Monthly Archives: May 2011


Sean has been elected to leadership roles in both the Veterans of Foreign Wars (VFW) and Disabled American Veterans (DAV).  Sean serves as Senior Vice Commander with the VFW.  He assists the Commander to promote the organization, and has responsibility for membership by organizing and following through on renewals, reinstatements, and new member recruitment.  Committees help with this large task.

In the DAV Sean was elected as the Junior Vice Commander.  His roles are to run the meeting in the absence of the Commader and the Senior Vice, along with working on various fundraising activities with committee members. 

Sean has also been active with the American Legion.  He enjoys attending meetings and finding ways to help each organization run more effectively.  He hopes to see more new veterans join and support their local veterans service organizations.

It is exciting for both of us to see Sean move forward and become a part of his community again.

I’ll Stand by You

Moving video from Wounded Warrior Project

Wounded Warrior Project–“I’ll Stand by You”

Bits and Bobs

As we traveled home from D.C., I could feel my mood shifting.  I was nervous, anxious, and growing more depressed.  I feared coming home into the same routine and daily struggles we had left behind and longed for the relaxed feeling of being somewhere, anywhere else.  The feeling was eating at me, and my frustration was compounded by not wanting to feel that way.

I realize that despite the fact that we have been dealing with everything for years now, it is still fresh and raw and it hurts.  I am tired of being wrapped up in the day to day emotions it brings.  We need to have some happiness and joy in our lives.  I know that we have the power within us to do that, but it feels like a steep climb up out of a deep and rocky chasm. 

So, here I am clearing it all off my chest, and then I’m going to try to stay one step ahead of it.

Yes, I resigned from my job in December. I do not live a life of leisure. I spend my days doing laundry and chores around the house and taking care of Sean. I would give up my “free time” to go back to life as it used to be where both my husband and I were employed and enjoyed our careers and our lives. This was a life-change of necessity, not one of laziness.

I have had it with paperwork. Filling out, scanning, emailing, sending records, requesting records, new forms. . . . “I need you to help me fill this out.”

I would like to put an end to chasing appointments, making appointments, consulting about appointments, and waiting for appointments to be scheduled.  Sean needs regular treatment and checks, but that should be IT unless something in his health changes.  Leave.  Us.  Alone.
What I want for my husband is to get the regular care he needs.  He needs to see his psychologist weekly.  He needs to see the psychiatrist.  He needs regular checks with his primary care manager.  Let us use these encounters to heal what we can and train what we can’t. 

In order for Sean to have any degree of independence requires an immense amount of training.  He came home four years ago and I have STILL not been able to train him to keep his wallet and phone in a consistent spot.  I use an online calendar that will text his phone 30 minutes prior to an appointment.  He cannot find his phone, doesn’t check his phone, or doesn’t know why his phone is making that noise. 

We have tried a variety of white boards and calendars where he records his schedule and “to do” lists.  He can’t remember to check it.  Or, my favorite, when I remind him to check it he says he already has, although he hasn’t, and he misses something which results in his being upset with me for not reminding him.  He will not write the schedule out himself.

He wants my help, needs my reminders, but gets angry with me for helping him.  Conversely, if I do not remind him or do not help him, he is angry because, “You know I need help.”  What’s a wife to do?

He wants me to wake him in the morning instead of setting an alarm for himself.  The VA purchased a watch for him with alarms for his medications and schedules.  He will let it beep to infinity before checking it, or will turn it off and ignore it and miss his meds.  Frequently, he misses medications and then wanders about wondering why he has so much pain, is dizzy, doesn’t feel right, etc.

If I remind him to take meds, he snaps at me that he can do it by himself.  Yesterday, he took no meds until bedtime.  “Why don’t I listen to you?”  he asked.  The million dollar question.

I remind him that in order to get his cycling in before it’s too late at night he needs to go ride. . . but he is more interested in whatever he is watching on TV.  I ask him to clean his CPAP machine (it’s been days) and he “will get to it.” 

Many nights when Sean goes to bed, it’s like having my kids little again.  “Should I watch a movie?”  “Can I listen to my headphones?”  He will repeatedly get out of bed to get a drink, flip the channels, or ask what he should be doing.  Frequently after he has gone to bed I discover he did not take his medications.  If I go to bed before him, he comes in, turns on the light, messes with his headphones, fiddles with his CPAP (ok, maybe not fiddles, adjusts. . . for the life of me I could not sleep with that face mask on and air blowing in my face).  At some point, he will become uncomfortable and take his mask off and the snoring commences for the remainder of the night. 

We tried sleeping in separate rooms for a time, and no lie, I slept so much better!  But on the flip side, I don’t like saying we can’t even sleep in the same room. Sometimes I feel we are so far apart the way it is with our role switch, that moving him out doesn’t seem like a logical solution.

I am at a point where I feel we need friends around us as it is the only time we can experience normal social interaction and our roles revert somewhat to that of husband and wife.

Sean’s psychologist has been gone for almost two months on maternity leave.  He has regressed back to where he was before they started therapy.  He needs that weekly contact.  They briefly tried V-Tel before she left to save us the six hour round trip, but Sean said he felt disconnected.  When she returns, we will travel to see her.  I am whole-heartedly willing to make that weekly trek for him.

Since our CBOC still does not have a psychiatrist on staff in Aberdeen, Sean is seeing Dr. LR in the interim.  They have a good working relationship and we plan to travel to see him monthly as well.  Those relationships are hard to establish for Sean, so if  he has found a match, I’m all for it.  He has even started to share that sometimes he sees people and hears voices that aren’t there.  Freaky, yes, but I am thankful he is getting it out in the open so he can deal with it.

One last thought, and if you’re family and easily offended, feel free to skip.  I thank God everyday that Sean is here and he is alive and our family is together to share our lives with him in it.  However, Sean is not the person he used to be.  There are snippets and glimpses, but not the same.  Sean was never needy, vindictive, or mean.  He never swore at us or used derogatory comments to hurt us.  He never ever put himself above the rest of us, which he does now with frequency, although he doesn’t mean to and doesn’t realize it.  So although he looks like Sean and walks like Sean, many, many times he is not Sean.  He is not the supportive man who used to help me up when I had too much on my plate.  He wants to be, this I know with certainty, but he is not.

So in a (rather large and crowded) nutshell, these are our day-to-day struggles.  I’ll get off my pity-potty now and get on with my day.

Weekly schedule

To get him organized and out the door


Gary Sinsie Projects

Lt. Dan Band Movie will be released online July 4th.  Check it out!

Lt. Dan Band

PSA DStress

Suicide PSA

Operation International Children

Videos by Canadian Director Claire Corriveau

Worth a watch if you know anyone in the military.

Children of Soldiers

Nomads Land

I’m Leavin’ on a Jet Plane

All my bags are packed, I’m ready to go!

The first week of May took Sean and I back to D.C. where we were honored to speak during a forum at the Canadian Embassy entitled, “Healing the Families of Our Fallen, Wounded and Injured.” 

We arrived on Monday afternoon and our dear friend Christina picked us up at the airport.  We walked from Christina’s house down to the Waterfront along the Potomac River.  The weather was perfect:  low  80s, sunny, and a light breeze.  A welcome retreat from SD where we had snow falling on the first of May!  We went to dinner at Old Glory in Georgetown where we ate some of the best barbeque we have ever eaten!  We wandered around the shops in Georgetown and had dessert–chocolate layer cake to DIE for– at Leopold’s before heading home for the night. 

Sean and Christina at the Waterfront

We spent a quiet Tuesday morning at Christina’s before heading into DC for a meeting with one of Senator Boozman’s (AR) staff members regarding the continued need to fund the Vision Center of Excellence.  We also visted with staff from Senator Tim Johnson’s office regarding the ongoing ups and downs, and downs. . . and downs, of Sean’s case.

That evening we attended a screening of the movie Lt. Dan Band For the Common Good at the Embassy.  This movie will be available to view online July 4th and I strongly encourage each one of you to watch this celebration of American heroes!

Theater inside the Canadian Embassy

Jeff and Sean in the Echo Chamber outside the Embassy
Canadian Embassy

On Wednesday we attended the forum at the Embassy which focused on how Canada and the US are finding ways to meet the needs of military families of the wounded and fallen.  The purpose of this event was to present information regarding stress, PTSD, support and healing, but more importantly to share ideas  and gather information about what these families need.

The day was divided into three sections:  Impact of Service Life on the Miltary Family, Survival Instincts:  It Takes a Village, and Testimonials–Grief, Growth, and Grace.  The sessions were built around providing an understanding of the pressures affecting military families–including adolescents and children, and how military families themselves have risen to the challenge of providing assistance to others. 

Throughout the day video clips were shown from Children of Soliders, a documentary by director Claire Corriveau.  I had the opportunity to visit with Ms. Corriveau, a military wife herself, and share how touched I was by her presentations.  Please watch the video for a better understanding of what goes on at home both during deployment and after injury.  Ms. Corriveau also has a video Nomads Land about military spouses which is just as worthwhile.

Support needs to be ongoing from activation through deployment and until the family has settled following reunion.  In our case, when Sean came home, there was no help, no support, no one to even answer my questions while he was sick and still so far from home.  Things are getting better.  New programs have been implemented. But that’s not good enough. 

In our rural state we are on our own.  Nearest VA support group for Sean?  206 miles.  The nearest aftercare program for PTSD with support for family members?  232 miles.  The nearest Wounded Warrior Project regional outlet?  682 miles.  Nearest Army Wounded Warrior Advocate?  187 miles.

I asked Dr. Barb Cohoon, Deputy Director of Government Relations for the National Military Family Association (NMFA) what we can do in our rural area. . . sadly, she couldn’t even recommend any programs from her own organization.  She referred me to the VA or to seek help through TriCare.

The marriage counseling provided to us by the VA involved five sessions with a counselor who spent each hour agreeing with Sean that had I done a better job while he was deployed, our family wouldn’t be so messed up.  I refused to go back.  Now I’m hoping this is not the provider the VA directs me to under the mental health benefit of the Caregiver Program.

CDR Cathy Slaunwhite, our hostess for the day, made a striking reference to the attention given to our million dollar athletes when they are injured.  The entire country rallies around this hero and fans wonder how life will go on if he is not able to play in the next game.  What happens to a soldier injured in war?  Where are our signs proclaiming “Go Military” and “We’re Here for YOU” for heroes much more deserving of our support and respect?  Our service members do not have fortunes to support their families when they cannot return to work. Not every one of them is lucky enough to be seen at a major military medical facility and cannot afford high-priced specialists on their own..

I participated on the last panel and spoke with Mr. Jim Davis, whose son, Cpl. Paul Davis, died in March 2006, when the light armoured vehicle he was travelling in collided with a taxi and then rolled over. Seven others were injured in the accident Kandahar. Paul Davis was married and had two children, aged three and five. Paul’s father says Paul died for a good cause – to push out the Taliban and allow the deserving people of Afghanistan a better life. 

Following Jim’s presentation, and with not a dry eye in the house, I expressed my gratitude for his son and his family. I felt incredibly humbled by his story and no where near worthy of sharing a stage with him. 

I began with a purpose:  to raise awareness that results in change.  I spoke about our lives since Sean was activated in 2005, through deployement, injury in 2006, eventual diagnosis with TBI in 2008, vision loss in 2008, inpatient treatement in 2009 for blind rehab and for PTSD, and the continuing struggle to get him retired from the mililtary.

I explained how people on the outside, even friends and family members, do not understand what goes on in our lives.  The kids say he looks like dad, but he isn’t dad.  The changes aren’t always visible on the outside.  People sometimes say they admire our strength, but on the inside I don’t feel strong.  I feel weak and full of failure.  I talked about how the kids and I have learned to gauge Sean’s moods so we don’t set off his triggers.  We have the responsibility to educate those around us, even family members don’t truly understand because they don’t live it day to day.  I talked about all we have lost, not to be negative, but just to illustrate that it is so much more than an “adjustment” when a soldier comes home disabled. 

  • 3 careers (Fire Department, Army, my teaching career)
  • health
  • friends
  • activites
  • time w/family due to deployment, appointments, and inpatient programs
  • relationships
  • marriage (the shift from partners to caregiver/patient is far from the marriage we used to have)
  • independence
  • self-confidence

I shared what has been reflected in the media lately, that it affects all members of the family.  All three of our children have suffered from and used medication for anxiety and depression.  We have dealt with substance abuse, anger, outbursts, and suicidal thoughts. 

I closed by asking the audience to spread the word and do whatever they can to promote support for families of the military.

Group at the Canadian Embassy
Seated front L-R Commander Cathy Slaunwhite, Jim Davis, Melissa, Sean
Standing far right is Colonel Doug Martin

We visited with several attendees and made wonderful contacts.  I hope to work with Col Doug Martin in the near future as he continues to promote support for service members and their families. 

There goes Prince Charles

Wednesday evening we walked down to Paolos for some delicious Italian food and luckily made it into the restaurant just before the torrential downfall hit.  Best spaghetti and meatballs I a have ever encountered followed by a slice of vanilla lavendar cheesecake.  Divine!

We took a little walking tour of Georgetown, and just in time to see Prince Charles and his motorcade drive by on his way to dinner at Senator Kerry’s house.  Little Secret Service man would only let us within a half block, such was my brush with royalty. 

On Thursday morning Sean and I toured Arlington National Cemetery.  It was a gorgeous day and we loved walking the paths.  Unfortunately, every school within 200 miles was there with their students.  Sean was easily frustrated when they would not pay attention to his cane or things around them.  We did our best to stay aside and let the groups pass. 

We walked down to the newer sections where veterans from the Persian Gulf, OIF and OEF are being buried.  It was touching and heartbreaking.  After letting Sean explore for a while, as I knew it would be healing for him, I had to leave.  The losses are overwhelming.

Sean at Arlington National Cemetery
Tomb of the Unknowns
Large crowds made it difficult to see!

From Arlington we took the Metro to Union Station where we ate lunch at Johnny Rockets (always a favorite) before heading out to Walter Reed to meet with Rosa Hamilton, our FRC. 

Following our meeting with Rosa, we went to the Cannon Building on Capitol Hill to meet with the House Committee on Veterans Affairs and Senate Committee on Veterans Affairs staff members.  When asked what has changed since his testimony last Jaunary Sean replied, “Not one thing.”  Wow.  Seems impossible that it’s been almost a year and a half and we are still at starting block one.  No closer to being out of the military. 

The White House
I am always amazed by the crowds of people. . . so different than the post cards!

Thursday evening we had supper with Jeff Tracey at Chadwicks in Old Town Alexandria. It was fantastic to catch up with a good friend, and it was $5 margarita night!

Sean and Melissa at the Potomac Waterfront in Old Town Alexandria

Friday morning we boarded a plane toward home.  Our trip had been amazing!!  Yet, I was nervous about returing home.  We had already been fighting when it was just the two of us, and I didn’t want the safety net of being busy with friends to end.  More of that to come.

Below are links to the Canadian sites if you are interested in learing more about the Canadian-American partnership.

Canadian Ally

“CanadianAlly is an electronic newsletter maintained by the Canadian Embassy in Washington, DC, designed specifically for an American audience. It presents a comprehensive look at defence and security issues from a variety of key sources. The intent is to give American citizens a better sense of the scope of Canada’s role in North American and Global Security and the War on Terror.”

Government of Canada
Connect 2 Canada
Canada’s network in the United States

The Search for NICoE

It was suggested by Tom Z. that given all the discrepancies in Sean’s case between DoD and VA that Sean apply to the National Intrepid Center of Excellence.  It could mean two weeks at Bethesda Naval Medical Center in Washington, DC.  Patients and family members stay at the Fisher House with other TBI families and veterans as group.  They provide family counseling, group meetings, and full diagnostic testing with major tests by neuro-psychology, neurology, neuro-audiology, neuro-ophthalmology, internal medicine, neuro-radiology–the full world all inside one building!

The Ombudsman at Ft. Riley is working with Sean’s case manager at the SFVAMC to facilitate Sean’s application to the NICoE. The facility is open to active duty soldiers by referral from a DoD doctor, however, the Ombudsman obtained permission to have Sean’s primary care manager (PCM), Dr. S, write the request.
We heard from a friend who knows the director of the NICoE that only active duty soldiers are being accepted.  Doesn’t make much sense to me to exclude veterans like Sean who are in a reserve status and still need the help.  We are praying this will be the next step in getting a diagnosis that can be used across the board and we will finally be able to stop chasing appointments and instead focus on what he needs for treatment and maintenance. 
Normal MRIs cannot compare to the equipment available at the NICoE.

Tandem Limbo

Sean has a stationary bike set up at the house and is working with an Olympic coach online. This is a really exciting adventure for him! He is feeling better about himself and the training is really motivating.

However, he is still waiting on his tandem cycle from the VA prosthetics.  All the paperwork was completed and submitted.  A couple of weeks ago Dr. H called me to say the VA gave him a new form and the request for Sean’s bike cannot go forward until the new form is completed, and it requires us to go to Sioux Falls for an exam with Dr. H. 

Sean is incredibly frustrated!  All his hard work and training, and he is stuck in the basement.  He has identified people who would cycle with him, if he had a bike.  He has to miss camps and races that he could attend, if he had a bike.

Sad that someone so motivated initially to achieve a goal is held up by forms and processes that don’t work smoothly.

Surrender Dorothy

Recap:  Sean and I were at Ft. Riley at the end of January for an ophthalmology evaluation by Dr. B and an appointment with Dr. M at the Behavioral Health Clinic. When the ophthalmology appointment was finished, we reported to the Behavioral Health Clinic where we waited for an hour. During this time, we saw Dr. B come into the hallway to consult with Dr. M, Chief Consultation Psychiatry before sending an assistant out to tell us that Sean would not be able to be seen that day, despite his being scheduled for an appointment. Instead, he would be referred to Dr. G at Ft. Lewis, WA for a neuro ophthalmology evaluation and following that appointment he would need to return to Ft. Riley for his Behavioral Health appointment.

In her report Dr. G says we were accepting of her diagnosis of conversion disorder, but that was not the case. We were pointing out the deterioration of vision prior to his most significant episode, as well as what we have read and heard about TBI and vision loss.  Dr. G did not have any of the VA records available.  We told her about all the other doctors we have seen.  We explained to her that when Dr. F at the VA suggested conversion disorder we did not accept it then and subsequently asked Dr. H(polytrauma) and Dr. Z (neurology) if they felt it was conversion disorder, and they both said it was not.  Also, Dr. H who did Sean’s neuro psychological eval in April 2010 at the Black Hills VA states in her report that she does not believe Sean has a conversion disorder. Sean’s primary care provider, Dr. S, at the Aberdeen CBOC does not support the diagnosis of conversion disorder either.

Dr. G was describing conversion disorder to us no less than five minutes into the appointment with just the notes from Dr. B as her reference and before she had done any examination of Sean. 

We have a strong suspicion the Army is going to try to write Sean’s vision loss off as conversion disorder/mental health. Sean’s vision was impacted after his injury in 2006. I have highlighted in his VA records where he complained of double vision, blurred vision, loss of night vision, and photophobia for a year prior to his most significant vision loss at the end of 2008.

In his report Dr. B wrote that MRI, ERG, and VEP testing results were not available. However, those results are indeed in Sean’s MEB file. We personally sent them to our PEBLO after receiving them.

He also wrote, “Review of available medical records failed to find any complaints of vision loss until December of 2008.” Not true.  Sean has documented vision issues for well over a year preceding December 2008. Prior to December 2007 the VA was focusing on Sean’s abdominal pain and associating his dizziness, balance, and persistent nausea to residual trauma from his salmonella and c diff infections. It was not until December 2007 when Sean was asked a series of questions regarding blasts and falls that the VA routed him to polytrauma and he was finally diagnosed with TBI. Once he was being treated by a polytrauma doctor he was able to express his vision concerns.

In his report Dr. B states VA notes were “unavailable for review” however, a complete copy of Sean’s VA notes are in his MEB file. Perhaps the military doctors involved with the MEB/PEB process should take time to orient themselves with Sean’s case file.

When Sean was ordered to return to Ft. Riley at the end of April for a psychological evaluation, we requested assistance from Senator Johnson’s office.  The response from Ft. Riley came on the Friday before we were to travel and said that the psychological evaluation was vital to Sean’s MEB case and they would not be able to proceed without it.

Of course I requested to fly. . . the best they could do for Sean’s 3-hour appointment was to fly us in on Sunday, fly Sean to Dallas Tuesday where he would spend the night.  Fly Sean to Minneapolis on Wednesday, and fly me to Minneapolis on Wednesday to meet up with him and fly home together.  Now, how does that help me to escort him?  Good grief!

So on Easter Sunday Sean, Erin, and I hit the road for KS.  We have found we can make that drive in exactly 9 1/2 hours if we only stop to refuel and eat in the car. 

We arrived for Sean’s appointment and were greeted by Dr. RH, a new psychiatrist whom we had not met previously.  (Due to Sean’s anger toward Dr. M it was agreed he should see someone else.)  Dr. RH said to Sean, “What can I do for you today?”
Sean replied, “I’m here for my psych eval.”
Dr. RH asked, “Oh, so you scheduled this appointment?”
“No, I was required to come here.”  Sean said.
Dr. RH asked, “Who required it?”
“How should I know?  I just got a letter for an appointment and was told to come.”  Sean answered
“Oh.  Hold on a minute.”  Dr. RH left the room.

30 minutes later (yes, I was timing him) Dr. RH returned.  “I guess I’m just supposed to look your case over and get a new set of eyes on things.”

Sean explained he was unhappy with Dr. G’s and Dr. B’s reports.  He told Dr. RH about the problem he has being labeled with a disorder when the doctors who work with him regularly do not agree.  He explained how he would not be accepting a diagnosis of that type as the Army’s way of sweeping him under the rug. 

Dr. RH took some notes and asked some basic questions about date of enlistment and deployments, type of service, and medications.  He then asked for a phone number where we could be reached for further questions. He explained that due to his backlog it might be a while before he could write his report.  It’s now been one month since his appointment, and no notes have been submitted by Dr. RH. 

His appointment with Sean lasted a whopping 15 minutes. 

We briefly met with Sean’s new PEBLO who told us that after reviewing Sean’s case (a good 18 inches of paperwork) he feels Sean is at the BEGINNING of the MEB process.  My Lord!!  More than a year after his first appointments!  Funny thing is, for the testing we had done independently last year, Ft. Riley gave us a deadline of 30 days so we wouldn’t hold up the process. . .

We picked Erin up and drove 9 1/2 hours home.

This gives new meaning to the slogan, “An Army of One.”  You really are left on your own. .  . if they can’t use you, then they want to make sure you cost them as little as possible.  “Be All You Can Be” until you’re injured, then you’re on your own.

Senators Blast VA, DOD for Bad Coordination

Remember “seamless transition?”  And so it continues. . .

Senators blast VA, DOD for bad coordination