Friday, April 4, 2014

Don't Judge a Book by its Cover Photo

For several years, John refused to take pictures. He wouldn't get in a Christmas photo. He didn't want you to even aim a camera at him. The auto reflex of a hand flying up to block his face from the camera was almost instantaneous. One of my favorite family pics was us at Disney, but he was in his wheelchair. When I put it on a Christmas photo card collage, he refused for me to send them out. He was embarrassed.

Then, one day, something clicked. He was ok with photos. He was ok with trips.  Wheelchair or on his two legs. Why? Because, he said, "I want my boys to remember that I tried to have fun with them."

John's memory started declining after his last deployment.  It was on that deployment that he received his Purple Heart for wounds from an IED blast that decommissioned his Bradley Fighting Vehicle.  He told me this week, that his vehicle was subjected to 113 IED/Explosions prior to that final one that took it out and left him with a Traumatic Brain Injury (TBI)

Trip to Universal
Not only did John want the boys to remember the times that he attempted to go places, but he also wanted photos to show him that he had been places, done things, and got the photo to prove it.  Not a bad idea, considering two years ago, he and I took a weekend getaway that he still has no recollection of.

MRIs have shown that his brain is loosing mass and volume as a result of the brain injury.  It is basically shrinking. Therefore, he experiences dementia like symptoms at times.  Sometimes he doesn't remember that he's eaten, sometimes he can't recall facts.

New research is focusing on younger veterans and their caregivers and many of those caregivers have been reluctant to discuss their life with others.  They hide it well.  PTSD/TBI are thought of as invisible illnesses and many like John, can look and function "normal" for limited times when passerby's would not think they have severe disabilities.

Posing for a crazy picture
Sleep vs. Picking noses!
Oh my!
So while caregivers are gaining recognition by congress, non-profits, the Veteran's Administration, and perhaps other family and friends, there may be more scrutiny towards these invisible disabilities.  For example, private groups on Facebook or other social media are available for vets and caregivers and many non-profits are reaching out to this generation of wounded and caregivers.  Yet, some of those among them and in society are ridiculing and making judgments based on appearances or a moment's interactions, or based on their Facebook feed or photos.

Look at my photos on Facebook and you'll find a combination of me, my husband, my kids, trips we've taken, and so forth.  Now, John will agree to put his arm around me and smile, usually.  But what you don't see is the before, after, and in between.  

EPCOT 2014 - John asked for a photo and
waited for the PhotoPass Photog to take it.

When you look at my photo from last week's one day trip to EPCOT, you see we appear normal and smiling. What you don't see is that after only 15 minutes of being in the park, he was profusely sweating from physical pain and discomfort of being around people, in closer proximity than was comfortable. What you don't see is that immediately after lunch, we went back to the room to take pain meds and to rest. Sleep. Sleep for two hours with a bathroom break and a seizure in between while he was sitting on the toilet. What got my attention was the nose bleed from his right nostril, as characteristic of his seizures, splattering on the floor.

We made it back to the park but we couldn't take the complimentary bus transportation because he didn't feel like he could wait for a bus to run if he needed to come back sooner. At dinner, we had to be selective in where to sit in relation to his back towards the least amount of people or so that he could see the door or windows.  He couldn't focus on the menu. He couldn't see it. Headache commenced.  I ordered his food for him. A waiter dropped dishes at dinner, he jumped. Where do we sit in the American Pavilion for the show? Luckily there were only 6 others in the last showing of the evening and that was comfortable, as none looked like a stereotypical terrorist.  All clear. Relax for a few minutes.

Then sleep for almost the entirety of the next three days as the two nights away was too mentally and physically exhausting.

Great Photo but you missed the
before and after. Thanks for
your perseverance 
In other events, my current profile photo where John is wearing his Purple Heart hat, was taken after we attended two consecutive MOPH events. Before the first one, he had a seizure before even getting out of bed that morning.  Trouble walking, trouble moving, dizzy, and in severe pain from the muscle contractions from the seizures. Before the first presentation, he stood for some time, walked without ambulation assistance, and with sweat dripping by the handkerchief fulls, he persevered.  He refused to quit, refused to sit for the longest time, and presented his awards.  Only a couple people were cognizant enough to see that despite his nice jacket, hat adorned with medals, and freshly shaven face (around the goatee, of course) that he was in severe pain.  Then again, he crashed for about two days from the pain and exhaustion of the events. I had to assist him in sitting up, had to help him steady himself out of the floor when he fell, and had to assist with other things as he was mostly confined to bed for the remainder of the week.

So before you are quick to judge about someone else's injuries or their need for disability or compensation…I'd urge you to think hard about all that you might not be seeing.  These vets like to look like they are doing good when people see them.  They really, in most cases, don't want sympathy. They just want to be treated like anyone else.  Hopefully, you will never hear me passing judgment on someone because of their illness or injury and I'd urge you to do the same. If you had to walk a mile in their shoes…you would likely be very surprised.

Thank a solder, honor a hero.


  1. Wow, that's all I can say right now, is wow.

    1. Thank you for taking the time to read and think about us.

  2. This comment has been removed by the author.

    1. Sorry if I deleted your comment. I saw your kind remarks in my email and thank you, J.

  3. Well said! I can authenticate everything my beautiful hard working daughter has posted. I am thankful for the good days that John has and know he has to pay dearly for days he is up and about but also having MOPH organization has given him great incentive to be able to get up and out of bed with a purpose at times. I pray for good days for all of us!

  4. Amazing and inspirational. Amanda it's people like you who are the American Veterans greatest hope. The more people see these kind of stories, maybe someday the "powers that be" will allocate more money to help. I am a veteran and had the exact same job John had, although I was lucky enough to never be injured, I witnessed many IED explosions. Some of my former soldiers suffer from the same things. I personally know the effects of PTSD. When you wrote that John said he wanted his boys to remember that he tried to have fun with them, it broke my heart and opened my eyes at the same time. Some of the things I have done or how I have acted, this has truly inspired me to do better. Thank you for writing this and I thank John for becoming one of my personal hero's today.