KANSAS CITY, Mo. — Tomas Young has been fighting for the last nine years, fighting his government, fighting the Department of Veterans Affairs and fighting his own deteriorating body.
But soon the struggle will be over. The Kansas City man who was paralyzed from the chest down by a snipers bullet during the Iraq war is now in hospice care and preparing to die.
Sometime in the next few weeks, after he has said all his goodbyes, he intends to refuse nourishment, water and life-extending medication. He expects his 33-year life to be over a few days after that.
Because Im tired, Young explained this week from his bed. Im sick and tired of being sick and tired.
Young is mostly confined to his bed. His colon was removed in November and he doesnt eat solid food. A pump that he controls provides anti-pain drugs through a tube into his chest. He gets nauseated and tires easily.
Those closest to Young, including his wife and his mother, support his decision. They want Youngs story to draw attention to Americas attitudes toward death and dying as well as to the continuing price being paid for the Iraq war, which began 10 years ago this week. American troops left in 2011.
In what may be Youngs final political gesture, the activist this week issued an open letter to former president George W. Bush and former vice president Dick Cheney on behalf of the human detritus your war has left behind, those who will spend their lives in unending pain and grief.
The letter, which is posted at www.truthdig.com, accuses Bush and Cheney of egregious war crimes, of plunder and finally of murder.
Young is accustomed to expressing strong opinions about the war. He was interviewed on 60 Minutes and was the subject of the 2007 documentary Body of War produced by Phil Donahue. Musician Eddie Vedder of Pearl Jam was inspired by Young to compose songs for the film.
Youngs experience strikes a nerve among people. A story about his current situation on The Kansas City Stars website, www.kansascity.com, drew roughly 30,000 hits by Wednesday afternoon, more than three times as much traffic as the next-most-viewed story.
Young was a graduate of Winnetonka High School, class of 98, and after the terrorist attacks of Sept. 11, 2001, he decided to join the Army.
I enlisted to go to Afghanistan because I felt that was, quote unquote, the right war, to go after the people that attacked us, he said.
Young was distraught to be sent instead to Iraq, a conflict that he felt was not justified. He said an Army chaplain told him he would feel better once he got to Iraq and started killing Iraqis.
Young was in the country less than a week, on April 4, 2004, when he and many other soldiers were wounded while in the back of an open-air truck rushing in a rescue convoy in Sadr City outside Baghdad. He was 24 years old.
It was like shooting fish in a barrel, Young later said of the sniper attack that severed his spine.
Back home and in a wheelchair, Young struggled with post-traumatic stress but became a voice against the Iraq war. Body of War dealt with the congressional debate over the war resolution and took an unflinching look at Youngs daily medical trials.
Those became worse with a pulmonary embolism and anoxic brain injury in 2008 that impaired his speech and arms. He was in rehab in Chicago when a kindhearted woman who had seen the documentary began visiting him.
I went down there to make it better for him, said Claudia Cuellar. I took him books and music and movies. We connected pretty quickly. I fell in love.
Cuellar left her home in Chicago to be Youngs caregiver in Kansas City. Last spring the two married at the Clay County Courthouse so Cuellar couldnt be excluded by a hospital from Youngs final moments. They were already thinking about that. Things soon began to get worse when Young experienced severe abdominal pains.
There were several hospitalizations and arguments with doctors over pain medication. Young left a VA hospital in October against medical advice. He and Cuellar were considering hospice care when doctors at a private hospital suggested a colostomy.
It was major surgery, but the couple thought it would buy some time and quality of life. But the pain returned.
Now Cuellar feeds her husband a liquid diet through a tube and grinds up pills when he is nauseated.
Leaving the bed is too much of an effort, so Young lies in a darkened room with a wide-screen TV and Bob Marley posters on the wall. Elsewhere in the house in Kansas City, North, are Pearl Jam memorabilia, photos of Young and Cuellar, and books on Tibetan Buddhism, her religion.
Knocks on the front door signal the arrival of a visiting caregiver or the delivery of meds. A happy dog named Buddy pads around with a tennis ball in his mouth.
Cuellar doesnt cook anymore, lest the aroma cause her husband to think about food. Watching TV is hard because every other commercial seems to be about food.
After the last surgery did not make things better, Young and Cuellar again turned to the concept of palliative care.
Finally I decided that watching my body deteriorate, I was going to go into hospice care and eventually stop eating and drinking, said Young.
Cuellar said it wasnt that easy getting off the medical merry-go-round where they want you to do more and more procedures and take more and more drugs. They make you feel like youre giving up, like theres something wrong.
To be accepted into hospice, one technically has to have a terminal condition. Cuellar and Young prevailed when he was ruled to have an inability to thrive and was accepted by Crossroads Hospice.
Young said his choice was rational.
When you feel like youve had enough with life, you can choose to go out your own way, he said. You dont have to struggle through every day just to make it because youre expected by society to endure until you die naturally or are murdered.
As a longtime atheist, Young has no religious reservations about choosing to die.
Cuellar said her religion teaches that a persons wish to be free from suffering is a karmically neutral act.
Youngs mother, Cathy Smith, has been on her sons side for the past nine years and still is. She lives about five minutes from him and visits often.
Though its probably the hardest thing any mother has to go through to watch your son go and to prepare for this, she said, I know he wont be in pain anymore.
Smith doesnt believe her oldest child is committing suicide and says his decision is no different from a do-not-resuscitate order.
My mourning has already been done, said Smith. Ive already mourned for the son I had, for the man that he could have been, for everything that he could have done and accomplished. At the same time, the legacy that he has left with Body of War and the interviews that he has done recently not many people have left a legacy like that. Thats something to be proud of.