MICHELE NORRIS, Host:
From NPR this is ALL THINGS CONSIDERED. I'm Michele Norris.
MELISSA BLOCK, Host:
As NPR's Daniel Zwerdling reports, she's more than coping now. She's using the power of that tragedy to push the government to improve the way it treats wounded veterans and their families.
DANIEL ZWERDLING: Nellie Bagley talks about her life now as though she is two different people. There was Nellie before Jose got blown up. And there's Nellie since he got blown up. As Bagley begins to tell her story, we're standing next to her son's bed.
NELLIE BAGLEY: This is Jose's room.
ZWERDLING: She's renting a house near Tampa, Florida. Jose is propped up against the pillows. His eyes seem to be staring into space. His mouth is open. He's drooling.
BAGLEY: Jose can hear you. Jose can see you. Jose can understand anything you say to him. He's just not able to communicate back to you.
ZWERDLING: On March 1, 2006, Jose's Humvee was hit by a grenade.
BAGLEY: Yeah. Yeah. Mom love you. This is Jose.
ZWERDLING: Hi, Jose. Would Jose mind if we talk about his injuries, standing next to him?
BAGLEY: No, I don't think so.
ZWERDLING: A few days after he was blown up, the military flew Jose to the Naval Medical Center, in Bethesda, Maryland. Nellie Bagley and her daughter rushed to see him. She says her whole life - until that moment, she had been pretty much a pushover.
BAGLEY: I was the most meek person you will ever met.
BAGLEY: No, meek. No. I would not...
ZWERDLING: Oh, meek.
BAGLEY: Yeah, I would let everybody run all over me. I was the person that let my ex-husband run my life. And I just obey.
ZWERDLING: But then she found herself in the ICU. Her son was plugged into a ventilator. It was 3 A.M. And everything changed.
BAGLEY: The doctor put us in the room, my daughter and I, and said to us, you need to let him go. He's not going to make it. And he said to me, if he ever lived, he will be a vegetable for the rest of his life. I look at the doctor and I said to him, who are you to tell me to let my son die? And that was the first time that I stood up to somebody like that. That was the first time that I stood up to fight for my son, because he could not fight for himself.
ZWERDLING: And Nellie Bagley has been fighting for almost four years now. Jose can't talk. He can't walk. He can't eat or even move most of his body. Doctors say he might not perceive or understand the world any more than a baby. But Jose has surprised the doctors just by living. And Bagley has surprised just about everybody.
STEVEN SCOTT: Nellie and Jose basically have led the way, you know, almost like pioneers. Almost like Lewis and Clark going across the country.
ZWERDLING: Steven Scott is one of the head doctors at the veterans' hospital in Tampa. He says Nellie Bagley has pushed them. She's pushed the government to take care of Jose in ways they hardly ever treated seriously wounded troops before.
SCOTT: She was able to get things done that probably normally would not. And that's what's so special about Nellie and Jose, is that they give hope to so many others.
ZWERDLING: Nellie Bagley is 58 years old. She's been married twice and divorced twice. Jose's last name is Pequeno. When Jose went to war, his mother was working quality control in a factory. At the moment, she's sitting next to Jose's bed. She clipping and filing his nails. There's a striking photo of Jose as a young Marine. He was somebody you'd want on a recruiting poster.
(SOUNDBITE OF FILING)
BAGLEY: He's doing good.
(SOUNDBITE OF MOANING)
(SOUNDBITE OF MOANING)
ZWERDLING: You have now spent all of the money you had saved.
BAGLEY: Mm-hmm. Yes, sir.
ZWERDLING: You have used up everything that you had in retirement.
ZWERDLING: Meanwhile, Jose's younger sister quit her job. She moved into his hospital room, too. Sometimes she and her mother slept on blankets on the floor. Or if they could find them, they slept on reclining chairs. They ate out of a box.
ELIZABETH BAGLEY: We had nice stock of ramen noodles. Put them in a bowl and you take that little packet, add some water and you throw them in the microwave, heat them up and yeah, great stuff.
ZWERDLING: Pretty soon, Nellie Bagley started telling the hospital staff how to take care of her son. For instance, she was sure the drugs they were giving Jose were making him sick.
BAGLEY: And I told the doctors, please, I need you to change to something else.
ZWERDLING: And the doctors did. It turned out Bagley was right. And she says, you know what the basic problem was? The medical experts basically ignored her and all the families. She says one morning about three years ago, Dr. Steven Scott walked into Jose's room at the VA in Tampa. Scott's medical team was with him and Nellie Bagley confronted them.
BAGLEY: And I said you need to make the family part of the team. They look at me and Dr. Scott said to me, Ms. Bagley, you're right. You are absolutely right.
ZWERDLING: So I went to the VA hospital. I asked Dr. Scott, is Nellie Bagley's story true? He said, totally.
SCOTT: Her mother insight was better than our insight from a clinical- practice aspect. And she was basically - found things or identified things far in advance of what we could.
ZWERDLING: People say Scott did more than admit he was wrong. He encouraged Nellie Bagley to become the voice for other families and wounded vets. She'd go from room to room when new patients came in.
BAGLEY: Unidentified Woman: (Singing) Oh, say can you see by the dawn's early light...
ZWERDLING: Unidentified Man: Ladies and gentlemen, General Colin Powell.
(SOUNDBITE OF APPLAUSE)
ZWERDLING: Powell was one of the star speakers this May at the National Memorial Day Concert at the foot of the U.S. Capitol. They honored Nellie Bagley's family.
COLIN POWELL: Nellie, Elizabeth and Jose, we are inspired by your bravery, your love, your determination. Jose and all of the disabled vets are living memorials of our wars. They deserve no less than the finest care possible...
ZWERDLING: How much did the VA or anybody else in the government prepare you for what it was going to be like to take care of your son at home?
BAGLEY: I was not prepared for that.
ZWERDLING: She had to figure it out on her own and then she had to fight to get the equipment Jose needed. She asked the VA to give them the special air mattress that Jose had at the VA hospital that helps prevent bedsores. But the VA said, no, the rule says we have to give you another kind of bed. So Bagley called the secretary of Veterans Affairs.
BAGLEY: And I said, you know, this needs to change.
ZWERDLING: Jose got the special bed. Then Bagley told the VA, my daughter and I can hardly move Jose out of the bed. We need one of those special motorized lifts that you use in the hospital, to carry him to his wheelchair and shower. But the VA said, the rules say we only give that to patients who have spinal cord injuries. Jose has a brain injury.
BAGLEY: I'm five-two, he's six-two. I need something like this.
ZWERDLING: The VA finally gave in and Bagley got the lift. So now there are metal tracks across the ceiling. Push a button and it lowers a cocoon that they wrap around Jose's body.
(SOUNDBITE OF MACHINERY)
ZWERDLING: But then there was an even bigger problem. During the first few months Jose was home, Nellie Bagley took care of him mainly herself: up at 4:30 every morning - 5:30 she's at Jose's bed.
BAGLEY: Empty his urine bag, which is usually full by that time.
ZWERDLING: She sorts and grinds a dozen pills.
(SOUNDBITE OF A BLENDER)
ZWERDLING: Purees cereal and milk in the blender, pours the mush into Jose's gastric tube, changes his diaper, cleans his body with washcloths. Then it's time for mouth care.
BAGLEY: I brush his teeth...
BAGLEY: ...clean his tongue. I floss.
ZWERDLING: And you've only heard about the beginning of their day. So, Bagley turned to the VA again and she said, I need someone to help me take care of Jose. She struggled for months to get it. But this summer, the VA finally agreed to pay for nursing aides to come to her home 12 hours a day. Dr. Steven Scott says Nellie Bagley and Jose have opened up doors.
SCOTT: And that's what so special about Nellie and Jose, is that they give hope to so many others.
ZWERDLING: Scott says he realizes everybody can't take care of a severely wounded relative at home. Some people can't handle it. But if families want to, Nellie Bagley and Jose have shown his VA how to help them do it.
SCOTT: Many of the things that Jose currently has to maintain at home are new, innovative things. And so, now, this leads the way for others that are most serious - can go home.
ZWERDLING: Of course, Tampa's just one VA hospital, there are a hundred fifty- two others. Veterans' advocates say many of those VAs don't support families anywhere near as well. But now, the U.S. Congress might help them. Most members support legislation that would actually pay family members who take care of seriously wounded vets. The family members would also get training and therapy to help prevent them from burning out. Evidence suggests that wouldn't cost taxpayers any more money than putting the vets in a nursing home. If anything, it might save money.
(SOUNDBITE OF MUSIC)
ZWERDLING: Back at Bagley's home, it's 8:00 p.m. The nursing aide has left and Bagley has puts on a CD that she says helps Jose sleep. She wants to show me how she'll keep watch over Jose during the night.
BAGLEY: See, I came to see Jose.
ZWERDLING: I'm trying to imagine you're lying here in bed and there's the whole screen taking up with your son missing half his brain. What goes on in you when you see this picture?
BAGLEY: I bury my head on the pillow and cry every night for the last three years.
ZWERDLING: Do you want a Kleenex?
BAGLEY: Yeah. I'm used to those. I never see him let me cry. I never have. I have to be positive around him.
ZWERDLING: And what do you think about Jose, like, what memories come back to you?
BAGLEY: The one that always come to me is - my son didn't say much. He was very - kind of quiet. He will walk out and he would say, love you, and wink at me. We went through some rough time and he will wink at me, like saying, it's going to be okay. You don't know how much I miss that wink.
ZWERDLING: Daniel Zwerdling, NPR News.
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