Coming Home: Families, Courage, and Resilience After Brain Injury

[♫ slow piano music] [Carol] The way I describe it is my husband went off to Afghanistan, and I don't know who the heck came back in his place, but it's not him. [Carmen] She was very, very angry, and very upset, and I can remember feeling like my heart was broken because she said to me, "Don't expect the old Jeannette. Forget her. She's gone." [Tina] You know, I knew something was wrong with him, and he knew something was wrong, but if he couldn't figure it out, he would get livid. Just livid. [Amadeo] Like a flash of light with these flaming pumpkins, and then dead quiet. Silent. And that's what knocked me out. [Jeannette] You don't know where is it coming from, so it doesn't really matter where's it coming from. You're just in there hoping that you'll make it through to the next station. [Tim] It hit our vehicle, and it--literally you'd feel the shockwave pass right through your body, and it was so tremendous that it actually forced the liquid right out of your bladder. [Narrator] It's been estimated that traumatic brain injury affects nearly 1 in 5 service members and veterans who have served in the wars in Iraq and Afghanistan. Many service members and veterans also report having symptoms related to post-traumatic stress disorder. These symptoms often overlap and can occur at the same time. Each person who is injured is different, and the way individuals recover is difficult to accurately predict. Some individuals are able to resume their lives as if nothing happened. Others may have difficulties that last longer--even a lifetime. Research points to a significant relationship between the way a family copes with and adapts to the injury of their loved one and the success of their loved one's rehabilitation and recovery. In the minutes ahead, three veterans who sustained a traumatic brain injury and their families will share their stories of love and support amidst the struggle to regain their lives. [Coming Home: Families, Courage, and Resilience after Brain Injury] ["We are just one family among thousands who have suffered injuries in this war, and we can only hope that our story sheds some light on what these brave men and women endure every day." Lee Woodruff] [Narrator] Amadeo and Carol live in a small rural community. In the past, they were both very active in their community and enjoyed going to the opera. That all changed one morning when Amadeo's unit was bombarded by mortar shells. [Amadeo] The next morning, I felt terrible, like my meat had been ripped right off my bones. I went to the medics, and they pretty much said, "No blood, no injury. Go back to work." And the first symptoms I noticed was that I couldn't judge my work, where to set down this particular item. I'd over-pass it. I'd hit people with it, which is dangerous; you can crush them, kill them. Crane operators--you know--they can set it on a dime, precisely. And if you can't do that, you can't operate a crane. [Narrator] Like many men and women who have sustained a traumatic brain injury while serving in the military, Mado knew that something was terribly wrong. However, he wasn't quite able to pinpoint the problem. It wasn't until he came home on leave that his wife, Carol, noticed the severity of the symptoms. [Carol] He was very anxious, very fidgety, almost so anxiety-ridden I would say it was verging on panic-- looking around, hypervigilant. Anything that was out of sorts or anyone coming in the driveway or a noise going by, he was jumping. Because a noise over there meant something bad. They're in the desert. It's sheer quiet all the time unless something bad is going on. And so I didn't know who this guy was, because he was anxious, and along with his anxiety came some anger and frustration. He didn't know what was wrong, and I didn't know what was wrong. I just knew it was wrong. Mado came home in April. I met him up at Fort Drum. And we'd been exchanging letters and e-mails. I knew what was going on a little bit from what he was telling me. And he came home that one day and said, "Hi, honey, I'm home." And I said, "Not for long you aren't." It was the hardest thing I ever had to do, but I had to send him back up. He got hurt in combat, and the Army owed him some proper care. They at least owed him an acknowledgment that he was hurt in combat. And I knew that it had to start with them. [Narrator] Over the next several months, Carol began filling out paperwork and advocating on Mado's behalf while he received treatment at Fort Drum. [Amadeo] When I first got out and left Fort Drum, I wanted to go back to work-- you know--and to take up my old life and get back to where I was. So about a week or two after coming home, I went down and talked to my old boss and the HR people, and I told them that I wanted to come back to work. So I went back to work, and I tried to work with people like I did before. They were wary of me. I was wary of them. It was a very tough situation. I found myself more and more working all alone down at the shop, where I could smash up old furniture and get rid of it, take out my frustration. Eventually, I had a few incidences with vehicles to where I would watch myself drive off the road and run over a mailbox and then watch myself come back onto the road and then completely-- it didn't mean anything to me. [Narrator] Mado described these episodes as "gray-outs." As they became more frequent, Carol reached out to the Syracuse VA Hospital for answers. [Carol] The way we first discovered that it had to be a brain injury--I had suspicions. I could see him stopping and not being able to find a word. I could see him doing something he could normally do and stop because he didn't know what to do next. There seemed to be some blanks. And one thing the Army did was they sent him to a neuropsychologist at Syracuse VA Hospital. And she did some testing. And she said, "I kind of--I got good news, and I got bad news, Mado and Carol." "The good news is Mado's a very intelligent man." "The bad news is he has some very slow processing going on." And the testing showed that. So we knew right from the beginning that there was a TBI. [Amadeo] When I looked at those x-rays, the doctor says, "See these white spots?" "That's your broken things." It was like--okay. Now I know. This is what's broken. It can't be fixed, but at least it's a relief to know that there's something there--that you're not crazy, that you're not --um--making this up, because that goes through your mind. Am I crazy? Am I making this up? What's going on? [Carol] It doesn't make it easier. But when you have a name for it and someone says, "Yes. You have a brain injury." "This is what it is. We can't fix it, but let's learn how to cope with it." It's a big relief. [Narrator] For Mado and Carol, learning to cope has meant sacrificing many of the things they had shared before. In spite of this, they try each and every day to build on the strengths of their changed relationship while nurturing the goodness that is still there. [Carol] There is a real lack of intimacy that we used to have in our marriage, the hugging and kissing, and just a normal sex life is gone. Because I have to say, "I'm going to hug you now," so he can brace himself so I can touch him without him backing away and me feeling shunned. I've had to learn that. I've had to learn that he now has a personal boundary around him that I can't breach unless I ask. It's affected us in ways that I never expected. Our world has shrunk until there's Mado and me, and sometimes we're not on the same page. We used to socialize a lot with our neighbors, and now we don't. And when we go visit our kids, he's aloof. He finds it very hard to get involved in their lives. Everything seems frivolous to him now. It makes life together very hard. It's on a day-to-day basis. [Narrator] During her tour in Iraq, Sergeant Jeannette Arroyo spent countless hours behind the wheel of gun trucks. Driving transport vehicles on a series of missions deep into combat zones meant exposure to IEDs and other explosive devices. [Jeannette] You know--you're moving around because the trucks move, you're constantly moving. And the thing is, it's at night, most of your mission, so you really can't see nothing, you know. We have to--we have to depend on our vision. And the noise first is supposed to scare you, right? But after a while you already know what it is, so it doesn't really matter. [Carmen] Jeannette was always very friendly, outgoing, always respectful, bright, easygoing. She went to Iraq. We made it a point to e-mail her every day. We started seeing some changes in the behavior, where she would no longer be as outgoing in her correspondence. She did not share whatever she was experiencing over there other than to say that it wasn't a bowl of cherries. [Jeannette] And, like, I noticed that I had nightmares, and I feel like lost, a lot of times. I started noticing my neck hurting a lot, like a shooting pain on my left side. And as time went by, I couldn't--I really couldn't move my neck. So I went and saw the doctor and they just gave me some Celebrex for the pain and a day off--you know--not to go on missions. And I continued to go on missions with the pain, and I should not have done that because it got worse. It got to the point where I couldn't even carry my weapon any longer. [Narrator] After undergoing extensive surgery to repair her neck, Jeannette returned to New York and her adopted aunt Carmen with no idea she was experiencing symptoms associated with a traumatic brain injury. [Carmen] And then she came home, and when she came home, she was different. She was angry. She was angry all the time. She had no patience. She had a constant blink, and I remember that she couldn't focus. You couldn't have dialogue with her because she became easily agitated. It was very, very difficult. It was scary. [Jeannette] She aggravated me a lot because she started telling me things such as-- you know--"Why you blink your eyes so much?" or, "Why you breathe so hard?" Or why I speak the way that I spoke? Why I get angry? That type of comment. She always say, like, "Oh, you're so hyper; calm down, calm down." [Carmen] I did get a call one day where she was extremely angry, almost enraged, and I asked her what was the problem. And evidently someone had cut her off, and she was really angry. She wanted to run them over. She wanted to chase after them. She wanted to hit them with her car. You know--and this was indeed the behavior that we were starting to see. [Jeannette] Coming back home, driving, especially in New York, it's crowded--you know. And I remember driving--driving in the middle of the road. And--uh--I felt comfortable when I was in the middle of the road. Potholes made me very nervous. People crossing, sometimes, in front of you--you know. So my reaction was aggressive as I--with vehicles--you know? They cross--to me it was fun, but I knew--in Group I learned that it was not good. That I was being--I was being aggressive and I should not be driving the way that I drove before here. [Carmen] I know that she started going to the VA, which I was very happy about. She was attending Group, and she was really, really busy. She had a lot of doctor's appointments and group sessions, and she was talking to a lot of the vets at the facility. [Jeannette] The group--the group helped me a lot to kind of open up a little bit more and be--not be so reluctant to follow treatment. So I started seeing the therapist, the psychiatrist, and then I saw Dr. Ben, and they did some tests and everything. When I sat down with--Dr. Ben was the person that kind of helped me understand so much. Because she kind of put a name to everything that I was feeling. So-- [clears throat] so she--she--she put words to all my feelings, and then she said that it was going to be okay and that I have gone through a lot of-- uh--through hard times--you know--at war or whatever, because I couldn't understand that; I never felt that I went through such a dramatic-- I don't feel that way. I don't feel that I have gone through war or, like, that she said--traumatic experiences. I didn't feel that. I was in such denial. But with Dr. Ben, she--I was in Group--we had different type of groups, and I started to kind of learn and understand a little bit more about what I was experiencing--my nightmares, why I was being angry, why sometime I feel like angry and sometime I feel like disoriented and-- So she--she--she kind of gave me a name for everything, and she said that I had, like, a mild TBI. I told her, "Why I experiencing this in school? I can't concentrate, so I quit school." She said, "We gotta concentrate on your medical right now so that later on you can move on with your future, and you can go back to school and do whatever you want." [Carmen] She loves the military. She loves her fellow soldiers. She wants to help. She wants to help. And she wants to get better, and that is--um--that's a good thing. That's who Jeannette is. We're grateful that it's getting a little better, just a little better, and that she's getting some of the help she needs. [Narrator] A traumatic brain injury can literally stop a person in their tracks, taking not only their sense of time, place, short-term memory, and connection to the outside world but also their connection to their family. Tim was no exception. [Tina] So he came home, and one of the first things he did that was just not typical of him is he slept for--if you left him there, he would sleep for days. [Tim] When I got back home and started to integrate back with Tina and the kids as a family, there wasn't any real connection. I didn't have any emotional feelings. [Tina] He didn't remember where we had gotten married. He didn't remember any of our roads right here, locally, at all. I couldn't send him 10 miles from the house, because he couldn't get home by himself. I used to call her, talk to her on the phone while I'm driving to say, "Where am I supposed to turn now?" And she would say, "By the big white barn," or "By such-and-such town." And I'm like, "Well, where the hell is that?" [Nicholas] We used to all go fishing and whatnot, but then after he came back that kind of stopped because he didn't quite remember where to go, where we went fishing, or even how to fish, so-- [Tina] He didn't go visiting with people, because he didn't remember who they were. [Narrator] Prior to his injury, Tim and Tina spent many years together building their home and raising their three children. After his return, working in construction was no longer possible, and parenting became difficult. [Nicholas] He'd get mad at, like--hmmm--trying to read a tape measure. And everything--like some of the simplest things he couldn't do and he'd get mad. [Tim] The next thing you know, the saw is going through the air, the board is flying, and the tape measure's broke, and then I would turn that same anger onto her or the kids or whoever happened to be within range, and they would catch the full brunt of the anger and the frustration even though it wasn't anything that they were doing. It was just they became the target. [Brianne] I think it's more that he couldn't remember how to do it, and that's why he would get mad. I don't think, like, he got mad at us; he got mad with himself. [Tina] Of course, PTSD was diagnosed immediately, and it took probably until the end of 2008 for somebody to start recognizing that he might have had a brain injury, but they didn't really know what they wanted to do with it, and actually they told us leave it alone and he'll eventually get better on his own. Just getting him diagnosed, I think, he has been a big struggle. [Narrator] During the last year, Tim has received a variety of treatments for his traumatic brain injury, including hyperbaric oxygen therapy through participation in a Louisiana research study on its effectiveness in treating TBI. Tim and Tina feel that it has been very beneficial for Tim and, in turn, for their entire family. [Tina] Just day to day, brought back his personality. He hasn't been on medication in almost a year now. He's gone back to running. The second time we went down for treatments, his average was 7 to 10 miles a day he runs. And that's on top of all his extra physical--you know--PT as well. When he first had the injury and he came home, he did nothing. Not a thing. He couldn't. He was too tired. He just couldn't do it. [Tim] I feel almost like a new person. My energy levels have skyrocketed. Just the--my mental aptitude, getting that eagerness back to experience new things and get back into the things that I used to do it back. I mean--I'm enjoying things with my kids. Since the treatment--I mean--I'm enjoying life. I feel alive again. I'm happy. [Narrator] The overall success of any treatment plan involved a variety of approaches including rest, physical therapy, medication, and learning aids. However, supporting a family member with a traumatic brain injury also means helping them mold a new structure for their lives and coming to terms with the realization that although they may not be the person they were before the injury, there can be joy, love, and fulfillment. [Tina] Short-term memory is still affected, so the kids have had to pick up on that side of things, and just--just general things. I mean--they know Dad's not as happy as he used to be, and they know he can be moody, so they plan what they're doing based on how he acts during the day. Yeah, they've learned to pick up on a lot of things when I'm not there to physically do it to help him--to help guide him. [Jeannette] They gave me a GPS. They gave me a GPS, and ever since, I am the most independent driver in New York City. So that--that was very helpful. I also have a recorder, and there's different files within the recorder where I could talk; when I feel sad I could record it so I could understand myself better. [Carmen] She always strategizes because she recognizes that her recall is not that great. And so now she does--one of the things that she does that she talks about frequently is that she laughs at herself now. She is able to do that. She doesn't get so bent out of shape. We talk about it, because I forget things too. So I identify with her, and we kick it around a little bit, and it's kind of fun. [Carol] I would like Mado to find some peace. I'd like him to learn to accept his limitations, and not to say to settle for them-- I mean, you can always strive to improve. But there has to come a place of acceptance that this is the way it is now. And, okay, once you get to the point of acceptance, I think you're at the point where then you can look at how you can improve. [Brianne] It's hard both ways. Like, having a dad with a brain injury and then having a mom who had to dedicate all her time to your dad because of his situation. So just basically to take it day by day and try to understand it from both sides. [Jeannette] To a family member that's welcoming their soldier back home, it's to be there for them, to understand that they may look, act different than what they were before, but their essence is still there. [Carol] You've got to find every single resource that's out there. You have to exhaust it and then look for more. You're never done. It's a constant battle. And we've learned there are some very good people who can help. [Tina] Don't ostracize them because they're not who you knew they were. That has been a huge issue for us. Different people that don't call anymore or don't come around because he's not the way that he used to be. He's not all smiley all the time, and he's not hunting and fishing and all that stuff. It is coming back, but once people have done that to a soldier in their--it's not just a soldier that they're doing it to; it's their family too. It's kind of hard to forgive something like that, because you have a soldier that is at the lowest point that they've ever been at their life, and you're pretty much kicking them in the teeth. And that's just things that are, to me, unacceptable. [Carmen] I know that there are some limitations and she's got to work at getting better. But I don't believe that the old Jeannette is gone. She's still here. She just needs some help. [Amadeo] All in all, the retirement, going back to school, knowing--being able to pinpoint the problem--it makes me feel, at least, there is a future. You know--whatever it brings me, okay. [Tim] What I foresee in our future is that we actually have one. I mean, there's hope for the traveling, the being together, and enjoying things together as a family. [Jeannette] Don't--don't remind--don't remind them of what they used to be and what they are like now, or just be gentle or tactful when you do so. But--um--just make them feel home, you know? Make them feel a part of--a part of--give them time. Give them time. That's all--you know. Just give them time. [Narrator] For family members or friends, supporting a service member or veteran with a traumatic brain injury can seem at times overwhelming. Sometimes it is hard for families to adjust to the changes in abilities, personalities, and behaviors that may result from a brain injury. With dedication and commitment, family members can help their injured loved ones throughout their recovery, making a difference today and all the days that follow. [www.bianys.org] For more information on traumatic brain injuries, visit the Brain Injury Association of New York's web site at www.bianys.org. [Brain Injury Association of New York State, 10 Colvin Avenue, Albany, New York 12206] [Telephone: 800-228-8201] [The Brain Injury Association of New York State (BIANYS) is a statewide membership organization that advocates on behalf of individuals with brain injury and their families and promotes prevention.]

"We are just one family among thousands who have suffered injuries in this war, and we can only hope that our story sheds some light on what these brave men and women endure every day." Narrated by Lee Woodruff and Dave Hughes, this video shares stories about military men and women who sustained TBIs and how they are living their lives now.

Posted on BrainLine April 1, 2011

This project was developed by the Brain Injury Association of New York State in cooperation with the New York State Department of Health, supported by project H21MC06742 from the Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. This material is public domain. For more information, go to http://www.bianys.org.

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