Category Archives: Uncategorized

A Busy Month

February 2015 was filled with travel.

I had one day between each trip to unpack, wash laundry, and repack before catching the next flight out.

We started the month with an Operation Heal Our Patriots reunion at the Billy Graham Training Center at The Cove in Asheville, NC. We reconnected with our friends from Week 7 along with OHOP staff members (thanks, Jean Claude for the delicious meals!) and attended sessions on marriage, TBI, and PTSD.

Read more about Operation Heal Our Patriots:

Video Reuniting Veterans

Military Couples Encouraged, Challenged During Reunion

IMG_1735

Week 7

The following week I flew to DC to participate in the Hidden Heroes Impact Forum for the Elizabeth Dole Foundation along with several other caregivers. The forum brought together members from public, private, and nonprofit organizations to address gaps in services for caregivers, identify the problems, and draft real solutions.

The interest shown by all participants was validating and reassuring. We shared our personal stories and led the discussions regarding our needs and pitfalls in current programs. We worked within our groups to develop viable strategies to start making solid improvements for the caregiver community.

Learn more about the Impact Forums here:

Time to Give Hidden Military Heroes Their Due

Leading Experts and Advocates to Collaborate on Critical Caregiving Issues Through Elizabeth Dole Foundation Impact Councils

Senator Elizabeth Dole Convenes Leading Experts and Advocates Around Critical Caregiving Issues

Hidden Heroes: America’s Military Caregivers

Elizabeth Dole Foundation

IMG_1672

Dole Fellows L to R Melissa Johnson, Jennifer MackInday, Blair Hughes, Shannon Tuimaleali’fano, Virginia Peacock, Jessica Allen, Senator Elizabeth Dole, Melissa Comeau, Emery Popoloski

IMG_1644

Panel Members L to R Melissa Johnson, Betty Easley, Blair Hughes, Virginia Peacock, and moderator Lynda Davis

Sean and I rounded out the month by attending Challenge Aspen Military Opportunities Couples Retreat in Snowmass, CO. Sean had the opportunity to ski with his friend and guide Jeff, and we met several new couples. Cole and I hung out around the lodge and caught up on some reading, writing, and napping. We always love our time in the Snowmass area!

Read more about Challenge Aspen and CAMO:

http://challengeaspen.org/military/

IMG_0031

Sean, Jeff, and Cole

IMG_1790

Sean and Jeff headed out for the afternoon

 


Searching for…me

Our society largely defines us by our professions. Children are often asked, “What do you want to be when you grow up?” High school students take interest inventories and aptitude tests to help channel their ambitions toward strengths and passions. People want to know which college they have selected, which major course of study. Adults ask one another, “What do you do?” or “Where do you work?” upon introduction.

We are what we do. How, then, do we deal with losing that identity when our lives take a sudden turn?

My aspirations as a child included: nurse, cowgirl, clown, waitress, and teacher. After high school I pursued my BS in Elementary Education and Special Education. I was a young mother with an infant and a toddler at home, attending school during the day and studying into the wee hours of the night once the babies were in bed. I worked hard for that degree and completing it filled me with pride.

I spent several years working in an aide position and supplementing my hours and income by also substitute teaching, tutoring, and waiting tables as I worked my way into a full-time salaried teaching position in the district.

Eventually, I landed in a first grade classroom—which is where I had wanted to be from the start. I loved working with those little ones and watching their light bulbs come on throughout the school year. I enjoyed decorating my classroom, studying the curriculum, and writing lesson plans. I thrived in a creative environment where there was always something new to learn, and where I could share my enthusiasm for learning with 25 little brains ready to soak it all up. Reading, writing, ‘rithmetic…helping them become readers and writers.

Indeed, I have always been a learner. I was the child ready for school to start again before late July. I loved my Big Chief tablets and No. 2 pencils. There is a special kind of excitement when you open a brand new box of crayons. While I participated in the obligatory back-to-school protests throughout August, I was secretly excited about having a new desk, freshly laminated nametags, lockers, schedules…and mandatory library visits!

So, when I resigned my position in 2010 to stay home and care for Sean, it was devastating.

We were sitting the emergency room in the dark waiting for the pain medications to calm Sean’s migraine. I had called and asked my principal to arrange a substitute for the afternoon after discovering Sean in bed, confused and in pain, during my lunch break. ER trips were becoming part of our routine, as was calling at the last minute and requesting a sub to cover my room so I could handle an emergency with Sean. As I sat listening to the ticking of the clock on the wall I was hit with my new reality: I could not continue down both these paths, something had to give.

I felt my life was falling down around me and I was helpless to stop it. We were all struggling to keep moving forward. Sean was calling me multiple times a day while I was teaching, or coming into the school with me when he needed more supervision. I could no longer keep my head above water by pretending I could manage it all.

Leaving was devastating. I tried to put on my happy teacher face and pretend it was all for the best (which it was, although I didn’t feel that way). Stepping down from something I had worked so hard to achieve and thoroughly enjoyed doing was a stab to my heart.

Sean was a valuable volunteer in the kindergarten classrooms and wanted to continue when he was feeling well enough. I supported that decision, but it felt like he was getting my job, my friends and coworkers, my space. When I would express my feelings about giving up my job, he would feel guilty and I would end up comforting him because I resigned instead of having my own loss validated and soothed.

This fall, back to school has left me grieving. I even cried in the school supply aisle the other day, right in front of the boxes of 24 crayons. I feel a deep and pervasive loss, a longing I cannot stop. I know that sounds silly. People have suggested all types of fill-ins from volunteering, to subbing, to tutoring…but those don’t “feel” right for me right now. I walked into my old building the other morning and heard the familiar morning greetings and saw the friendly faces. My heart fell to my feet. I can’t fill this void with half-hearted substitutes, and I’m not even sure any more that this is what I’m meant to do.

I don’t regret leaving my job. It was a necessary step to aid in Sean’s recovery and I am proud to be a vital part of that process.

I realize now that this loss I’m struggling with is Sean’s loss, too. He gave up his civilian and military careers after his injury. He wrestles with his identity and what his future might hold.

And I do realize that my life is more than my profession or my (self-imposed) definition. My identity is multifaceted and perhaps now I will be open to learning more about who I am and my true purpose in this life as I face the unknown path ahead.

Sidebar:  I wrote about back to school success for Family Of a Vet:  7 Tips for Back to School Success

Family Of a Vet has an incredible *free* packet for teachers and parents about PTSD and TBI:  Parent and Teacher Packet


Instant Replay

I was asked recently if it was hard to keep up with a blog…my answer was no, not if you only write one post a year 😦  Oh my goodness I’ve been slacking. I’m going to post highlights and a couple newsy pieces from the past year and call it good.

1. Cancun, Mexico

DSC_0381

2. Phase 1 of the RAND study on Military Caregivers was released http://elizabethdolefoundation.org/wp-content/uploads/2013/03/RAND-RR-244-Embargoed-Full-Report.pdf

3. Bike Camp in Colorado

21264_537892589594770_910190683_n

4. In May 2013, Sean traveled to England with other members of the Blinded Veterans Association as part of Project Gemini for an educational exchange to share knowledge, insights, and friendship with their British comrades. Project Gemini is a joint effort of Blind Veterans UK of London, England, and the BVA. Melissa tagged along and spent the week touring London and Edinburgh, Scotland with her good friend Lou.

http://www.bva.org/news/?p=506

IMG_5562IMG_5382  IMG_5356

IMG_5424 

5. In June Sean became the Commander of VFW Post 17.

6. Horses for Heroes Challenge Aspen C.A.M.O.

DSC_0450

7. Operation Opening Doors home remodel was completed in August.  The main floor is completely handicap-accessible with an enlarged bathroom (including walk-in shower) and new kitchen.

OOD Ceremony Ribbon 5DSC_1128

Governor and Mrs. Daugaard attended our open house

Governor and Mrs. Daugaard attended our open house

8. Melissa attended The Daily Beast’s Hero Summit in DC to watch her dear friend and mentor (and boss) speak about Families on the Frontlines.  Watch it here: http://www.youtube.com/watch?v=SMvmYGCE2s0

Brannan Vines, Senator Elizabeth Dole, and Melissa

Brannan Vines, Senator Elizabeth Dole, and Melissa

9. Melissa had the opportunity to speak before several groups this year including the South Dakota American Legion Auxiliary, SD RehabACTion State Conference, the Sioux Falls VA Family Caregivers Month Event, and a Veterans Day presentation at the South Dakota School for the Blind and Visually Impaired.

IMG_7742

10. Sean went on his annual David Feherty IED pheasant hunt with Sons of Southfork.

IMG_0719-2

11. Melissa attended the 2013 National Summit at the Rosalynn Carter Institute for Caregiving with friends and coworkers Steffanie and Brannan.

IMG_7586

12. Sean’s tandem bike *finally* arrived!!  Now if we only had decent weather outside so he could ride.

Medical retirement update:  In January 2013 we were informed that Sean’s records had not yet been received at Ft. McCoy (shipped from Ft. Riley in June 2012).  The records were located in February 2013 and sent to Ft. Carson.  The army required Sean to undergo multiple physical and mental health examinations (because all those he had done previously had expired).  The final evaluation was completed in May 2013.  Records were sent to the Physical Evaluation Board (PEB) in June.  In December 2013 we received what should be the final stack of paperwork to review and sign.  Fingers crossed he should be medically retired by the end of January!  (Yes, I’m counting my chickens…)


"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.

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!