What is the Hardest Part?
We asked all of the Veterans we interviewed to tell us about the hardest part of their condition, the most difficult thing to navigate, or the one thing they wished they could change.
Coping with society
For some Veterans, the hardest thing was coping with society and perceptions of Veterans, which are often inaccurate. As Mike described, “when you go overseas and live like tragic incidents and stuff there’s no way of getting back into society because you’re seen as a monster.” He wishes people would learn more about TBI and PTSD instead of being afraid, and if people have questions, he encourages them to ask. Others described feeling like a “fish out of water” and missing the camaraderie and structure they had in the military. Although she would like to say it was the injury itself, Sarah told us that the hardest part for her was the public perception of the injury and of Veterans in general. She feels like the general view is that - “Oh, she’s a Veteran, she’s crazy” which like yeah, some of us are imbalanced. But, it would be nice to not be perceived in a negative way.” She wishes that people would realize that Veterans are not “broken” or “weak” and would “have more empathy and sympathy towards us.”
Sarah says that the hardest part is the public perception that Veterans are “crazy” or “incapable” or “weak.”
Sarah says that the hardest part is the public perception that Veterans are “crazy” or “incapable” or “weak.”
I mean I’d like to say the, the injury itself, but honestly, I think maybe the public perception of the injury. Or the public perception of Veterans with PTSD in general. We’re like, you know, “Oh, she’s a Veteran, she’s crazy” which like yeah, some of us are imbalanced. But, it would be nice to not be perceived in a negative way. I think everything that you hear in the news, and I mean, even with the best of intentions. The whole 22-a-day thing, like now everybody’s like “Oh they’re a Veteran. They’re going to try and kill themselves.” Which isn’t the case and it wasn’t the intention of the movement starting and the public just kind of takes it and takes on a life of its own. So, if I could change any one thing, that would be public perception.
I: Yeah, what would you like them to hear instead of, or perceive, or know?
That we’re not, that we’re not broken. That we’re not weak. I think they perceive it as like, almost like, and I know it’s, it’s met with the best of intentions. Like they have empathy and sympathy towards us. But I think on the receiving end of it, it feels like pity. And that’s really hard, to go from being in an environment where you’re so strong and capable to being perceived as like just weak and incapable. That and the hero word bothers me, and I’ve talked to a lot of other Vets and like even people who are still active duty, that it really bothers them. I did what I signed up to do. Like the heroes are the guys that died so that I could come home. My buddies that didn’t make it back. In my eyes, and I think in a lot of other Veterans eyes. We appreciate the, the sentiment, but it’s definitely not how we want to be perceived. Like we went, we did a job. We have some issues that have resulted. We’d love the support but we don’t want the, I don’t, I don’t want to be idolized or put on a pedestal and like, “Oh, you served, like you’re a hero.” Like no, I’m not. I signed on the dotted line and raised my right hand. I went, I did my job. There are guys that went far more above and beyond and I think those are the ones that should be acknowledged more often.
Mike says the hardest thing for him has been coping with society.
Mike says the hardest thing for him has been coping with society.
Coping with society. When you come back they give you, like a 96-hour, day-off pass to where you, get back, where you’re supposed to get back with society and realize, this is what society is up to, this is what’s happening and this is how it goes. But, I mean, when you go overseas and live like tragic incidents and stuff there’s no way of getting back into society because you’re seen as a monster. But I mean people don’t really understand like the pain and stuff that we go through and the day to day life that happens but, you just kind of cross your fingers and - I like to tell people - especially my family that, if you’ve got a question about something, come to me and ask. And they understand it, and, I mean, they ask me questions about anything. My sister did a research project over PTSD and TBI, yeah, I gave her some information and stuff about it. But, I mean it’s, like I said, you’re seen as a monster. And, as Veterans - I’m speaking for the Veteran’s behalf - we always encourage people to go out and ask us if they’re afraid or, or something and just say “hey, thank you for your service” and actually mean it, and not just do “oh, thank you for your service, we really appreciate it.” Like, go out and learn something. I mean, that‘s what we want.
Impact on social interactions and relationships
Others talked about the impact of their symptoms on social interactions and their ability to develop relationships. William used to get a lot of enjoyment out of “verbal sparring” – he was witty and very sharp about his communication. He feels like he has lost a lot of that which has had a huge effect on his job and his relationships. Some of the Veterans we talked to said the hardest part was the impact of their injury on their ability to develop and sustain romantic relationships. Joseph wonders if he would have started a family by now and suspects that he would have had much healthier relationships if he had he not sustained a TBI.
For William, the hardest thing about his injury was losing his ability to be “really sharp” about his communication.
For William, the hardest thing about his injury was losing his ability to be “really sharp” about his communication.
I can’t communicate as well as I used to. I used to be really sharp about communication. I used to be super witty. I’ve lost that, I’ve lost a lot of that. So, I don’t have that ability to verbally spar with someone, debate, those kind of things, you know? That’s gone. Because I need so much help to – like if I wanted to be on a debate team now, I just like, I need so much. You know because I can’t pull it, I can’t recall it. It’s affected my job, my performance in my job. It’s affected my relationships, you know, with a lack of communication. I still can’t sign very well. Yeah.
Joseph suspects that he would have had an easier time with relationships if he didn’t have a TBI.
Joseph suspects that he would have had an easier time with relationships if he didn’t have a TBI.
I think it would be a lot better. I mean it’s…
I: What would be different?
I suspect I would actually have healthy relationships. Well I beat myself on the ground, telling myself that I’m ugly rather than other things. I’m aware that I’m a good-looking guy. I’m aware I’ve got a lot going for me. I’m aware that I’m like a great catch, and yet even getting a second date is a rarity. I – oh, my gosh. I guess I derive a lot of happiness from that aspect of my life more, a lot of happiness in the opposite thereof. But it’s one thing. I think – 31, I probably would have started a family by now. It’s, it’s not the end of the world that I don’t have these things. I’m, I, I accept that I won’t have these things. I’ve – [accepted that] part of life, not everyone is a beautiful, unique snowflake and that’s, and that’s why not everyone gets – what we almost assume is expected from life.
Memory, concentration, and overall cognitive ability
Some Veterans said that the hardest thing for them was the impact of their injury on their memory, concentration, and overall cognitive ability. One Veteran told us that the hardest part was “the short-term memory issues, that I can’t remember. That’s what irritates me, frustrates me. The ability to not concentrate effectively.” Luke sometimes feels “less safe” and like he doesn’t have “command presence” or “control of the situation” when on the job as a police officer.
Jake used to blaze through tasks at work, but now has trouble concentrating and lacks the laser focus and direction he once had.
Jake used to blaze through tasks at work, but now has trouble concentrating and lacks the laser focus and direction he once had.
Direction. And I think a lot of that comes from the focus and the concentration because the under stimulation and the inability to focus. I’ve always been, I’ve always been just laser focused. I’ve always been, I take on a task or I take on a goal, I take on anything and I just blaze through. That’s why I was always in charge in the Marine Crops. I was always in the lead and I always, that’s what made me good at my job. And now I just kind of stumble around or it’s like I get stuck in bed because of the pain and then it’s like “this is, this is really all you, this is really all you got, you’re going to let this beat you?” You know. And then it’s me arguing with myself, like “get up” you know and I try and it hurts more, like even more, and it’s like you’ve spent your entire life, this included, doing mind over matter and all the pain management, everything that you taught yourself, and all the meditation, that’s another thing I did at the TBI clinic was meditation and stuff - and I mean I’ve done so much and then it’s like, and find more, and it’s always rise above you know and, and it’s not like I just, “oh, you got blown up, came over” or you know, “oh you fell, you hurt yourself, boohoo put a Band-Aid on it and cry about it,” you know.
Its every moment since, I’ve been trying to, its been leading up to like you know getting past this stuff and that’s the thing is just, I don’t feel like it’s going to be, and I’m not stupid enough to think it’s just going to be like oh one moment, you know. It’s going to be this time or this day, this year is going to be the day that it all just gets better because I made it better or because you know this this something makes it better. No, I understand it’s going to be a process and I’ll eventually you know get to where I need to be. But, it, I’m not feeling any frickin’ breakthroughs that are going to get me there. And that’s the tough part is that laser focus is not there. That that direction is not there.
For Luke, the hardest thing not having the mental sharpness he used to and feeling like he isn’t operating at full capacity.
For Luke, the hardest thing not having the mental sharpness he used to and feeling like he isn’t operating at full capacity.
It’s frustrating because I feel like I’m not operating at full capacity a lot of the time as far as, you know we’re always supposed to be growing smarter and stronger you know, up to a certain point, as we grow older. I feel like I’ve taken a little bit of a regression, so the things that came really easy to me in the past, so memory, recall of information, being able to, you know, react in a situation and being able to talk my way through it, whether it was interviewing and stuff, those things come to bear like pretty much every day when I was working patrol for the Sherriff’s Office. Because now I’m interacting with people who have this chaotic situation, you know. It may have taken them 20 years to screw up and now they’re asking me to come in, in ten or 15 minutes, find a fix for it. So, whether I’m acting with people who are aggressive or violent towards me or I’m dealing with multiple individuals that couldn’t find some common sense amongst them, so now I got called to deal with it and now I’m trying to separate these parties. When I get in the midst of an interaction with the citizen and I’m on work and I’m obviously in uniform and shaved and pressed and polished, when I get stuck on something in a conversation and there’s that pause, it makes me feel less safe, like I don’t have command presence, like control of the situation.
And that’s, like it’s a huge piece of officer safety is whether you have a good command presence and whether you can exude authority, even though you may not have the answer at the time, people still think you have the answer or are giving them the answer. You know, a lot of the people that we deal with, if they detect or smell weakness on you, they’ll take advantage of that immediately because that’s what they’ve been doing their whole lives, is manipulating other people to their advantage so, and that has to stop with us, when we react to that situation, so. Whether it’s because I’m already having a headache and I’m dealing with that or because I’m fatigued because I didn’t sleep from the last night headache and I, I notice myself starting to slow down a little bit or, that’s probably like the biggest impact. Like headaches and pain and stuff I feel like I’m, I’d rather have that than a multitude of other issues, medical issues, right? But if I could change one thing it would certainly be being able to continue to have that sharpness and so that, that kind of, you know, looking back that kind of made me mad when I went into, to get rated or to do a rating determination and they said, “Well you scored really well on this test.” And I said, “Well that’s awesome, but what are, you know, what are you comparing that too? That’s not the best that I can do,” you know, “but if you’re using the bench mark as other people who have taken the test, these guys are going to have vastly different injuries and experiences and I’m sure a lot of them were way worse than mine,” you know.
Others talked about not being able to take on more complex jobs or needing to adjust their aspirations because of the challenges they faced.
For John, the hardest thing about his TBI was the inability to take on more complex jobs that would give him a higher salary in retirement.
For John, the hardest thing about his TBI was the inability to take on more complex jobs that would give him a higher salary in retirement.
Well, for me it was an inability to take more complex jobs, which would give me a higher retirement. I would have got a higher grade, and my primary said, okay, because I got offered a job as a human resources assistant, which would have given me a couple more grades.
She said, “Look at it this way. The stress is going to be higher, you’re going to have a lot more to learn, it’s going to be harder for you to learn that. Are they going to be patient enough to allow you to take that time to learn it? And headaches are going to start earlier, and they’re going to be fiercer by the end of the day. So, is it worth it to you? And are you going to be willing to take more severe pain longer,” and you get tired.
Pain, Balance, and Other Physical Limitations
Some Veterans pointed to persistent physical limitations as being particularly challenging. Ongoing problems with balance, vertigo, headaches, light sensitivity, and pain were common across the participants interviewed. For one Veteran “it’s really the dizziness that gets to me, because it really impacts my quality of life. And unfortunately, it’s an everyday occurrence. I mean, sometimes multiple times.” Another participant talked about his inability to relax as the hardest thing, noting that his toes are always curled under and digging through the soles of his shoes and the he finds himself constantly shifting, fidgeting, and feeling tense. Others found that they were more apprehensive physically and no longer enjoyed sports or other physical activities.
Erik says that hardest things about his TBI are the loss of memory and the excruciating headaches.
Erik says that hardest things about his TBI are the loss of memory and the excruciating headaches.
It’s tough between the, the loss of memory and the headaches. The headaches are intermittent, they only happen every so often, but they’re so excruciating and they’re so terrifying for everyone in my family to see me go through. But on the other hand, the memory’s all the time.
But it’s not debilitating. It’s a pain in the ass, but it’s not, it’s not hurting me, you know, physically. So, it’s the pain or the memory.
Tom is always tense physically and his biggest frustration is now knowing how he will feel from one moment to the next.
Tom is always tense physically and his biggest frustration is now knowing how he will feel from one moment to the next.
Just being, just relaxing. Usually my toes are curled like this, or, digging through the souls of my shoes, or, constantly shifting like this, or, popping my ears, or, just tense internally. Just always tense physically, even when I’m trying to relax myself, and I think that’s made me uncomfortable for so many years that in a way I’ve gotten used to being uncomfortable and that’s probably been, like, the biggest frustration is that, you know, one day it’s OK, one day it’s not OK, one minute its OK, one minute it’s not OK. You know, I feel fine now, but when I leave here, I may not, you know. And that sucks. Inconsistency, it’s destroyed relationships over and over again. And friendships. And, and I don’t mean just like significant others or anything, but you know it is a really hard growing up experience, being 17 and leaving for the military and having to deal with a lot of this on my own since, because I don’t have really any support from family. I do from my dad and my step mom, but we weren’t talking for years either, before, and now I’m not talking with my mom or my step dad and I think that’s probably been the worst part is that it’s been very isolative in my head. Isolation and to even be me, with me, is fucking difficult, every day. It’s really hard to keep level.
Before his injury Marcus was very active, but he is now more “apprehensive” about playing sports.
Before his injury Marcus was very active, but he is now more “apprehensive” about playing sports.
I think the hardest thing is the physical part, like I was always a physical person, an active type person, before that happened and all that has changed. I’m limited as to what I can do. I guess in a sense what it’s like is, certainly not as devastating but for someone who becomes paralyzed and they no longer have the use of their limbs or can’t do certain things, well that’s basically what happened to me. I can’t walk too far, I can’t do activities that are too strenuous. There’s a lot of things that I can’t do physically that affect me.
I: Can you say more about that, like some of the things you used to like to do that -
Of course, I was always, I played sports, always sports. I loved to hike, I loved to, you know just play basketball with the guys, football, I played flag football in the olden days, just being, deciding when I wanted to do anything at any time, you know what I mean. And now I have to be apprehensive about that, and I struggled with that for a long time because I was determined, in the very beginning, I was determined that this was something that I was going to beat. And I just kept trying and trying, falling down and having these issues, and it just, it’s something hard to swallow, to accept it, it’s just nothing is changing and now, 2005, that’s, years later I’m still the same. There’s so much that I had to learn to accept. And that’s what I’m attempting to do these days, accept it.
(See also: Reintegrating into Society; Public Perceptions – and Misperceptions - of Veterans; Impact on Family; Navigating Social Relationships; Impact on Cognitive Function; Ongoing Physical Symptoms)