By Gina Hill, AW2 Spouse
The last time I boarded a plane to Washington, DC, I was alone, scared, and on my way to see my husband who’d been medevaced out of his second deployment in Iraq. I was on my way to Walter Reed. All of that came flooding back yesterday as I made that trip again—it was my own unexpected emotional flashback. This time, however, I was returning with a greater understanding and a clear purpose: to take a stand on behalf of my husband, retired SSG Allen Hill, and the thousands of other Veterans and Army Families who struggle daily with PTSD. I was going to brief Capitol Hill at the Mental Illness Awareness Caucus.
As I looked at the panel, I was a bit overwhelmed. COL Gregory Gadson, AW2’s Director, spoke about his struggle with PTSD and TBI and how his Family got individual and Family counseling. SGM Robert Gallagher of AW2 spoke about his “wounds above the shoulders” and about his realization that there was no silver bullet to fix his brain injury—that he just had to learn and apply the tools that were provided and work in partnership with his medical providers. Army wife, Sherri Hall, told of the night she looked at her husband and said, “I might clean up your beer bottle in the front yard as you cope, but I’ll be dammed if I’m going to clean up your brains off the wall—I will not tell our kids you didn’t take advantage of the help that was available for PTSD” and how he now trains resiliency at Ft. Riley to help other Soldiers.
And then, next to me, sat the Vice Chief of Staff of the Army GEN Peter Chiarelli. I was excited and a bit surprised by his passion for and candor about PTS and TBI injuries. He pointed out that, “The science of the brain is not as advanced as the rest of the body and we need to learn as much about the brain as we do the rest of the mechanical issues.” He stated we needed a larger discussion in society about mental illness and we all need to take on the stigmas that surround it in a larger conversation, adding, “I believe it’s a national crisis.” He talked about new technology such as tele-behavioral health medicine and the TBI bio-marker and stated, “we’ve done a lot for PTS, but we’re not where we need to be.” He urged everyone to help with expanding the science of the brain and reducing the stigmas connected to those with mental illness. It meant a lot to me that he got it, I mean really got it.
I don’t share our story publically for sympathy. I share it because it’s my way to ensure people better understand that PTSD is real and to reduce the stigma associated with it. Many people fear what they do not understand. The more we know, the more we understand, the more we can help. Allen is a hard worker, a patriot, a Veteran, a father, a husband—and should not be defined or limited by his mental illness. My older son Makale bluntly put it in a blog this way, “Just because he is different now than before—he’s not crazy!”
Allen and I know that if we want things to change, we have to lead it. We hope that by sharing our personal struggles and accomplishments, we will shed some light on things that need fixed and share the blessings we have received that others may not know about. And more importantly, we can hopefully make things better for those that will follow.
As my 8 year old son said last summer at an Army event, “My dad fought in the war to save the world,” and to that I add, it’s our turn to fight for him and the thousands like him with various mental illnesses.
While the majority of his physical, or visible, wounds have healed, our Family still struggles daily with the psychological wounds. Often times, these are called the invisible wounds, but I have a hard time calling them that, for they are very visible to anyone who spends any amount of time with him.
These psychological wounds greatly affect not only the Soldier, but the entire Family. My husband’s triggers are now triggers for myself as well as our 2 children Dreyson who is 8 and Makale who is 14. In the rare times we are away from my husband, we are constantly on high alert for his triggers. It is next to impossible for us to turn that off.
The impact of my husband’s PTSD on our Family was immediate. When we left Walter Reed, Dreyson was 4 and in pre-school. We’d been home a couple of months and it was one of our first trips to the VA and Dreyson joined us. Allen, my husband and a retried Staff Sergeant, has problems in new locations and especially long hallways. A few steps into the VA, my 4 year-old son saw the physical changes in Allen, grabbed his hand, and began to lead him down the hallway saying, “don’t worry dad – he’s just a doctor, don’t worry dad – that’s just a door slamming.” I cannot hide my husband’s illness. I don’t have to explain it – my children live it every day. Since the age of 4 my son has been a caregiver to his father. In an AW2 blog, my son offered this advice to other kids of wounded Soldiers, “If your dad or mom has flashbacks, do not be afraid. It will be okay.”
My children are caregivers first, and kids second. They are well rehearsed in PTSD, calling 9-1-1, and explaining why their dad has a service dog, why he isn’t at many of their events, and why he sometimes acts really weird. They also have to understand that plans are NEVER set in stone and are always contingent on their dad’s current mental state. Even things they have their heart set on, sometimes doesn’t happen when they expect or want it to. Any friends they want to have over to our house also have to know the deal with their dad and that sometimes things quickly get very chaotic at our house. They never really know what to expect next and have to be very flexible with their needs and desires. These aren’t things most kids have to worry about.
When people thank my husband for his service, I just wish they’d stop and recognize the sacrifice of our children. They have given a lot. They served, and continue to, every day.
Although I used to teach full time, I now am a full-time caregiver for my husband. One of our biggest fears is that my Soldier will not be considered “injured” enough to qualify for the benefits of the newly passed “caregiver’s bill.” While my husband is physically capable of dressing, transferring, toileting, and bathing independently, he still requires supervision and reminders to perform these daily tasks. Without these reminders and assistance, most of these tasks are left undone. Due to the severity of his dissociations, my husband is unable to drive or to be left alone. Even within our own home there are many external, environmental triggers that can send him running to the middle of the street completely unresponsive to anything outside of his head, or ducked in a corner taking cover for hours. Many, many of these instances have ended with me having to call 9-1-1 for assistance, 15 times in a span of two years to be exact. Yet, he is not injured severely enough to qualify for much of the assistance available to the more physically injured warriors. We do not qualify for housing assistance that would allow us to move away from the rock quarry a mile from our house that blasts everyday and makes him think there are incoming mortars or the railroad tracks 100 meters from our house that cause a lot of loud noise and vibrations that he interprets as some type of danger. Recently, we got a contract on our house – and while I’m excited to find a new home that offers less triggers and turbulence for my Family, we are unsure where we’ll go. We simply put our faith in God and that He’ll provide. Currently, we also do not qualify for any type of respite care that would allow me to leave the house for errands or a job. All of these things we get denied for because they can’t see his wounds and this just fuels his PTSD and the depression and self harm feelings that go along with it.
Time and time again, we have come to realize that the whole system doesn’t know what to do with these guys. I’ve been told by someone in the system who is there to “help” that most Soldiers with PTSD like my husband’s just end up in jail, homeless, or dead. This is not an acceptable attitude.
Last summer, my husband attempted suicide. We went to the Kansas City VA, where he was admitted for a week. They directed us to the Topeka VA which has a PTSD program. Tricare would not cover this treatment because it’s the VA’s responsibility. As I was sorting out the paperwork, and how to get my husband into a local program, each day he struggled to hold it together saying, “I don’t think I can handle another day.” Each day, I feared for his life. He needed help. He wanted help. He sought help. But, he was denied help.
Finally, on my own, I found an inpatient treatment facility called The Pathway Home in California. We flew across the country in September to admit him. He’s been there now for 7 months, and recently graduated from the PTSD program but will remain there until we get settled into a new home. They are also still trying to figure out if he has been completely diagnosed and are searching for somewhere that can accurately diagnose everything that is going on with him. Three and a half years post injury, there are still many unknowns regarding my husband’s injuries.
Struggles I face specifically as a spouse of a warrior suffering with PTSD are many. It is difficult watching the person you love fighting to get back to the person they were before war because they do remember what they used to be like, they just can’t figure out how to get back to that person. We have worked very hard to focus on the best he can be now, not who he was. Every part of him is different and when I say every, I mean every. With that being said, it is extremely difficult being married to someone who is completely different than when you married him. There are times that I see glimpses of the man I married, but they are few and far between. I’m not sure whether these glimpses are a blessing or a curse!
Returning to DC this week has been amazing. My memories of fear and helplessness have been replaced with empowerment and advocacy. My uncertainty replaced with a purpose – to educate others about post-traumatic stress through an open dialogue. If you want to join me (and the Vice) in the conversation and affect change come chat at The Invisible Wounded Blog.