(KANSAS CITY, Mo.) Tomas Young is “ready to go” as he puts it. After nine years of suffering and with his body quickly deteriorating, he has decided to end his struggle.
Young, 33, was paralyzed from the chest down by a sniper’s bullet in a battle in Sadr City, Iraq on April 4, 2004, less than a week after he got to the country. He had joined the Army just two days after September 11, 2001 and assumed he would be sent to Afghanistan. Now nine years after that battle he is choosing to end his suffering. He is in hospice care and is preparing to die.
“I just decided that I was tired of seeing my body deteriorate and I want to go before it’s too late,” Young said in a phone interview with ABC News from his home in Kansas City, Missouri. “I’ve been doing this for the past nine years now…and I finally felt helpless every day and a burden to the people who take care of me and that’s why I want to go.”
Young and his wife Claudia Cuellar are receiving guests for a few more weeks. During that time, Young will say goodbye to friends and family and then will stop receiving medications, nourishment and water. They don’t know how long it could be after that time he will die. They believe it will be one to three weeks, but it could be as long as six weeks.
They don’t consider it suicide, just an end to his suffering.
“I’m not the boy who would always think suicide if maybe something goes wrong,” Young said. “I put lots of time into this. I considered the facts that people I know who love me and would prefer that I stick around, and my only hope is that they realize that they’re being selfish in wanting me to just stick around and endure the pain.”
Young and Cuellar have decided to go public with their story. First, in an article in the Kansas City Star because they want to change the perception on death and dying in this country as well as continue to shine a light on the anti-Iraq war activism Young has been focused on since becoming paralyzed. He was the subject of a 2007 documentary Body of War produced by Phil Donahue. It showed Young dealing with the excruciating physical effects of his injury including post-traumatic stress, as well as his work against the Iraq war.
Cuellar says since the first story was written about his choice to die last week they have received mixed reactions of people supporting Young’s decision as well as people urging him to “hang on” or “fight a little more.” She says it’s because people can’t fathom his daily pain.
In 2008, he suffered a pulmonary embolism and anoxic brain injury which he believes was because he was taken off of blood thinners. It affected his speech as well as impaired the use of his arms. Cuellar and Young met when she saw the documentary and she began visiting him when he was in rehabilitation in Chicago after the embolism. They married last April.
“He was a para[plegic] and he was independent and functioning independently so he rolled the ball up the mountain to learn how to be a paraplegic and then four years later…he has the embolism he gets rolled back all the way down the mountain and he now has to live like a partial quadriplegic,” Cuellar said.
Since then, they estimate, he takes between 35 to 45 pills a day. He has mucus, but because of his paralysis he cannot cough it up, so Cuellar presses it out of him ten to fifteen times a day. He takes more pills for waves of nausea that hit him throughout the day, antibiotics for infections, his vision is fading, and he’s had increased nightmares that they believe are caused by the increase in pain medications. His colon was removed in November and he now can’t eat solid food. Young’s speech is also quite blurred so his wife jumps in when needed.
“We’ve had to increase the pain medication over time quite consistently and incrementally the increase in pain meds will decrease his faculties somewhat so he is becoming forgetful a little bit. He was always very clear before,” Cuellar said.
She also must clean “pressure sores” on his buttocks where Cuellar says she can see the “living bone.”
“I hope people understand that we are not just deciding to stop feeding because things are kind of difficult,” Cuellar said. “It is an insurmountable challenge every day and I don’t know how we get through. We get through with each other.”
So, how exactly does this happen in the age of modern medicine and to a man who served his country bravely?
Young says it’s been a “long process” since he began experiencing “severe abdominal pain in July of 2009″ and he hasn’t just been struggling with his deteriorating body, but with the health care system, calling the Veterans Affairs (VA) Hospital a “factory.” He left in October against medical advice.
“At the VA the doctors seem to think they are so much better than all of their patients and if you try to say, ‘Oh what if it’s like this?’ or ‘What if we go down this road?’ and they say, ‘No, no that won’t work,'” Young said. “I said (the VA) was more zoo-like, it’s actually more like a factory. Like patients are on an assembly line.”
They said the treatment at a private hospital he went to was better, but Cuellar said “there is still this drive towards procedures, surgeries, drugs, procedures, surgeries, drugs.”
“When we felt like we had enough of procedures, surgeries, and drugs, there isn’t a space allowed to begin to talk about transition into hospice or feelings about suffering or death and dying. Even with medical professionals they don’t want to talk about it,” Cuellar said.
They said that when they first approached Young’s doctors with his wish to go into hospice they said due to his young age, he wasn’t the “typical hospice patient.”
“This is what happens when a country sends their sons and daughters to war,” Cuellar said. “Broken bodies come back and broken bodies deteriorate over time just like a diseased body and just like an aging body and this is the reality. I’m sorry if it doesn’t fit your profile of somebody who is 90 years old and about to die going to hospice.”
In order to be accepted in a hospice, Young must be “terminally” ill, which he technically is not. They were able to be accepted when he was ruled to have an “inability to thrive.” He now has in-home hospice care from Crossroads Hospice.
“All we want to do is go home,” Cuellar said, referring to the time before the ruling was made. “We don’t want to be in a hospital, we don’t want to be in an ER, we don’t want to go into a nursing home…we felt like we were like Frankenstein. They just wanted to keep cutting open, stitching up, going in, another pill and this is a dehumanizing process.”
Although Young has been involved in protesting the Iraq war for years, his final piece of political activism is an open letter he wrote to former President George W. Bush and former Vice President Dick Cheney accusing them of war crimes.
“You may evade justice, but in our eyes you are each guilty of egregious war crimes, of plunder and, finally, of murder, including the murder of thousands of young Americans–my fellow veterans–whose future you stole,” it reads in part.
ABC News’ Chief Global Affairs Correspondent Martha Raddatz has covered the war in Iraq extensively, even writing a book, The Long Road Home about the battle in Sadr City in which Young was injured in.
She sat down with the man who saved Young and others, Robert Miltenberger, several times since the battle. He served as a staff sergeant in Sadr City in 2004.
Miltenberger, who was awarded the silver star for his bravery told Raddatz in 2005 that he thought about Young and others often, telling her the memories were “haunting.” In November 2011, she interviewed him again and he said he had told Young that he apologized to him for what happened right after he was paralyzed.
“I was telling him that I was sorry that I lied to him, that he wasn’t paralyzed, that people were lying on his legs and he was just numb from all the weight and stuff,” Miltenberger recalled. “He said it was okay. He didn’t blame me.”
Young’s reaction to hearing those words was that “I’ve never had any hard feelings and I never considered it lying. I was just trying to keep my head above water.”
Young said he would like to talk to Miltenberger before his life ends.
Young says he wants the country to learn from his struggle that “war is the last resort” and in future conflicts the American government should try diplomacy and “if they are still not cooperating they should send in a small group of elite trained forces not 125,000 19-year-old kids whose first cultural experience is eating at the Olive Garden or Taco Bell. “
“I want our government to try every possible outlet with the country before invading it, before going to war,” Young said.
Young added that if the United States does go to war then “all boxes must be checked.”
“Make sure that the soldiers, marines, and sailors have the best body armor, the best armor around their vehicles,” Young said before Cuellar added, “And having a healthcare system that will take of you when they get back. I mean, they just can’t be abandoned when they sacrifice for their country.”
Young’s mother, Cathy Smith, whom he says has worked as a “pit bull” on his behalf, is also almost always by his side.
He said “she’s come around to the conclusion that it would be far more selfish for her to want me to stay alive and be in pain the rest of my life than just let me go.”
Copyright 2013 ABC News Radio