Tom Sullivan ran at life full force. His brother Dan approached decisions with deliberation and caution, so it wasn't uncommon for Tom to jab at Dan, telling him, "Stop being a wimp. Just go out and do things!"
Tom had an impromptu conversation in 2000 with a recruitment officer and joined the Marines, remembers Dan. The career turned out to be a perfect fit for his personality.
"He just went at it full force," recalls Dan, who now lives in Silver Spring. "I mean, he went into boot camp; he got through boot camp. He loved the marines. He actually had the opportunity to quit before he was sent to Iraq, and he believed so strongly that the Marines was what he was destined and wanted to do, so he re-upped."
Tom went to Iraq in 2004, but while he was deployed, he started to feel sick. His blood pressure became elevated and he started to have gastro-intestinal problems.
"It was very debilitating," says Dan. "He would literally miss three or four hours a day having to be on the toilet." Tom returned to the U.S., but his health continued to deteriorate. He was in intense pain and he became so swollen that new friends didn't recognize pictures of him from a year or two earlier.
Tom's doctors couldn't identify the cause. They suspected Crohn's disease and then ulcerative colitis, but weren't sure. He saw more doctors, hoping someone could confidently diagnose him, and he began to carry around a backpack full of his medical records everywhere he went.
Even in the midst of his physical suffering, Tom maintained his enthusiasm for life. He got married and had a daughter.
Then, in February of 2009, Dan went to Tom's house to check on his brother, and found Tom's body. His backpack full of medical records lay next to him. "The moment when I found his body — and I was alone at the time in his house — and realizing that the sum total of everything that I feared was basically right there, and I don't know, I just had a sudden shift in consciousness," Dan recalls. "There was almost a moment where I kind of thought he was kind of like 'All right Dan, now go out there and stop being a wimp.'"
Tom died without receiving a concrete diagnosis. The family had an autopsy done, and Dan says the results revealed, "his heart was severely damaged; his brain was swollen; his kidneys were exhibiting signs of failure, his heart was also enlarged. His lungs were full of fluid, and the medical examiner thought that the actual thing that ended up being the final cause of death was this pneumonia."
Learning from the experiences
Tom died of something labeled "post-deployment illness." Doctors don't understand what causes it or how to treat it. The primary theory is that while in Iraq, Tom was poisoned by toxins in the air, possibly from burn pits or explosions.
Dan and his family decided to start an organization to advocate for more education and research around post-deployment illness. They called it The Sergeant Sullivan Center, and they work with doctors, patients, government agencies, and non-profits to improve the lives of people with these little-understood diseases.
"It took 10 years after the Persian Gulf War — 10 years or so — for there to be a statement that in fact Gulf War vets were sicker at a higher rate than the average population. I think the answer is we don't need to wait 10 years," explains Dan. "We need to take the information that's available and use it to the best possible benefit to those who are sick. And that's a step in the right direction."
It's been almost four years since Tom died. Dan still thinks about his brother all the time. When they were teenagers, they used to sit on their parents' back porch, drinking boxed wine and smoking cigarettes. At the time, Dan was struggling with coming out as gay, and one night, Tom turned to Dan and said, "I know that you're gay. And if that's what you want, just own it and do it."
Dan recounts: "And then he asked me if I was afraid of AIDS and I said 'yes.' And that's when he said, 'Have you ever considered that if you got AIDS, maybe you might learn something from the experience and be better for it?' I thought he was crazy! You know? I thought what kind of question is that? How on earth would I want to learn something in that way?"
Dan says he now understands what his brother meant.
"There's a lot of horror and beauty in all of this stuff," explains Dan. "I've met a lot of people now who have a serious illness in their lives - really, really sick, suffering in awful ways. But boy, when we all get together and when we talk to one another, there's an energy and a force and a commitment to living and to making this illness make sense, and make things better for other people. That is beautiful — coming together in the face of devastation. And I'm not sure you can get that coming together without the devastation. You know, these things go hand in hand."
This story first came to our attention through the storytelling group Speakeasy DC.
[Music: "My Xylophone Loves Me" by Melodium from Music For Invisible People]
Photos: Tom and Dan Sullivan