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Are You in the Club No One Wants to Join?

Comments [4]

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.

BUT….

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

Comments [4]

One of the best articles/descriptions I've read... thank you thank you thank you.

Feb 8th, 2017 4:26pm

I am a TBI survivor, fortunately my case is fairly mild though I still can't work or get SSI. 

Very few people will ever understand what survivors and caregivers go through. People just don't get it. Think that will power or some product will magically make everything normal. Even some doctors don't fully understand. Most don't know about my brain injury. I don't tell them because I know they won't understand and think I'm just making excuses. It's a lonely road. I rarely put myself in situations where I'll have to deal with people. It's unfortunate, but we have to accept our new reality and deal with life the best we can.

Thank you for sharing your story. I wish normal people would read the posts on this site, but, of course, they won't. 

Feb 8th, 2017 2:14pm

My husband of 33 years lives with PTSD & TBI from military; therefore I live with it too. Seems I understand the effects more than he does or cares to find out. He was medically retired early & our lives have changed completely. I tell him he's different but he says he "doesn't get it". Our marriage is crumbling, I can't get through to him, I no longer mean anything to him yet I'm the only person who has stood by him. I'm suffering greatly with the after effects of war-the emotional life changing events you can't see but you feel & it changes you. He won't see anyone because it would make him vulnerable & weak. He will talk about anything except what it feels like to walk around everyday with injuries that will never go away. I feel absolutely useless; so his injury is my injury & I can't cope either. So where does that leave us? It leaves us in a sea of heartbreak & emptyness & most likely divorce court.

Dec 25th, 2016 10:10am

Reading your story was like reading about my life since my son returned back from Iraq. He had 2 tours and was hit by 2 IEDs on separate missions during ground fire, the 3rd was other soldiers blowing up enemy's weapons. They used way too much and my son and the other SGT were blown into a stone wall head first and knocked unconscious. Each time he was knocked unconscious but due to being under direct enemy fire they put him right back in the fight. He had a real hard time in Mosul. He lost 4 best friends practically right in front of him. My son was diagnosed with TBI, severe PTSD, depression/anxiety, cysts all over his body which nobody knows why and it scarring on many different parts of his body. He lost 80% of his hearing in left ear, 40% in right. It's been almost a year now and the VA still has not given him his hearing aides. He's only at 70% disability rate, he's gone without income for 4 years, and child support was mandated but he has no income. Of course, he should pay child support but with no income my husband and I have been paying for it each month, also paying for his doctor visits and medications. We are in debt. We wanted to retire in 3 years, but now there is no way we can. I would do anything for my son, he's such a loving, caring person, and you are so right about family not bothering to read up about TBI. His father, to this day, has not. My son has a hard time finding friends and when he does they are not the type he wants to hang around, as they are not trustworthy.

But getting back to this TBI, nobody understands it until they have gone through it or are going through it.  I applied through the VA to be my son's caretaker because I've been taking care of him financially, medically, and emotionally for 5 years but they turned me down. I cried my eyes out, how could they say "no" when I've been caring for him for over 5 years -- including going to Germany 4 times to help him? He did his 4 years, came home with over 10 awards/medals by age 23. These soldiers, every single one of them, needs to be taken care of much better than they are! It's so sad how they are treated and the VA could care less. They wonder why these poor veterans are committing suicide? It's all because of the games the VA plays with them! They wait, wait, and wait, and wait, get sent to jail for nonpayment of child support when they have nothing.

Now my son has been in a car accident. He lives 4 hours away. He called me right away and said nobody was hurt but they all went to the hospital. I couldn't find my son anywhere. Finally, I got a call from a hospital telling me my son was there. Someone found him roaming around a city, bleeding from the arm and brought him to the hospital for stitches. He doesn't remember the car accident at all. I'm so scared. I don't know what to do. I do know I do NOT want a VA Neurologist touching my son. When they met with him to determine the % of disability he was at, they spent only 4 mins with him. I was there the whole time, it was so unprofessional and uncaring. This doctor either didn't know what he was doing or just didn't care. My son has no benefits either and no medication coverage. I applied for SSDI for him but the VA somehow messed it up and said he was fine to work! My son has been homeless, no car, no money, needs help with TBI and PTSD, etc., and they couldn't fill out the paperwork correctly? I want to cry for all my son has been through and lost. Now I'm so worried about why he doesn't remember the accident when he was in the passenger seat.

Thank you so much for sharing your story, it meant so much to see and hear what a STRONG WOMAN you are, and it gave me hope to carry on being strong! If you have any questions or feedback it's fine! Thank you so very much!
-- A Mom who loves her Veteran Son with all of her heart and soul!!

Dec 21st, 2016 9:18am

 


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