Author Archives: mlynnjohnson1971

Warrior Trials

In June Sean spent two weeks in West Point, NY, along with over 100 other wounded soldiers and veterans, training for and competing in the 2014 Army Warrior trials.  Participants competed in cycling, archery, swimming, sitting volleyball, wheelchair basketball, and track and field events.  Sean earned gold medals in tandem cycling, shot put and discus and silver medals in the 100-meter dash and the 200-meter dash.  He has been selected to compete on Team Army in the Warrior Games this fall against members of the other armed services.  The Warrior Games are a partnership between the Department of Defense and the U.S. Olympic Committee Paralympic Military Program.

“Sports and competition mean a lot. It gives me some direction and some purpose– a goal to achieve– and it keeps me in shape. It keeps me out of mischief,” said SSG Johnson. “It is critical to my recovery and health. It improves my outlook on life and future and gives me a way to give back to the Army and military.”

The 2014 Warrior Games are scheduled for September 28 – October 4 at the U.S. Olympic Training Center and U.S. Air Force Academy in Colorado Springs.
Photo Credit:  Teia Atkins

Photo Credit: Teia Atkins

Army Trials Cycling Competition

Photo Credit: Teia Atkins

Day 2 Track and Field

Photo Credit: Todd Weiler

Day 2 Track and Field (1)

Photo Credit: Todd Weiler

Day 2 Track and Field (2)

Photo Credit: Todd Weiler

Army Trials Track Competition (3)

Photo Credit: Chris Roxas

Sean was featured in several articles during the trials:

Warrior Games possible in Aberdeen veteran’s future

Local veteran to compete in Warrior Games this fall

‘You may be Wounded, Ill or Injured but You’re not Defeated,’ tandem cyclist says at US Army Warrior Trials

Vision impairment won’t stop wounded veteran at Warrior Games Trials

For more information on the Warrior Games, please visit the US Army Warrior Transition Command’s website: http://www.wtc.army.mil/warrior_games/index.html


Hidden Heroes

The blisters have nearly healed. It’s been almost three weeks since I traveled DC with a marvelous group of nearly 60 men and women who are part of the Elizabeth Dole Foundation’s Caregiver Fellows Program.  During this trip I reconnected with old friends and met new friends I’ve only known online.  We spent time sharing our stories and experiences with one another and forging a special bond that can only be felt by those who have been through similar experiences.  And we walked for miles on the endless marble and concrete that is Capitol Hill.

We spent Thursday on Capitol Hill meeting individually with our congressional leaders to present the findings of the newly released RAND study Hidden Heroes:  America’s Military Caregivers and to explain why this study matters, why these statistics are more than numbers on a page, and to give a face to the 5.5 million military and veteran caregivers in our nation.

That morning Senator Patty Murray introduced S.2243 – Military and Veteran Caregiver Services Improvement Act of 2014. A related bill was previously introduced in the House by Representative Elizabeth Etsy. H.R.3383 – Caregivers Expansion and Improvement Act of 2013. You can watch Senator Murry introduce her bill here Murray Introduces Major Military and Veteran Caregiver Bill.

On Friday we attended a Joining Forces event at the White House where First Lady Michelle Obama and Dr. Jill Biden, along with former First Lady Rosalynn Carter and Senator Dole, announced programs and initiatives designed to support caregivers of the nation’s veterans and active duty service members. You can watch these announcements at this link Support for Military and Veterans’ Caregivers.

While being invited to the White House (and sitting in the front row!) was immensely exciting, the event had a larger impact as I looked around the White House reception and realized that everywhere I looked was the familiar face of a caregiver.  For the first time ever we had a collective voice on a national level, a voice that reached far beyond the walls of the White House into the homes of other caregivers who, like us, have been fighting for years to be heard.

Empowering.  To be part of a group gathered with common concerns and goals working to make changes in our own lives, and the lives of others.  To reflect on the past eight years and recall how utterly alone I felt when this journey started.  To realize, at last, it was time to address the needs of the caregivers.  We will not be still.

Learn more about the Elizabeth Dole Foundation and Hidden Heroes:  The National Coalition for Military Caregivers at www.elizabethdolefoundation.org.

You can read the entire RAND report entitled  Hidden Heroes:  America’s Military Caregivers at this link http://www.rand.org/pubs/research_reports/RR499.html.

#DoleFellows #hiddenheroes

Cherry Blossoms in full bloom

Cherry Blossoms in full bloom

Dole Fellows with Congresswoman Susan Davis, Senator Elizabeth Dole, and Congresswoman Nancy Pelosi

Dole Fellows with Congresswoman Susan Davis, Senator Elizabeth Dole, and Congresswoman Nancy Pelosi

White House

The White House

Front and nearly center in the East Room

Front and nearly center in the East Room


I’m melting!

I’m tired, therefore, this post isn’t up to par.  I’m including it simply to satisfy my compulsive need to tell the complete story in chronological order.

Ohhh! You cursed brat! Look what you've done! I'm melting! Melting! Oh, what a world! What a world!

Ohhh! You cursed brat! Look what you’ve done! I’m melting! Melting! Oh, what a world! What a world!!

After nearly seven years (long, incredibly frustrating years), Sean officially retired from the US Army Reserve on February 11, 2014. Hallelujah!

A process that consumed our lives for many years…a bittersweet ending for a soldier who dedicated his life to serving his country…a relief for his wife who has grown weary of fighting systems that should be designed to help.

So, while the Oz saga from Ft. Riley has played itself out and the Wicked Witch has met her demise (if you’ve been following our blog, this makes sense, I swear), it was not without getting in a final jab. I was required to become Sean’s legal guardian in order for him to “obtain any and all retirement benefits during his lifetime” due to an incompetency ruling.

Recap:

March 2007- ineligible for medical board due to “unexplained physical symptoms” (undiagnosed PTSD and TBI)

July 2007 – PTSD diagnosed

December 2007 –  TBI screening

March 2008 – TBI diagnosed, medical evaluation board (MEB) initiated

April 2008 to January 2010- nooooooothing……

January 2010 – testified before House Committee on Veterans Affairs regarding “Seamless Transition” between DoD and VA systems

February to May 2010 – multiple appointments

June to November 2010 – multiple complaints to get MEB paperwork completed

2011 – mostly nothing……

<insert intermission>

January 2012 – OOPS, case was terminated in June 2011 (Ft. Riley claimed we missed a deadline that we were not informed of, we were not notified that the case had been terminated)

June 2012 – records sent to Ft. McCoy to start new MEB under IDES

<insert theme from “Jeopardy”>

February 2013 – records arrived in Ft. Carson

March to May 2013 – repeat all examinations, tests, and paperwork from 2010 as it was all expired

June 2013 – MEB NARSUM sent to Physical Evaluation Board (PEB)

December 2013 – PEB rated 100% vision loss due to TBI, and 70% PTSD

January 2014 – notified that due to incompetency statement in NARSUM a legal guardian would need to be appointed, POA was not sufficient for payment/benefit purposes

February 2014 – officially medically retired

Bout damn time.


Tough Pill to Swallow

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Look at that mess of pills.  Some are shiny or brightly colored, the white ones come in different sizes.  They all go into Sean’s stomach every day.  That’s right, this is *1* day’s worth of medication.  You would think that with all these pills he’d be feeling pretty darn good every day.  I’ve seen first hand how each pill affects him, and the adverse effects when he does not take them.  I believe that (at least to some degree) they are helping him, and his doctors agree that he’s been more stable than not in the past two years.  Sean himself doesn’t want to make major changes to his medication regimen because he remembers how he felt and acted pre-medications.

2013 was a long year.  Sean had more pain than normal, experienced more periods of depression, contracted a nasty unidentified illness while in Mexico (he didn’t even drink the water) that took months of recovery, was diagnosed with gastroparesis (stomach is too slow to empty), and had more trouble generally accomplishing his goals.  We scaled way back, while still trying to participate in a few events to get ourselves engaged.  The past two months his migraines have been out of control and his pain levels over all have consistently increased.  The pain meds don’t seem to be helping the way they should.  I feel very helpless.  Tomorrow he will be seeing his doctor and I have been reviewing his daily health notes.  It’s sad to see the marked decline since October.  And scary.

I have accepted that we will have good days followed by bad days and that the cycle will continue.  I no longer panic every time he has a difficult day or a new symptom or weird behavior.  But when I see a consistent march downward, it frightens me.  Not because I fear the immediate future, but because no one knows what his health will be a year from now, or five years, or ten.  Is this a sign of what’s to come?

Last night was a particularly bad night.  Incredible pain.  Pain meds were no help.  He was up and down all night long, unsteady on his feet and needing help getting around.  He finally went to sleep around 7 AM this morning.  His poor dog was up all night, too, worrying over him and trying to let me know that his dad wasn’t feeling well.  I am praying they both sleep well tonight.


Media Links

Fort Hood Sentinel

Army takes 9 medals in cycling at DoD Warrior Games

http://www.forthoodsentinel.com/story.php?id=16081

DVIDS–Defense Video & Imagery Distribution System

Army cyclists roll their way to the podium

https://www.dvidshub.net/news/167733/army-cyclists-roll-their-way-podium#.VZWZxPlViko

Video: Cycling – U.S. Army Veteran Sean Johnson – 2015 Warrior Games

https://www.dvidshub.net/video/409423/cycling-us-army-veteran-sean-johnson-2015-warrior-games#.VZVAyPlViko

Video: 2015 Department of Defense Warrior Games WTC Version

https://www.dvidshub.net/video/409422/2015-department-defense-warrior-games-wtc-version#.VZWT6flViko

NPR

Connecticut Woman Creates Non-Profit to Help Military Caregivers

http://wnpr.org/post/connecticut-woman-creates-non-profit-help-military-caregivers#stream/0

Washington Times

Wounded Warrior Caregiving Hero: Meet Melissa Johnson

http://www.washingtontimes.com/news/2015/jun/8/wounded-warrior-caregiving-hero-meet-melissa-johns/

Warrior Care Com

2014 Warrior Games–Cycling Competition

https://m.youtube.com/watch?feature=youtu.be&v=FuLefPFkdBc

DOD News

Competing at the Warrior Games

https://www.youtube.com/watch?v=CoZLGqTWfKE

Argus Leader

Warrior Games keep blind vet in touch with Army

http://www.argusleader.com/story/news/2014/09/30/games-keep-blind-vet-touch-army/16465753/

Aberdeen American News

Aberdeen man riding into history

http://www.aberdeennews.com/sports/column-aberdeen-man-riding-into-history/article_793d3b7e-2abb-5f5f-9232-b894181314e7.html

Warrior Games possible in Aberdeen veteran’s future

http://m.aberdeennews.com/news/local/warrior-games-possible-in-aberdeen-veteran-s-future/article_a36ed51a-a459-5a69-8e3c-ace5b47e3777.html?mode=jqm

Local veteran to compete in Warrior Games this fall

http://m.aberdeennews.com/news/local/local-veteran-to-compete-in-warrior-games-this-fall/article_0b08cf47-338c-513c-a734-4faf1f935137.html?mode=jqm

DVIDS–Defense Video & Imagery Distribution System

Staff Sgt. Sean Johnson – 2014 Warrior Games

http://www.dvidshub.net/video/363748/staff-sgt-sean-johnson-2014-warrior-games#.VCw52_ldWSo

‘You may be Wounded, Ill or Injured but You’re not Defeated,’ tandem cyclist says at US Army Warrior Trials
http://www.dvidshub.net/news/133430/you-may-wounded-ill-injured-but-youre-not-defeated-tandem-cyclist-says-us-army-warrior-trials#.U-qb4vldWSr

Vision impairment won’t stop wounded veteran at Warrior Games Trials
http://www.dvidshub.net/news/133094/vision-impairment-wont-stop-wounded-veteran-warrior-games-trials#.U-qbbfldWSr

Rapid City Journal

Injury gives snowboarder new purpose

http://rapidcityjournal.com/news/local/injury-gives-snowboarder-new-purpose/article_365ea25a-8777-5e94-aa2f-325bfd93641b.html

JOHNSON: Recognizing Military and Veterans Caregiver Month

http://rapidcityjournal.com/news/local/communities/sturgis/johnson-recognizing-military-and-veterans-caregiver-month/article_5470745f-95c8-5b82-bb65-79706c4cee6b.html

The Daily Plainsman

Spirit of Dakota announces nominees

http://www.plainsman.com/v2_news_articles.php?heading=0&story_id=24185&page=75

Finding help at home: Melissa came home, to help Sean come back home

http://www.plainsman.com/v2_news_articles.php?heading=0&page=72&story_id=22598

Aberdeen American News

Aberdeen woman selected for Elizabeth Dole Fellows program

http://www.aberdeennews.com/news/local/aberdeen-woman-selected-for-elizabeth-dole-fellows-program/article_a83bd1db-ad68-570a-92fc-94fec5be9aee.html?_dc=650225048884.7494

Local veterans protest moving county services

http://m.aberdeennews.com/news/local/veterans-protest-moving-county-services/article_383bab94-9353-516e-8ac4-1063a85f1ac3.html?mode=jqm

KDLT News

Purple Heart Recipient Has Home Remodeled

http://www.kdlt.com/index.php?option=com_content&task=view&id=29146&Itemid=57

Soldiers Magazine

The Depths of Love:  Chronicling the Journey from Army Spouse to Caregiver

Story by:  Elizabeth M. Collins, Soldiers Live

http://soldiers.dodlive.mil/2013/11/the-depths-of-love-chronicling-the-journey-from-army-spouse-to-caregiver/

Bonus Blog by Brannan Vines:  What I Wish I’d Known When I Started Life as a Caregiver

http://soldiers.dodlive.mil/2013/11/what-i-wish-id-known-when-i-started-life-as-a-caregiver/

To The Point

The Soldiers Who Are Making it Home

with host Warren Olney on  KCRW Radio

On Memorial Day, Americans honor those who have died serving their country, but what about those who’ve survived? The wars in Iraq and Afghanistan have the lowest casualty rates of all American conflicts. More than 95% of the wounded are coming home. Many have survived injuries that were deadly in previous wars, but they’ve been left with life-long conditions requiring high-tech medical care. Can the Veterans’ Administration cope with unexpected numbers and very high costs? What about loved ones who’ve become caregivers full time?

http://www.kcrw.com/news/programs/tp/tp130527the_soldiers_who_are

CBS News

Story by: Michelle Miller

Caregivers of US Veterans Bear Scars of War

http://www.cbsnews.com/news/caregivers-of-us-veterans-bear-scars-of-war/

Treating Family Members Suffering from PTSD

http://www.cbsnews.com/videos/treating-family-members-suffering-from-ptsd/

Military.com

Story by: Heather Sweeney and Ward Carroll

Challenges Remain in Warrior Transition Units

http://www.military.com/daily-news/2012/10/24/challenges-remain-in-warrior-transition-units.html

Aberdeen American News

Group working to modify disabled vet’s home in Aberdeen

http://articles.aberdeennews.com/2012-09-26/news/34087491_1_aberdeen-fire-and-rescue-452nd-ordnance-jdh-construction

Six years after injury, Aberdeen soldier awarded Purple Heart

http://articles.aberdeennews.com/2012-02-11/news/31053672_1_aberdeen-soldier-mortar-purple-heart-medal

The Daily Plainsman

Local family joins nationwide campaign:  Love letters tell stories of life after combat

http://www.plainsman.com/v2_news_articles.php?heading=0&story_id=14711&

Nextgov.com

Poorly Networked Systems Leave Vets on Their Own When Seeking Care

Story by:  Bob Brewin

http://www.nextgov.com/health/2010/01/poorly-networked-systems-leave-vets-on-their-own-when-seeking-care/45778


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

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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…)


Camouflage and Christmas Lights

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

http://www.youtube.com/watch?v=Oo7fQHGXDYM


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.  

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