Previously I have tried to always write and post in the order things have happened. So, I am always behind and trying to catch up with our life. Then I get discouraged and decide not to write and then I have large gaps in time and get further and further behind. Therefore, I am going to start to write whatever hits me!!Last week we had the privilege of attending the Army Wounded Warrior Symposium. We were asked to serve on the media panel and I had to write and give a speech for the media. It was a great experience for me and is awesome to be able to share my side of our story. Below is a copy of what I said.
I am Gina Hill and I am the wife of a severely injured soldier. 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 children. 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. Our kids have had to become caregiver’s for their dad instead of just being kids. They are well rehearsed in PTSD, calling 911, 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. But, our kids are resilient and handle it very well. I just wish that they received more recognition for the sacrifices they have made and continue to make everyday.
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 911 for assistance. 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. 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.
Struggles I face specifically as a spouse of a warrior suffering with PTSD are many as well. 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! As a spouse, we have to make a choice as to whether we are going to learn to love them with their PTSD/TBI or whether we can handle that task. Some of us just aren’t able to handle that, but I am absolutely thankful that I am one that can. Our worries are great and can be as simple as dealing with going out in public as a family in any situation. Just going to a restaurant or the grocery store can turn into a huge ordeal. We have to be constantly prepared for anything and be able to stay calm and handle the situation for our spouse, our family, and many times the public. It is not an easy road.
While we do have many day to day struggles, we have had plenty of blessings along this journey as well. One of these came to us from an organization called Puppies Behind Bars. They provided Allen with a service dog specifically trained to help him manage his PTSD and TBI. There are many tasks she assists him with, but one of the biggest is her ability to bring him back from his dissociations. What used to end in a call to 911 now ends with him coming back to reality with her kissing his face. She has given all of us much more confidence to go out in public and be more active in life. She is a comfort to all of us because we know she has his back! Another blessing Allen has received is Emma, his electronic medication management assistant, he calls his pill ATM. This system alerts him when it is time to take his medications, all 16 of them! It then dispenses the medications he needs at that time and communicates with the monitoring company In Range that tracks his refills, inventory, and his compliance with taking his meds. Emma has made him more capable of managing his medications without as much of my assistance which helps him feel a little more in control of his own life. Currently this system is only available for active duty service members, but In Range is working diligently to get it approved through the VA.
Through all of this, our AW2 rep has been there for us. Not only does he support us, he gives us lots of information or advocates for us when the need arises. If he hasn’t heard from us for a while, he is always sure to check in and if we ever need him, he is just a phone call away. That is very comforting for us, knowing that we have that support and assistance available at all times.
Lastly, participating in the AW2 Symposium is very important to us for many reasons. It helps us heal by sharing our story, as well as giving us the sense of helping make this road better for other families facing similar situations. Allen and I both feel that if we don’t share our own story we can’t expect for things to get fixed that we have struggled with throughout this journey. 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. It is our honor to be a part of the symposium.
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