Voices from the Post-Deployment Health Crisis

VOICES FROM THE POST-DEPLOYMENT HEALTH CRISIS

Women in Military Service for America Memorial

Arlington National Cemetery-November 10, 2012

[Transcript]

DANIEL SULLIVAN:

Good afternoon, everyone, and welcome. Thank you for coming to “Voice of the Post-Deployment Health Crisis.” My name is Dan Sullivan. I'm President of the Sergeant Thomas Joseph Sullivan Center. And this program today is very important to me, personally. And also I think it's an important part of what the Sergeant Sullivan Center hopes to achieve by increasing awareness of the post-deployment health crisis. When I was a kid, it was the 1980s, and we were in the midst – or a health crisis started then, the AIDS crisis. And when I was a kid, I would see these stickers that were posted on, you know, newspaper stands that said, Silence Equals Death. And I thought to myself, what the heck does that mean? Silence Equals Death? I didn't understand that. Now, years later, after watching my own brother, Tom Sullivan, for whom the organization we formed is named, die slowly of an illness, die slowly in isolation, an illness not AIDS, but something he didn't understand and couldn't speak about. Lacked the language and the words to speak about it. And he suffered and he died and we all watched him die, feeling like we were the only ones. Now, after a year of work through the Sergeant Sullivan Center, we know we're not alone. We know that there are many. We know that there are thousands who suffer from post-deployment illness. And I now understand when I think of the fact that my brother's doctors provided him with health care, not knowing that theatre environmental exposures were a more likely than not explanation of his illnesses. That that lack of awareness, that lack of awareness because of silence did lead to death. And so today, what I hope we can do is replace that silence with a voice and begin to articulate in the voices of those of us who have gone through it the true meaning of post-deployment illness. What it feels like, what it is and then, as we listen to this voice, the sound of that voice will become life. And that life will bring hope. This is an open forum. This is a time for – where we've invited people from all around the country to come forward and speak and tell their true stories in their own words. There's no requests – we've not edited or censored any of the language. There may be graphic descriptions of illness because these post-deployment illnesses that people suffer are awful. And I don't want to censor it. So just want to issue that warning that this may not be suitable for all audiences. But it will be meaningful. And the message we bring today is a message of hope. So each person is going to come forward and introduce themselves, share their story, and then we will provide a short opportunity for dialogue at the end. Thank you very much. [APPLAUSE]

BOBBY SYLVESTER:

Good afternoon, everyone. My name is Robert Sylvester. I'm the deputy director and co-founder of the Sergeant Bill McKenna Foundation. Today, I'm going to speak on behalf of our executive director, Deena McKenna, who cannot be here today due to lack of power and heat caused by the ravages of Hurricane Sandy back home. The following is an account written by Deena of her family's shared experiences before and after Sergeant Bill McKenna's deployment. And these are her words. Bill and I were together for fifteen years. We met just after high school and fell in love fast. After five years together, our first daughter Caitlin was born and our lives changed completely. Soon, September 11th, 2001, our nation was attacked. And while everything around us was falling apart, and tensions and sadness were everywhere, Bill and I pulled closer together and decided to get married on New Years' Eve. Bill then made a decision that he would join the Army. He would do the best thing he could do for our family and for our country. He was thirty-three years old and close to the cutoff age for the Army. He passed the exams and was in perfect physical health and he signed a four year contract and our lives changed completely. The Army chose Fort Carson, Colorado to be our new home. Our daughter was starting kindergarten when Bill's first deployment began. He was sent to Iraq for eight months. When he returned home, he was a different man. War changes everyone in different ways. He was diagnosed with PTSD and that was expected. The Army told most of the wives this was going to happen and to expect changes. This was a sacrifice we all had to deal with. Shortly after his return, our second child was on the way. And four months after the birth of our second daughter, he was to return to Iraq. He was scared this time and I knew something wasn't right about him. The letters I received during his deployment were much different this time. He spoke of the everlasting smell of smoke that kept him awake at night. He wanted me to send him lots of hard candies to disguise the taste in his mouth that he cannot wash away. He had trouble breathing and sleeping. He said the showers made him feel dirtier. His headaches were constant and nosebleeds happened randomly. He also had dry patches on his skin and spots that were never there before suddenly started to appear on his face and hands, the only parts of his body exposed to the air.

Bill came home from Iraq on Halloween, 2007. He walked into the Welcome Home ceremony standing tall and proud. He had lost some weight, but that seemed normal due to the food and living conditions. In the days to follow, something was wrong. He could not sit still or relax. He was tense all the time. And the Army medicated him with Ambien, Seroquel, and so many other sedatives. Bill cannot readjust to family life. He couldn't handle the sounds of laughter or crying from his infant daughter. The Army medicated him more for that. He was not a family man anymore. He now suffered from PTSD, TBI – Traumatic Brain Injury – sleep apnea, tinnitus, and chronic back pain. With these injuries combined, he cannot perform his duties anymore. After six years of service, he was being medically discharged. He took the offer of vocational rehab and we moved to Florida where he would attend UTI technical school to further his career as a high performance engine mechanic. Again, our lives changed completely. Now living in Florida, the adjustment from sergeant to student was very difficult for him. He was easily frustrated and angry all the time. There was constant pain in his back from soldiers. The tumors started to show on his jawbone. He went to the local hospital in Spring Hill, Florida and where Bill's lip had swollen up to the point where he could hardly speak. Doctors told us it was a food allergy and gave him a steroid shot from an epipen. And again, told him it was just a food allergy. We had no insurance, so they didn't do any more tests to find out what was really wrong. The tumor went down after a few weeks and he completed his schooling. He was now an expert at his trade with a certificate and began to look for work. It didn't take him long to find a job, but then the tumor returned. He had other symptoms as well. He couldn't catch his breath. He was exhausted all the time. [CLEARS THROAT] I'm sorry. Was exhausted all the time and had no energy and the nosebleeds were happening again.

Just a few days after Christmas, we took the kids to the river and went for a walk in the park. Billy collapsed. He fell to the ground and started to panic. He was clenching his chest and his heart was racing. I rushed him to the James A. Haley VA Hospital in Tampa, Florida. It was an hour drive from our home. Bill cannot walk to the doors. He fell on the sidewalk and a medical team came running out with a stretcher and took him into the ER. His life changed completely. The doctors came running at me with consent forms, each to explain that his life was close to an end if they didn't do this procedure right away. There was so much confusion and panic. Bill was in complete kidney failure. An X-ray showed a mass wrapped around his heart and lungs preventing him from catching a breath. He was going to die if a chest tube was not put in place immediately. Everything happened so fast. An oncologist was called in right away and his first words were to me, where was your husband stationed in his military career? Was he exposed to toxic chemicals? We need to start chemotherapy right away. We're doing some tests, but the results will take weeks. I want him to start with chemo – immediately start on chemotherapy. He's already hooked up to a dialysis machine. His own blood is killing him. We placed him in a coma for now and we're going to place drainage ports near his heart to relieve the pressure. Your husband is a very sick man. Call his family. He may not make it through the night. I'm sorry, Miss McKenna, we're doing all that we can. The results came back on January 19th, 2010, and as predicted by the doctor, my husband was diagnosed with T-cell lymphoma. An extremely rare and very aggressive form of cancer, stage four. My life changed completely. While Bill was in ICU, I never left his side. A family member was taking care of our girls and I cannot return to work. I cannot walk out of the room for fear of him waking up and not seeing me there. I was frozen in time. A VA rep visited me and started the paperwork for claims. The days passed and the bills began to pile up. While we were waiting to hear back from the VA, the weeks went by and we heard nothing.

No matter how many times I called the Department of Veterans Affairs, I was told the same thing. There are many soldiers waiting for claims to be processed and I would have to wait my turn. My rent was due. My electric was disconnected. We were facing eviction. I started to write letters to congressmen and senators both in New York and Florida. All the responses I received basically said the same thing. They would expedite my claims and it would take at least six more weeks before I would get a response. Finally, the papers came. But to my dismay, we were denied. No service connection, no aid and attendance, no unemployability insurance. I appealed and a second claim came back with the same response. The Department of Veterans Affairs refused to admit that Billy's illnesses were war-related. When I explained this to the oncologist, he wrote a letter that confirmed that this cancer was directly caused by the chemicals and toxins released from the burn pits where Billy was stationed in Iraq. I continued to fight. My husband was dying. And our lives were changed completely. Billy underwent eleven months of chemotherapy. He was in the hospital three weeks a month every month. When he was home, he was in great pain. He could not walk, he could not get out of bed, he could not feed himself. He had no appetite and he became very angry at the world. The cancer had spread to his brain. He started to suffer from dementia. He believed he was twenty-five years old again and he introduced me to the nurses as his girlfriend. He forgot he had cancer. He didn't recognize his daughters anymore. He asked me to marry him again. And I had to make the decision not to let the girls see him anymore. They were afraid of him now because his face was paralyzed and he lost sight in one eye. He was not the father that they knew. And not the father I wanted them to remember. Their lives changed completely. Bill and I had many friends that were outraged by the amount of time that had gone by while we waited to hear what the Department of Veterans Affairs was going to do for us. They had collected donations and raised money for us to cover the bills and have food on the table. I started to receive checks from strangers who had heard of our situation on Facebook. Jill Wilkins, who had lost her husband Kevin within five days of a brain tumor diagnosis because of the burn pits, whom, had I lived in Florida, called the local news station and they did a report on what was happening to my family.

After twenty-four hours of the report, I received a phone call from the VA granting us full benefits. Bill was awarded one hundred percent total and permanent, with service connection, and and attendance, and unemployability insurance. If it wasn't for our friends in the public eye, I don't know what would have happened to us. It was just now days before Christmas. As much as I wanted to let Billy go and leave his broken body to end his suffering, I also wanted him to hold on till after Christmas was over. Just one more holiday together. He must have heard my request, because he was home with hospice assistance and sat on the couch as the girls opened their presents. He was in so much pain with the medication, that the medication wasn't working, but he still held on the best he could. On December 27th, 2010, I made a decision to have him taken to the hospice home. He was now unresponsive, closed eyes, and taking very shallow, soft breaths. I knew it was very close to the end. I stayed with him that night and throughout the next day at his side, holding his hand, telling him how much I loved him and how lucky I was to have him for twenty-three years. At 10:15pm on December 28th, 2010, he took his last breath. And our lives changed completely. Those were Deena's words. Still hard for me to go through that every time, even though it's been two years now. And even though we knew Bill's time was coming, we all took his loss extremely hard. He was a fighter. We felt that if anybody could beat this, it would be him. After all that the family had gone through, we decided that we needed to do something. We needed to find those suffering as well and to do that we needed to ease their pain as well. And this is why we started our foundation, The Sergeant Bill McKenna Foundation. Because for some, the war is over. For many, it has just begun. Thank you very much. [APPLAUSE]