Friday, December 14, 2012

"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.  

Before

After
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 Military.com 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!

Monday, November 26, 2012

Cole Comes Home


Meet our newest addition to the family! In September Sean received a guide dog from Guide Dogs for the Blind in Portland, OR.  He spent two weeks in Oregon learning to care for and work with his new dog, Cole.  Cole is a young black lab (1 1/2 years old) who is all business on his leash and playful puppy when off duty.  Since returning home, Cole has started working at the elementary school when Sean volunteers. He goes to the store, the VFW, and of course on daily walks with his new pal Chili.  The dogs get along beautifully together. Cole has even traveled to Washington DC to see the president and tour our nation's capitol. 




Want to see more?  Add Cole as a friend on Facebook


Saturday, November 24, 2012

67th Annual BVA Convention--Galveston Island

BVA Convention Top Ten:

1.  Gulf of Mexico
2.  Poolside Bar
3.  The Strand
4.  The Elissa
5.  The Pleasure Pier
6.  The Lone Star Flight Museum
7.  NASA
8.  The Space Shuttle Training Simulator
9.  The Awards Banquet--I was elected as the first BVA Auxiliary Board 
     Member (Secretary) from the OIF/OEF generation. 
10.  Reconnecting with OPS friends!

The Gulf of Mexico
Oceanside
Lou and Melissa at The Elissa
Warm summer night by the ocean at Galveston Pleasure Pier
Billy Baxter showing off at the Lone Star Flight Museum
Mission Control, Johnson Space Center
Old Mission Control Room, Johnson Space Center
NASA
Robonauts
Operation Peer Support Group at NASA
Sean with astronaut Mike Fossum
The family ready for the banquet
Cate and Melissa at the banquet
Melissa, Christina, and Lou
Birthday girl Cate and husband Tim
Lou and Ben

Horses for Heroes

July took us back to Colorado for the Challenge Aspen Horses for Heroes program in conjunction with Sopris Therapy Services.  We had an AMAZING trip with friends, old and new.  I spent the week with my horse, Jilly, and Sean spent his week getting to know Navajo.  The program incorporated music and art therapy into the daily sessions with singer/songwriter Mack Bailey and artist Sheri Gaynor.  There was an afternoon of fishing and swapping TBI stories up on the mountain.  Our week concluded with a cookout at the Carbondale Rodeo.  

Sean and I also attended the Vince Gill and Amy Grant Golf Classic, an annual fundraiser for Challenge Aspen.  We had the opportunity to visit the horses at Sopris before the evening's charity dinner and concert. The music was beautiful and we were able to speak with Vince and Amy after the show. We are forever grateful for the opportunities provided to us by Challenge Aspen.



Helen Deutsch Writer's Workshop--New York City

In June of 2012 I was invited on a Caregiver's Writing Retreat sponsored by Wounded Warrior Project.  Forty caregivers of veterans from across the nation were flown into New York City for a weekend of lights, sounds, laughter, and writing.  

We spent two full days working in our writing groups with professional mentors (you can read about my amazing mentors here: http://gothamist.com/2005/04/11/jessica_blank_and_erik_jensen_playwrights_the_exonerated_authors_living_justice.php) and honing our writing skills.  In the evenings we attended a play and had time to explore Times Square.  Several of us had the opportunity to visit Ground Zero and see the beautiful memorial fountains.

We returned in September for part two at the Writer's Guild.  Working once again with our mentors, we had the chance to delve deeper into our writing and into ourselves to really find our "voice" and practice our craft.  The highlight of the trip was an evening bus tour around NYC and the surrounding boroughs which was wrapped up at an authentic NY pizza joint.  
My group has formed an online writing group to encourage one another to keep plugging away at our writing and discover where it takes us!



Thursday, July 5, 2012

Opening the Box

Off topic from what I usually write here, but before I can sleep I need to clear this from my head.

From the time our kids were little, our 4th of July tradition had been to spend the day at my dad's farm.  We would spend a week planning out the meal from burgers and brats to my step mother's AMAZING potato salad to the red, white, and blue jello she made for the kids every year.  By noon we would be at the house setting up and preparing for the day's festivities.  

The kids would help their dad unload the trunk full of fireworks with wide-eyed anticipation. 
"How long til it's dark?"  
"Can we just do one now?"  
"Pleeeeease?"  

Before long they would be popping Snaps on the sidewalk and squealing with delight.  My brother and sister would come out with a box of matches and help the little kids light the black tabs that would grow into "snakes" and set off colored smoke bombs in the driveway.  




By the time dinner was ready, Sean and the other "big boys" would have the daytime attractions ready to fire:  bottle rockets and parachutes.  Kids would scramble as the paper parachutes drifted through the sky.  


Despite the heat, my dad would start a campfire and set up a semi circle of chairs facing the large gravel driveway.  He was always mindful of wind direction and to make sure no one got too close to the livestock or the hay barn.  We would fill our plates with food just before dusk and settle in around the campfire.  Before supper was over, the kids would be begging for marshmallows to roast.  

As the sun set in the west, the boys would start their fireworks display. Aerial repeaters, roman candles, helicopters, ground spinners, strobes, and fountain tubes filled the air with gorgeous colors of flashing light and the smell of sulphur. When the show had finished, the kids would get their turn with multicolored sparklers to see if they could write their names in the air before it burned out.

After our supplies were spent, we would pull our chairs into the driveway for a perfect view of the city fireworks display. Dad always joked that we had to move further out into the driveway each year for a good view because, "It seems like those trees get taller every year."


When the last sparkle left the sky, it was time to gather around the bon fire and roast marshmallows.  If you were roasting for Grandma, you would stick it deep into the flames until it caught fire.  For the little kids, just a little brown around the edges.  Add graham crackers and Hershey bar for the most finger-licking melty treat you can imagine!  



The logs would slowly begin to burn out and turn to ash.  Any free lap was prime real estate for a sleepy child. A few stray fireworks would pop in the distance from time to time. 

I have missed these times greatly in the past few years.  The farm no longer stands and my dad is gone.  My husband can't enjoy the fireworks the way he once did and the children are grown with plans of their own.  Today was HARD.  

A wise and wonderful friend told me tonight that the reason today was so painful for me was because these memories are like opening up a box of my father's belongings--things I'm not necessarily ready to deal with that have raw pain attached to them.  I opened a box and looked inside.  It's all there, inside me.  So until next year, I'm going to replace the lid and store that box away, knowing there is a piece of me stored inside as well. It's not gone. . . but will be there when I'm ready to peek in again.