The Sandbox

GWOT hot wash, straight from the wire

Welcome to The Sandbox, a forum for service members who have served or are currently serving in Iraq and Afghanistan, returned vets, spouses and caregivers. The Sandbox's focus is not on policy and partisanship (go to our Blowback page for that), but on the unclassified details of deployment -- the everyday, the extraordinary, the wonderful, the messed-up, the absurd. All correspondence is read, and as much as possible is posted, lightly edited. If you know someone who is deployed who might have something to say, please tell them about us. To submit a post click here.

TBI |

January 21, 2008

TBI
Name: J.R. Salzman
Posting date: 1/21/08
Returned from: Iraq
Hometown: Menomenie, WI
Milblog url: LumberjackInADesert

Something that is incredibly lacking at Walter Reed Army Medical Center is a traumatic brain injury (TBI) care facility. I have TBI.

I didn't know I had TBI until my Nar-Sum (narrative summary) was composed and ready to be turned in for my med board, seven months after I arrived. Not once during my 8.5 month stay at Walter Reed did I have a doctor tell me I had TBI, or where I had to go to get help. Most of the memory loss problems I have been suffering were written off to the hundreds of oral medications I've taken. So were the other symptoms.

It wasn’t until I returned home and kicked most of the medications that I realized I have a very serious problem for which I need medical help. Since I've been home I have been unable to sleep. I might sleep for three, four, maybe five hours if I’m lucky. I have trouble keeping things organized. Saying I have memory problems is an understatement.

Since school started, I feel completely overwhelmed. I feel tired and exhausted all the time. I cannot keep simple tasks straight, and I cannot focus on any one task long enough to make progress. I spent this weekend seriously contemplating dropping half my classes. I’ve never felt more lost and confused in tasks that I know so well (I already have over 90 college credits).

While doing research for a paper for my Students With Disabilities class, I came upon a report listing the symptoms of TBI and was quite surprised to read them. They include:

Headaches or ringing in the ears
Feeling sad, anxious or listless
Easily irritated or angered
Feeling tired all the time
Trouble with memory, attention or concentration
More sensitive to sounds, lights or distractions
Impaired decision-making or problem-solving
Difficulty inhibiting behavior –- impulsive
Slowed thinking, moving, speaking or reading
Easily confused, feeling easily overwhelmed


There is not a symptom on this list I don’t have.

I remember being tested shortly after I got to Walter Reed in December, 2006, but my wife and I were never told any results. And since I had many surgeries to undergo, it quickly escaped my mind as thoughts of losing more limbs took priority. It's one thing for your therapist to tell you, “Yeah, you probably have TBI”. It's another thing altogether for a doctor to tell you, “Yes, we tested you and you have TBI. Here’s what you have to do to get help.” I was never told I tested positive. If I hadn’t stumbled upon it in my paperwork seven months later I might not have any written documentation to support it.

My question is, if the doctors at Walter Reed knew I have TBI, why wasn’t I given any help? If a doctor does a blood test and discovers you have a disease, he tells you and helps you find a cure. Why did I fall through the cracks? How many other unfortunate soldiers there are experiencing the same thing?

Comments

Doctors aren't as good nor expert as we want them to be, people tend to work to stablilize in injured first, correct the life threatening, then the life crippling, then maybe if the patient and the medical team have time work on the mind and the soul... but there probably were wounded flying in behind you as you were treated and you were sent off to the shelf to wait further indications of decline or improvement. Time being the 'great' healer. You probably should trust government as far as you can throw it, lots of well intentioned people but they have all been wrong before and may be so again. Take care and continue to work on healing, and your health and happiness.

Doctors aren't as good nor expert as we want them to be, people tend to work to stablilize in injured first, correct the life threatening, then the life crippling, then maybe if the patient and the medical team have time work on the mind and the soul... but there probably were wounded flying in behind you as you were treated and you were sent off to the shelf to wait further indications of decline or improvement. Time being the 'great' healer. You probably should trust government as far as you can throw it, lots of well intentioned people but they have all been wrong before and may be so again. Take care and continue to work on healing, and your health and happiness.

For those in my profession I apologize for allowing you to "fall through the cracks". I would like to say the situation at Walter Reed Army Medical Center, Brook Army Medical Center and Bethesda National Naval Medical Center has gotten much, much better. I know it is not much consolation but I personally try my very best to make sure all my patients and their families get the proper help they need.

It may not be as bad as you think. I had a TBI from a car wreck. It lasted three years -- same symptoms. Not quite as bad, but bad enough I couldn't hold a steady job for almost a year. Even then, I had to limit myself to simple, easy jobs.

Then, one day, like a light switch, my brains came back. Boy, I sure did miss them. It wasn't perfectly like a light switch, but something 'popped' and a lot came back on at once. There's still a ways to go, but I'm a lot more self aware.

You might be doing this, too. You won't notice it at first. Do things from your old routines. Your body remembers what your brain does not. Do something mental and physical. Not just classwork. Nothing really important. Something very simple, repetitive and mental. Video games, your pick, as long as your mind is working at it. Any of the strategy games will do. Any old ways you had of staying sharp; crosswords, jokes, irony, arguments (you know, the useless, good natured ones). . . whatever works for you.

Follow your instincts. If you need to play Solitare for hours at a time, do it. Trust yourself to help you heal.

The brain is just one part of the package. Your body, your muscles remember how to do things too. They send back messages. You heal up to fit the demands you put on the nervous system. The nervous system reconnects to a healing brain. The more you do, even if it is simple and repetitive, the more the body, brain, nerves, get built back up.

At least that's how it happened to me. Oh, yeah, get as much compensation from the VA as you can. You earned it. Every penny. I'm proud to pay taxes so our government can keep its' word to you.

If you have not had a neuropsychological evaluation, you should try to arrange to get this done. It is different from a neurological examination and can help you to know what aspects of cognition have been damaged and help you formulate a plan for dealing with the damage. Feel free to contact me if I can help.

If you have not had a neuropsychological evaluation, you should try to arrange to get this done. It is different from a neurological examination and can help you to know what aspects of cognition have been damaged and help you formulate a plan for dealing with the damage. Feel free to contact me if I can help.

As a TBI survivor myself, I want to offer you my sympathy--and my hope. Of course each brain, each injury, and each person is unique. And I have learned in my own 30 yrs of survivorship, and that of the many TBI survivors I've known, that there is usually still a lot of joy, energy, and accomplishment in life, even though your brain is never quite the same. It's true, I live with the limitations of my brain every day. And its true that my life has been way more fabulous than I would have thought a year out from the injury. So my wish for you is that you find the right balance of challenging yourself enough to improve while loving and comforting yourself enough to love the life you have. And next to our abandonment of the people of Louisiana, our unwillingness to support the TBI survivors from these latest wars is my greatest current outrage.
Blessings to you and yours,

One thing to keep in mind while scheduling classes is that your classes should be no more than 50 minutes long with at least an hour in between. Apparently, TBI brains have a lot of trouble organizing information early on, and will just give up and dump everything if they do not have that hour of non-learning time, during which it does the organizational chores that those without TBI do more quickly. The article I read was for students K - 12 with TBI, so it spoke of alternating academic classes with P.E, lunch, music, PT and other classes that do not have lots of new information. If it helps at all, I have a friend who was in a car crash, lost her vision and incurred TBI. She says that the brain recuperated fairly quickly - a year or two and she was able to push herself with 17 hours a semester. In the meantime, cut yourself a lot of slack. Trying harder will hurt, not help. and a bood phrase for those who do not understand is "fuck you." Don't make their stupidity your problem. Godspeed on your way to recovery.

well this blog is great i love reading your articles.

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