Monday, November 29, 2010

David Feherty's Improvised Explosive Day of Hunting

David Feherty, former PGA Tour golfer and current CBS Sports analyst hosts an annual Improvised Explosive Day of Pheasant Hunting at Southfork Ranch in Dallas, South Dakota.  Sean returned this October to catch up with friends and meet some new veterans.  Although he did not hunt this year, he plans to have a designated shooter next year making it possible for him to hunt despite his poor vision.

Sean thinks this program is awesome because he gets to be "just one of the guys" along with other veterans who bear the scars of war. . . . mulitple amputations, burns, prosthetics, wheel chairs.  Celebrities such as David Feherty, Kent Hrbek, Tim Laudner, and Tom Watson spent the weekend with the veterans hunting, sharing stories, and having fun.  Governor Rounds came to hunt this year as well.

250 American flags line the entrance to Southfork Hunting Lodge Dallas, SD

After the hunt

Kent Hrbek (MN Twins), Tom Watson (PGA), Sean, and Tim Laudner (Twins)

Tom Watson and Sean

David Feherty and Rick Kell have created several programs and specialized events designed for Wounded Warriors.  Visit their website Troops First Foundation.

Friday, November 19, 2010

Pack Your Bags

We have been invited to return to Washington, D.C. to attend a health forum at the Canadian Embassy entitled Partners in Defence:  Battlefield and Long-Term Casualty Care on December 1st.

Wow!  We were notified by both the BVA and Jeff Tracey, whose wife works for the Canadian Embassy. 

If I understand it correctly, we will participate in the day's activities and also give some feedback from the perspective of a family dealing with war-related injury.

How cool is that?


Sean has made some wonderful friends through his wounded warriors trips.  We are excited to announce that several of these friends and supporters have decided to sponsor his cycling endeavors!!  The money donated will cover the costs of a stationary bike for training at home, including a stand and wheel hub that will measure his speed, power, etc., clothing, gear, and monthly cost of an Olympic coach.  This coach lives in California, so he and Sean will correspond via email which is where the information gathered by the stationary bike comes in handy. 

Sean is still working with the VA prosthetics to obtain his road and track tandem bikes.  The USABA will help him find local cyclists willing to ride with him and help him train for the 2012 Paralympics in London.

What incredible opportunities are opening up for Sean!!!

Wounded Warrior and Triathlon

Jeffrey Tracey and Sean Johnson would like to train for Dr. Gupta's triathlon challenge.  Jeff was Sean's tandem cycling pilot in Colorado this summer.  He is outgoing, positive, and upbeat--a perfect motivator for Sean!  He has proposed to Sean that they toss their names into the hat for six available slots to train alongside CNN's Dr. Sanjay Gupta for the 2011 Nautica New York City Triathlon!! 

See Jeff's application video here:  Wounded Warrior and Triathlon
The challenge:  Tri iReport challenge

What an awesome opportunity this would be for both of them!  Sean has been hesitant, but gradually has come around to the idea.  It takes him a long time to process information and make decisions, and this one was huge.  It is definitely not something he would have considered before meeting Jeff. 

Good luck Sean and Jeff!!

Thursday, November 18, 2010

Finding a New Normal

The following article was written by Melissa's Great-Aunt Ruth Anne Moller.

As published in The Miller Press November 10, 2010.
R.A.M.ifications: Finding a new normal

How easy it is to take things for granted. Maybe it's our health, or water from the tap, or knowing when we flick the switch, the light will come on.

I--at least--am also guilty of too often taking for granted all that we have in this "land of the free." Voting, religious freedom, a free press, and so much more we accept as our due. Those freedoms have always been there for me; I never had to do anything to earn them, except be born in the U.S.A. And gripe all you wish about the state of the nation, we still have so much to be grateful for (including the freedom to gripe).
I sailed through my early years without much thought about how we arrived at being "free." The "war to end all wars" didn't end a thing. World War II was over. I barely remember anything about the Korean War.

But Vietnam caught my attention. A boy I taught when I was 22 (and he was 18) went off to war...and lost the use of his legs. My husband's nephew served in the Marines, and though he was not wounded, he still bore scars. I got to know several Vietnam vets, and I realized many would never be quite the same again.

The husband of my great-niece was a healthy guy who was employed with the Aberdeen fire department and was a paramedic. He voluntarily went to Desert Storm, then Bosnia with the Reserves. He then voluntarily went to Iraq.

There, he sustained traumatic brain injury in an explosion, and also suffered from waste-pit fumes. He has chronic PTSD and depression. He is legally blind. He has constant stomach pain. He is forgetful. And there are several other conditions directly related to service. His wife-a first-grade teacher-has taken a year off from teaching to help Sean try to make adjustments.

They have been going around and around in circles since Sean was injured, trying to somehow get answers, get aid, get relief from pain.

Melissa has a lengthy blog on the Internet. It is tragic to read, but it is also a testimony to strength. After she viewed, "When the War Comes Home," Melissa quoted from it: "There ought to be more songs about those soldiers whose war is never over, who made it home but never quite came back...oughta be more songs 'bout that."

It is easier to relate to a person or a situation you know, so as I read Melissa's blog ( it brings things closer to home, and also magnifies the fact that Sean and Melissa are part of the much bigger picture of what veterans sometimes face.
She sums up their life today: "In many cases when soldiers return home, life does not get back to normal. Instead, we must learn to live with, and adapt to, a new normal."

Despite all the turmoil, Melissa states, "Sean LOVED being a soldier. He used to say they would have to kick him out of the Army at age 60. He would have gladly deployed 10 more times and done his duty to his country."
So, this Veterans' Day, people will again fly the flag, make speeches, perhaps play patriotic music. But it is also a perfect time to truly, truly think about what we have, what we enjoy, and what we take for granted. Thank a soldier; thank all the soldiers, and not just on special days. Then take a deep breath and breathe in the air that is "freedom." Never take it for granted.

"None who have always been free can understand the terrible fascinating power of the hope of freedom to those who are not free." ~Pearl S. Buck

Thursday, November 11, 2010

Happy Veterans Day

Happy Veterans Day to all veterans and their families.  Thank you for your dedicated service and sacrifice.

Tuesday, November 9, 2010

Onward and Upward

During his marathon week of VA appointments Sean had upper and lower GI scopes which fortunately did not show any problems. He had a CT scan of his sinuses and a follow up ENT exam and will have sinus surgery in January for recurrent sinus infections/fluid build up. He has also been evaluated by pulmonary for shortness of breath and found to have reduced lung capacity (but clear xrays) and sleep apnea. He will do a sleep study in December.

Prior to his service in Iraq his biggest health concerns were seasonal allergies and an occasional cold. It illustrates the continued need to research and provide top-notch care to our Veterans. He has all his limbs, and everything in it's place, but it's the collection of persistent health issues that wears him down. It is true in so many of the Veterans that we have met. It's the little things that daily take their toll in addition to the primary conditions.

Sean was extremely frustrated that every doctor he sees and test he has leads to another test or procedure. Indeed, it has been this way for four years. 

We are both frustrated with waiting. . . waiting for resolution. . . waiting for our lives to get back on track.  But, as the psychologist pointed out last week, what if this is it?  What if this is our life?  We are trying to find the "new normal" yet this might be it.  Hmmm. . . that is an interesting scenario. 

Sean will not go back to the fire department, or deploy again with the Army.  He might never feel 100% or be pain free or not need medications.  His vision won't improve.  There will likely be many appointments in his future.  I may or may not go back to work.  I will need to be his driver.  Our kids are growing and moving on and moving out (and moving in and moving out).  There will be improvements over the years, of that I remain optimistic, but in the last five years we have learned how painfully slow change can be. 

I'm not working now, I was trying to volunteer as a tutor in the afternoons, but even that is overwhelming.  Driving exhausts me, and we have put on so many miles this year.  I worry about my ability to go back into a classroom full time, take time off for the appointments I need to attend, balance the evening work from school with quality home life, and somewhere find time for me.

Sean is happy working in the Kindergarten classes.  Perhaps there are more volunteer opportunities he will explore.  He wants to stay active in the sporting camps.  He is getting involved with service groups in town and attending meetings for the VFW, American Legion, and Disabled American Veterans.  He attends a weekly men's group at church.  Sean has applied with Guide Dogs for the Blind for a service dog.

Sometimes it feels like his world is expanding while mine is collapsing.  It feels like everyone in the family wants something from me and there is little in return.  I guess moms aren't supposed to need help or support.  I don't have the same connection to my coworkers as I am not there daily.  I have lost my military FRG friends as they have deployed soldiers and a different focus.  I have felt those relationships dying for a long time.  I spend all my time with Sean.  Sometimes I want to say, "This is not the man I married."  He is different now in a lot of ways.  I have to remind him that I need his support.  I need him to be there for me in return. 

We are working with his psychologist to build independence.  Maybe that will mean taking the shuttle to and from activities (but at $8 round trip it gets expensive).  I would love to see him manage his own daily schedule and do some work around the house.  Someday he may be able to take the DAV van to Sioux Falls for his appointments if he no longer needs me there. 

As the kids spend more time in the real world they will need less from me and will learn to stand on their own (I hope!!).  In less than two years our youngest will be out there, too. 

What if this is it?  Life passing us by while we get bogged down by the day to day and forget that each day is our life?  I have given this much thought this week and realized that if this is it, we better get on board and make more of it.  There needs to be some peace in our daily lives.  We need to stop waiting and start living.  How do we do that?  Attitude.  I'm not good at changing my doom and gloom attitude, so this might take a while. 

On another note, Sean's MEB packet is finally moving forward to the PEB!!  By tomorrow it will be on it's way to Ft. Lewis, WA where the PEB will take over the process.  It would be wonderful if things could move along quickly now and get this resolved before the end of the year. 

As for me, well, I'll be up and on the road at 5:30 AM tomorrow for Sean's appointment in Sioux Falls.  It will be dark and early and I will most assuredly be crabby.  So, I had better go out and enjoy today:  groceries, dropping off lunch money at school, driving Sean to his church meeting, Sean's doctor appointment, driving Sean to DAV meeting.  I can see it's going to be a challenge to change my attitude when that's all I can see!

Monday, November 1, 2010

November is National Family Caregivers Month

"During National Family Caregivers Month, we honor the millions of Americans who give endlessly of themselves to provide for the health and well-being of a beloved family member. Through their countless hours of service to their families and communities, they are a shining example of our Nation's great capacity to care for each other."

~Barack Obama in his  Presidential Proclamation--National Family Caregivers Month 

There are only four kinds of people in this world,” former first lady Rosalynn Carter once wrote. “Those who have been caregivers, those who currently are caregivers, those who will be caregivers, those who will need caregivers.”

Sunday, October 31, 2010

Pin Cushion or Guinea Pig?

This week we will be in Sioux Falls at the VA for a series of tests, aka poking and prodding.

Sean will have Pulmonary Function Tests (PFTs), a series of different breathing tests due to persistent sinusitis and repeated bronchitis along with a pulmonary sleep study.

CT scan of his sinuses, audiology evaluation, and an exam by ENT.

A colonoscopy and endoscopy.

Compensation and Pension review with mental health to evaluate his PTSD. 

Compensation and Pension review with optometry to evaluate his vision loss.

The C and P exams will be used to determine if Sean qualifies for a permanent and total disability rating.  The frustrating part for him is that these disabilities are already established and they are asking him to prove that he still has them and deserves the higher rating.

His reward for enduring all this will be a hunting trip.  We will meet up with my dad on the way home so they can go deer hunting in the Black Hills for the weekend.  No deer for Sean this year as he didn't apply for a license, but he will go along for the male bonding.  They always seem to have a wonderful time. 

Some of you may be thinking, "Is it really a good idea for a blind man to fire a weapon?"  If Sean applies for a license he just needs to designate a shooter to be with him.

Now, off to pack.

Fetch My Ruby Slippers, Toto

Back to Kansas does not make me a happy camper.
As usual, it rained all the way there.  Why does it always rain when I drive to Kansas?  Yet it beat the 40-60 mph winds on the way home accompanied by snow and icy roads the last hour and a half of the trip.  We drove down on Monday and home on Tuesday. 
All that for a 15 minute appointment.  You heard right. . . 15 minutes. 
The final NARSUM was reviewed by an MEB lawyer who believes that Dr. M's statements will be disregarded as 1) they don't match with his own interview notes and 2) the notes from Dr. H's neuropsych evaluation will be included.  Good news!
Five conditions were deemed to be permanently aggravated by service: postconcussive syndrome, irritable bowel syndrome, posttraumatic stress disorder, major depressive disorder, and vision loss.  The PEB will receive the MEB's findings as well as all of Sean's military medical records to make its disability rating for each condition.
He also recommended further testing for Sean's continued shortness of breath, recurrent sinus problems and nasal cysts, the loss of sensation in his hands and feet, and his neck pain. 
Which brings me to the trip.  At they lawyer's request an appointment was made with a doctor at Ft. Riley who does not work with the MEB, but does independent reviews and makes recommendations.  The appointment took literally 15 minutes.  The doctor came in, said hello, and handed Sean his report.  He had read the lawyer's requests and used Sean's medical notes to refute each one.  He did not ask Sean any questions or do any type of examination.  Seriously?  He could have done that by phone. 
He did recommend that Sean follow up with pulmonary tests due to his burn pit exposure and that he have his sinus cysts reviewed again.  He also thought Sean should have additional nerve testing for his loss of sensation.  But the kicker is:  he recommended Sean have it done at the VA with his primary care physician, not through the military.  So, he needs follow-up but. . . . . it's not our problem.
The lawyer has now drafted a new request that the army be responsible for the additional testing rather than just writing it off.  If his rebuttal is accepted, we may very well be going back to Kansas (I keep humming, "If I only had a brain."  Can't help myself).  Or, they may allow us to do the tests locally which means I'll be arranging the tests with doctors and Tricare. 
If not, the packet goes to the PEB which may or may not request the testing, and again their decision can be rebutted. 
There’s no place like home! 
There's no place like home!
There's no place like home!

Thursday, October 28, 2010

R & R

In October our family took some much needed time for rest and relaxation.  We went camping with friends at Roy Lake, SD.  Sean went fishing and caught 3 trophy-sized bass!  Since it was mid-October the weather was chilly, but sunny.  We played games, toured historic Ft. Sisseton, and walked around the lake.  It was wonderful to have both our girls together before Erin moved to Minneapolis (again).  Sean said it was the most relaxed he has been in a very long time. 

Sean with his 18 1/2 inch bass

Keeley and Erin jump for joy (to be camping with their parents, I'm sure)

Touring at Ft. Sisseton
Walking along the lake

Melissa and Sean

Getting the campfire ready for s'mores

Tuesday, October 12, 2010

Be Careful What You Wish For

Well folks, we have been wishing that Dr. M would complete his notes for the NARSUM so the MEB could progress to the PEB phase.  Today, our wish came true.  The notes are done and doctors' signatures are being collected.  By Thursday we will have the final draft to forward to Lawyers for Warriors for their review.  This is good news!

Can you sense the "BUT" coming?

The neuro psychological report from Dr. M conflicts with the testing completed by Dr. H at the Black Hills VA last April.  Although both doctors found evidence of chronic PTSD, anxiety, and depression, they have differing opinions of Sean's character.  While Dr. H found Sean to be sincere and putting forth his best effort, Dr. M cannot rule out malingering and lack of effort, in fact, he states he is unable to accurately rate the testing due to Sean's exaggeration of his symptoms and their severity.  (In case you're wondering, I do have Sean's permission to include this).

Are you kidding me?? 

First, Sean has had two neuro psych evaluations done by the VA since 2008 and both are closely aligned.  It is puzzling that the third battery of tests conducted by a military provider would come out differently.

Second, anyone who knows Sean knows this is a load of crap!  Sean is the most decent, honest, morally upstanding person I know.  He does what is right because that is just what should be done.  Although there have been many issues due to his PTSD, they are symptoms and not what is at his core. 

Third, Sean LOVED being a soldier.  He used to say they would have to kick him out of the Army at age 60.  He would have gladly deployed 10 more times and done his duty to his country.

Fourth, Sean LOVED the fire department and his career there.  He was developing the Hazardous Materials Team and working to improve the department in every way.  He would not willingly give that up in order to "fake" an illness and obtain benefits from the government.

I could go on and on, but you get the picture.

Purple Hearts Elusive For Traumatic Brain Injuries

Another interesting article from NPR.

Purple Hearts Elusive For Traumatic Brain Injuries

Sean has been working with Senator Johnson's office for over a year to push through his request for a Purple Heart.  His first application, after hitting many snags while traveling up the chain of command (ranging from persons reviewing the application saying the event in question never took place to some saying he did not deserve the award) finally came back this spring with a letter stating that while he met the criteria for receiving a Purple Heart due to a mild TBI, the board would not be awarding it.

Sean received a letter last week from Senator Johnson with a response from the Chief, Congressional and Special Actions for the Army Review Boards Agency which states that due to an overwhelming caseload, Sean could expect a response no sooner than 12 months from now. 

Once again, an example of how our military leadership fails its members time and time again.

Football's Brain Injury Lessons Head To Battlefield

From NPR.  Studying concussions in football players may help the military treat TBI in soldiers.

Football's Brain Injury Lessons Head To Battlefield

"It makes me a little mad. People are like, oh well, you seem fine. Well, you know, I'm not. It's not like I'm missing a leg. But I'm missing something that I can never get back."

- Jake Mathers

I LOVED this quote, as did Sean.  It really sums things up!!

Saturday, October 9, 2010

Veterans Sound Alarm Over Burn-Pit Exposure

NY Times article regarding burn pits in Iraq  Veterans Sound Alarm Over Burn-Pit Exposure

Burn Pits Action Center

Photos of the burn pit in Balad while Sean was stationed there.

The sign says "No Dumping"

Appointments, Appointments, Appointments!!

Currently we travel to Sioux Falls once a week to meet with a psychologist for PTSD.  In about a month he will start a peer support group for PTSD which meets once a month, also in Sioux Falls. 

Recently Sean had an ENT appointment for recurrent sinus infections.  As a result he needs to have a CT scan, follow up ENT and an audiology appointment. 

As part of the compensation and pension claim Sean submitted for permanent and total disability he will need to be reevaluated for TBI, low vision, and PTSD.  While he was told to bring his test results and records from all the appointments he had this past spring for the med board, he was also told that any non-VA provider's evaluation would not be given much consideration.  Instead of a neuro opthalmologist, he will see an opthalmologist.  Seems like a step in the wrong direction to me. 

Sean will also be scheduled for a colonoscopy and endoscopy due to continued issues with his digestive system. 

And as if those weren't enough, he will be having some bloodwork and pulmonary work (not at all sure what this entails as I missed the appointment and he couldn't remember) due to continued shortness of breath.  His primary care doctor suspects some of this is due to the burn pit exposure in Iraq. 

It's hard to look ahead when we keep coming back to this.  He might be able to have a couple appointments in town, but for many we will travel to Sioux Falls.  The first week of November we will be there for three days, but at least we were able to group them instead of driving twice in one week. 

I complain, but Sean has to go through all the examinations.

Sean is doing quite well and most of his symptoms have stabilized over time and with medication.  We are both pleased and encouraged by his progress.  He took on several adventures this summer and explored new opportunities.  Now when people ask, "How is Sean doing?" it feels great to say, "He's doing really well!" 


If you've been playing along at home you will not be surprised to hear that Dr. M. has not submitted his notes for the final NARSUM for Sean's MEB.  We heard mid-week that he was back from his leave (I personally hope he went somewhere warm and tropical) and the hospital commander had instructed him to have notes completed and turned in by Friday, a deadline set by Congresswoman Herseth Sandlin's office. 

Crossing fingers that it got done and we will receive beginning of next week.  

Once that step is complete, we will receive all documents and notes and have seven days to review them with assistance through the Lawyers for Warriors program.  Everything is reviewed with a fine-tooth comb and changes, rebuttals, or appeals are added.  From there it moves to a  Physical Evaluation Board (PEB) at Ft. Lewis, Washington where all evidence is reviewed and a decision is made regarding his disability rating and he is released from the Army. 

While the PEB has timelines within which to complete this review and rating, it can easily go the way of the MEB and stretch on indefinitely.  I would like to say we are feeling positive about this process and looking forward to a swift resolution, but. . . .

On another frustrating front, we have the VA, specifically the VBA (Veterans Benefits Administration), to contend with.  For the past four months they have reduced Sean's monthly benefit.  We went into the office in August and were given paperwork to resolve the error.  We have been in two subsequent times to ask about the status, and have gotten conflicting answers.  The first lady said it was processing and the money owed would be deposited mid-September.  The second lady (after the money was not deposited) told us that Sean's file was out of the office and nothing had been done on the claim. 

We know that his file is back in the office now, so maybe he will get his back pay with his October benefits pay before they owe for five months.

Cycling Clinic

Captain Mike Willman and Stoker Sean Johnson getting set for time trial in the velodrome

Sean and Mike during hill training

The Group

Sean and Mike at road time trials

Riding in road time trials

Road time trials

Following road time trials--exhausted!

Sean and Mike

Power testing
In September Sean attended a week-long cycling clinic for paralymic hopefuls in Colorado Springs, Colorado.  Training included 15 mile bike rides in the morning and again in the evening around routes in the Rocky Mountains.  They rode up, down, and around winding hills through beautiful scenery. 

Sean learned a lot, improved his technique, and made many friends.  The trip was rewarding and  fun in spite of the grueling training schedule.

He learned pack-riding techniques for riding with a group, track training in the velodrome, road techniques, drills for speed and endurance.  He participated in time trials which compare the rider's time to national standards as well as 3 K and 12 K racing.

Sean's goals following the clinic are to continue to train and improve in order to advance through the next four training standards to reach the national team standard for the paralympics.  He plans to attend future clinics and hopes to participate in upcoming races.

His long-term goal:  to become a paralympic rider.

October is Blind Awareness Month

October is Blind Awareness Month!
White Cane Day is October 15th.

Here are some tips as published by the BVA:

What to do When You See a Blind Person  

When you address a blind person, identify yourself immediately so there is no mystery as to who you are.

 Speak directly to a blind person so the individual can follow your voice.

 Don’t assume that a blind person is unable to participate in certain activities. Let that person make the decision.

When guiding a blind person, offer your arm for assistance. A blind person can anticipate your
movements by walking slightly behind you.

When you’re leaving … say so.

It’s okay to use words like “look,” “see,” and “blind.” Avoiding them may make a blind person self-conscious.

Offer understanding, consideration, and friendship to a blind person – not pity!

Caution a blind person about ascending or descending stairs, curbs, or obstacles.

Offer assistance when you see a blind person trying to cross a busy intersection, but don’t be discouraged by a “No, thank you.”

Offer to read newspapers, magazines, and other printed material for a blind person.

Let blind people speak for themselves – they don’t need interpreters.

When speaking to a blind person, don’t raise your voice. Remember, that person is blind, not deaf.

Don’t distract a guide dog from his main purpose of safely leading his master. Ask for permission before petting.

Guide Dog Etiquette from Guide Dogs for the Blind

Overview on Orientation and Mobility from the Palo Alto VA

When the War Comes Home

Interesting video report from following three soldiers with PTSD.
When the War Comes Home
Reminds me of the Montgomery Gentry song "Oughta Be More Songs About That"

. . . and more songs about them soldiers whose war is never over who made it home but never quite came back. . . oughta be more songs 'bout that.

Brain Injuries Remain Undiagnosed in Thousands of Soldiers

Interesting article from Pro Publica and NPR.

Brain Injuries Remain Undiagnosed in Thousands of Soldiers

Read more about their ongoing investigation here:

Brain Wars: How the Military Is Failing Its Wounded

Legislation to improve rehabilitation services for veterans suffering from traumatic brain injury (TBI)
Bilirakis Introduces Legislation to Improve Services for Veterans with Traumatic Brain Injury

Friday, September 17, 2010

Med Board Update

There has been no progress.  None.  No notes from the tests administered on August 18th, which Sean says were the exact same tests he took in April.  And while there we were told the PHD who administered the tests in April was not "qualified" as she was a VA employee and not a military psychologist, after the intial information gathering by the clinical psychologist all the tests were administered by an intern.  Now we are still waiting for the doctor to write her notes and submit them to Dr. M. so he can write his LONG overdue notes. 

Also no movement on the VA and Sean's compensation and pension rating. 

I want a government job.

Tuesday, September 14, 2010

Cycling Camp Article

Here is a link to an article about the cycling camp Sean is attending this week.

I'll post more information after Sean is home.  He says he is getting a real workout and his butt is sore!

Saturday, September 11, 2010

BVA Convention in DC

The Blinded Veterans Association 65th National Convention was held in Washington,DC August 22nd-28th.  We attended our second convention as members of Operation Peer Support.  OPS seeks to connect combat-blinded veterans of World War II, Korea, and Vietnam with newly blinded veterans who have been wounded in Iraq and Afghanistan. On an ongoing basis, Operation Peer Support seeks to support blinded veterans and their families who are still struggling with the difficulties associated with loss of vision. (Paraphrased from website)

We have worked with the BVA this past year with Tom Zampieri and testimony on Capitol Hill in January, and by keeping in touch throughout the year. There is a lot of work that comes out of that small office! We are grateful for the work they do and the support they provide blinded veterans.

Sean and I had been looking forward to this trip since we left the convention in Portland last August.  We made great friends last summer and still keep in touch with many of them.  This year was similar as we had the opportunity to meet new people and make connections. Although many of our friends were not able to come to DC, we had a fabulous time with some new friends. 

In my opinion, the greatest benefit of attending the convention comes from the connections we make.  For a few days we are surrounded by people with similar stories and situations.  While each veteran's story is unique, there is a commonality in these stories, a reminder that we are not alone, and often inspirational stories of hope and healing.  It's comforting to talk to the caregivers, share our experiences and emotions, and offer each other support.  No one understands like someone who has been there.

This year I worked with Christina Hitchcock to develop an OPS Caregiver group.  The role of caregiver is challenging and frightening for all of us.  The shift at home can be daunting and exhausting, and without a support network we feel lost and alone.  We had a short meeting and were able to share our stories and discuss how we are dealing with the changes in our lives.  A profound discovery is that no matter the situation, injury, illness, age, we are all the same.  Everyone is struggling.  Everyone is putting on a brave face and going about daily responsibilities, but dying inside.  We have started a group online to share resources and facilitate communication throughtout the year.  It is a project I hope to expand and improve by the next convention. 

Day 1:  We arrived in DC and scouted out the Crystal Gateway Marriot and the underground shopping mall.  We went to supper at King Street Blues where we met up with our dear friends Lou and Ben, Christina, and AJ.  After a couple hours in the restaurant, it was back to the hotel where we spent the next couple hours at the bar (sober--I think I had about 12 cokes!!).  It was a great night of catching up!!

Crystal Gateway Marriott
Day 2:  Lou, Ben, Sean, and I helped Christina and her team of volunteers pack convention bags full of flyers and information.  We then headed to lunch at Bailey's where we spent the next four hours talking and laughing and laughing and laughing.  After lunch, we headed to the hotel bar where we spent the next six hours hanging out.  Two days in DC and we've barely made it outside!

Ben and Lou, our friends from Scotland
Kryptonite Rita--it was huge!!
Day 3: We ventured out of the hotel with Ben and Lou and took the metro (conveniently located under the hotel) to Union Station. We walked up to Capitol Hill and got a few pictures. Ben said, "I think I felt a raindrop." And sure enough the sky broke loose and we spent the next 20-30 minutes hanging out under a tree getting soaked to the bone. Not smart enough to enter the Capitol when the rain started. No. We walked AWAY from shelter and "hid" under a tree! Finally, we decided to find a cab and get a ride back to Union Station for lunch. By the time we found one, the sun was out and no rain in sight. A quick lunch at Johnny Rockets and back to the hotel for a meet and greet with the OPS and BVA board members. Showers and dry clothes and we headed back to Bailey's for the evening.

Melissa and Ben at Capitol
Sean and Ben enjoying the downpour--NOT!!
Day 4:  Attended meetings in the morning and in the afternoon we went to the Pentagon City Mall for some shopping.  That evening there was a dinner sponsored by National Industries for the Blind.  We spent the rest of the night lounging in the hotel bar.
Day 5:  More meetings and a tour of the Exhibit Hall.  Sean is seriously considering a guide dog now, so we spent most of our time at those exhibits. The National President's Reception was held that night, followed by a visit to Bailey's for a night cap.
Day 6:  Morning Business Meeting included a performance by Barry Michael, and a speech from General James Amos who is in line to be the next commandant of the Marine Corps.  I hosted our Caregiver meeting where spouses and mothers shared their emotional stories about their challenges.  Laurie Stevens from the National Alliance for Caregiving give us some information and resources.  Lunch was in a Mexican restaurant in the underground mall  Sean went on a tandem cycling ride with a small group of OPS members.  He met up with his cycling captain, Jeff Tracey, from his USABA trip in July as well as his discus and shotput coach, Matt Hawkinson.  Dinner was at Bailey's again.  There was an incident with pen theft (I'll never tell) and alls well that ends well.
Sean visits with General Amos
Day 7:  Free day so Sean and I toured the National Museum of American History.  Sean's cycling captian, Jeff Tracey, and his wife, Katie, had us over for supper with Matt Hawkinson.  We had a delicious meal of steak and potatoes and salad followed by fresh berries for dessert.  Jeff knows how to throw a party and kept the drinks coming.  It was a relaxing evening with new friends.

Infinity by Jose de Rivera
Sean getting radiated during the Cold War
Kermit the Frog
Steel beams from the 70th floor of the
World Trade Center's South Tower
Day 8:  Sessions in the morning and King Street Blues for lunch.  Sean and I took the Metro to WRAMC to meet our FRC Rosa Hamilton.  She is one hard-working lady!  It was fantastic to talk with her and giver he the update on Sean's med board.  She is also working with the VA to provide him with a tandem cycle so he can train at home (they will find him a local cyclist--NOT IT!)  We went to Ted's Montana Grill for supper with a new group of friends.  Joining us were Jesse and Michael Malarsie and Kathy Champion.  Of course there was a stop at Bailey's on the way home. 

Sean, Melissa, Michael, Jesse, Kathy with Angel, Ben, and Lou
Lou and Melissa
Day 9:  Started with a trip to the International Spy Museum where we played Operation Spy, and interactive game where our mission was to locate a missing nuclear trigger before it ends up in the wrong hands. No pressure. Just crack a few safes, decode some messages, interrogate a suspect double agent.  From there we went to Georgetown Cupcake, home of TLCs show DC Cupcakes.  We waited patiently in line, some of us more so than others, for about 40 minutes to get into the store.  The cupcakes were beautiful and smelled heavenly!  We each got a box to go and tracked down cabs to return to the hotel.  Unfortunately, there were two rallies in town that day:  Al Sharpton's "Reclaim the Dream" March and Glen Beck's "Restoring Honor" Rally.  There was overwhelming traffic and people everywhere.  Most of the roads between DC and Virginia were closed.  Our cab driver did not know how to maneuver around and find a way through.  He kept driving us in what seemed to be the wrong direction.  Finally, we asked him to drop us at the Metro station.  What a disaster that turned out to be!!  We waited over an hour for a train that was not so sardine-packed that we could actually push our way in.  People were pushing and shoving and fighting and hanging body parts out the doors so they couldn't close.  Once we were stuffed in, there was no moving.  The temperature was stiffling and body odor prevailed.  Yet as full as our train was, at each of the next stops more people crammed into the car.  Folks with a child and stroller barely made it out alive.  We arrived at the hotel almost 2 1/2 hours after leaving Georgetown Cupcake.  I am happy to report the cupcakes were intact, but most of the frosting had melted and ran down the sides.  They were still scrumptious!  The final Awards Banquet was held that night with a formal dinner.  Our last night in town, we kept it low-key in the hotel bar.  Tears were shed as we said our good nights.  I was so sad to leave my friends. 
Jesse, Michael, and Sean outside the International Spy Museum
International Spy Museum

Georgetown Cupcake


Jesse, Michael, Sean, Kathy, Angel, Karana, Lou, and Melissa
on our last night in DC

Lou, Jesse, and Melissa

Melissa and Christina

Day 10:  Lou and Ben met us in the lobby at 6 AM for one more good bye.  What a sweet surprise!  We flew home and were pleasantly surprised to see this cake that Keeley made for us.  She also made us supper.  What a great homecoming!

All in all it was a fabulous trip filled with lots of emotions and laughter.  We are planning trips to see each other around the country and in Scotland.  We've been home almost two weeks, and I'm still lonely for my friends. 

Only 338 days til Vegas!!

Thursday, September 2, 2010

Operation Alpha

The first weekend in August, Sean and Keeley participated in Lakeshore Foundation's Lima Foxtrot Program, a comprehensive program of fitness, recreation, sport, and transition support for severely injured military personnel.

They attended Operation Alpha, a camp designed for servicemen and women who have suffered traumatic brain injury.  This event was held on the Lakeshore Foundation Campus in Birmingham, Alabama and offered multiple sports and recreation activities.

Activities included rock climbing, scuba diving, tandem cycling, archery, air rifle, jetskiing, tubing, and fishing.  Sean's most memorable moment was tubing with Keeley because they laughed and relaxed. 

They met several other service members with TBIs and were able to connect with them and what they are going through.  It is always reassuring to meet others in similar situations and come to a better understanding of what we are all going through together. 

Keeley (3rd from left) and Sean (4th from left)
Waterskiing on a sit-down ski
While the trip was exciting and action-packed, the ride home was not so for either of them.  First, they were loaded onto the airplane in Birmingham and told the plane would be delayed while they waited for a second pilot.  Then, the pilot arrived, but it was announced that the runway the plane was to take off from was not large enough for the aircraft's weight.  Only 12 of 39 people would be able to stay on board.  Of course, no one wanted to volunteer to leave the flight.  Sean and Keeley agreed to the bump as the delays had already made them late for their connecting flight in Minneapolis.  The airline gave them vouchers toward future ticket purchases and sent them on a two hour taxi ride to Atlanta where they could get a flight home.  They arrived home 12 hours later than planned. . . without luggage.  The bags spent the night in Minneapolis and returned home the following day.

I will post more pictures when we receive them.

Saturday, August 14, 2010

Rocky Mountain High

In July 2010 Sean travelled to Colorado Springs, CO courtesy of the USABA (United States Association of Blind Athletes) for the 2010 National Sports Festival in Conjunction with the Rocky Mountain State Games

During the first half of the week, athletes had the opportunity to learn and refine their skills in various sports clinics instructed by USABA national coaches.  They then had the opportunity to compete in the Rocky Mountain State Games. 

Sean competed in tandem cycling with captain Jeff Tracey.  They won a gold medal completing the race in approximately 27 minutes (the next closest time was 36 minutes). 

In tandem cycling, the stoker pedals from the rear seat of the tandem, adding power, making the bike go faster and farther.  This is the position for visually impaired cyclists. The cyclist in the front seat, the captain, controls the steering, shifting, and braking.

Sean also competed in shotput and discus.  He won silver medals for second place in both events.

Captain Jeff Tracey and Sean
Tandem Cycling