she later regretted when she had time to process. These are just a few things she has now come to understand about herself. She still deals with this daily but has learnt how to manage some of it.
Regular routines, avoiding stressful situations. Making lists, recording information with a little recorder to give her time to process all the information in her own time are a few ways that helped. She also started exercising everyday and preparing healthy foods.
Music…believe it or not is a great comforter and healer for people with brain injuries.
" We used to previously think that the brain is plastic only during childhood and once you reach adulthood, the brain is hardwired, and no new changes can be made to it. However, we now know that even the adult brain can be modified and reorganized depending on what new information it is learning.
This understanding has a profound impact on recovery from brain injury because it means that with repeated training/instruction, even the damaged brain is plastic and can recover .
"Brain plasticity is particularly important after a brain injury, as the neurons in the brain are damaged after a brain injury, and depending on the type of brain injury, plasticity may either include repair of damaged brain regions or reorganization/rewiring of different parts of the brain.
The future for people recovering from strokes and brain injuries is more optimistic than it has ever been.
There is tremendous amount of research showing that the brain is plastic throughout life, and this plasticity can be harnessed after brain injury also."
That was information you can find out more about online…check Brain Plasticity.
Brain injuries are different and affect people uniquely. My daughter has learned to have simple short-term daily goals and a focus for long-term goals. Years ago she use to tell me, when upset… “nobody understands me.” Now she understands herself better.
Challenging yourself with new things can help your brain “rewire and grow.”
Not everyday goes the way you want it…like anyone. Try not to let it get you down…and have confidence in yourself…tomorrows another day…Reminding yourself to switch from negative thoughts to positive throughout your day is another great tool towards happiness.
I hope this helps you or others…even just a little bit.