Friday, December 28, 2012

Testimony of Faith and Hope

    Christmas Eve day 2009, I sat alone in our house watching television, because it was the only thing I had the energy to do. After seventeen years of marriage, Aaron and I were divorcing and spending Christmas and New Years apart. Our marriage had spiraled so far downward, after his paralysis in 2007, that grief, hurt, anger and resentment had taken over. Those emotions overrode every waking moment and neither of us knew how to heal what remained. He told me I grieved for the man he was before his paralysis and I admit there was truth in that. I did miss the physical things we did together: working out, working in the yard together, intimacy, socializing, holding hands while going for a walk, or simply hugging him from a standing position. These were things that kept us emotionally connected.
      His leg's muscle spasms were so intense we hadn't slept in the same bed for close to two years. I'll never forget the day I was getting ready for work and he came into the bathroom. He used the counter to pull himself upright, put his arms around me and hugged me. I saw our reflection in the mirror and started to cry. I cried, because it felt good to be hugged like that again, but he perceived it as him not being man enough anymore.
     On this same Christmas Eve day, I received a phone call from my doctor with test results from a chest x-ray. For the past week, I had been running a high fever,was short of breath and coughing up small amounts of blood. After a visit to my Dr. and a chest x-ray it was determined I had a mass in my right bronchial tube. My right-lower lung had collapsed, which explained the shortness of breath and fever due to infection. Although the mass was an unknown, it had to be biopsied and removed. I remember trying to call Aaron, because although we were divorcing, we still cared about one another. He was always the first person I wanted to tell about anything important and as I sat there getting ready to call, I knew in the future that he wasn't going to be my "go to" person.
     When I finally got in touch with him and told him the results, he was quiet. I told him I would have a Bronchoscopy done within the week to find out if the mass was cancerous. I asked him to pray and he responded, "I'm so angry I can't even pray right now." Aaron was raised a Christian and always had a strong faith, whereas I had not asked God into my life until March 2008. My spiritual walk was at the infant stage, but it was the only thing holding me together at this point. I needed it to keep me focused and positive.
     I endured a bronchoscopy and CT scan without Aaron by my side. For the first time since his injury, I realized how vulnerable you are when you're sick and your body is not under your control anymore. I regretted I hadn't gone to more of his medical appointments, because I didn't think he needed me. He felt he shouldn't have had to ask and I realized now how much he needed me at those appointments. Instead, I had been focused on my management career, because it was my social outlet and escape from the reality I didn't believe I had the strength to endure. God was teaching me a lesson about empathy and compassion. I knew I needed my best friend by my side and I didn't have him.
     When Aaron returned home in January, he told me we were going to get through this together. He wanted us to focus on my health, postpone the divorce and for me to recuperate at home after the surgery. My mom had planned to come out and help since we didn't know what condition I'd be in post surgery. Aaron kept his word and was by my side going forward.
     After having a second bronchoscopy, it was concluded that the mass was cancer. The dreaded "C" word had entered my already unraveling world. Although this wasn't the outcome I wanted, I had prepared myself for it. I was afraid, but there was also an underlying calm within me. For the first time in my life, I had let go of control and turned it over to a presence bigger than me. Next was a PET scan to determine if the cancer had metastisized. During the forty-five minute procedure, I lay in the tube listening to the continual hum of the machine and recited Psalm 143. "Lord, hear my prayer, listen to my cry for mercy, in your faithfulness and righteousness come to my relief...Let the morning bring me the word of your of your unfailing love, for I have put my trust in you." I had a sense of peace within me. Afterward we waited three hours for the PET scan results, and God answered my prayers, because the results came back that the cancer was not mestasticized.
     On February 15, 2010 I had a bi-lobectomy, which means the lower two lobes of my right lung had been removed and the top lobe was spared. That was a huge blessing as we were expecting the entire right side to be removed. Over the next four days in the ICU, I did everything the physical therapist and doctor told me to even though I was in the worst pain I had ever felt. I was getting a glimpse of the type of physical pain that Aaron feels everyday due to neuro-pathic pain. I won't go into the boring details of my recovery, but I do have an eight inch scar as proof and I was out of commission for the next three months. I couldn't even lift a milk jug out of the fridge or put my own seat belt on when we went to follow-up appointments. God was teaching me humility.
     During those three months of being housebound, God was not only healing my body, but he was healing our marriage. At that point, Aaron and I both felt we had nothing left to lose, so every suppressed emotion from the past three years: fear, anger, hurt and sadness were now out in the open for discussion. I remember analyzing every conversation we had looking for a glimmer of hope that we were meant to stay together. I had nothing else to do but rest, so analyzing came easily and having cancer made me realize how fleeting life is and I didn't want to spend another minute in my pity party. Then it happened. The words I had been waiting to hear were spoken by Aaron when he said," I'm yours. You're mine. That's all we need. I don't want to take that for granted again." God had taught me patience. We reconciled and renewed our vows shortly after.
     I wish I could say the rest is history, but God was still working on Aaron's heart. He'd been struggling with anger towards the surgeon that paralyzed him, resentment towards the Army for numerous reasons, frustration towards a broken VA system, and anger for the loss of his physical body and military career. When everything you worked hard for is pulled out from under you then you're typically going to feel cheated. Processing grief is a unique timeline for each individual and it's not a process that can be rushed. Everyday he wakes up and gets into his wheelchair is a reminder of what he has lost.
     Unfortunately over the past six months, I attended church alone on all but maybe three occasions. Aaron doesn't sleep at night and it's nearly impossible for him to go to a morning service and stay awake. I would love for him to participate, but for the past six years it seemed his heart wasn't ready. So you can imagine my excitement when he asked if I would like some company during a Wednesday evening service. I'd been praying that God would open his heart to let the sadness pour out and let forgiveness flood in. The sermon that night was explaining that when you go to the altar and tell God your worries that you're receiving a gift from God and it's a blessing to be able to give Him those worries. However, in order to give a gift to God you need to use the attributes He gave you to glorify Him. I interpret that to mean it's okay to lay your worries at the altar, but don't use those worries as an excuse to stop worshiping Him and moving forward with what He has planned for you.
      The sermon definitely resonated with him. Aaron is looking forward, letting go of the past and dreaming again. Aaron wants to use his gifts to advocate for others. He's seeing what God has called us to do. Everything we go through in life is a test of strength and responsibility. God uses even our failures to teach us his blessings. God gives us a struggle and once we overcome it and build a strong foundation then he moves us up to our next challenge.
     Now we begin the challenge of turning our overgrown property into a place of respite, connection and healing. It's going to be a long process involving a lot of manual labor, but in the end it will be worth it. Aaron is back on the team and prayers are being answered. Our marriage, cancer and two hearts filled with grief are healing. For many years I couldn't understand why God wasn't answering my prayers fast enough, but now I know that He answers them on His time, not ours.


Tuesday, November 27, 2012

My Caregiver Hat

     Many days I feel the need to remove my caregiver hat. It's worn out, tired looking and needs to renewed, but it's under several other hats that I wear. My other hats are: wife, cook, maid, yard and house maintenance person, organizer, counselor, motivator, physical therapist and pharmacist. The last two I'm not licensed in, but I practice some of the duties on a daily basis. When I became a caregiver, I didn't go looking for the job. In fact, I didn't fill out an application and certainly no one checked references to see if I was qualified! It has strictly been on the job training: sink or swim and I have sank on many occasions.
     When Aaron was paralyzed almost 6 years ago, he was sent home with no medical follow-up care. The VA discharged him and the Army forgot about him. He was in limbo within the system. I wasn't taught how to care for him or to recognize medical issues. In fact, while he was inpatient at the VA there was no program to include me in much of anything. I think they forgot that I was the one who would be caring for him when he came home. I was doing things for him that I never thought I would do for another human being. Honestly, I was barely taking care of myself while trying to deal with the tragedy that had taken place.
     When we become caregivers, we take on a lot of extra burdens and over-function. When we over-function the veteran under-functions and that in turn leads to a vicious cycle. For myself, even when Aaron became more independent, I still over-compensated, because it was all I knew. He later told me that when I over-compensated it made him feel incapable. That wasn't my intention. I really thought I was helping. Everywhere we went, I was on the lookout for any situations that could be difficult for him. I didn't want him to struggle. I worried about accessibility issues, his lack of sleep, forgetting to take his medications, his physical pain, his current medical issues along with possible future issues and what if he tried to do too much and caused himself more pain? I had a difficult time learning how to step back and when to not help unless asked. I had to learn that he's a grown man and capable of more than he was right after his paralysis. I still struggle with this.
       Now that I'm not working outside the home, I have a need to feel validated and acknowledged. It's not that I want a bunch of "that-a-girls" but somewhere in all of this I tend to lose myself. I need to be reminded to take care of myself and take off my super-caregiver cape. I like to think that I can do it all and be perfect. I trying to be okay with mediocrity and I really don't like it! I need to feel connected with other caregivers that understand my thoughts so I have don't have to go into great detail about everything, besides I know that most people don't really want to know. Other caregivers simply "get it". When I interact with non-caregivers, I don't generally share my fears, because I don't want pity. I just want support. As military wives, we're very independent and have learned to rely on ourselves. We have endured so many deployments that we have become self-sufficient. We don't normally have family around to help so we generally just don't ask for help. We are quick to adapt.
     Fortunately, over the years, there has been an increase in awareness regarding caregivers of veterans. In fact, just this month Redbook magazine ran an article about Post 9/11 caregivers. I'm blessed to say that I know two of the women profiled. They have overcome in the face of adversity. I'm not trying to discount other caregivers, but I do feel that the caregiving of a veteran is unique. Many of us are young, have small children at home, have quit our jobs and are isolated from family. We're dealing with PTSD, TBI, amputation, paralysis, trying to explain to children why mommy or daddy isn't the same as before, while we as spouses are still trying to grasp that. We grieve for the loss of what we thought our lives would look like and loss of our dreams. Yet we press on.
     I want to remind you that while you're pressing on you still need to take care of yourself. I can hear you saying, "I don't have time to care for myself." Guess what? If you don't, then you'll crash.
I've been there, done that and it wasn't pretty. Not only was I hospitalized for a week, but my husband had to take care of me when he was needing to be cared for. I truly know how hard it is to slow down, but we have to care for ourselves in order to be there for others. In the South they say, "Ain't no one happy if momma ain't happy."
     Here's some quick tips: 1) Stop and breath 2) Be mindful of the moment. So often we worry about the next thing and forget to be in the present 3) No negative self-talk. Boost yourself up, not down. 4) Let go of control-What can you control? Let go of the rest. I'll let you know when I master this one! 5) Know that it's ok to say, "I need help". 6) Get rid of energy drainers. You know what I'm talking about. People that bring you down or create more drama that you don't have time for. Create boundaries for those people and say "no."
     If you want to find resources, aside from my resource list under the Sept archive, then check out  Hearts of Valor and Family of a Vet.  You'll find great tools, ideas and information. Also, there are many groups on Facebook that connect caregivers of veterans. Many of them are "closed groups" which means comments are hidden from view of non-members so you can post honestly without being judged. I check out Facebook daily. It is my social connection, a place where I can chat with others who understand me and can encourage me when I want to remove all the different hats I'm wearing. So reach out, connect and most important take care of yourself.

Monday, September 24, 2012

Resource List

I compiled this list over several years & my goal is create a "one stop" resource list. I haven't personally utilized all of the resources. As I discover new websites & organizations I update the list, so come back continually to see what's new! Clicking on a link will take you to the website.

Resources for Caregivers of Wounded Soldiers: (formerly Wounded Warrior Wives) -Quality of Life Foundation

VA Caregiver Support Program: -search for VA Form 10-10CG to apply. This is Post 9/11 veterans
*Note to VA approved caregivers: you're entitled to Hero Miles for respite care as well as in home/inpatient respite care. Ask about it! -National contact person for caregiver program

SCAADL- active duty version of caregiver compensation: -info about SCAADL for active duty DD Form 2948 -Fact sheet from WTU -SCAADL Calculator -DOD instructions on SCAADL -to search US Code-Title 37, Section 439

Retreats/Leisure for couples/families: -Purple Heart recipients

Retreats & Resources for kids: -free membership to "sitter city"  for childcare services - an affiliate of the YMCA for military installations

Organizations that build/adapt homes:

Travel Assistance: (888) 294-8560 -Assist wounded warriors & veteran's when flying: from curbside, thru security and to the gate.

Resources for navigating the MEB process:

Acquiring Medical Records & DD214: 

HIPPA complaints:


Mental Health & TBI/PTSD Education: -peer support groups based in TX

Education/Scholarships for spouses/children:


Service Dog Organizations: -full listing of ADI members by state -Wilmington, NC -Rockwall, TX -CA and FL -Smithtown, NY -Bedford Hills, NY -Highpoint, NC -Marlton, NJ -NY and CT -Englewood, CO Tampa, FL -Nogal, NM -N Berwick, ME -Princeton, MA -Orange City, FL -Savage, MN  -Ipswich, MA  -Dripping Springs, TX

Financial Assistance:

General Resources: - TX Veteran's Commission -grants free tickets to events -vacation deals -vacation deals -Nat'l Veterans Legal Svc Program -bringing vets together to heal -assisting Iraq/Afghanistan vets in health, community & education -provides temporary housing -assistance for those being treated at BAMC in TX -assist w/hardhips, MEB, coordinate legal issues -motorcycle group that attends funerals of fallen service members -Christian based books to aid in PTSD/TBI and combat healing -Housing & employment, based in CA - Blind Veterans Assoc - Paralyzed Veterans Assoc -provides free plastic/reconstructive surgery, orthopaedic reconstruction, urologic treatment, otolaryngological care, mental health, exam & treatment of reproductive issues. -San Antonio coalition for vets to find resources & help with the VA -for wounded soldiers in the D.C., Maryland & Virginia areas -resources for vets located in TX -TX -assisting wounded soldiers w/ranching & farming -Nat'l Military Family Assoc - Recv'd Purple Heart medal in  Iraq or Afghanistan -veteran's forum & resources -site specific to dealing with amputation -American Pain Foundation

Leisure/Healing activities for wounded service members: -Colorado -FL -activities for soldiers to incl-Soldier Ride -helping wounded vets heal thru cycling events -fishing events for vets to aid in PTSD recovery -ranch in WA for vets/families to enjoy the outdoors -hunting -hunting/fishing trips for wounded svc members (not just Marines) -hunting & outdoor trips -sponsors kayaking events for wounded soldiers & families -fly fishing in MT -sporting events around the country for disabled soldiers -promotes independence for ppl w/disabilities thru their facility in AL -sponsor svc members to participate in sporting events around the USA -free outdoor trips -funds different sporting events incl. travel/lodging for marathons, bike races. -sponsors wounded svc members to attend sporting events - horse therapy located in TX - horse therapy located in TX -Hunting trips for soldiers/veterans in TX -"Boots of Honor" equine therapy in TX -"Horses for Heroes"  located in N. TX -activities for wounded soldiers

VA /Government websites: -Independent Living Program -Appeals -Small business programs  -Center for minority veterans -Center for veteran's enterprise  -Center for women veterans Compensation Gulf War disablty -Compensation rate tables 12/03 -Disability exam worksheet index  -Due process -Duty to assist -Electronic Code of Federal Regulations Homeless veterans -Fee basis for outpatient svcs -Guideline for chronic pain/fatigue Geriatrics & extended care -Depleted Uranium FAQ

Helpful Books:

"Rule #2 Lessons I Learned in a Combat Hospital" author Heidi Squier Kraft
"Once a Marine: An Iraq war tank commanders inspirational memoir of combat, courage & recovery"
author-Nick Popaditch (OIF vet) with Mike Steere
"Exit Wounds: A survival guide to pain management for returning vets & their families" author-Derek McGinis (OIF vet) and Stephen R Braun
"Hope for the Home Front" -author Marshelle Waddell
"Wounded Warrior, Wounded Home: Hope & Healing for Families..." author Waddell & Orr
"When War Comes Home" authors-Adsit, Adsit & Waddell thru
"Combat Trauma Healing Manual" available thru
"Forgive for Love" author: Luskin (not only applies to relationships, but forgiveness in general.
"The Love Dare" author-Kendrick (as featured in the movie Fireproof)
"Penny's from Heaven" author-Patsy Swendson (book about service dogs)

Tuesday, September 11, 2012

A round of paws for service dogs.

The image above is on Patriot Paws service dogs' van. It was taken  May 2009 when Aaron was training to receive his service dog, Lane Murray. He and Lane are the middle photo and the caption reads, "for the first time in two years I forgot to be mad." For someone like Aaron, that was going through so many difficulties at the time, Lane was his focus instead of his anger at all the injustice around him. Aaron was paralyzed during back surgery due to a surgeon's mistake and there was no restitution. In addition to that, Aaron's military career was over after 18 years of service. He has chronic neuropthic pain, doesn't sleep regularly and has PTSD related to the traumatic event of waking up paralyzed. Receiving Lane was a blessing in so many ways: she calms him, takes the focus off of him while in public, she's his companion and more.

The Patriot Paws program (accredited by Assistance Dogs International) utilizes the Gatesville, TX women's prison system to train service dogs. If you'd like to see a PSA on You Tube search for: Patriot Paws Service Dog Program. Aaron had been on the wait list for a year and a half. So when he got the call that his name was at the top of the list, he was thrilled. We would be driving to Texas to train in the prison facility, with the inmates, for 10 days. I'll admit that I had preconceived ideas about the women we would be interacting with, but by the end of that time, my thinking changed 100% Think about your past and some of the mistakes you made, but maybe you didn't get caught or the mistake was minor. Some mistakes are big and have huge consequences. These woman choose to make a difference by giving back to veterans. We met some amazing people throughout our time in the program and all my thoughts are positive when I think back to those 10 days.

What a lot of people don't know about the placement of a service dog with it's owner is that the dog chooses, not the owner. Before arriving to the prison, Lori Stevens (founder) had 3 dogs selected that she felt would be a good match for Aaron. This was based on physical needs and his typical days' activities. You don't want a hyper dog if the owner is low-key and vice versa. For the first few days, Aaron worked with several dogs to see how they interacted with him and then after 3 days, Lori started putting the pre-selected dogs with Aaron. There were 2 dogs that responded well to Aaron and followed his commands. Lane specifically would attempt to put her body in front of Aaron whenever another dog worked with him. She was choosing him! During the training time, Aaron worked with Lane on tugging open doors, pushing drawers/doors closed, turn lights off & on, removing shoes & socks, going under the table for use in restaurants, push on the pads to open automatic doors, alert someone if Aaron needs help, picking up dropped items, and pull the bed sheets down, just to name a few.

When Aaron would go out in public, people would ask ignorant and rude questions about how he was injured, as if they had to right to know. However, when he brought Lane home all the focus was on her, she creates a distraction away from him. "What can she do?" "Does she ever get to just be a dog?" "Who takes care of her when you travel?" "Does she bite?" "Why does she have a muzzle on?" To answer the questions: she can do a lot, she is all dog when the service dog vest comes off, she travels with us everywhere we go including airplanes, no she doesn't bite and no that is not a muzzle. It's a gentle leader, which is like a horse harness. Wherever Aaron pulls the leash, her head and body follow. Lane is 80lbs of 4x4 strength.

A trip to the grocery store takes twice as long, because every other aisle has someone that wants to know all about Lane. Plus Lane knows how to work the "sad" face to get attention from people and she's very social. If she can get one person to pay attention to her or if she gets what we call a "pet by" then she won the lottery. There's always that one person that tries to get her attention by whistling, trying to pet her, calling to her, etc. Please do not do this if you see a service dog, although they're focused, they still love attention. An interesting tid bit about dogs. Their sense of smell is much keener than humans, so when we walk down the food aisle all we smell is one scent, whereas a dog smells every single scent in that aisle. You can imagine how intriguing that is to a dog and how focused a service dog must be to not stop at all the items on the shelves and start sniffing.

Lane has journeyed to the Epcot Center in Florida with us and managed the crowds around her for 8+ hours. She was allowed to sit next to Aaron on a ride, although she ended up on his lap at one point when a loud sound startled her! She certainly did not care for the fireworks display at the end of the night. Lane has been in the 2011 Rose Bowl Parade. She and Aaron were invited to attend and sit on a float honoring service members. Unfortunately, at the last minutes, she and Aaron were switched from the "TV side" of the float to the opposite side, so they didn't get to enjoy their 15 minutes of fame. However, Lane has been featured on "NBC Nightly News with Brian Williams" before we received her. Of course, we saved that video for our claim to fame. Lane loves to swim in our lake, but doesn't care for baths, she asks permission to get up on the bed by putting her muzzle on the edge of the bed and tapping it, loves to be chased by our 6 month old Rottweiler, knows the word "walk" in any sentence so that we have to spell it out unless we're ready to go out the door, always gets the last spoonful of my ice cream, tortilla chips when we go out for Mexican food (under the table of course) and adores children.

I've said a lot about service dogs and my main objective is to create awareness of what they have to offer. A person doesn't have to have a visible disability to get a service dog. Veterans with PTSD can benefit from a service dog, a person with a brain injury, which may affect balance for example, can benefit from a dog that can help brace the person. There are so many benefits that service dogs offer, so look into it or spread the word if you know of someone. One thing to remember is that all of these organizations need donations of time and/or money, volunteers, puppy raisers and more to succeed and place dogs.

To end on a humorous note: Aaron has always referred to me as "Babe" and we've been married 19 years. At some point, I noticed that he started calling Lane that nickname. I tease Aaron all the time about it and ask him, "When did I become the 3rd wheel in this relationship?" Apparently, I have another female competitor for my husbands's attention! :-)


Sunday, April 15, 2012

Letting Go

"All to often you have to be at the end of your rope to be tempted to move through your fear, and to let go of the unfamiliar, the unknown, to change." 
                                                                                 author unknown

I remember when the Dr.  told me Aaron was paralyzed. The first words out of my mouth were, "I'm an Army wife. We'll get through this." I had no idea what the road ahead was going to be like. All I knew was Aaron's legs didn't move anymore and there was a small chance that he could regain movement within one year. I clung to that. For that entire first year, I kept telling myself that he was going to walk again and then this nightmare would be over. Just like that...a bad dream.

Only that isn't what God had in mind for us. One day, I was chatting with an elderly neighbor and she asked how I was doing. First off, it was very rare for anyone to ask how I was doing. It was always, "How is Aaron? Is he walking yet?" How do you answer that over & over again with the same disheartening answer "no." Didn't people stop and think about what they were asking? Only this time someone was asking about me. I told her I had it all under control, because that it what I do best. I try to control things. I don't like things to be messy, unorganized or inefficient. She told me God is in control and this didn't sit well with me. At this time in my life, I had no religious affiliation and hadn't accepted God into my life.

When one year rolled around and I realized Aaron's wasn't going to walk again, my world really fell apart. The denial had to end. All the control I was hanging on to was out the door. I wasn't in control. I was angry, resentful, depressed, feeling sorry for myself, lashing out at the person I cared most about and unfortunately not working through the grief process. My spouse was still here, so why would I be grieving?

How do you accept something that turns your life so upside-down that you basically have to start all over? When the dynamics between the person you have spent more than 15 years with change? When you don't even know if you want to stay in it anymore, because you don't think you're strong enough? Aaron referred to himself over and over again as "Broken" and it really bothered me. But wasn't that what we were? Broken?  I know now when you truly hit bottom and are truly broken is when you need to ask for help. Until then, I hadn't asked for help, because in my mind asking for help equated to weakness. Guess what? I couldn't have been more wrong. I had to learn how to accept our new life or come to terms with it. How do you do that?

Many of my friends, who are also wives of wounded soldiers, have spoke about this before.  Sometimes we refer to it as "letting go" or "coming to terms" or our "new normal." Some of us are 5 years out from our spouse's injury while some are less than 2 years out. What does it look like? How long does it take? Do you ever really accept your new life or do you just learn to cope better as time goes on?

In my opinion, reaching out to others and letting go of control was what I personally needed to heal. Until I was able to reach out to others and get help from a therapist, I wasn't healing. I hate to admit it, but up until Aaron's injury I had been very selfish and ego driven. I didn't want to be inconvenienced. Now when I'm in a situation that is not ideal I'm able to say, "Karen, it's not always about you!" This took a lot of growing up on my part and I wish I had learned this much earlier, but my Dad always said I had to learn things the hard way!!! I also had to learn to let go of control and worrying about everyone elses opinion. In the past, my house and yard was always "perfect." Ha Ha, not anymore! I learned how to be ok with mediocre and it's not so bad. Plus my stress level and blood pressure have gone down.

I guess the answer to my question is that I have come to terms with our new life. To me there is a difference between coming to terms and acceptance. I don't accept the lack of accountability by the surgeon, the lack of help from the Army, the lack of home health care after he was discharged by the VA, being denied TSGLI, and numerous other benefits that he should have been entitled to after 18 years of service. (See, there's that bit of anger in there) This lack of acceptance is what fuels me to change things for those that follow behind Aaron and I. I'm not one to be apathetic and just say, "Oh well."

I still get sad or even a little envious when I see a couple walking together and holding hands. I miss that and I always will, but I don't dwell on that anymore. They are fleeting moments I allow myself to feel and then I move on. For me, this is our new life and even though I don't always like it I have to embrace it. If I don't then I can't move forward. It's only when we relinquish control that we begin to live.

Saturday, April 14, 2012

Working through the pain

Aaron's initial injury was caused while he was an Infantryman back in 1989. The soldiers would do field exercises and one of these was called a human breach. Aaron was chosen that day to use his body as a bridge.  His body lay across his M-16 (weapon) and the other soldiers ran across his back like a bridge. Now, I don't know about you, but when I first learned about this practice I thought it was ludicrous. How could anyone's body withstand that type of weight of their spine? It turns out that it can't.

Soldiers are trained that to seek medical help is a sign of weakness and if you do seek help then you may be put on a "profile" If you are medically unable to report to duty then you're letting your team down. So, more often than not, soldiers don't seek help. Aaron's back was injured during the human breach, but he didn't seek help for over 2 months due to deployments to Panama and Korea. Finally he sought medical attention and at this time was told that he needed to get stronger, stand up straight and that he had a pulled Trapeze muscle. I have to laugh at this, because Aaron was in top physical shape. I don't think he could have been any stronger. Just look at the photo below, taken while he was a lifeguard (Mt. Sinai).

For the next 3 years, Aaron perservered thru enormous pain in his thoracic spine (mid-back) and completed his time as an enlisted soldier. He was doing what the military has taught him..."to suck it up." He then graduated with a B.S. in Nursing (my career sidetracked his goal of becoming a Physical Therapist) and decided to go back into the military as an officer in 1998. During this entire time his back caused pain. I remember when he would stretch his body across our couch to try to relax the muscles, press up against a doorjam to relieve the pressure or how we rarely went to movies, because he couldn't sit that long in one position. Looking back, I really don't remember him complaining much. He just did what he had to do.

Obviously, nursing is a physically demanding career and the Army makes it even more demanding. Being in an understaffed hospital meant that nurses routinely maneuvered patients without assistance and the heavier a patient, the more strain it put on his back. He still did it, because it was his job. Later in 1998 he asked a Dr. for an MRI consult. The Dr. hesistated due to it being an expensive procedure, but the results didn't lie. Everything that Aaron felt over the years was right there on the image. The Dr. told him that there was bulging discs, compression on the spine and spondylosis (change in the signal thru the spinal chord). At this time, surgery wasn't a consideration. Most people will tell you that back surgery is a last resort.

Late 2006, Aaron was sleeping beside me and I couldn't fall asleep, because about every 30 seconds his legs would jump. He mentioned to me how tired he was lately and I said "Do you realize that all night long your legs are jumping?" It's no wonder he was tired, because he wasn't getting any deep sleep. In reality, his legs were spasming due to the pressure on his spinal chord. Also the pressure on his spinal chord was creating fasle sensation in his bladder making him feel like he had to urinate and this would wake him up throughout the night.

Jan 10, 2007 Aaron volunteered for an upcoming deployment to Iraq. He was scheduled to leave towards the end of February. However, at the same time his legs began to give out on occassion. I recall one day he was walking down the stairs in front of our house and I saw his legs give out. He tried to hide it until I said, "Did your legs just give out?" Of course he responded with, "I'm just really exhausted." Now I know that he was in denial with what was happening, because he wanted to deploy. The symptoms continued and he reluctantly sought help from Dr. Floyd (a neurosurgeon he had deployed with in 2003). Dr. Floyd was concerned enough that he referred Aaron to Dr. Haroon Chaudri at MCG in Augusta,GA. This referral led to the diagnosis that Aaron needed back surgery. Dr. Choudri recommended that Aaron not wait until returning from a year long deployment, because one wrong move in Iraq could do damage and there wouldn't be proper medical resources to help Aaron. He told Aaron that "if you keep doing your job, you will go paralyzed."

So, Aaron sat there for several minutes thinking. I was trying to figure out what was going thru his mind. Now, I know that he didn't want to have the surgery because this meant another soldier would have to go in his place. Soldiers just don't do that. At the same time, he hoped that the surgery would alleviate the constant pain and our lives could get back to normal.

When Aaron came out of surgery on Feb 7th, he was in more pain than he had ever experienced. The trauma caused to his spinal cord during surgery not only paralyzed him, but caused him to feel like, "Someone is stabbing my back with a knife and twisting it around and like being cut alive." Not only had the surgery gone terribly wrong, but his pain was worse. How could this have happened? Why isn't the surgeon doing his rounds on Aaron. Why wasn't the surgeon or his team speaking to me after the surgery? What did this mean for our future? Was his career in the military over? Would he ever walk again? My mind was filled with questions that I didn't know the answers to and I was a person that wanted answers. I needed control and I didn't have it.

So, years later Aaron is still in a wheelchair and still in pain. Of course, he looks back and says, " I should have deployed" and I reply, "At least you're still here." For him, this links to the notion that if you're not injured in combat then your injury isn't recognized the same. I've seen it time and time again by the lack of resources available to him. He deployed numerous times and came back safe. It just so happened that he was injured stateside after all those deployments. It doesn't make his sacrifice any less than anyone else's. I'm saddened by the fact that the Army brushed him off when he was first injured. If someone had listened back in 1989 maybe he wouldn't be where he is today. But we all know going down that road is not productive.

 I don't understand how he manages each day in 10+ out of 10 pain. I couldn't do it. He goes around with a smile on his face and is pleasant to everyone he encounters. He hides it so well  that even I forget  that he is hurting, but he is and he always will be. There is no remedy for neuropathic pain. I have to believe that Aaron is still with us today, because he is going to serve a bigger purpose. That's the only way I can make sense of it.

Thursday, April 12, 2012

Back in time-Surgery causes paralysis

I've been contemplating starting this blog for close to a year. What stopped me, until today, was the thought that what I have to share isn't that interesting. Until recently, I didn't have the desire to dig up the past 5 years of tragedy, betrayal and heartbreak. However, what I have learned is that I don't have to do that in order to tell our story. My good friend, Roxana at reminded me that if I can touch one person, then our story is worth telling. In reflection, I now see that our story is one of perserverance, courage and a desire to move forward. Although, this will be a bit dry to start, it is necessary background to help people understand how this all began. So, bare with me thru the details:

On 1/10/07 my husband Aaron was given orders to deploy to Iraq for 13 months. His departure date was set for 2/23/07 and it appeared that he was going to one of the prisons in Baghdad or S. Iraq near the border. I journaled, "At least this time he'll be safer...I'm teary even thinking about it and yet I know so many woman have done it before me....I'm proud of what he does & stands for & I'm proud of him."

This all changed when on 1/16/07 we consulted with a Thoracic Neurosurgeon regarding Aaron's worsening back pain. The surgeon recommended having surgery now and Aaron's wanted to wait until he returned from deployment. The surgeon felt this would be a mistake.When we finally made the decision to schedule Aaron's surgery it was because we  feared that if we didn't, Aaron's ability to walk might be affected for the rest of his life. We knew that this surgery would be serious, but were assured that Aaron would be back to work in 6 weeks and able to resume O.R. Nursing duties. We never imagined , after that day, that nothing would ever be the same.

On 2/7/07 Aaron went in for surgery and at 11:45am I was put into a private room to meet with the surgeon. He told me that Aaron was not able to move his legs, but it was likely due to "spinal swelling" and he had a chance of walking within one year. I told the Dr. "That's allright. I'm a military spouse and we'll get thru this." Obviously, I was in shock and had no idea what was ahead of us. It was several hours later when I was taken to see Aaron that I realized everything was not allright. He was in excruciating pain and going in and out of consciousness.

After 2 months of inpatient rehab at the VA, Aaron returned home and this is where life got really tough. He is paralyzed at level T-9 and with that comes a host of daily and lifelong medical issues. I could go into great detail about the anger, resentment, grief and near end of our marriage that was the fallout of this tragedy, but what really matters is where we are now. We're still learning our new normal and how the dynamics between us have changed. I've had to learn to become more patient, compassionate, less controlling of my environment, cope with my emotions & fears in a productive way and biggest of all to forgive. Forgive all the people that weren't there for us, the entitlements that were denied because his injury wasn't combat related and to forgive one another for our weakness' in dealing with the tragedy that has forever changed the landscape of our lives.

So, this is where this blog begins. You now know the background of our story and from time to time I will reference past events to clarify the journey. It is my hope to encourage others and allow them to see that it can get better. It isn't easy, but as I learned from a popular quote "life isn't about waiting for the storm to pass. It's about learning to dance in the rain." This is a daily life lesson that I keep in my mind when I get sad or frustrated. I can honestly say that I wouldn't want to go thru the past 5 years over again, even though I know it's what made me a better person. The pain and grief were almost unbearable at times and to feel you have no control over someone else's pain and suffering made me feel weak and useless. It wasn't until I became a Christian 3 years ago and got counseling to help me learn coping strategies that I became more resilient, compassionate & grateful to be the wife of a man who gave his health for his country. I'm finally at the point that I know what my purpose is and I have hopes and dreams for the future again!

Five years ago, I didn't think I could live this life, but now I know with Aaron by my side we CAN live this life and I'm proud to live it with him.