Tuesday, September 25, 2012

What is TBI? Another fall while I type.

Traumatic Brain Injury (TBI) has a host of symptoms and characteristics. TBI looks like different things for different people.  For some it is a closed head injury that may appear at fist as nothing more than a bump to the head or a concussion.  For others, it is a severe open head injury requiring much more immediate medical attention or possible surgery.

TBI, like Post Traumatic Stress Disorder, is now often labeled another invisible injury that a multitude of our troops are suffering with.  TBI, for each soldier or person affected, can be completely different.

At minimum TBI includes three facets: cognitive, emotional/behavioral, and physical.  Each of these facets categorize various difficulties or dysfunction.  These TBI symptoms would likely includes things such as memory impairment, concentration difficulty, problems organizing or staying on task, inflexibility or lack of spontaneity, poor judgement and prioritizing.  Other physical problems may include pain, visual impairments, hearing difficulties, diminished senses of taste and smell, seizures, problems with coordination or gait, balance problems and dizziness, and speech problems.  Speech problems include things such as aphasia.  The veteran may have trouble coming up with words or accurate words.  His or her speech may even be incoherent at times.  Endocrine and nerve dysfunctions are also potential problems with a diagnosis of TBI.

TBI is classified as a dementia.  Other forms of dementia that people may be more familiar with include amnesia and Alzheimer's disease.  During the last TBI evaluation at a VA medical facility, my husband was actually told that his brain was losing mass or volume.  His brain has literally shrunk.  No wonder he has days where things just don't work like they are supposed to any more.

Some days he doesn't remember if he's eaten or what he ate.  Other days he seems to manage fine.  Still some days are filled with the blank stares and unresponsiveness, classic of an absent seizure.  However, during these times of staring off without response, John's EEG monitoring hasn't shown signs of epileptic seizures.  A step beyond this unresponsive stare is when these seizures or passing out episodes happen while john is walking and he falls unconsciously to the ground or back into the chair or couch.  Sometimes, he has massive nose bleeds to accompany these seizures.  Often his "eyes go crazy" as our five year old says.  His eyes may blink wildly or roll back into his head, leaving only the whites exposed until he regains consciousness. 

A couple years ago, John wanted to go back to school and enrolled at a local technical college in an attempt to use his hard earned GI Bill benefits.  John was still mostly driving himself then and his memory and concentration caused problems that neither of us could have expected.  One day John returned home only about 15 minutes after leaving home and I asked him how class was.  He replied something to the effect of, "What? Crap! I knew I forgot something." He had got thirsty and had went to Sonic to get a drink, forgetting about class.  He would forget to log on to the computer to do course work, forget to go to class, and forget to turn in assignments, even forgetting to go to school to take a final.

John would be eager to start some projects but rarely finish them.  Currently we have crown molding around only about 1/3 of our living room foyer, a project that he began over 6 months ago.  He started painting a faux finish in our bathroom and all but about a five foot section is complete...as of a year and a half ago.  I could go on and on with more examples just like these.

Ringing in the ears, balance trouble, and stumbling when bending over happen frenquently.  Speech problems plague John, as well.  Examples of this might be stuttering, saying things like "bring me a a a a a a a um a drink." Other speech problems include comming up with the wrong words like, "bring me the motorcycle to call my mom" or "bring me a flashlight" with the last statement actually meaning "bring me a drink."

A change in routine can cause problems, as can trying new things.  Irritablity and anger often surface as a result of any of these problems.  The problems themselves cause frustration and mental anguish and may lead to the person with TBI acting out or throwing a tantrum because of their problems or their frustration with how these symptoms negatively affect their ability to function in life.

The long and short of the story is that physical and mental injuries are exhausting and stressful.  Not only is the veteran affected, but anyone within the immediate family, extended family, and circle of friends will undoubtedly see the effects of what happens when the war comes home and a veteran has TBI and/or PTSD.

There may not be an ongoing battle in your backyard on the war with terrorism, but when a veteran returns, part of that war comes home. In many cases of PTSD and Traumatic Brain Injury, like John's, no one can begin to prepare or expect what life will throw in their path.  One can read about mental illnesses and PTSD or other more physical complaints and have little idea of what the daily life will look like. 
Added May 2013 from my January Post on Parkinsons:
Recently, the VA has acknowledged that they are proposing changes to the way they view TBI and are embracing five (5) new diagnoses secondary to TBI for service connected compensation. These newly acknowledged diagnoses include: unprovoked seizures, depression, Parkinsons, hormonal imbalances, and dementia. (See an informative article here from the Federal Register) While I'm glad they are finally acknowledging that there is "sufficient evidence of a causal relationship" and "associations" between these things, I'm interested to see how long it takes to get the actual service connection reviewed and rated. We can only hope the process is speedier than the 5-10 years it has taken them to figure these illnesses are linked.

Sunday, September 16, 2012

What does PTSD look like? "I'm fine, how are you?"

What does PTSD look like?
"I'm fine, how are you?"

Many years ago, John thought PTSD didn't exist.  He believed it was weakness.  It was in one's mind.  It was imaginary.  Those were irrational beliefs that started in his early Army days.  Superiors would drill into the soldiers that they were strong and they could handle anything.  They were tough.  That they couldn't be beat.  PTSD was in the mind of the weak.  It wasn't real.  PTSD was for cowards.  PTSD was for sissies.  

Needless to say, when obvious symptoms of nightmares, flashbacks, and anxiety crept in, a soldier programmed with the above nonsense would deny it.  Denial.  A human's most effective and most important defense mechanism.  Denial is the soldier saying, "I'm good.  No problems. Can't complain." He picks up and carries on.  Or does he?  Does a warrior battling these inward emotions and issues really think that he's alright? Maybe he really does or maybe he has a war within his very being .  Likely he is struggling with the real plague of PTSD symptoms and that programming of "Suck it up soldier."

"I'm fine" is such a typical response.   Americans mutter this incessant crap without even thinking about it.  It seems innocent enough, yet it is affirms a stereotypical aspect of our society.  We're good.  We're well.  We maintain appearances and a Persona that we are whole, healthy, successful, and without problems.  Most people utter the usual, "Hi. How are you?" without ever wanting or caring what the addressed party has to say or how they truly are.   They expect a thoughtless, "I'm fine. How are you?" in return with none other than a "Doing well" type response.  

For starters, I don't ask one how he or she is unless I truly want to know or I care.  I think I began thinking this way sometime during my first year of graduate school when I was studying Clinical Psychology and we were challenged to be more aware and genuine in our interactions.  

If someone asks me, "How are you?" He or she should likely back up for an atypical response.  "Tired" is my usual response if I sense that someone is in a hurry or simply uttered the phrase without conscious concern.  However, if you sincerely ask me, "How are you?" you might want to sit down for a cup of joe because it might just take a while.  On the rare occasion a stranger or acquaintance asks how I am and I reply with a quick and hurried, "Fine." I back up and internally shake myself.  I really do.  I ask myself, "Are you fine today? Likely not. What was that about?"  That's how I shake myself back into a greater awareness of how I am.  Now you think I'm talking to myself and that might lead to other diagnoses so we'll get back to PTSD.

Now, maybe you can see how PTSD is an invisible illness.  People with PTSD can often hide or mask their symptoms.  They can recede into their own homes and personal lives, avoiding interaction when they don't feel like dealing with people or the world.  They can learn great (or so they think) coping skills, like denial, so it appears that they are fine.  

However, when one wants to really conquer PTSD and conquer his symptoms of the illness without it dictating life as he knows it, a few things have to change.  The hardest part is acknowledging that PTSD exists and it is real and it is happening to you or your loved one.  Not covering up or making excuses leads to a greater acknowledgement of the illness and symptoms.  Unfortunately, I think about all the years that we simply covered up or made excuses for the ugly symptoms and actions of my husband.  Looking back, it didn't do anyone a favor.  Now we make the covert overt.  We acknowledge it. We talk about it when we can and we are more honest.  A doctor or mental health professional cannot help what they don't know about.  Your family can not be encouraging or supportive if they don't know the honest truth about what is going on.  Your spiritual network, church, or confidants can't lift you up in prayer and thoughts if they are not aware of the situation.  

Few people are discerning enough to take a "I'm fine" response and decode when you are actually not "fine" and offer the help and support that is essential in making progress with PTSD or other aspects of your life.  It is essential to open up.

The begining of the posts and the fight along the way

There it is. That's how writing started and the blog got updated.  A simple enough Facebook post that blew up with encouraging feedback from friends, family, pastors, teachers, and a Captain friend in the Army who replied all the way from Iraq.  John and I had talked about me writing our story over the years and I'd never taken it to heart.  I didn't have the time or the energy.  

For the last couple years, just the routine of life seemed to suck every ounce of anything out of me.  At times I thought I could sympathize with single moms.  At other times, I secretly thought the life of a single mom must be easier than what I have to endure daily.  I would see families with disabled children and my heart would go out to them.  I could relate.  Often, I said we were like the 80 year old home-bound elderly couple that couldn't even get out to go to church.  It was a struggle to keep the house clean.  It was a struggle to make sure the bills were paid and the kids were where they needed to be.  It was a fight to keep calm and tackle what inevitably had to be done every day.  I couldn't get the grass cut.  I was so desperate that there were days I couldn't even run to Wal-Mart to get toilet paper.  I had let myself take the seat on the back burner.  

I'd make sure the boys hair was cut at least a few times a year and make sure their immunization records were in order; yet, I'd always put off doing for myself.  When I felt bad, I'd suck it up as much as I could.  For several years, I didn't allow myself time to go to the doctor, even though I, myself, had chronic conditions that needed treatment.  When my hair needed cutting between my annual visit to the salon, I'd simply pull it back.  When I ran out of makeup, I'd just forget about it for a few months or a year.  

Sometimes there would be enough energy at the end of the day to get the kids' pajamas on after a bath, brush their teeth, read a story, say prayers with them and put them nicely to bed.  That's how life's supposed to be, right?  Rarely, would that happen without a glitch around our house.  Often the boys wouldn't want to put on PJs because they'd say, "I want to sleep in my underwear, like Dad." I would let them. They would not want to potty.  They would want something to eat.  They would cry, avoiding bedtime crying like the best, "I can't go to sleep!"  Just the routine of bedtime exhausted me by thinking about it.  Exhausted, I'd likely fall asleep with my clothes on not even bothering with bed clothes.

Often my Mom or sister might be around and they would help tremendously with the chores of the house and the boys.  My family has been our saving grace.  Mom spends a few nights a week with us and her father, our Papa has taken the boys more than I will ever be able to count or thank him for.  

Last year after John started going further downhill, I even went so far as to pull the boys, then ages 2 and 4, out of the church preschool program simply because there was not enough of me to go around.  I cried.  I was surprised at this.  I thought quitting preschool would be easy and I rarely cried or showed much emotion.  Yet, walking out of the preschool that last day after just the first week of classes, I was about as emotionally tore up as I can recall.  

On the surface my reasoning was that even though it was only a few days a week for a few hours, I was uncertain if I would have to rush John to the Emergency Room and be stuck with no one to get them or take them back the next day.  I was afraid that I'd come home and he'd be on the floor again.  I didn't know if John would be oriented enough that I felt safe leaving him at home just long enough to drive the three miles to the Church and back when it was time for pick up or drop off.  

Looking back now, tears in my eyes, this was my heart breaking.  Those tears were for me. They were for my sick husband.  They were for my kids.  My tears that day and the emotions I was choking back represented my fears that PTSD and TBI (Traumatic Brain Injury) were winning with their grip so tightly wrapped around my family's neck that we were suffocating.  It was destroying the ability for us to have any semblance of a "normal" life.  

Post Traumatic Stress Disorder and TBI have become known as the "invisible wounds of war."  If you take a close look at our family, these two are not invisible.  They are very apparent in very real ways.  They've dictated how we live. They've demanded that we be certain ways.  We avoid certain things, while we engage in others.  PTSD and TBI have tried to conquer our lives, our time, our emotions, and our mind sets.  Now that we are more aware and more open, we are fighting back.  I refuse to let these two very real and visible issues conquer John, myself, and our family.    

Life as we know it...Reflections for 9-11

Savannah International Airport after R&R July 2005
Facebook Post 
September 11 at 11:56 AM

Where to begin today? Another 9-11 has come and gone. I woke up not in full awareness of what today was, felt emotional and a bit depressed.  Maybe PMS? Maybe feeling overwhelmed? Then I logged onto Facebook at 8:40AM and my memory was immediately jogged.  Tears flooded down my cheeks.  Eleven years ago, I sat with Granny Smith in her living room as we watched the tragic events unfold. 
Likely, you remember exactly where you were too.  Yes, I like countless others remember but my sadness, grief, and recollections are not all for those that perished on September 11, 2001. 

Last September marked a pivotal decline and downward spiral in my husband's health.  All of this was a very long chain reaction leading back to the events of 9-11.  

On September 11, 2001, John was doing practice jumps at Ft. Benning and would soon deploy with the 1-75 Ranger Battalion.  He had three deployments with them before I met him.  In 2002, John sustained injuries that led to his move to 3-69 Armor at the 3rd Infantry Division, where he deployed on his final 12 month mission that began only one month after our wedding in 2004.  It was in this final deployment that John would be in an explosion.  His Bradley fighting vehicle was hit with an IED destroying the vehicle and cracking his helmet, breaking a finger or two, cracking some teeth, and resulting in a quick but not long lasting medical evacuation.  

All of this was unknown to me until after John came home, had been honorably discharged, and received his Purple Heart award in the mail.  It was then that I saw these events described while he sunk back, never intending to tell me he had been hurt. 

We struggled through a few years of symptoms and refusal to seek help from the VA because John was proud and thought, "others deserve it more." It wasn't until his headaches and mood became so debilitating that he agreed to seek medical attention. 

Since last September, we've had a myriad of awful days and horrific symptoms ranging from seizures and inability to talk and move to frustration, depression, anxiety, and more than most could ever imagine.  Today 9-11 hits me harder in the chest than ever.  The "aftermath" has attacked us as individuals and as a family.  It has tried to destroy and tear down who we are.

I truly grieve today for John and those other countless men and women who return home with both physical and mental limitations.  My heart aches for those that can't stand to go to a restaurant or sports event because of the fear of the crowd.  My heart breaks when I think that going to church is a huge struggle because of a man or woman's fear of getting out, fear of being close to people because he or she is not comfortable with them, or terror that he can't see what's going on behind him.  Heaven forbid someone wear a scarf and the veteran imagine and hallucinate or flashback to a place where someone with a head covering exploded in an effort, possibly successful, to kill.

I grieve for that loss of so called "normalcy." Normal for us, is not "normal" any more but we've adapted. We learn to cope and we pick up and carry on.  

Sometimes we get mad, sometimes we yell, and sometimes we cry.

Maybe we would have made more progress if we weren't stubborn and had asked for help sooner.  Maybe we'd feel more rested and less stressed if we weren't so proud to allow others to do more.  Those are lessons we've been learning and they are not easy for a proud vet or an independent person.

Yes, I am thankful for very much in life.  Thankful for better days, appreciative of the little things, yet very much sorrowful for losing any concept of what's expected.  Not knowing what tomorrow holds of what kind of day it will be, yet mustering up enough faith to handle it with grace...hopefully.  We've learned to let others help.  Learned it is ok not to get it all done, learned to carry on when everything feels hopeless.

Will today be as good as yesterday? Will John be able to go to a soccer game, yet it take so much energy that he stumbles to his chair after coming home, sinking into it unable to utter any coherent speech?  Will he have seizures and nosebleeds, not even being consciously aware that he has dried blood traveling from his nose to his neck and chest? Will he need help drinking a glass of water? Will he be able to get out of bed? 

Will he be in a great mood and decide he feels "fine" enough to get up and meet the world or get up and have too much anxiety to even eat at the dinner table with our two boys?  

John says I should write a book and that would mean a lot of this kind of disclosure, daily life, routines, and exposing life as we know it.  These, however, are just a few of my many thoughts and emotions today.  It doesn't mean that I'm depressed or need meds or want someone to step up and do something.  It means I've shared my conscious awareness with you today in hopes that you are more aware, enlightened, thankful, and remember not just the casualties that fell with the Twin Towers, but you remember and pray for the wounded, broken and forever changed: the servicemen and women, the veterans, the law enforcement, firefighters, the families and the caregivers.  May God bless us all.  -Amanda