Our Lives With Post Traumatic Stress Disorder and Traumatic Brain Injury

TBI and why it sucks….

As you can see from my profile, I suffer from PTSD, TBI and a GSW. I am only going to talk about the TBI right now. M graciously asked me to be apart of this awesome blog and I jumped at the chance, to try and get people to understand what we go through. This is a challenge that I’m more than happy to accept…even if i can’t remember what the hell I’m doing half the time.

Traumatic Brain Injury or TBI, sounds bad because it is. Here is the basic definition thrown out by doctors:

“Traumatic brain injury (TBI) is a non degenerative, non congenital insult to the brain from an external mechanical force, possibly leading to permanent or temporary impairment of cognitive, physical, and psychosocial functions, with an associated diminished or altered state of consciousness.

The definition of TBI has not been consistent and tends to vary according to specialties and circumstances. Often, the term brain injury is used synonymously with head injury, which may not be associated with neurologic deficits. The definition also has been problematic with variations in inclusion criteria” http://emedicine.medscape.com/article/326510-overview

This is the basic nonsense that I have heard every time I have gone to see a doctor. Basically what it means is its not a disease, you don’t get it like a cold and supposedly it doesn’t worse (horses shit) and they can’t do really tell you have it until you die. If you have followed the NFL at all you will see the same basic functions, in the fact that you can not truly test for a Traumatic Brain Injury or the most common theme the “concussion” until you are dead. The most recent example of this in the NFL is Travis Henry and quite possibly Junior Seau, which they aren’t sure about yet.

But most Vets with multiple blast exposures exhibit the same symptoms NFL players with multiple concussions do. Horrible headaches, memory loss, motor function loss, sleep loss and several other symptoms. I can attest to all of those. The headaches I have are debilitating, memory loss is ridiculous; I walk into a room and forget why I’m there. I won’t tell you how many times that i have left my keys in the ignition and the truck running at work, only to come out at lunch and realize what I did.

The worst part of TBI at least for me is the headaches and the memory loss. The headaches hurt like hell, and when i get them, if i do not catch them in time i have to waste half a day in the ER waiting on a shot to make it go away.  The memory loss does not physically hurt, but its extremely unnerving (which doesn’t help with PTSD) and very frustrating.  I have forgotten numerous “special” things I have done for my wife over the years, i.e. when i have given her a piece of jewelry or something like that and obviously that sucks. Most people would say I do that all the time…but most have some sort of memory of the event, a snippet here or there, for me, its gone. All of it, nothing there. I will pose this scenario to you, and let you dwell on it. This is my life and what i have had to deal with for the last 8 years, and its only gotten worse, after each successive blast exposure. Walk into a bathroom in gas station, or any where for that matter, or go somewhere where you can not see the outside, walk out and have no idea where you are or how you got there….tell me how you would feel. That’s half the reason I stay in basement, or carried a gun for so long. Being scared out of your mind or thinking about being scared out of your mind, because you don’t know the next time its going to happen is….debilitating. Think about that…till next time.


6 responses

  1. Pingback: There is Help for These Battered Athletes – and also TBI patients! | Brain Health Resources

  2. My mom has a brain tumor (glioblastoma multiforme) and deals with people telling her all the time that they forget words or events, too. It’s hard to get people to understand that it isn’t the fact that it can and does happen to other people – it’s that the my mom can’t tell if it’s the tumor stealing something else from her or just an ordinary event that would have happened otherwise.

    Clearly not the same thing but we can empathize with the frustration of others saying “Oh, that happens to me too!”

    May 9, 2012 at 4:55 pm

  3. Pingback: Lessons from the TBI Community « ADD . . . and-so-much-more

  4. So true. People who have not experienced TBI cannot and will not understand what it means to lose part of yourself. And they will never “get” what it’s like to not fully understand the extent of your issues — until after things have gone wrong.

    With regard to everyday things, I had a hell of a time just getting ready for work each morning. I couldn’t remember if I’d washed my hair or brushed my teeth or had my breakfast. I started making checklists and I didn’t worry about feeling like a complete idiot – you have to do what you have to do – and I used my checklists for about 6 months until I had a routine down.

    In the car, also, I would get confused about the order that I should do things — shift into gear or turn the key first? So, I also worked out a routine for that — get in the car, buckle myself in, turn the key and start the engine, check all the gauges and lights and mirrors to make sure all is well, then put ‘er in gear (and don’t forget to take off the parking brake). I tap the handle of the parking brake twice after I release it, too. These things are simple steps, but they have made a huge difference. I haven’t almost backed through a closed garage door in several years. 🙂 And that’s a good thing.

    Anything having to do with cars, I actually make into a routine. When I pull into a parking space, even if I am late, I force myself to go through the same routine — put ‘er in park, engage the parking brake (and tap it twice), then unbuckle my seatbelt, check around me to make sure I have everything I need, and get on with it. I have to be extremely deliberate in things that I do, or I can forget what I’m doing… and that’s no good. My memory has actually improved — or rather, my ability to remember has — because of my routines and the steps I take to do things. Having a “framework” to deal with makes things a lot easier.

    I also have only three places I try to put my car keys — in my pocket, on the hook on the wall at home, or in a specific pocket of my backpack. If I put them anywhere else (and sometimes I break my own rules) I can spend a while looking for them — and that can be traumatic in itself.

    Good luck with everything. It can get better. Get some structure in your life, and that may help. A lot.

    Stay strong

    June 14, 2012 at 6:44 am

  5. THANKS for posting this – brave of you.

    FYI – I’m linked to this page from my ADD-focused blog article that makes comparisons between ADD challenges and TBI (not the same, but the effects are similar, for similar brain-based reasons).

    The holes in memory you report do NOT have an ADD correlative, however. We have working memory deficits – bad enough to forget what you went into the next room to DO all the time – but what you describe is beyond imagining because there is no “fix” with systems for that kind of thing.

    My heart hurts for all of us – but most of all for people like you – injured in the line of duty because you stepped up to protect us – ME. (I’m an AF brat, so I have a soft-spot anyway, even tho’ my Dad was a military scientist, not a soldier – he did do his time as a fly-boy in WWII and his Purple Heart has clusters) I’m sending White Light and prayers for peace and healing – and for continued strength to simply get you through each day.

    @BB – re: keys – I finally had to bell mine, and teach myself to hook them to my purse before I step off the landing – like you, even if I’m running late. My new digs have a “do not duplicate” key to a front door that closes behind you almost before you step through it. If I’m not jingling, I don’t have keys with me.

    I have baks of all keys I can duplicate – LOTS of baks – some with friends – but getting locked out of the building is a bear! My landlord doesn’t get the problem, even if I could justify paying $75 duplication fee (yes!), she is more concerned with building security than whether I spend the night on the street due to my “negligence” – so multiples of THAT key are not gonna’ be a happening thing – and I’m “an extreme owl,” so getting buzzed in is not likely after midnight.

    When I ADD-out (don’t use a system I put in place — can’t ALWAYS count on myself to use them whenever unexpectedly distracted in some novel manner), I can shake clothing instead of searching through pockets because I can’t remember what I had on when I last had them, etc. The bell is a golf-ball sized jingle bell that was supposed to be a Christmas ornament so the jingle is its own distraction for all. (The guy at the library always say, “Santa!” when I walk through the door!)

    TONS of work-arounds that those with reliable working memory (and an ability to attend with intentionality that I can only aspire to) can’t understand and I MUST keep in place or life becomes one long scavenger hunt. I really get the “tap twice” thing – you’d be a great ADD coach!

    Madelyn Griffith-Haynie, CMC, SCAC, MCC
    – cofounder of the ADD Coaching field –
    (blogging at ADDandSoMuchMore and ADDerWorld – dot com!)
    “It takes a village to educate a world!”

    June 15, 2012 at 4:54 am

  6. After three brain surgeries to remove an intra-ventricular tumor, (benign…thank the Good Lord) I had to drop my insurance…I can’t work…I can’t pay for insurance…in the Good Old USA that leaves you with…I don’t know…Social Security…but all of hose hoops are so hard to jump through…especially post TBI…

    October 5, 2012 at 1:47 pm