Brain Injury is an isolating and intensely confusing condition that is not well-explained in general. Here are two fantastic resources for TBI survivors and family members, to help you learn about the brain and brain injury.
Brain Injury is an isolating and intensely confusing condition that is not well-explained in general. Here are two fantastic resources for TBI survivors and family members, to help you learn about the brain and brain injury.
Broken Brain - Brilliant Mind 
the hardest thing for me was to stop trying so hard. I would end setting the limit bar real high and then when I became more fatigued/realistic, the bar was so high I could not keep up. My daughter remembers that I only yelled at her once in 20 years. Not saying that some kids need to hear a raised voice, but she certainly didn’t but the time I raised my voice was not the right time, to tell her not to complain and to stop whining. She was not a spoiled kid. Now, looking back, I see handling my injury in a stoic fashion was not good and part of the reason this country stayed great for so long was that people did know how to complain when things were unjust or someone needed attention. Now, as I approach old age, one regret is that I did not complain until it was too late. And now it is time to shut-up forever. I see people around me complaining about things I consider so trivial, but maybe that’s why they stay trivial because they promptly complain. Too little complaining and much too late. In fairness to my lack of speaking up, I really did not know how I had been affected. I was unable to see that I was acting like I was 14 when I was 30. And did not even know they were mocking me when they called me “johnboy” They were ignorant and so was I, but my years are gone Grief is OK but too late to complain. Acceptance is the rule of the day now. J.
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I think we all need to find the balance that works best for us. We all have our limits, and we cannot tell from one situation to the next, when others’ limits will work for us. Don’t be too hard on yourself — people have not known very much at all about brain injury, until fairly recently. They didn’t even know that the brain can change itself — and does so, every single moment of every single day. Plus, those of us who are older were trained to handle things stoically, so we’ve just done what we were taught to do.
Now things are very different, of course. And looking back, it really pains me to realize how much time and energy and opportunity was lost, because of so much ignorance about brain injury.
Well, that’s water under the bridge. Today is a new day, and it’s time to make the most of it. Onward!
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Ok your blog makes perfect reading for me- like you, I can’t handle long books anymore. One chapter or an article, that’s about it and I used to love books. Again, I find your blog to make me feel much less lonely through this fragmented act that became my life. My generation you just did not complain. Your knee got injured then you sat on the bench and watched. You kept track of the OTHER players not your knee during the game. I don’t remember players during Pele time taking these dives and sitting on the ground playing hurt even if it made sense strategically back then too probably. Maybe they did that. Don’t know. If your ankle was injured you got it taped and fully appreciated that or at least gave great respect to the man 30 years older taping you. You got beat up and drug to a dirt lot taken for dead; you felt lucky you woke up and drove yourself to an emergency room and you didn’t question the doctor too much. If you complained about something in a store public, your mother slapped you across your mouth and you didn’t make call to social services. You knew your mother was right even if I might have handled the situation differently with my own daughter, but I didn’t have six others in the car without air conditioning. If your mind was not well enough, and you could not do what you were trained to do, you did not accept SSDI, you delivered pizza, took sympathy tips, put on music and felt grateful with smile that you had a car even if you got lost looking for houses a lot. When I read your stuff, I must admit you get my adrenaline going but good adrenaline. I’m very pissed that the medical profession dismissed me and dissed me and played on my dissociative nature to make me become what they wanted. An apology would not mean a lawsuit but water under the bridge. I’m more pissed that we live in a society that has now started to reward people for not trying. But with the individuals who i paid and trusted and then who hurt me I am also very forgiving in my heart because I will never be convinced that any one of them acted, at least initially in bad faith. I’m sure I let many people down even before my brain injured days. The important thing is that I want anyone reading this to make sure you have an advocate or become an advocate for a TBI victim. Ok I get free therapy writing and to someone I know that understands. So I write. And I repeat a lot- sometimes knowingly, just needing to and sometimes unknowingly. Once I drove 50 miles to my clinic to talk with someone after having a very difficult day at work. Unable to process it at the time but in retrospect, I get it and I’m more disappointed or sad than I am angry. HI IQ’s and good memory does not make someone a borderline case because they go to a doctor for years. There would have been much better ways for me to get attention. But I get there that day, and it seemed that they made me wait longer than usual. And being from my generation, you just wait and you’re grateful that there is even a facility to go to. Finally, I’m greeted by someone who seemed, in retrospect, appointed to me because no one else wanted to deal with a borderline or a malingerer. She took me to a room and seemed as if she was very busy and listened barely. Again, I’m thinking that this worker is over-worked and I’m appreciating quietly that she is even talking to me. then, abruptly she asks if I want the off work order. I’m very confused and not sure if it fits the order of the visit. I say NO because that was the furthest thing from my mind at that moment. I drive home and not even sure how I got home as I was a bit dissociated. yes, my perception of this and other events could be off and it was a LONG time ago. Just because one is brain injured, does not mean we are dumb. in my case, I’m dumb on the fly in back and forth conversation. but I remember a lot. And NOT to cause a stir or to get an angle but just because I want to UNDERSTAND. Ten years later, I believe finally that this person truly believed I was there for one purpose and that was to avoid work that week. Ok I’m a little pissed but it’s water under the bridge and my pre-injury gentle, understanding nature rules the day, and I’m not pissed, just sad, very sad. And I will never step foot in a medical facility for the rest of my life unless it is a private doctor who will accept a sliding scale. And I am going to get better in more creative ways. Time is/was and hopefully will be the healer of this. Since I feel safer moving around, I’m thinking of walking OHIO handing out pamphlets on information concerning people with brain injuries, vets and civilians, alike. But I must say part of the attraction is the adrenaline of walking the streets alone, not knowing where danger will befall me. Write a book or mail some letters to thousands of people? Not dangerous enough? I need exercise, feel safer on the go? Feel like sitting at my cozy desk is too easy? (self-esteem?) or not able to follow through on those steps needed or thinking it less hassle just to put on my batting helmet and sunglasses and print someone else’s “professional” literature to print out to put in backpack? What’s my deal? I want trouble but can’t harm nothing. life would have been easier if I were a “real bad ass” but I’m not and never will be and I just have to live with that.
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I hear you loud and clear. For sure. All this rings true to me, and I appreciate you taking the time to write it all down. We piece it together as best we can, and a lot of people just don’t understand that. They don’t understand the pain we’re in, and how much relief we need. I get all kinds of interesting responses from my healthcare providers, who have come to trust me more, but still don’t realize the pain I’m in and the hurt it causes me, and the need I have for RELIEF. Would it be too much to get just a little relief, every now and then?
People who are on the “normal” end of things don’t seem to get how much we need that. Or maybe they do, and they’re just too shut down to feel it. Or they’re too afraid to admit it.
It’s all a big ole mystery. We have to take care of ourselves and not worry so much about what others thing — if we can.
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