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.