“Edgar”
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Motivated by a desire to “see the world” and follow in his grandfather’s footsteps, “Edgar” joined the Navy in 1980, and spent the next 26 years making a career in the military. He enjoyed what he did and is proud, explaining, “I was kind of a work hard, play hard type of guy.” He was deployed to Desert Storm doing AA support, mine warfare, and boarding vessels for contraband. Shortly after his time in the Gulf, while out at sea, “Edgar” fell ill for a week with fever, night sweats, and blood in his urine. Despite various medical tests, the source of his symptoms was never determined.
Upon returning to the States, he began experiencing chemical sensitivities, mood swings, aches and pains, and sinus issues: “Muscle soreness and different types of things would last longer than normal, just little things. I would be sicker longer, get a lot more head colds.” “Edgar” had a series of anthrax shots to prepare for a later Middle East deployment, when he started having more muscle issues involving tension, loss of control, twitching, tingling, and numbness. He began documenting his increasing symptoms over the years, including migraines, skin irritation, sinus infections, and cognitive and memory problems. He described pain that lasted for weeks as, “dullness and deep burning pain throughout my whole body being sporadic, no rhyme or reason…I would start having paralysis in my legs.” “Edgar” felt isolated from the world and his family because he felt nobody understood what he was going through. “People have a hard time, and I know for myself of uncertainty. Knowing what’s wrong, not knowing, being disappointed by each doctor call.”
“Edgar” saw many military doctors during his service, but it was his civilian primary care physician his wife encouraged him to see who suggested he might have Gulf War Illness. He then went to VA to be evaluated and register for Gulf War Illness. Over the next two or three years, he received numerous tests and treatments, but his symptoms became progressively worse: “At one point I didn’t know whether I was coming or going…it was some dark days.” “Edgar’s” son also experiences symptoms he believes are linked with his exposure in the Gulf. His wife has been supportive and strong for the family and reminds “Edgar” to stay focused on his son and not dwell in the negative. “Edgar” realized, “When you’re going through this, your whole family’s going through it…stronger if you go together as a team.”
“Edgar” copes with his illness by focusing on positive things and helping other Veterans, with whom he has a bond of shared experience. Support groups helped pull him “out of the dark” and taught him how to deal with pain and emotional issues. He stressed that Veterans “need an outlet. They need support groups because they need an open door. They need to be known that they’re being heard.” “Edgar” emphasized he will do his best to lead by example: “Today I accept that, hey there may not be a cure for what I have, but I am alive today so let me take what I can and do the best I can and maybe I can help someone down the line.”
Properly documenting everything will help in the long run, in “Edgar’s” experience.
Properly documenting everything will help in the long run, in “Edgar’s” experience.
I would just say take care of yourself, document everything. If you’re still in the military make sure you document everything you record everything. And that’s what I did, I listened to a wise person and more people would probably get more help if they properly documented everything. Don’t be afraid to document it because this and that, you want to document everything I would say. Because this day and age something connects to something and the more they have the more they can diagnose. I think the more information is good on something like this. I know, you know it’s early on and as more time goes on more of it will be revealed but I think it’s time to get more answers, I think. And the more people that come up and talk about it the more information they can, the more data they have the more information they can isolate and pin down I think. I know it’s not easy for everybody, especially wasn’t easy for me, at first I was as I said I’m a procrastinator when it comes to stuff like that. I was like not raised that way. So I had to go against my edge. And, I had to get on my knees and I had to beg for help.
“Edgar” started experiencing symptoms while deployed but didn't think much of them until looking back.
“Edgar” started experiencing symptoms while deployed but didn't think much of them until looking back.
So looking back, first thing I noticed that happened to me was actually when I wasn’t over there, in the middle, we’re out in the sea, out at the very tip of the Gulf, and I was getting sick. And all of a sudden I was coming down with night sweats, really bad fever, sweating and I had blood in my urine. And this went on, persisted for a week you know I didn’t think much of it like I said maybe whatever I’ll fight it off. But it finally got to the point where, I finally went over there into my medical, guy goes, hey don’t bother me it’s Sunday. But he says, you know he says, this takes, give you this medication and we’ll see what happens. So anyway, I did get through it, it was about a week. And they gave me, they told me a couple things, anyway and I got, when I finally got back like a month later they did a full scope analysis where they did a workup on my kidney’s and my whole tract, they couldn’t find anything wrong. So, and they said, maybe it was kidney stones. And I says, no I mean I would have known it was kidney stones because the first thing is, it’s like painful when you try to urinate, well I didn’t have any of that. Says, well you know maybe you just were super dehydrated. I said, okay. So I didn’t think anything of it. So that was my first incident. And then, when I got back I didn’t really notice it, but I was a little bit more sensitive to things if you could say, I thought but I had a lot of dynamics going on. I’d just come back from over there, I was, had other family issues this was before I was married to my current wife [wife’s name redacted]. And I was in the middle of a transition where I was actually leaving from another duty station to another so I didn’t think much of it. But, I started recalling that I had extra sensitivity, mood swings, other ailments started to change the dynamics, started to change where I just, you know didn’t think much of them because you know I was a young man then and it’s like I just, okay just get through it. You know I was always that type of person.
While “Edgar” has always been the kind of person that pushes through pain, the amount of pain they experienced increased over time.
While “Edgar” has always been the kind of person that pushes through pain, the amount of pain they experienced increased over time.
I would work out six, five to six times a day, at least one hour to two hours a day. I was that type of person, push through my pain no matter what. And, I noticed that I was starting to get a lot more muscle pains, joint pains, back pains, neck pains. Just different, small stuff. And, you know as I said you know I just shook it off, it’s just normal stuff. It’s like you know you get a scratch, you get up and you move.
“Edgar” found that keeping mentally busy helped him keep a positive attitude.
“Edgar” found that keeping mentally busy helped him keep a positive attitude.
Engaging my mind a lot more, keeping busy, mentally being keeping in more - mentally sound, mentally health is the biggest thing I would say. And by keeping my mind busy, keeping proactive, not being negative. Looking for the good, when I do that my attitude is so much better. When I’m down on myself I’m a disservice to me, my family, and anybody, and I know that. So, and the best way as I said is talking it out, having an outlet to actually talk about it. Luckily I don’t use any substance to help you know that, so what you get is raw. But it’s better to be raw and talk it out than be using a substance to mask what’s really going on. And unfortunately I think there’s a lot masking going on nowadays. So you’re not getting the full story, and people need to be feel safe to be able to tell their full story, I think. They need to be listened to and get the help they need.
“Edgar” started experiencing more mood changes alongside the development of other symptoms.
“Edgar” started experiencing more mood changes alongside the development of other symptoms.
So, life continued on, had more tribulations, started more aches and pains, more this, more issues with other you know just maybe I just didn’t, you know wasn’t adjusting well to [location redacted], I was thinking. Started having more sinus type issues, and just more and, just more mood issues.
“Edgar’s” son experiences some of the same health conditions and frustrations around unanswered questions.
“Edgar’s” son experiences some of the same health conditions and frustrations around unanswered questions.
It’s really hard to contain myself when I see my son going through the same thing. He says, ‘how can this be?’ When I see him display some of the nerve issues that have been plaguing me and then the dissatisfying answers that he gets from the doctors not knowing. I feel his frustration. Not knowing sometimes can give us loss of hope, and I try to remain positive when I see that frustration in his eyes. So, I know early on I wasn’t there to be supportive and strong for him because I was fighting my own battles inside myself. I didn’t know where I was going to go or where I was coming or where I would land. But I didn’t quit. So I kind of pass that on to him. […] I tell him…‘no matter what you’re here, you’re speaking, you’re alive, you can breathe, you can talk, you can get up, you can do stuff, you have a sharp mind. Let’s…work…on the things you can do instead of focusing on the things you can’t do.’ And, by doing that it’s getting me out of myself and focused. […] Today is not so much focused on me because I’m going to have to deal with what I have, but I want to see, maybe something that can be done for our fellow younger Soldiers that are displaying the same type of behaviors and problems and physical and mental problems as I have, but at a great younger age. And their children and how they’re coping. […] [My wife] has done a really great job talking to other spouses and Veterans and trying to understand what’s going on, because she wants answers about her kids- what’s going on? What’s going to happen? Are they going to pass this on? There’s a lot of unanswered questions right now. And, but I think this is a start.
“Edgar” used to feel like he failed at his roles of father and husband—even at being a man.
“Edgar” used to feel like he failed at his roles of father and husband—even at being a man.
My weakness is I don’t want to have to be dependent on anybody- that’s my weakness. I’ve always been the type of person, I was raised without a father, I was the oldest of three younger brothers and I always, I stood up and took charge. So I don’t want to be, I want to be in charge of my body and my, what I can do. And I feel hopeless when I can’t do that and that’s part of, you know I got to take care of my family, I got to do this. That’s just the way I was brought up and that’s the way I feel, and when you can’t do that you feel like, I feel like I’ve failed as a father, husband, as a man. I mean, today I think differently because I know the reality is I can only do what I can do. And I would say today, to all anybody that ever does watch this, just as long as you’re doing what’s, putting one foot in forward and doing what’s best and for you and your family, putting them front, things will work themselves out. And you don’t have to be hero or super person all the time, it’s okay. I’ve always kind of been a little bit sensitive but I never showed anybody. I was always the type of person that hit it. Today I’m just the opposite, wear it like you own it, you know? It’s all right people, you’re going to have those happy days, sad days, you can be a man and cry, that’s not a problem.
When “Edgar” let his family in and talked openly with them, he found strength in their support and realized they were stronger as a team.
When “Edgar” let his family in and talked openly with them, he found strength in their support and realized they were stronger as a team.
I didn’t realize at first how I was affecting my family. I just know that I was angry, I was frustrated. I felt like nobody was listening, nobody was hearing, they don’t understand. I felt isolated, felt isolated from world from my family. And I was in my dark days at that time, and I needed to be rescued. And of course, you know the people that care for you the most are the ones you want to resist the most from. […] And I didn’t see how that affected my family. And then I first lashed out off anger, ‘you don’t know what I’m going through’ and this and that. And then I realized I was being selfish, because how am I fixing anything if I’m letting this control the dynamic of the family? […] And so I noticed that the only way I could help my family is let my family help me, and got to listen. You know? I mean your family doesn’t want the worst on you, they want the best for you. Got to listen to your family, got to listen, you got to spill the beans, talk about it, be open to suggestions. You’re not going alone. When you’re going through this, your whole family’s going through it- that’s what you got to remember. And so, makes you stronger if you go together as a team, as a family and that’s what, I’m still not there, but I’m working, getting, trying to get there.
“Edgar’s” first sign that something was wrong was brief bouts of paralysis.
“Edgar’s” first sign that something was wrong was brief bouts of paralysis.
And then the one thing that really stood out, which was kind of really freaked me out was a couple times I would feel like my body was shutting down. I would walk and I’d feel paralyzed parts of my body would feel paralyzed. Like I couldn’t lift my leg, it was feeling like, I felt like I was like in a time machine sometime. Felt like everything was just slowing down, and shutting down. It wouldn’t last long, it last a couple minutes and then I would just like, okay well I just something my body’s just going through. So, that was my first really indicator that maybe I should have took more attention, paid it more attention to but I was the type of person that shook of stuff and just kept on going
The smell of smoke sets off migraines for “Edgar.”
The smell of smoke sets off migraines for “Edgar.”
Anything I smell that’s burning or fire or smoke or electrical fire I instantly get migraines from it. But this started to get each shot, started to feel like it physically made something different going on with it, it just, my body wasn’t reacting like it should. But again, I didn’t question anything, you know? And I started to go through it, as I said I started, and then I started to have a lot more muscle issues, more tension, more loss control, more like less of control. I would, like body twitching and stuff, start having tingling, numbness started happening. Just different neuromuscular type of behaviors, like twitching, shaking of my leg. I was sweating a lot more. I think I was, also discoloration on my clothes, my sheets, more mood swings.
Throughout the course of his treatment, “Edgar” has pondered the uncertainty of the illness.
Throughout the course of his treatment, “Edgar” has pondered the uncertainty of the illness.
I didn’t do anything, I didn’t deserve this. But as I said it’s not killing me, it’s just making my life a little bit uncomfortable. But anyway, I could take up a bunch of medicines and be a zombie or I can live with it and today I’m actually finding myself living with it, accepting what it is and knowing what it is, is half the battle. And I think that’s the biggest thing is knowing what you have, or knowing what you’re dealing, or knowing what you may deal with is the battle. Because people have a hard time, and I know for myself of uncertainty. Knowing what’s wrong, not knowing, being disappointed by each doctor call, going through all this screening process, poke and prodding, this and this. What’s wrong with you? Blah-blah-blah. Tell me your symptoms. I’ve gone over my symptoms, and my signs, 30, 40, 50 times now. And, half the doctors are clueless, they’ve never even heard of. So some, I know the information is being disseminated, but each person’s different, you know? Each person is, yeah. And especially if it’s a neurological thing, because everyone’s system works a little bit differently, everybody’s body temperature runs a little differently, the dynamics are different. Why did I get affected, why didn’t the guy next to me get affected? And, so it’s something so, each person is different and, it’s just weird. But as I said I’m doing what I can do and right now the best thing I can do is just talk about it and let people know, that there is help out there.