Jesse
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Jesse was a Marine during the Gulf War in 1990-1991. Following a possible chemical weapons attack, his unit was in “MOPP 4 for nine hours” and he was confused about whether the sweat, drool and confusion was a sign of chemical exposure or just being in MOPP in high heat. The burning smell from the oil fires and “tank with people in them” are still with him today. Jesse has a lot of pride about his military service and at the same time feels like “I’m paying for it with my health 30 years later.”
About four years after returning from the Gulf, at the age of 24, Jesse participated in a Gulf War Exam, at which time he was diagnosed with “likely Gulf War Syndrome.” At this exam, “they poked and prodded and did a bunch of tests” and found “scar tissue” on his lungs.
His pulmonary issues persisted. Jesse has lungs that are “all burnt up” and he can’t breathe in heavily. While he has been diagnosed with COPD and emphysema, he has not received treatments that help him breathe more easily. This effects his ability to be active and work. He has also “had diarrhea for the last 30 years.” Jesse is managing cognitive issues, such as forgetting words or having “lost periods of time” where he does not recall things that happened and mixing up his left and right. He has anxiety, particularly in crowds of people. Jessie has tried several kinds of medications from VA providers and follows a healthful diet that is relatively low on meat.
Jesse works as a part time hurricane shutter installer and at the time of the interview had recently gone to part time because of “I can’t keep up with it anymore.” For Jesse, the schedule of VA appointments, during the day can be difficult to manage with his work schedule. He is frustrated by the VA’s lack of acknowledgement of Gulf War Illness. His wife is a tireless advocate for him. Jesse draws strength from his family, helping others, and a supporting his family business (art studio for kids and Rage Room).
Jesse admits that his wife usually knows when something is going on with him before he does.
Jesse admits that his wife usually knows when something is going on with him before he does.
There was a lot of things that were going on with me, and I didn't want to say anything about it. Right? I just didn't want to say anything about it. One, maybe it was because maybe I didn't want to believe that something was going on. But for the people that are there with the Veteran, keep an eye on them and watch them. They're the ones that will notice the change and the difference of their behaviors and things like the walking into, you know. You might think you just tripped over your own feet but tripping over your own feet might be something a little bit more than just tripping over your own feet. You know? There's a lot of times where Angela will be like, what's up with this? I’m like, I don't know. And then I realize what I’m doing, and I’m like, that's kind of odd. I didn't realize I was doing something like that. But the message would be watch them. Just watch them because you never know what's going to happen because of a wide variety of things that are going on. And I’m like, no. Everything is fine with me because maybe I didn't want anything to be wrong with me. But that's what I would say.
Jesse is tired of his pain being blamed on aging.
Jesse is tired of his pain being blamed on aging.
Well, Gulf War Vets, we're at that age where now they just say you're getting old. You're getting old, so you have aches and pains. Don't dismiss aches and pains as just getting old because, one, I don't believe that I’m just getting old. Old enough to where I should be able to run farther than what I can. But, yeah, just don't, that would be probably the main thing. Don't dismiss things just because you think, oh, you're getting old. That's arthritis. Now arthritis turned into my back being fused together, so what am I going to do with that? There's no topical solution to take care of that. So, just, that's what I would say.
Jesse discusses lack of follow-through.
Jesse discusses lack of follow-through.
Just try to be transparent. I mean, my big thing is you do these tests. Let the Veteran know what happened with it, whether it’s good or bad, because I always thought that no news is good news. Now in hindsight, I’m like, maybe they just didn’t get ahold of me. You know? Maybe they’re so busy that they just didn’t get ahold of me, which I know people fall through the cracks. It happens. You’re not supposed to, but it happens. I mean, I’m not so naive to think that everybody gets the perfect care, and everything happens how they want it to. They don’t, and people fall through the cracks. So, as they say, the squeaky wheel gets the grease, but I don’t know. I don’t like causing a big problem.
For Jesse, even strong evidence doesn’t seem to move the needle.
For Jesse, even strong evidence doesn’t seem to move the needle.
It's been very trying with the VA because even though if they say it's a presumptive, then all of a sudden, they say, well, it could be because of this. And I tell them straight up my family doesn’t have a history. They haven't had a history of cancer. All my siblings are still alive, and none of them have had cancer or heart problems. And even the law firm that is representing me, he said he could have smoked 100 packs of cigarettes back in the day. It's still a big difference from breathing everything from the oil fires and the burn pits and everything else that we were breathing. Right now, for my heart condition, it is sitting in Washington D.C. at the VBA. This is like the third appeal that I've processed that I've been going through. As soon as you find more evidence and bring it to them, they find another excuse why they can deny it. But I was told right now, there's legislation in congress about the burn pit particles, because they took all those years for Vietnam Vets with Agent Orange. Now they're going to do something about it with all the oil fires and the burn pits, saying yeah, if you breathe all this stuff, it does cause problems, but we'll see.
Jesse sees what his failing health does to his wife and is eternally grateful for her.
Jesse sees what his failing health does to his wife and is eternally grateful for her.
And she's fighting for me, and I get it, but I just, sometimes I’m just tired, and I know she's tired, and she only wants the best for me, but I’m tired of seeing her tired. You know? It's hard to see her do everything that she does for me and her professional life, and then she takes care of her cousin's stuff who lives with us. And her job there at her work is just insane. What I feel bad about is I think sometimes when I think about this a lot is that she's working so hard on my stuff that she's literally going to have a heart attack or a stroke, and then look where she's at. And I’m telling her all the time, dude, just chill out. Just relax. We'll get through this time right here and then just relax. I mean, you don't have to push so hard for me. I mean, she just pushes and pushes and pushes. And I can't thank her enough for everything. You know? But I’m just afraid I’m going to lose her. That's my fear.
Jesse grapples with the fact that his problems are invisible on the outside.
Jesse grapples with the fact that his problems are invisible on the outside.
You know, it's real depressing because then, and I realize that I can't do it anymore, and then that is real depressing because you just look, I look in a mirror and I’m like, I look fine, right? But everything, all my problems are on the inside. My lungs are horribly bad, and I just, I mean, my other thing too where I shake, and I can't think correctly. So, everything on me is on the inside.
Jesse’s care suffered as he was bounced from provider to provider.
Jesse’s care suffered as he was bounced from provider to provider.
Well, and here's the thing. They changed my doctors, right, so that I didn't have him, but then when they, say I saw him in January, right? We're just going to use, we're going to say I saw him in January. Well, in May, they changed my doctor to another person, but I wouldn't be able to see them until September. Right? So, then September comes around, and they go, oh, well, we changed your doctor back, but then your next, the soonest appointment is February. See what I’m saying? Now I just jumped a whole year of not seeing anybody and just being on medication, which is, I guess, fine. I upped it on my own because I’m like, I remember him saying if it's not working, we can go up.
Jesse was frustrated by the lack of communication of his test results and treatment from his providers.
Jesse was frustrated by the lack of communication of his test results and treatment from his providers.
I would do tests, but then I never heard back. Like, I never heard back. So, the way I would see it is no news is good news. You know? And so, if something was wrong, they'd let me know. Well, things were wrong, and they didn't let me know, and I kind of needed to know maybe that something was wrong. So, I just changed so many doctors, and maybe that was the reason that things crossed over, and maybe someone is like, well, it's been two months. They had to have let him know by then. Or the other doctor, his new doctor will let him know, and they'll go on with the treatment plan. And the new doctor says, you know, I bet he's got a treatment plan from his previous doctor, and I had no plan. So, I was given to somebody else, but then nobody else ever did anything until Angela is like, hey, whatever happened when you did these tests? I’m like, I don't know. They never got ahold of me.