A Service of brainline.org
Are You in the Club No One Wants to Join?
This is a loaded topic for me and mannnnny others, but today I want to talk about something that came up recently regarding family who doesn’t ‘get it’ in understanding the complexities and challenges of our lives after combat.
This is a sore topic with me on multiple levels. It’s one of those topics that needs an entire chapter of a book to explain or discuss….and could very well be an entire book if I really want to be honest about it.
So I’ll TRY to keep this short and limited to one aspect of the issue.
I had a family member (one of the ones who WANTS to learn more about our life) recently confess that she is still learning and had ‘no idea’ and thanked me for the continued reminders. God, I love her for that.
Then I have some family members I’ve had to literally BLOCK because they either refused to learn, or just refused to understand. I was the ‘bad guy’ and became a target for unkind actions on their part.
I am reaaaallllly tired of being the bad guy. I really am.
Over the years I’ve struggled with trying to educate the public, let alone family or friends, about what TBI does to a person. Or what PTSD does to a person. And then I further explain what it does to their spouse, their children, their quality of life, their friendships, etc.
This shit is hard, people. And the outcome in these situations is I continue to fall into the ‘bad guy’ category when I step in to provide correction, redirection, education and understanding.
BOTTOM LINE: The person you need to be listening to is ME. (Or any caregiver/spouse in an equal or similar situation.)
My husband is the most truthful, honest, pure person you will ever meet. He is honest to a fault. Even if it means admitting he screwed up, he’ll be the first person to admit it.
My husband is going to FORGET to tell you the truth because it’s escaped his mind entirely. He’s going to confabulate things to connect all the missing dots and fill in the gaps with things that probably never happened. He’s going to tell you things he thinks he’s supposed to tell you because he knows it’s the answer you want to hear. He doesn’t want to hurt your feelings or cause undue alarm by telling you the truth sometimes. He’s also too tired to explain it all, so he just summarizes it or glosses over the topic entirely.
And that means I have to go back and clean up all the messes it creates.
For instance, I overheard him today talking about how ‘healthy’ he is. My eyes bugged out when I heard it…but I GET why he made such a claim.
In his mind, he is healthy because he’s working hard at it. He’s losing weight a little at a time. He’s compliant with his meds and they are working the way they are supposed to. He’s more stable as a result. He has a good care team at the VA (which most don’t have the luxury of having!) and things are rolling along with his health better than expected.
But what he hasn’t shared is that it’s because of ME that these things are going on. I hate to burst any bubbles — but he’s not as healthy as he claims. Part of it is because I take that role on and shield him from a lot of it. And this makes me the bad guy/pessimist/realist in the equation and likely an enabler in the end. I don’t want to stress him out or add pressure by saying “Hey, love…your cholesterol is so high you are a heart attack waiting to happen!” Instead, I plan his menu as carefully as I can so that I can quietly address that issue without bringing fear into his mind. The last thing we need is for him to stress out on top of all the other stress he’s got on his mind and in his life. And guess who deals with that stress? Me. And the kids. And his aide. So I make damn sure not to add more of it if I can help it.
And then there’s the other stuff…
I was the one to get the in-home equipment he needs to do his workouts at home. It was me who arranged for the personal trainer/life coach to come see him regularly and add another 10+ hours of responsibilities per week that come with those visits. It was me who works with 16+ providers at the VA on a weekly basis. It’s me who pushed to get him leveled out on his meds, orders them, makes sure he takes them, etc. It’s me who tracks his labs with Excel spreadsheets to make sure nothing is falling through the gaps. It’s me who looks at the trends of his labwork to see declines so we can intercept quickly. It’s me who …dead tired and not in the mood… suggests we go for a walk and then has to CONVINCE him to leave the house in order to do it. It’s me who does so many other things in relation to this issue that I am too tired to even talk about all of it.
And that is a FRACTION of what a caregiver/spouse does for someone with a TBI/PTSD. A FRACTION!
I was recently asked to set aside time for someone so they could “pick my brain” about all the things Dan deals with on a daily basis so they could help him.
On the surface, this is HUUUUGE and amazing news. But there’s a catch…
This is the first time in 10 years they stepped up to ask that question. And then, I find out it’s because they are sure they can sell him something (or, maybe gift him? I don’t know) using products on the market that are supposed to fix damn near everything.
I feel so defeated. It makes me want to scream.
If it would help, of course I have likely already tried it. I’ve been the bad guy before making him ‘try’ something new (he hates it when I do that!!!). But we are talking about a BRAIN INJURY that isn’t reversed magically! We are talking about PTSD on top of it. We are talking about ten years of countless tests, exams, treatment plans, office visits, hospitalizations, 24/7 care by multiple people for over a decade.
I am trying really hard to see the gesture in the heart and kindness and concern it was presented, but it’s coming from a place of VERY limited thinking and understanding. It minimizes the true and actual reality. It also minimizes me in the end.
This product may very well help in some small way, but it would have been realllly nice if you asked me about his disabilities, challenges, injuries, obstacles, etc. ten years ago instead of just now.
So to all the family members out there who talk to their veteran loved ones and hear how great things are, how easy their life is, or see them performing well for a 15-minute phone call…. you got to see the BEST side of him and not the other side of him.
I am the one who gets to see that other side. And deal with it.
It’s also because of my hard work that you get to enjoy that best side of him.
SOOOOO…. to my point:
The first example of the family member I described above, the one who shows compassion and a continued desire to understand, means the WORLD to me.
The second example of the family member who closes their mind by choice…or just doesn’t know any better to open it a little wider…is quite an energy suck.
If you really want to know more, do more, understand more, etc. just keep listening to me when I tell you about it. Sure, listen to him too. I am not trying to minimize him in any way. But you have to see the WHOLE story to truly understand.
In the end your eyes have to be WIDE OPEN to really see the truth. It’s time to wake up, even if it’s a decade too late.
Be that kind of person who opens their eyes, mind and heart. I beg you. Please. Not just for me, but for EVERY veteran out there with TBI issues and/or PTSD issues.
About the Author
Torrey Shannon is a writer, but more importantly a spouse and fulltime caregiver to her husband, SSG John Daniel Shannon (AKA "Dan"). Who survived a gunshot wound to the head in a gunfight in Iraq in 2004. They spent three years of his recovery at Walter Reed Army Medical Center and became the central figures behind exposing the Walter Reed Scandal in 2007. Her husband has severe PTSD and suffered a traumatic brain injury. Dealing with the invisible wounds of war first-hand allows Torrey to bring a human element to the problems our military communities face. She serves at a leadership level for many nonprofits across the nation. When she finds time, she freelances for a variety of media outlets. She is currently writing a book while living with her family in a remote log cabin in the Colorado Rockies.
Read more from Torrey at her blog: Our Life After Combat: Elevated