Monthly Archives: December 2012

Camouflage and Christmas Lights

For all our troops deployed, and for all those who wait for their return.  Our prayers are with you all.

Deep Breath. . .

It always looks darkest just before it gets totally black.  ~Charlie Brown
Take a deep cleansing breath. . . slowly exhale while counting to five. . . here goes nothing.
I have been thinking since the CBS piece was released that if we are truly going to give a “face” and “voice” to caregiver mental health that perhaps we need to start openly sharing what it looks like inside our heads and bodies.  Bring a flashlight, it’s dark in there.
Why not hang my mental health issues on the clothesline for all to see?  It’s time to start addressing what I see in me, my children, and the community of caregivers I serve.  If we’re going to give our fellow caregivers a voice, we have to first be that voice in the world, and until we are ready to do so, we have no business talking about it.  Please realize as you read this that I am baring heart and soul not only to the reading audience, but also to my children, our families and friends, my spouse. . . who knows I’m crazy but does not always know the depths.
I have been medicated for depression and anxiety for years.  Long before my husband was injured or I became his caregiver.  I’m not new to this, but never has it been as bad as in the past few years.  Perhaps you’ve seen the Cymbalta commercial that says, “depression hurts.”  Boy, does it ever.  
If not for the external pressure to appear in the world every day, I might just stay in bed.  Ok, that’s not entirely true.  I always get out of bed.  In fact, I haven’t had a good night’s sleep in years.  Each night we battle Sean’s nightmares, sweats, pain, insomnia, snoring, and constant kicking due to Restless Leg Syndrome.  Add to that my own fatigue, insomnia, and crazy dreams.  A few years ago my doctor prescribed several different sleep medications.  While most of them helped me fall asleep, none of them could keep me asleep.  A very low dose of Seroquel was the only medication that would help me sleep through the night, but I spent every day like a zombie and we had issues with a child sneaking out at night because I couldn’t hear her.  Plus, when Sean needed me or was having a nightmare I was unable to help him.  I try to nap, but usually something disrupts me or I don’t feel like I have gotten enough rest when I wake.  I normally sleep for two hours at a time, some nights I get up after the first two hours because there is no falling back to sleep.
I have vivid claustrophobic dreams where I am climbing stairs or ladders and the walls start to close in on me, or I need to climb through incredibly small openings and mazes.  The dreams started after several traumatic incidents occurred during Junior High.  They are triggered by stress in my life and I wake up in a panic.  If I feel trapped or cornered, if I am in a small space, or if Sean tries to hug me at the wrong time, it sets off feelings of panic and need to escape NOW. 
There are days when I cry uncontrollably for no apparent reason.  No matter what I do, my emotions come spilling out and make a huge mess.  I am much better at repressing my feelings.  Avoiding.  Pretending.  Eating my feelings.  Just sit and not do.
In contrast, I have developed several OCD tendencies and my mind will not rest while that piece of fuzz is on the floor, the glass is on the counter, or the sink needs to be wiped out.  I clean.  Then I clean.  And I clean up after that.  I make lists.  I check them off.  I make more lists.  I make lists that include the words, “check other to do lists.”  I cannot stop my brain from rehashing what I need to do.  I vacuum and think about when I will need to do it again.  I go into the bathroom to make sure it is still clean.  Toothpaste in the sink?  My heart races and I start to sweat.  I *just* cleaned that sink!  I know it’s irrational.  I can’t stop it.  
Driving has become horribly difficult for me.  My driving anxiety started while Sean was in Iraq after I encountered several mishaps on the road and drove through lots of nasty weather.  In the years following my anxiety has gotten worse.  The day before we must be on the road I start to think of excuses not to go.  I wish for something else to come up.  I secretly hope one of us gets sick.  Driving causes me not only stress and tension, but results in anxious itches, headaches, and extremely heightened sensory sensitivity.  I can feel the seams in my clothes.  A lose v-neck shirt makes me feel like I’m choking.  My toes go numb.  I get a twitch in my back.  My heart races and my mind rushes.  I fight the urge to throw up.  When we arrive at our destination I am completely exhausted and my body aches.
While waiting to board a plane this summer, my body had had enough.  People, noise, exhaustion, sensory overload.  As we boarded the plane and sat in the very front row, I broke down.  I started crying uncontrollably.  Everyone could see me.  My daughter tried to calm me, but her touch only made me bristle.  I couldn’t get to my anxiety meds.  I was shaking and sweating and my skin was on fire.  I felt trapped and frightfully exposed as every person boarding that plane walked by.  I wanted off the plane.  Just off.  I ran through scenarios in which they would have to let me out.  Sean finally asked the flight attendant for a tissue and she returned with a stack of rough airline napkins.  Upon reaching our destination we had to get into the car and make a six hour drive home.  I threw up on the curb before getting into the car.  
A trip to buy groceries now brings me to the brink of panic.  It starts in the parking lot.  I am instantly crabby  when searching for a parking space.  I curse at people in my way or holding up the line.  Once inside, I start to sweat.  My chest gets “fluttery” and I feel lightheaded.  I snap at those with me.  I want out.  One day there was a random beeping noise coming from the electronics department.  It persisted throughout my shopping and seemed to get louder.  By the time I reached the check-out lane I was feeling highly agitated.  There was person in front of me and suddenly a lady came up right behind me.  She was very close and I was trapped.  I have never had that feeling before.  I felt like I would not make it out of the store.  I could not use my self-talk to logically explain to my body that this was a physical reaction to a stressful situation.  My mind was racing and it felt as if my heart would come out of my chest.  I kept looking around for a way out of that line.  It did not occur to me to ask her to move or let me out of the lane.  My breathing was very heavy and I left the store breathless and uncertain exactly what had happened.  I talked on the phone with a friend until I was calm enough to drive home.  
I have grown weary of my waitress face.  That fake smile, pretending that everything is fine. Trying to radiate the joy and strength that I do not feel while wanting to vomit, cry, or simply crumple to the ground.  When faced with social situations I go into teacher mode.  I smile, talk, and meet all the required social norms.  When the pressure is too great, I retreat into my phone so I can tune out my surroundings.  Although we had many exciting travel opportunities this year where we could appear relaxed, the reality is the majority of those interactions were painful.  I made sure we took the appropriate smiling pictures so we can remember the happy times from the past year.  Inside I never felt fully relaxed or happy.  It takes constant energy to appear normal.  
My online support groups have made it easy to hide.  I don’t have to be real.  It’s quite easy to “smile,” and “heart,” everything.  While I care deeply about my fellow caregivers, it’s all too easy to send (((hugs))) and pretend that my life is fine.  Fine, fine, fine.  There are no crazy irrationalities, paranoia, guilt, or anxiety.  I can appear normal, while inside I am frantically waving my hand and screaming.  Please hear me.
My doctor and I have discussed the physical manifestations of my depression, anxiety, and stress.  Besides the dreams and panic attacks, I have memory issues, difficulty concentrating, nervous twitches in my eyelid and back, physical pain in my joints, migraine headaches, GERD, and most recently a fun batch of cold sores.  She told me to reduce the amount of stress in my life.  The problem is, I am now having problems even when things around me are calm and secure.  

Since I am a certified caregiver through the VA’s Caregiver Program I qualify for mental health services. Last month I started with a new therapist.  We talked about a variety of coping skills including mindfulness, deep breathing, and visualization.  It was hard not to roll my eyes.  In the past seven years every member of our family has been in therapy at some point.  We have literally been there, done that with every technique under the sun.  However, I want help, so I agreed to keep an open mind and see if I can learn from her.  I want an instruction manual.  I want a road map.  What I get is 50 minutes to get worked up and emotional and then be sent on my merry way for a month to cope on my own.  It does not feel like the help I need.  
As I sat crying through this month’s session we talked about the two issues she feels are causing me major pain.  The past seven years have held overwhelming losses:  the rejection by “friends,” our careers and associated relationships, our relationship (as it was), children (grown up), sense of community, and my father’s death.  I am also not finding fulfillment in my life.
(The following is in no way intended as an insult to Sean and as always he is fully aware of what I am writing.)  

Every aspect of my current life is directly related to Sean.  I left my career to become his caregiver.  Without a job or children at home it has become how I identify myself.  “What do you do?”  “I stay home with my husband as his caregiver.”  To combat that loss of myself I signed up as a volunteer with Family Of a Vet.  Even my volunteer work revolves around being a caregiver.  My social outlets are with members of the military and their families.  We define ourselves by our occupations.  Without one, who am I?
I am tired of being a Wounded Warrior Wife or WWW.  I am tired of being a caregiver.  I am tired of it infiltrating every corner of my life.  
My mental health issues are invisible wounds of war, too.  I’m paying in a different way for his service.  It is taking a toll on my physical, mental, and spiritual health as well as his.  It’s impossible to stick a hand up and say, “I need.”  But I do need, and even though he needs more, I need, too.

"New Normal"

Have you heard the term “new normal” lately?  It’s been bouncing around for a few years and is used to describe the adjustments veterans and families go through when they return home from war.  

Have you ever wondered what it looks like?  My husband has a closed head injury (TBI), PTSD, and is legally blind.  Honestly, if you meet him all you will notice is the dark glasses and cane or guide dog.  He will most likely be pleasant and friendly.  He can carry on a conversation.  He will behave in a socially appropriate manner.  He will leave you wondering if there is really anything wrong with him.  


Some things you will not know about him after meeting him:
  • rarely gets a full night sleep due to nightmares, night sweats, sleep apnea, restless leg syndrome, and pain
  • never has a day without a headache (ranges from 2 or 3 on a “normal” day to 6-9 on bad days) and frequently gets migraines
  • never has a day without “undiagnosable” abdominal pain (doctors scratching heads)
  • has frequent flares of stabbing eye pain
  • does not see well in bright light or dark settings, sees better without his glasses at times
  • avoids crowds, but is able to “get though” when necessary
  • has been through blind rehab, TBI/vision rehab, and PTSD inpatient treatment for 10 weeks each 
  • has poor short-term memory–knows his Army regs and Fire Department protocols, but will stand for hours in the toothpaste aisle because he does not know which brand he buys and the number of choices are overwhelming
  • will likely forget part or all of the conversation he had with you
  • is considered a quiet man because when he gets confused he just stops talking and hopes no one notices
  • is quick to anger, quick to forget
  • never feels completely safe
  • has gone though periods of isolation where he hides in the basement and periods where we must always be in the same room
  • he gets extremely depressed, feels worthless
  • has considered suicide more than one time; homicide as well
Does this look “normal” to you?  Thirteen different medications to keep him stable and doing as well as he is, to enhance his quality of life.

I recently copied 365 pages of medical records (from the inpatient program this spring) and paid $19 to mail them to the Army so they would have a set for the new MEB (medical evaluation board).  Two and a half years after we testified about Seamless Transition and there is still no electronic record sharing in place nationwide between the VA and the DoD. We started the MEB over in May and have finally been assigned a temporary PEBLO (casemanager) six months later.  It’s been five years and we are starting over.  The man is legally blind, cannot fire a weapon, yet is attached to an ammunition unit and can’t get his MEB completed in a timely manner.  

Interestingly, I also had to copy these same records and deliver to the VA in Sioux Falls because they could not access all of his records within their own system.  That’s called progress, folks.

The worst of it?  Learning to deal with the silence when we are in the same room.  The lack of interaction, conversation, the isolation and detachment. The lingering loneliness.  

We have learned to say “new normal” like it’s some shiny banner proclaiming we are making the best of it and moving forward.  One step forward and two steps back.

He came home, but he didn’t come back. No war is ever over.

Operation Opening Doors

We have received the most amazing, incredible, extraordinary, unbelieveable blessing!!  Operation Opening Doors of South Dakota, in partnership with Associated General Contractors South Dakota Building Chapter and JDH Construction, has chosen our home for a remodel!  This remodel will make our home more accessible and safe for Sean and will incorporate features to assist him in his day to day living.  We are THRILLED to be a part of this magnificent project!

Broke gound October 30th

Follow the links to learn more.

Operation Opening Doors Kicks off Eighth Project in South Dakota

Operation Opening Doors–Project Page on Facebook

Contractors Lending a Hand to Veterans

Group working to modify disabled vet’s home in Aberdeen

By Scott Waltman
After a career of serving his community and his country, it’s now Sean Johnson’s turn to be served.
Johnson used to work for Aberdeen Fire and Rescue and spent 23 years in the U.S. Army Reserve’s Aberdeen-based 452nd Ordnance Co. In March 2006, while he was deployed in Iraq, a mortar shell exploded next to him. The blast resulted in a traumatic brain injury that ultimately left Johnson blind. Now, a group called Operation Opening Doors is raising money to renovate Johnson’s home in Aberdeen to make it easier for him to get around.
Operation Opening Doors is a nonprofit arm of the Associated General Contractors South Dakota Building Chapter that focuses on renovating or building new homes for veterans who were disabled while serving in Iraq or Afghanistan. Johnson’s house is the group’s eighth project in the state and its first in Aberdeen.
Plans call for work on Johnson’s house to begin yet this fall. The project will cost an estimated $106,000 with that total including donated time, equipment and materials, said Michelle Lounsbery, executive director of the Associated General Contractors of South Dakota Building Chapter. She said that more than $30,000 has already been raised.
During a kickoff program for the project Tuesday night at the Veterans of Foreign Wars post, Johnson said he and his wife, Melissa, are grateful and humble by the community support. Having a home that’s more accessible will he helpful, he said.
Earlier this year, Johnson was awarded the Purple Heart at a ceremony in Aberdeen.

Lounsbery said a new, larger bathroom with a walk-in shower and other features will be built in an addition to the home. And, she said, the area in the existing home that is now the bathroom and bedroom area will be converted into an expanded, larger bedroom.
Les Cummings of Sioux Falls is the retired state command sergeant major of the South Dakota Army National Guard. He founded Operation Opening Doors about a decade ago. He said the program went broke in trying to do its first couple of home improvement projects. That’s when it partnered with the Associated General Contractors of South Dakota, he said.
More recently, Operation Opening Doors has teamed up with the Associated General Contractors of America, Cummings said. Together, they have built new homes for or made improvements to the homes of 27 Iraq and Afghanistan veterans who have disabilities, he said.
JDH Construction of Aberdeen is the lead contractor on the Johnson project. But subcontractors willing to do anything from work on cupboards to putting in plumbing are still needed, Cummings said.
He said he and Johnson have known each other for years. When they were visiting at a veterans hunt, Cummings said Johnson noted that it would be helpful if he had more room in his home’s bathroom and bedroom. That’s how the project got on Operation Opening Doors’ radar.
“It’s amazing to watch the tears flow down a family’s face when you go to them and say we are willing to support you and thank you for your service,” Cummings said.
Donations to the Operation Opening Doors Aberdeen project to renovate the Johnsons’ home can be dropped off at or mailed to Plains Commerce Bank; 524 S. Dakota St.; Aberdeen, SD 57401.
Copyright © 2012, Aberdeen News

Veterans Day 2012

In November Sean was honored to be invited by the Blinded Veterans Association to participate in a wreath-laying ceremony at Arlington National Cemetery on Veterans Day. Following speeches in the Memorial Amphitheater by Erik Shinseki, Secretary of the Department of Veterans Affairs, and President Obama, Sean, along with National BVA Director Al Avina and National President Sam Huhn, presented a wreath at The Tomb of the Unknowns. For more information on the ceremony, please read Honoring All Veterans.

We traveled to DC with my parents, Jim and Linda Cameron, who had never been to our nation’s capitol. We had the pleasure of exploring familiar monuments and attractions with new eyes. We visited the US Capitol, The National Mall, Smithsonian Air and Space Museum, Ford’s Theater, and Mount Vernon.  Also on his first trip to DC was Sean’s new guide dog, Cole. We walked so much that poor Cole got a small tear on his pad and had to wear his doggie booties the last two days.

Elizabeth Dole Foundation Fellows

The BEST and most EXCITING thing to happen to me in 2012 was being selected as a Dole Caregiver Fellow as part of the Elizabeth Dole Foundation. The mission of the Foundation includes providing assistance, raising awareness, and conducting research.  More information will be available with the official website launch next year.

20 caregivers, male and female, from across the nation gathered in Washington, DC the first week of October with a common goal:  to be a voice for 1000s of others we work with and support every single day.   The whirlwind trip included an overview of the program, video taping our personal stories, meeting with RAND Corporation, and a nightime tour of the city’s beautiful monuments with Senator Elizabeth Dole.

During the 2012 MOAA/NDIA Warrior-Family Symposium Senator Elizabeth Dole introduced a new initiative, Caring for Military Families:  The Elizabeth Dole Foundation.  When her husband, Sen. Bob Dole, was treated at the then-Walter Reed Army Medical Center in Washington, D.C., Elizabeth Dole saw firsthand the importance of supporting caregivers of injured servicemembers.  The initiative will fund research on the topic and bring together organizations that are already working to resolve issues involving injured servicemembers and their caretakers. 

“I believe America has not fulfilled her promise to care for our wonded and their caregivers who have sacrificed so much,” Dole said.  “The Elizabeth Dole Foundation is committed to hope and healing for every single individual who has risked his or her life for our nations. . . Let us take the problems you face into the opportunities you deserve.  Only then will it be morning in America again for all of us.”

There are not words for how incredibly blessed and humbled I am to be a member of this outstanding group of men and women.

National Press Building
Iwo Jima Memorial
World War 2 Memorial
Senator Elizabeth Dole at WWII Memorial
Here we mark the price of freedom
The Wall
Not sure why they let us that close to the White House 😉
Sandra Touchet, Kat Honaker, Me, and Torrey Shannon

Speaking Out, Raising Awareness, Bringing Change

October brought two incredible opportunties my way.  First, I was asked to participate in an interview with CBS Evening News for a piece on Secondary PTSD with my dear friends Brannan Vines, Torrey Shannon, and Kat Honaker.  We met up in Washington DC to sit down with Alison Schwartz Dorfman, Executive Producer of CBS Evening News, and discuss the mental health issues facing caregivers of veterans across the nation, specifically Secondary PTSD.  You can find the two videos here:

Caregivers of US Veterans Bear Scars of War
Treating Family Members Suffering From PTSD

Let me tell you, it is truly a humbling experience to sit for nearly two hours and explain your mental health issues to complete strangers.  The four of us laughed, cried, hugged, and cried again.  We worried for weeks until the segments aired about what the world–our friends, our familes, strangers–would think of us.  Would they see us as weak and cowardly?  Strong?  Hopeful?  Surely we would be judged. . . The piece was met with overwhelming cheers and thanks for speaking out on a painful, sensitive, and embarrasing issue.  At the time I thought perhaps I’d lost my mind, but now I am thankful that I had the courage to stand up and shine a light into the dark corners of our world.

I also had the opportunity to present at the 2012 Association of the United States Army Annual Meeting and Exposition in Washington, D.C.  AUSA’s Family Programs provide Army families assistance to manage the challenges of military life.  The Miltary Family Forum was designed to bring to light the issues surrounding reintegration following deployement and/or injury.  Below you can read an article from which features my panel.

Challenges Remain in Warrior Transition Units

Oct 24, 2012
Army wives stepped forward Tuesday at the Association of the U.S. Army’s annual conference to explain the continued struggle they face in rehabilitating their spouses injured in war and the challenges that remain working with Warrior Transition Units.

The Army created Warrior Transition Units to assist in making the wounded warriors’ journey to their “new normal” as smooth and productive as possible. The Army currently operates 29 WTUs across the country.
“These soldiers all have one mission in common, and that is to heal and prepare for transition, whether it’s back to the force or civilian life,” said Army Brig. Gen. David Bishop. “Each soldier is supported by a triad of care. That includes a primary care manager, a nurse case manager and a squad leader to work with the soldiers and the families of those soldiers to help manage the care and support that they receive.”

The WTUs have come a long way since the early days of the wars in Iraq and Afghanistan, but issues remain, Army wives said Tuesday. Melissa Johnson, wife of Staff Sgt. Sean Johnson, told the attendees about her experiences after her husband was wounded in Balad, Iraq, in 2005.

Upon his return, Johnson was diagnosed with “medically unexplained physical symptoms.” No one really knew about those types of injuries.

Eventually, he was diagnosed with moderate traumatic brain injury and post traumatic stress disorder. He was also declared legally blind, and fought depression and anxiety.

The Johnsons’ problems were compounded by the fact they live in a remote area of South Dakota.
“We have a VA clinic in town, which has just a couple of providers,” Melissa Johnson said. “And we have a VA hospital three hours from us.”

She explained that the nearest military facility — an Air Force base — was six hours away. The medical board process required that the family make the drive multiple times. The family has three teenagers, her husband couldn’t drive, and she was holding down a full-time job.

“We had our local unit and they weren’t very supportive,” she said. “We’re out there; we’re by ourselves. You’re left hanging, partly because they don’t want to hear what’s happening, partly because they don’t understand.”
The burden changed her outlook.

“We’ve gone from being a wife and a partner to being a caregiver,” Melissa Johnson said. “All of our kids have stepped into that caregiving role too.”

Kim Gadson’s husband, Lt. Col. Greg Gadson, was seriously wounded in Iraq by a roadside bomb while serving as the battalion commander for the 2nd Battalion, 32nd Field Artillery Regiment. Greg Gadson’s wounds resulted in the loss of both legs, and he sustained damage to his right arm and elbow.

The family was forced to relocate from Fort Riley, Kan., to Walter Reed Army Medical Center in Washington, D.C., to provide support and assistance as Gadson recovered from his injury. Gadson has since become the first amputee to take over a post command.

“As you can imagine, this was a very tough transition for us,” Kim Gadson told the conference attendees. “Lots of things were happening. Half of them you wouldn’t believe if I told you. The other half I don’t want you to know.”
Both wives eventually sought help from fellow Army families who were going through similar challenges
“We got some help,” Melissa Johnson said. “We had to have a lot of help from our family and our friends and our Army family.”

“The children and I had to learn how to take care of him before we could leave the hospital,” Kim Gadson said. “We learned lots of things so we could take our soldier home.”

But all the while, a nagging question lingered: “What if this is it?” Melissa Johnson mused. “What if he never gets any better than he is today?”

Catherine Mogil of UCLA’s Families Overcoming Under Stress (FOCUS) program said that reaching out is important for families, and that many families are fearful of getting help.

“Families do recover,” Mogil said. “They may not ever go back to the way it was, but they can move forward.”
Success hinges on awareness and communication, she said.

“A lot of spouses don’t know what to look for. They might be given a checklist, but what does it actually look like in day to day life?”

Mogil fears the Army has spent too much time focused on the troops and not enough on those around them.
“We need to be thinking about the entire family,” she said. “If I can get them functioning as a family unit, my servicemember patient is going to do better as well.”

Regardless of the challenges or effort required, Bishop assured the crowd that the Army supported those who have sacrificed so much.

“We embrace the responsibility to provide the resources necessary to support and care for our wounded, ill and injured,” he said.
Reflection (What I wish I had said):
While I feel I covered many issues (going well over my 13 allotted minutes during my presentation), there were several points that I felt were either missed in the article, or that I did not give enough emphasis during my presentation.  
  • We are in year *5* of the med board process, essentially starting over.  When we testifed in 2010 on Seamless Transition we were assured that Sean’s case would be wrapped up,  yet we’re starting over five years later.  I felt there was an effort to “breeze over” that fact and call us an “extreme” case.  I see these “extreme” cases every single day.  
  • We did not have, and still do not have, adequate support from Sean’s unit.  We have had a complete lack of support from the military.   I believe injury and illness gives new definition to an “Army of One.”
  • I know *without a doubt* I NEVER said, “Army family.”  We don’t have an Army family here. The one we should have had dropped Sean the moment he was injured and dropped me when I said I was too overwhelmed dealing with his injuries to volunteer for them full time.
  • Those of us in rural areas face unequal, at times nearly impossible, access to care.  We must travel hours, wait months, jump through hoops at the last minute in order to get physical and mental health care for our veterans.
  • It’s not about our case, it’s about painting a picture of what’s going on nationwide with families and veterans, raising awareness, and pushing for change.
I would like to thank the wonderful Kristy Kauffman of Code of Support for arranging the invitation for me to speak during the AUSA conference!