A relatively new blogger on the caregiver scene wrote a fantastic post about her feeling a need to explain or apologize whenever her wounded warrior has a good day. He’s able to participate in the family on these days. He’s able to get out of the house on these days. They feel like they have to justify monies spent on a family dinner. Worst of all, it opens up their exposure to insensitive comments about how ‘lucky’ they must be to not have to work or how fortunate she is to stay home as a caregiver on a full-time basis.
I could relate to every single thing she discussed. I am betting there are many more who can relate too. Can you?
Here is the original post, which I would like to address here with my own opinion and experience of the issue:
Specifically, I want to quote the following from her blog…
“It isn’t just the motorcycle that makes me feel like I need to explain and apologize when we act normal. If we take the kids to dinner or go to a movie I feel like I have to (take an extra mortgage out on the house to take 6 people and) explain to everyone that it has been a very good day for the hubbyman and we were able to get out of the house, but this doesn’t happen all the time. I think I know why I feel this way. I, like many other caregivers and disabled veterans, have been the recipient of the dreaded “oh it must be nice to get paid to stay home” remark. I have also heard, “he doesn’t look disabled” too many times to count. I have also been told by other wives of disabled vet’s “I wish we could live off his disability” and “Why can’t I can’t paid to stay home? Why are YOU so lucky?” These statements in any form or version make me want to lose my shit and bug the fark (see momma I didn’t say the “F” word! hahaha) out on whoever was DUMB enough to say it! I think it irritates me so much because I can’t think of a single polite way to respond. What I want to say is something to the effect of “You are too stupid to keep sucking air. Get out of my face!” or something sarcastic like, “Oh yes, because the hubbyman is SOOOOO lucky to have fallen 27 feet and broken his back in six places at the age of 27. I wish everyone could have been that lucky!””
“What I usually do is remember to breath, smile, and say politely, “Not every wound is visible, but I agree that the country needs to do better about taking care of it’s wounded warriors.” or “We budget every dime we get. It’s not easy to manage a family of 7 on disability and caregiver pay. The hubbyman would LOVE to be able to work, but he simply isn’t able to.” Let’s be honest, the hubbyman is a man like any other. He has struggled (and STILL struggles) with the fact that he cannot physically or mentally get up and go out and work to bring home enough to support our family.”
Lastly, and probably most importantly…
“PLEASE FOR THE LOVE OF ALL THAT IS HOLY don’t ask my hubbyman how he got hurt or if he has killed people. Don’t ask those questions of any combat veteran! It sets the veteran off and puts us wives into a tailspin because it can cause our veteran’s PTSD to flair up. Flashbacks are a bitch (sorry momma I couldn’t say it any other way) and they can happen to if our veterans start talking about and reliving their war stories. If the veteran wants you to know those kinds of details he will tell you (or give his wife permission to talk about it on her blog…ya know, whatever the case may be).”
In my world, it happens almost every day
Like I said, I could relate to her post on many levels. I’ve written about elements of these issues before but it has been awhile since I’ve mentioned it. Just last week I hesitated to post a picture on Facebook of a fabulous steak dinner that my husband and I were enjoying at a restaurant while we were out of town. I wanted to explain and re-emphasize (which I think I actually did to some degree in my comments) that we don’t eat out for multiple reasons: We can’t afford it unless it’s a rare occasion, and this was a rare (and special) occasion. We live in such a remote area that dining out is a major event just to DRIVE far enough to get to a restaurant. I cook every night regardless of how tired I am because there is no drive through or pizza delivery. And, in the case of this specific dinner splurge, it was on special.
Why do I even feel like I have to explain?
Well, I’ll tell you why. Just like the above-blogger said, we get insensitive comments from others who assume too much. I was even stalked by an online group who said that my husband was ‘stealing their hard-earned tax dollars”! They went absolutely bat-shit crazy when they later found out (through their continued stalking) that my husband’s student loans were forgiven due to his disability, and I was teaching others how to apply for the same benefit too.
I know I need to work on my need to justify the good days, the good moments, the good times, but it’s hard to do when people who don’t even know you feel like they know more about how your life should be lived than you do. It’s a guilt complex, in part, but it’s also a pre-emptive need to ward off attacks that we know will eventually come. At the very least, insensitive comments that pop up when you least expect it.
There are only two days a week that my husband leaves the house, and those are the days he goes bowling. We chose to regularly go bowling because it also serves as physical therapy for him. PT is hard to acquire through regular VA channels so this is our ‘outside the box’ approach to his ongoing need for treatment. It forces him to get out of the house. It forces him to work on his depth perception (because he only has one eye). It forces him to remain upright and balanced. It improves his self esteem. It took years, actually, for him to get comfortable enough to trust all the people who are with us on those days. He’s still on guard in this environment, but the support of our team mates has resulted in this success for him. I am truly thankful for our community for their supportive part in this journey.
However, even with our amazing community support, there will always be that ONE person who assumes that if he is able to walk and talk or throw a bowling ball, he has no right to a handicap parking space. Or, perhaps it’s another person who assumes he functions at this level 24/7. Just the other day we had a conflict. Our son was advocating for the bowling alley management to turn the TV’s to a benign channel like the Weather Channel so that my husband would not be exposed to news about the Boston bombings. Management insisted the news remain on for the rest of the customers. You can imagine how helpless our son must have felt in not being able to minimize his Dad’s exposure. We just do the best we can with what we have and navigate through this difficult world as best we can.
What I am trying to say and share here is this:
If you are a caregiver like me and the blogger quoted above, I believe we NEED to continue talking about these struggles. We also need to celebrate the good days and not feel guilty about it when they happen. We need to share those stolen moments more than we tend to do.
For those who are not in our shoes, please keep reading our stories. Take a few minutes of your day and try to understand the world we live in. We don’t necessarily expect you to understand it on every level, but on the most basic levels. It makes my heart sing when I get comments on this blog from readers who say things like “Wow, I didn’t realize or look at it this way. Thank you for opening my eyes!”
In order for us to remain sane in a crazy world, we need to celebrate the good days. We need to splurge once every few months and do something ‘normal’ for a change. We don’t sit around doing nothing all day. We work our asses off, and if one night of no cooking and no dishes bothers you that much then the problem isn’t with me…it’s with you.
Sound off! Do you fall into the trap of feeling like you have to explain or apologize for your good days? Are you on the outside looking in and now see things just a little bit differently by reading our stories? I’d love to hear from you in the comments below. Please consider sharing this post elsewhere to continue the discussion. Thank you!