HERO STORIES - Meet our UnstoppABLE heroes
Twila Adams - An Inspirational Leader
Southeastern Chapter member Twila Adams wanted to join the Army, travel, live abroad, and complete college. So she served in the Army from 1980 to 1991, where she was involved in Desert Shield and Desert Storm operations in Kuwait and Iraq. She ended her career as a sergeant, and returned to her hometown of Charlotte, NC, where she started a business providing mobile manicures, pedicures, and Reiki to the sick, elderly, and disabled who were unable to get out.
But three years after she returned home, another driver ran a red light and caused an accident that left Twila a quadriplegic. Initially she was only able to move her mouth and eyes, and her doctors told her she would never walk or care for herself again. She remained determined that she would improve, despite her prognosis.
“My parents raised me to believe the impossible, and that’s what I’ve been doing my whole life. Being told that I couldn’t do something made me more determined to at least try. I knew the hard work was really going to be on me.”
She drew upon her inner strength, her faith, and a supportive circle of friends and family, and put in the hard work necessary to improve. She was skeptical when a recreational therapist introduced her to the National Veterans Wheelchair Games in 2002, but it changed her life. Twila witnessed a wide range of sports available to her, which encouraged her to step out of her comfort zone. She was immediately excited.
“I saw about 600 athletes from all over doing things that I never imagined could be part of my life. I used to say that my accident happened to me; but after getting introduced to the Wheelchair Games, I say it happened for me. It changed my life.”
She was so grateful to find the Wheelchair Games, she became an advocate for PVA and eventually served on the board of the Southeastern PVA in 2008 and 2010.
“When I hear ‘Paralyzed Veterans of America’ I think of I think of progress. Of course I think of the Wheelchair Games, but I also think of policies, advocacy, and legislation. PVA reaches a lot of people and helps them understand that life can be really good regardless of the circumstances they’re living with.”
Twila has attended the Games for years, competing in sports like billiards, trap shooting, field events, bowling, boccia, power lifting, and tennis. In 2002, she was the first woman to win the Sportsmanship Award at the PVA National Trap Shoot Competition. In 2019, she won the prestigious Spirit of the Games Award, given to the athlete who exemplifies the heart and soul of the Games through leadership, encouragement, and a never-give-up attitude.
Today, she can walk briefly by kind of wobbling and dragging her foot. She says she can’t feel a lot, but she has chronic pain from the neck down, as well as intense burning and pain in her hands, legs, and feet. And even with the right attitude, some days are difficult; but she makes the choice to stay in the right frame of mind.
She wants to impact others as a Paralyzed Veterans advocate by sharing hope with those who feel hopeless. She also wants to stay active not only for herself, but so she can inspire others the same way she was inspired at that very first Wheelchair Games. She says that exercise and competing improves her emotions, allowing her to connect with people who know what she is going through and giving them opportunities to support each other.
“I’m reminded that I’m not doing this for me; I’m doing this for someone else. When others see me in my chair, they’ve going back to tell their loved ones about what I can do. If I can inspire the novices and share a little bit of hope, then my injury is not in vain.”
Josue Cordova - Honored to Serve
Coming from a family of servicemen, joining the military was a natural choice for Josue Cordova. Says Cordova, “I’ve always had great respect for the military. My grandfather was a WWII veteran, and he served in the Pacific in WWII. My grandfather was always so proud to serve in the Army.”
Cordova’s pride in serving his country, paired with a desire to set a different path for his life led him to enlist in the United States Air Force at age seventeen. “I grew up in the south suburbs of Chicago. We grew up kind of in a rough neighborhood, and we had a choice; either you go and do the stuff that’s not great for your life or you make a choice. And, I made the choice and joined the Air Force. For me, that was a better option.”
Freak accident while on leave
A Transportation Specialist, Cordova finished transporting an honor guard to two funeral services before going on leave. On a road trip with his brother, father and his brother’s friend, Cordova and crew were on their way home when disaster struck.
Realization slowly sets in
Cordova began to regain his short-term memory two-and-a-half weeks after the accident, learning that a driver had fallen asleep at the wheel and ran off the highway, plowing into Cordova’s car. The doctor broke the news in an abrupt and detached manner telling Cordova, “Well, you were in a serious car accident. Your spinal structure T11-T12 vertebrae, you’re never going to walk again. Your Air Force career is over, and your father was killed in the accident.”
It wasn’t until a week after surgery to fuse his spine that reality began to set in. One Sunday, while his mother was visiting him in the hospital, Cordova took his mother’s Bible and started flipping through it absentmindedly, something he and his siblings had done as antsy children in church. While flipping through the Bible, Cordova came across his father’s memorial card. “I just was devastated. That was the moment that I finally realized that I was injured and paralyzed and I was devastated. I sat there, and I wept, it must have been for hours. And then it all started coming to me.”
“He was an incredible resource.”
Cordova’s first experience with the Paralyzed Veterans of America was while he was still in his hospital bed, processing the effects of the accident. The Paralyzed Veterans Service Officer at Hines VA hospital at the time was Maurice Valeriano, who rolled into Cordova’s room and began telling him about all of the services and activities the Paralyzed Veterans of America offers.
While that first introduction to the Paralyzed Veterans was a bit overwhelming, Valeriano and other Paralyzed Veterans members proved to be a valuable resource in Cordova’s road to recovery. In the years following his accident, through ups-and-downs in life, Cordova says, “I could always rely on the PVA service officer to be there.”
“I didn’t feel alone.”
Cordova’s first grand experience with the Paralyzed Veterans of America was attending the National Veterans Wheelchair Games. Of the experience, he says, “It was one of the first times that I felt normal. It was one of the first times a normal feeling came over me. I sat in the lobby, and there were maybe a hundred, two hundred, three hundred wheelchairs in the lobby and everyone was talking, everyone’s just kind of socializing, talking, and you know what? I didn’t feel alone.”
“I’m honored to be a part of it, and I’m honored to be doing it now.”
As a former Board member and now President of his local Paralyzed Veterans of America chapter, becoming an advocate for the national organization is a natural step. Cordova says that his father, who served as a union president, spoke with passion — a trait he now manifests when talking about all of the incredible things the Paralyzed Veterans of America has accomplished since its inception in 1946 and continues to achieve each year.
Kate Callahan - Spirited Warrior
Kate Callahan is a warrior. She’s been a wildly inspirational and powerful force throughout her life, even after the 2000 surgical complication from hydrocephalus that left her a paraplegic.
She loved softball. She loved backpacking through Yellowstone. She was a fierce competitor who hunted occasionally and loved being a part of a team.
Kate knew she wanted to join the military when she was in the 4th grade, as she proudly took a look at her Air Force officer father’s uniform. Because of her dad’s service the family moved around a lot. That made Kate the new kid a lot of times, and she didn’t necessarily enjoy school, but she did enjoy sports, especially softball. And she had a knack for it.
She joined the Air Force right out of high school and transferred to the Army, where she served in the Middle East as a combat medic and then a flight nurse for 18 years. Service and strength has always been a part of who Kate is.
But when she found herself in a wheelchair, she went through a lot of emotional difficulties coming to terms with her new situation. “I was totally bewildered,” remembers Kate. “I didn’t understand how this could happen to me; I thought my life was over.”
And then she met recreational therapist Jose Laguna who introduced her to the world of adaptive sports. With Laguna’s encouragement, Kate concentrated on the things she could do rather than what she couldn’t do. This focus allowed her to once again become a strong athlete and competitor in a variety of different events like track and field, that she had not previously been involved in. Says Kate, “I do more now than I did before my injury.”
In fact, just six months after she turned pro, Kate set a new American record throwing discus for the U.S. Paralympic Team at the IPC Athletics World Championships. Since then, she has competed and medaled in numerous athletic events, including the National Veterans Wheelchair Games.
But when it came time to find a job, even an avid athlete like Kate needed some help. That’s when representatives from PVA’s Paving Access for Veterans Employment Program (PAVE) stepped in and helped her find civilian employment.
Kate had a B.A. in Sociology from the University of San Antonio, and a M.A. in Recreation Therapy from Texas State University – San Marcos, but she needed help finding a job. PAVE helped her with her resume and got her hired under a special program for people with disabilities, something she never would have known about were it not for the recruiting assistance.
“Whether you are looking for government work or something in the private sector, PAVE can help you with your resume,” she says. Kate’s recruiter helped her look good on paper and told her about job fairs, open positions, and programs she would never have known about otherwise.
Today Kate gives back to veterans by working at Brooke Army Medical Center as a recreational therapist.
She also served as Secretary of PVA’s Texas chapter, and encourages veterans to take advantage of PVA programs in order to enhance their civilian life. She says it’s fulfilling to help them realize what all is possible in the future.
Kate acknowledges the unique needs of women veterans, and is hoping to bring them together for fellowship and support. She encourages women veterans to reach out to each other. “You are part of the brotherhood, the womanhood, just like you were in the service,” she says. “You still have that camaraderie. You are not alone.”
PVA helped Kate Callahan find freedom and opportunities again after her injury, and she is paying forward that spirit to help other veterans with spinal cord injuries, disorders, or related diseases adjust to their diagnosis and lead fulfilling lives.
Through her service, Kate hopes to teach other paralyzed veterans that “life is waiting for you. It’s not going to come to you; you have to go get it.”
Bobby Fecteau - Continuing PVA’s Legacy
Military service is a family affair, and one of the primary motivators for Bobby Fecteau to join the United States Army in 1999. Fecteau says, “I was motivated by a legacy of service in our family, primarily following in my father’s footsteps to serve my country.”
Fecteau served in the Army for eight years, before embarking upon a career in healthcare and later earning an MBA in the field.
Shortly after leaving the Army, Fecteau competed in an adventure race, “I dove into a shallow mud pit fracturing my cervical 4/5/6 spine — rendering me an incomplete tetraplegic.”
The road to recovery and rehabilitation was a long one for Fecteau, with him spending “eight months in intensive inpatient rehabilitation at Hunter Holmes McGuire Veteran Affairs Medical Center in Richmond, Virginia.”
Paralyzed Veterans at his bedside.
While in the hospital, Fecteau became acquainted with the Paralyzed Veterans of America when a member introduced himself. Fecteau recounts:
A member of the Mid-Atlantic Chapter of the Paralyzed Veterans of America introduced themselves to me almost immediately after arriving at the hospital. It had a huge impact on me early on that I had a lifelong partner in the difficult road to recovery ahead.
Paralyzed Veterans helped shape Fecteau’s journey through rehabilitation and preparing him for life post-injury. “The Paralyzed Veterans of America has had an instrumental impact on my recovery from day one,” says Fecteau, “They’re by your bedside early on making sure you know exactly what you need in terms of benefits in the VA.”
Navigating life post-injury
Fecteau also says that Paralyzed Veterans taught him “how to navigate life post-injury through their mentorship, allowed me to lead a healthy life through adaptive sport, and provided me the confidence to achieve whatever goals I may set.”
Adaptive sports have been a part of Fecteau’s life since his days in outpatient rehab. After completing his inpatient rehab, Fecteau went on to spend “another two years in outpatient rehabilitation combining activity-based therapy, adaptive sports, and research studies.”
A member of the Northern Virginia Wheelchair Rugby team Mutiny, Fecteau is also an avid golfer. Says Fecteau, “I was exposed to adapted sports via the National Veterans Wheelchair Games and the Paralyzed Veterans Golf Open,” both of which he’s competed in numerous times since being injured eight years ago.
However, benefits, sport, and support are only a few of the ways Paralyzed Veterans have helped Fecteau’s life. Not only has Fecteau found fellowship, but he says, “I also utilized the Operation PAVE program to successfully regain employment post-injury.”
Serving as Paralyzed Veterans of America Fellow, Fecteau says “it is my hope to strengthen the brand and continue the legacy of this great organization so anyone confronted with disability may realize they have a staunch advocate and support network for life.”
Army wife Bobbie Guinn remembers the heartbreak she felt when she told her children that their father would never walk again.
“I remember driving down the road in the car with my children and my daughter asking how her daddy was going to walk her down the aisle someday,” Bobby says.
I remember telling her, ‘You know your dad; he’s going to figure it out.’
Facing adversity as a family.
To Bobbie’s 10-year-old daughter Dustie, it was hard to understand at the time. It was 2006, and her father, Sergeant Tommy Guinn, had just been injured in Pakistan while helping with earthquake relief. Tommy was making repairs on a helicopter when a nearby helicopter started its blades. The blades struck him in the head and knocked him to the ground, leaving him with a cracked skull, brain injury and a T9 and T10 spinal cord injury.
It was a period of great adversity for the Guinn family. Bobbie’s father had just passed away, and Tommy, after returning to the United States to begin treatment at Brooke Army Medical Center in San Antonio, remained in a coma for nearly a month. He was later transferred to the Dallas VA Medical Center to begin his rehabilitation.
“For the family, it’s difficult,” Bobbie says. “All of a sudden, they come back as a different person, but you don’t want to give up on them.”
Finding a way back.
It was at the Dallas VA that the Guinns met Paralyzed Veterans of America National Service Officer Perry Dijkman, who immediately began the process of securing Tommy’s benefits.
“Perry did a fabulous job; our benefits went right into effect,” Bobbie says. “It took us longer to retire from the Army. I was so worried about Tommy at the time, and Perry just did everything for us.”
Tommy completed his rehabilitation and returned home having to adjust to his new way of life. He refused to abandon his roots as a “redneck, country boy,” Bobbie says, and it did not take him long to realize that a wheelchair did not stand in his way of pursuing his passions for the outdoors, particularly hunting and fishing.
“He’s been told numerous times that he needs to get a minivan because that’s what people in wheelchairs do,” Bobbie says. “But his response is, ‘If you find me a minivan that can pull my boat, then we’ll talk.’ He drives a truck.”
Still enjoying life.
Tommy has continued to pursue activities he loved even before he was hurt, including golfing and jet skiing.
He may not be able to do it the same, but he figures out a way to do what he wants to do.
Still, perhaps most rewarding is that Tommy was able to offer his daughter her wish. On June 21, 2014, he wheeled alongside Dustie down the aisle for her wedding day and even shared the traditional daddy-daughter dance with her on his lap. “She wanted him to roll her down the aisle because that’s who her dad is now,” Bobbie says. “It’s a package deal.”
Tommy’s life continues to be a shining example of what it means to live to the fullest, unaccepting of limitations. He and Bobby hope other injured veterans and their families can live by that example.
U.S. Navy veteran and California PVA chapter member Darryl Lair has lived his life by one message: focus on what you can do, and not on what you can’t.
After a motorcycle accident that put him in a wheelchair 29 years ago, Darryl has consistently passed along that message to others – most specifically, kids with disabilities.
He volunteers at the Land Meets Sea Sports Camp at Casa Colina, a program he helped found 24 years ago at the place where he did his rehab. The camp introduces children with disabilities to a variety of sports – but it’s more than that, Darryl says.
“It’s much more than just sports,” he says. “It’s about life; it’s about being independent. Once you realize you can shoot a basketball or use a tennis racket, you realize there is really nothing you can’t do if you really try.”
After his accident, Darryl thought his years of extreme sports might be over. “When I first got hurt, I rode motorcross and in the wintertime I was a ski instructor and I was a pretty avid rock climber,” he says. “I thought ‘Oh my gosh I’m done, my life is over with anything exciting.”
But then a recreational therapist showed him what he was capable of. Knowing his history of adventure, she convinced him to go snow skiing.
“It wasn’t just sports, it was independence; it made me realize that if I can ski, then I can do other things, too.” That is the message he passes along to the kids he mentors.
“I want them to be the best person they can be with whatever they have. It’s about figuring out what you like and what you don’t like and making it happen.”
Darryl remains active with PVA. He has participated in the National Veterans Wheelchair Games for twenty years, and recently served as a mentor on Kids Day. Darryl is also a chef, and teaches cooking classes for children with disabilities. He makes it fun, and shows them how to make healthy stuff – but it’s not really about the meals they prepare. It’s what they learn in the process.
“Everybody has a knife and a cutting board and you do the best with what you have. If you can’t handle cutting things up, you can read the recipes, you can help measure out ingredients, we’ll figure it out. Yes it’s a cooking class but it’s about learning that there is so much you can do.”
Darryl believes the value of PVA is that he receives the funding and opportunity to seek adventures and continue to live a full and rewarding life. He likes to say “yes” to trying new things. And he receives great joy in helping others overcome their challenges.
“I sometimes feel like I get more from it than what I’m giving. It’s helping me understand myself and my life. It’s just really rewarding.”
Sports and recreational events give veterans with disabilities the opportunity to live healthy lives with purpose, competition, and camaraderie.
For Army veteran James Howard, adaptive sports helped fill a void he once thought only his military service could fill.
“I thought the military was going to be the only thing for me for a long time,” says Howard, who served in the Army from 2002 to 2010 with the 82nd Airborne and Special Forces training at Ft. Bragg. He deployed to Iraq where he escaped numerous near-death combat situations with minor injuries. But in 2008, Howard was injured in a service-connected accident that left him a quadriplegic.
“When I was first injured, I was unsure of how I could move on from my military career and still have a full quality of life,” he says.
When I was first injured, I was unsure of how I could move on from my military career and still have a full quality of life
With limited use of his arms and no use in his legs, Howard thought his future was set within the confines of his home. That was until he received his first handcycle, and after adapting the specially-designed cycle by duct-taping his hands to the handlebars and pushing with his shoulders, he immediately set out to complete an 11-mile ride. He was instantly hooked.
“When I was given my first handcycle, I realized there were things out there I could still do, that could fill the void of my military service,” Howard says. “Sports enabled me to see that there were others with worse injuries who I could learn from and in turn help others.”
Sports enabled me to see that there were others with worse injuries who I could learn from and in turn help others.
That initial discovery found in a handcycle has since paid dividends for the many lives Howard has touched though his advocacy work. He served on the board of the Independence Fund and currently works as a case manager for the Quality of Life Foundation and as the military veterans program coordinator for the Christopher and Dana Reeve Foundation.
Howard also worked alongside his mom and caregiver, Nancy Wellons, in her startup of a Lynchburg chapter of AMBUCS, a national nonprofit that customizes tricycles and bicycles for people with disabilities, particularly children. In 2014, Howard launched a Richmond nonprofit called REACHCycles, or Richmond Empowering Abilities for Children with Cycles, which has provided 70 bikes for disabled children in the past year. “Helping a disabled child always puts life in perspective, when you think you have it bad off,” he says.
In 2013, Howard represented another nonprofit, Veterans & Athletes United, an all-volunteer veterans organization that provides recreational activities to disabled veterans, including skydiving, horseback riding, weapons shooting, hunting and fishing.
“I keep the mindset to keep active and physically fit and to help others do the same,” Howard says. “Maybe one day medical advances will get me out of this chair, but in the meantime, I’m going to stay active, enjoy life and help others.”
Maybe one day medical advances will get me out of this chair, but in the meantime, I’m going to stay active, enjoy life and help others.
Those three goals have spilled over into other aspects of Howard’s life, including his education and career. Following up on his 2002 undergraduate degree in civil engineering from the Virginia Military Institute, he is currently taking courses in universal design and home modification, all with the hope of one day starting his own business.
“I’d like to help those veterans who are not service-connected and don’t have access to all of the great benefits, as well as the elderly community and low-income families with disabled children,” Howard says. “I’m building the knowledge base now to have that business one day, but in the meantime, I’m happy to serve as an advocate for various groups.”
Amid his busy schedule, Howard has not given up on the physical activity and healthy lifestyle he has worked tirelessly to promote. In June 2015, he attended his third National Veterans Wheelchair Games in Dallas, co-presented by the US Department of Veterans Affairs and Paralyzed Veterans of America, where he earned medals in swimming, boccia and air rifles. “Paralyzed Veterans of America always helps me get to the events and stay active,” he says.
While Howard’s life alone speaks volumes of what can be done in spite of a catastrophic injury, he has not given up on speaking that truth into the lives of his fellow veterans and others with disabilities.
“I always tell others that they’re going to have to learn patience being in a wheelchair,” he says. “They also need to be open to others and reach out, which takes time. You may have bad days, but you’re going to learn from others who often are worse off but yet make the best of it.”
One of the greatest strengths of a talented musician is often their memory, but for retired Air Force Tech Sgt. Bill Bjornes – who served nearly 25 years as a trumpet player in both the Army and Air Force – the onset of a rare autoimmune disease in 2006 put that strength, along with his goals and passions, in jeopardy.
Bill began to notice severe memory problems, as well as trouble with his vision and balance, causing him to be misdiagnosed with everything from Dementia to Attention Deficit Hyperactivity Disorder (ADHD). But after moving to Offutt Air Force Base in 2009, Bill was put under the care of not only a top-notch medical team but the vice commander of the hospital, all of whom committed to nailing down a diagnosis.
In 2009, with his symptoms progressing to the point where he could not lift his right leg or keep his right arm steady, Bill was diagnosed with Hashimoto’s Encephalitis Type II, a rare neuroendocrine disease characterized by high levels of antithyroid antibodies in the blood and cerebrospinal fluid.
“The memory issues have been horrific, and I have lost complete sense of time; I have no idea what day it is or how long I’ve been sitting somewhere,” Bill says. “But thanks to excellent care in the Air Force and at the Hunter Holmes McGuire VA Medical Center in Richmond, I’m able to live somewhat independently.”
Still, while the medical care has been an important pillar in Bill’s recovery, it’s sports that he says have brought real impact, particularly in helping him to interact socially, deal with change and take care of everyday tasks. In 2012, after starting as a volunteer for Paralyzed Veterans of America, Bill learned of the range of sports available, including one he has always been passionate about – rifles and pistols.
“The Paralyzed Veterans of America sports programs are incredible because they take people who haven’t tried a sport and drop them right in the middle of it,” Bill says. “I can’t give enough credit to the VA and Paralyzed Veterans for all the opportunities I may not have pursued if I didn’t have the subtle nudge to go out and try it.”
Bill has not allowed his disease – even though it often causes intense shaking in his right arm – to limit his passion for or success in shooting. In April 2014, he was the overall leader in the SH1 division at an air rifle tournament at Camp Pendleton, CA, sponsored by Paralyzed Veterans of America and the Wounded Warrior Battalion. He also was named a Distinguished Expert in semi-automatic pistols through the National Rifle Association in 2013, and holds a rifleman certification in adaptive shooting.
Bill also has discovered passions for other adaptive sports, including archery, kayaking, pistol shooting, volleyball and recumbent bike. In May 2014, he took home the gold medal in the rowing competition at the Southeast Valor Games.
For Bill, it’s not about winning; it’s about the camaraderie and mental and social benefits sports have brought to help him cope and adapt to his disease. It’s also about inspiring other veterans who may be faced with a new diagnosis or injury. While sports may not provide a cure, they can help veterans live a full and active life, and adaptive technology and even 3-D printing breakthroughs are making those opportunities even more possible, Bill says.
“If there’s a sport out there, there’s an adaptive way to do it,” Bill says. “Nobody should give up just because they got hurt. I couldn’t cross that line in the beginning, and I was staying inside and wasn’t communicative. My life has greatly improved from sports, and others’ lives will too if they give it a chance.”
“I always look forward to the tournaments because that’s the time I get to be with my friends.”
Tony Choe came to the United States from South Korea when he was 17 years old. He joined the Marine Corps Reserve as a way to “put his roots down” and learn American culture, while also completing college.
But two years after serving in the Reserves he was working at his family’s convenience store when a robber shot Tony in the back and left him paralyzed.
At the time, his doctor gave him a 10% chance of survival.
“The only thing I could think about in the hospital was driving and going back to work and how I was ever going to be normal again,” Tony says. “It was devastating, and I thought my life had ended right there.”
But during his rehabilitation, a friend introduced him to Paralyzed Veterans of America’s Bass Tour event, which includes seven fishing tournaments each year in various states. Tony grew up ocean fishing in Korea with his father, so he signed up for the program hoping he’d be a natural fit.
On his very first bass fishing trip he won the tournament, and since then has been named Angler of the Year several times and has racked up many more awards. But it’s the friendships and excitement of the sport that keeps him—pardon the pun—hooked.
“Winning prizes is good, but it’s not about that,” he said. “You get to come to new places, you get to meet new people, you get to fish new bodies of water. It’s priceless. When you set the hook and you catch the fish and bring it in, you just have to enjoy every moment.”
Tony makes a living working as an IT specialist at the State Department, and the tournaments give him a break from technology. “I’m out there catching fish instead of fighting with computers,” he says.
“My life has revolved around the Paralyzed Veterans bass tour,” Tony says. “I always look forward to the tournaments because that’s the time I get to be with my friends. Everyone who fishes the tour is like a family member.”
Tony says his greatest reward is inspiring others and showing them that they can live life to the fullest, even from a wheelchair. He hopes his success will allow other disabled people to realize their potential, no matter what their goals are.
“People respect me; in fact, they don’t even look at me as if I have a disability,” Tony says. “I want people to not think about my disability but my ability. Fish do not care whether you’re in a wheelchair, an amputee or brain injured. I can fish just like anybody else out there.”
It was the day before Valentine’s Day in 2002. Recently enlisted in the Army, Chris Hull and a buddy were headed home before they deployed, when his friend fell asleep at the wheel and they crashed. The accident caused Chris to suffer a traumatic brain injury, and he broke eleven bones.
He was 16 years old.
Chris says he finished high school early, and his dad gave him three options: go to college, get a job, or join the military. “I was really kind of tired of school, so military sounded like a great option to me.” He was also lured by bonuses the Army was offering, and the motivation post-9/11.
After the accident, Chris had to endure multiple surgeries, illnesses, and infections, which sapped his spirit. It was a long seven months of inpatient therapy and rehab. So in order to perservere, Chris decided to treat it like a job. “It’s a long process. It’s not necessarily a hard process, but it’s like anything else if you treat it like going to work. That makes things much easier.”
Chris credits the staff at the Tampa VA for their dedication and talent. “I’m just really thankful for all of the therapists and people there at the VA who worked really hard to get me back into fighting shape,” Chris says.
Regardless of the great people he encountered during his recovery, Chris still found that he was sad and feeling sorry for himself. That’s when his VA roommate called him and told him about an adaptive sports program that was starting in Jacksonville. Chris took the opportunity to go up there one afternoon for practice and fell in love with wheelchair rugby instantly.
This was it: he had found a sense of purpose, and something to get him out of his head and away from his traumatic ordeal. “I spent three hours with those guys and decided that was going to be the thing I was going to do. I moved up to Jacksonville four months later and it’s been wheelchair rugby ever since.” He says the Games have given him a goal to work towards, and he’s a better person because of it.
Chris now shares the lessons he has learned with others as he mentors newly injured veterans, by encouraging them to push boundaries and become active participants in their lives through three simple steps:
- Find a way to get involved in the community, whether through sports, volunteering, or peer mentoring;
- Find something to strengthen your body;
- Just come out and do it, no matter what level you are at.
Chris is now an active member of the National Veterans Wheelchair Games and its large, extended family of veterans and supporters. He is always very excited to participate, because veterans have the chance every year to catch up with each other and compete. But he is also grateful to have the volunteers, fans, and spectators share in the excitement as well.
“People who have never seen adaptive sports before get to be involved, and it changes them,” he says.
Army Veteran Sualauvi Tuimalealiifano Finds Way Back to Life Through Adaptive Sports
For paralyzed Army Sergeant First Class Sualauvi “Sua” Tuimalealiifano, it was the faces of his three children that pulled him out of his darkest moments of loss and depression – just enough to discover that dreams, goals and ultimately hope might be regained on the surface of a rugby court.
“Depression and anxiety are a whole different kind of evil, and if I’d had the hand function for it, I probably would have taken myself out,” Sua says. “But what pulled me out was the fact that my kids were still young; I didn’t know what their future would be like without me around.”
Born in America Samoa, Sua was six years old when he and his family moved to Kalihi, Hawaii. In June 1997, three weeks after graduating from high school, the rugged, natural-born leader enlisted in the U.S. Army, where he flourished as a paratrooper, jumpmaster and special operations soldier, serving multiple deployments to Iraq and Afghanistan.
But in 2007, Sua was serving with the then-newly formed 96th Civil Affairs Battalion (Airborne) in Southern Afghanistan when enemy fire struck. Sua, wearing roughly 100 pounds of military gear, jumped to the M240B swivel machine gun at the back of the truck, but as the driver took an abrupt turn, Sua was thrown to his back on the ground.
I heard the snap like a hollow break of dry wood within, inside my ears
“I heard the snap like a hollow break of dry wood within, inside my ears,” Sua says. “But I was still fighting the war. So many of our supply channels and driving routes had been compromised. We were already short-manned, and often the only reason to send a chopper was for body bags or very severe injuries. I wasn’t about to chance it not knowing what it was. I didn’t see it as a problem, so I kept going.”
For months, Sua endured pain in the back of his neck so severe it “felt like one large needle piercing through it.” Still, he found it in himself to push through the deployment, until one morning in Aug. 2007, when he fell out of bed, his neck hitting the small table at his bedside.
“What happened was my upper half went to get out of bed, and the lower half wouldn’t go with me,” he says. “After my buddies helped me back into bed and I laid there for a few hours, I realized I couldn’t move anything from my waist down.”
Sua was medevaced to Bagram Air Base in Northern Afghanistan, and later to Germany to undergo surgery. After completing months-long rehabilitation at the James A. Haley VA Medical Center in Tampa, he returned home to Ft. Bragg, N.C. In need of more help and assistance from family, he, his wife, Shannon, and their three children moved to Hawaii, to a home that was not modified to meet his needs.
Sua refused to give up. He remained in the Army, first working at Special Operations Command Pacific and later as a counselor helping injured Veterans. But depression set in, and only compounded severely when a 2009 newspaper article left out critical facts about Sua’s combat service and injury.
“It wasn’t the story I told, and I didn’t want to show my face or be anywhere,” he says. “As much as I wanted to stay on active duty, I had all of these people calling me trying to help me out, and I had to set them straight with the story. I felt like I had betrayed my unit, as if I was perceived as having told a different storyline. It only pushed me further into depression.”
For the next six years, Sua determined to stay out of the public eye – and ultimately out of public altogether. With a cervical spinal cord injury that left him a quadriplegic, he believed any chance to get out of the house was too heavy a burden on those he would require for help.
That was until the U.S. Special Operations Command’s (USSOCOM) Care Coalition stepped in, encouraging Sua to fly to Tampa to participate in its adaptive sports program. It was there that he tried quad rugby for the first time, and suddenly, a new way of life began to open before him.
Sports have given me a sense of purpose, the means to stay fit and goals to keep getting better.
“Sports have been a complete game-changer for me in terms of living life with this injury,” Sua says. “Sports have given me a sense of purpose, the means to stay fit and goals to keep getting better. Even more, sports have opened up the opportunity for me to be around other veterans with similar injuries. It’s there that we share experiences and passions and discover what else can be done.”
Sua and his family have since moved to Tampa, where he now competes on the Tampa Generals quad rugby team. The retired Sergeant First Class also has competed in rugby, wheelchair racing, shot put and discus at the Warrior Games, Invictus Games and Dixie Games.
On June 27, 2016, thanks to support from Paralyzed Veterans of America, Sua participated in his first-ever National Veterans Wheelchair Games with the same relentless passion and competitive spirit. Sua competed in quad rugby, discus, club, weightlifting and slalom. Throughout the week of the Games, his eagerness to learn and encourage alongside his fellow disabled veterans – whether injured in combat or not, was apparent.
“I was injured in combat, but veterans shouldn’t feel like they had to be in order to play adaptive sports; we don’t owe one person more than another,” he says. “An injury comes with side blinders, which will bring you back into depression if you let it. It requires constant repetition, reminding yourself that there’s hope.”
To assist with tuition, and having two grandfathers who had served in the military, Dan Rose joined the Army Reserve in college. Ten years into his Reserve career, Rose found himself serving as a combat engineer in Afghanistan. While on a routine route clearing mission, Rose and his crew triggered an Improvised Explosive Device (IED), hidden underneath the muddy road. The IED had just shy of one thousand pounds of explosives in it, splitting Rose’s armored truck in two, flipping it, and leaving Rose paralyzed from the chest down.
“HEY, YOU’RE GOING SKIING OUT IN COLORADO IN DECEMBER.”
Recovering and rehabbing at James A. Haley VA Hospital in Tampa, Rose was quickly introduced to adaptive sports through their jam-packed recreation therapy program, “The rec therapists at Tampa Bay were awesome. They always had things going on. The quad rugby teams would come in. We’d go hand cycling, do a lot of stuff. There was a lot of introduction to a lot of different things that were going on.”
Skiing, however, made Rose skeptical. So when his recreation therapist told him that she had arranged for him to go skiing just three months after his discharge, Rose’s response was a doubtful, “Okay.”
GOING HOME IS THE HARDEST PART
Rose was in a dark place in his life after returning home to his small town in Wisconsin. He says that before returning home, he already knew the sidewalks and restaurants from memory including all of the places that were not wheelchair accessible.
Rose says, “I basically knew where I could and couldn’t go before I even got there, so it was tough. And I didn’t know anybody else who had a disability. And so the world started to feel like I was the only person in it. I didn’t know how I really fit back into it.”
But Rose had a ski trip planned, not knowing how much it would change his perspective on life.
DISASTROUS DISMOUNT WITH AN EPIC VIEW
Filled with doubt, Rose followed along as instructors gave him tips to ready him for the slopes in Colorado. Once at the top, Rose dismounted the chairlift, expecting to begin his descent down the mountain; instead, he wiped-out at the base of the chairlift.
They got me up right away and got me off to the side. And I was just kind of sitting there dusting the snow off. My little sister was on the lifts behind us coming up, and she skied up behind, and she was like, “Pretty amazing.”
I thought she was talking about my dismount on the chairlifts, though. But I finally looked up, and I’m sitting there on top of a mountain looking over the town of Breckenridge. That’s kind of when everything hit me. I’m in a wheelchair. I’m paralyzed. There’s no reason I should ever be on top of a mountain like that, but, you know, there I was.
Not only did the ski trip help Rose regain his sense of confidence, he says, “it opened up my eyes to all the stuff that I still could do.”
The National Veterans Wheelchair Games has been a part of Rose’s life since 2012, and in 2018 he’ll be competing in the Slalom, Powerlifting, Field events, Bowling and Table Tennis.
For Rose, the Games not only present an opportunity to compete, but they also provide a sense of community and offer plenty of opportunities for mentorship. According to Rose, “All the sudden you go from feeling like you’re the only person in the world to having hundreds of people out there who are in the same situation you are in, that can help you out, that you can turn to.”
“It’s awesome to go from a place where there might not be many people with disabilities where you live and all of the sudden you show up in a city for a week, and there’s 500 wheelchairs.”
The National Veterans Wheelchair Games also present opportunities for the athletes to give back, be it in giving pointers to newer athletes, or taking part in Kids Day, as Rose has for the past few years. Rose says that Kids Day — a day where children with physical disabilities can interact with the competing wheelchair athletes and try out some adaptive sports — has been his favorite part of the Games since he was asked to volunteer in his third year of competing.
“It’s just amazing to be able to work with the kids and try to introduce them to the sports that have done so much for us.”
ADAPTIVE SPORTS ARE LIFESAVERS
If there ever was a spokesperson for the benefits of adaptive sports, Rose is that person:
You know, after I was injured, I feel like the biggest thing that I lost was my sense of identity. I went from being a very active, competitive person, all the sudden being paralyzed having to live life in a wheelchair, and I thought I was going to spend the rest of my time sitting on the sidelines watching everybody else have fun. If it wasn’t for adaptive sports I probably still be feeling like that. You know, it took me quite a while to realize that the injury didn’t redefine who I was as a person, you know, I was still the same person. So I could still compete and be active and live the life that I wanted to, but it took adaptive sports to make me realize it.
And for those contemplating see what the National Veterans Wheelchair Games are all about, Rose says, “Just go. Just show up. You know, you’re going to see that there are people there who have injuries that are worse than yours that are doing things that you thought were impossible for yourself to do. And that’s going to change your outlook on life.”
For Navy veteran Tina Leet, handcycling and other adaptive sports have been the cure to the physical and emotional loss she felt following a life-changing injury and nerve disease that ended her beloved military career.
A native of Oconomowoc, Wis., Tina began dreaming of a career in the military at eight years old. At age 15, following the loss of her father, a friend introduced her to the Naval Sea Cadet Corps, a one-week condensed version of Naval basic training for kids. It was there that she learned not only to cope with her father’s death but that a career in the Navy was her dream job.
After graduating high school in 2005, Tina enlisted in the Navy and completed boot camp and training to become an aviation machinist and helicopter mechanic. Before leaving for an assignment in Japan, Tina injured her knee while snowboarding. Later, while serving in Japan, Tina endured a second injury as a result of a rough landing from a helicopter she was working on.
“When I went to the neurologist, they did some testing and found out I tore my sciatic nerve in half, and that I had a nerve disease that there was no cure for,” Tina says. “I urged the doctor to fix it so I could stay in the Navy.”
Tina was medevaced out of Japan to Balboa Naval Medical Center in San Diego in 2009, where she continued her rehabilitation and even began walking with the help of a spinal cord stimulator. But Tina endured another fall, and as her nerve disease progressed, she discovered that her hopes for a career in the Navy would come to an end after more than six years of service. “It was hard getting used to the civilian lifestyle and accepting that I wouldn’t be in the Navy anymore,” she says.
But after working with the Semper Fi Fund to receive a handcycle, Tina learned about the variety of adaptive sports programs available through Paralyzed Veterans of America. Tina was quickly put in touch with Jody Shiflett, adaptive cycling program consultant for Paralyzed Veterans, who, along with other members of the Paralyzed Veterans Racing Team, welcomed her as a mentee, competitor and part of the team.
“It’s been such great support, and it reminds me of being in the military because of the camaraderie,” she says. “It was huge, and it lifted me up after being out of the military for only a year. It was like a new military type of family, and the support is so huge.”
Tina completed her first half marathon in 2011, finishing in second place among female racers. In 2012, she completed her first full marathon with a seventh place finish overall and a first place finish among female racers. She also achieved strong finishes in the Army 10 Miler and Marine Corps Marathons in 2013.
Tina says her goal is continue to train for at least four marathons and two half marathons each year, hopefully improving enough to eventually qualify for the U.S. Paralympic team.
Tina hasn’t limited herself or her Paralympic goals to handcycling, instead fine-tuning her skills in a range of sports to satisfy her long-held passions for staying athletic and active. She’s discovered great passion and skill for mono skiing, with a recent race even qualifying her to attend the national championships. She hopes the national championships with set the stage for a possible spot on the U.S. Paralympic team.
Tina has also tried wheelchair tennis and hopes in the near future to take up wheelchair basketball and sled hockey.
Despite her success, Tina hasn’t lost her heart for inspiring and mentoring other paralyzed or injured veterans who may be going through the same motions as she in facing a life-changing prognosis.
“Keep your head up, adapt and overcome because there’s so much you can do,” Tina says. “And also keep your head out and look for adaptive sports. It’s a good outlet that gets you back to where you feel good about yourself and not restricted by your limitations or injuries.”
MS & ALS STORIES
Veterans have high instances of multiple sclerosis (MS) and amyotrophic lateral sclerosis (ALS), but these diseases don’t stop our members from living lives full of meaning and purpose.
In 1992, after five-and-a-half years in the U.S. Air Force, a reduction in force saw Mark Reese unemployed and looking for a way to support himself. He spent the next five years trying to make ends meet with several different retail jobs, as he applied for positions that would lead to the next phase of his career. While on a daily run, a friend suggested that Mark apply to the Drug Enforcement Agency (DEA), which turned out to be the right opportunity for him.
Mark began the two-year application process and in 1999 was in training to become a DEA special agent. But during a qualifying run at the Quantico training facility, his right foot failed to lift mid-stride, and he fell.
After undergoing surgery for compartment syndrome and trying unsuccessfully to qualify four more times, Mark accepted a less physically demanding position as a DEA diversion investigator in 2001. It wasn’t until a year later that doctors thought they’d found the reason for Mark’s continued “foot-drop” occurrences and occasional leg weakness while running, biking, and climbing: they diagnosed him with multiple sclerosis (MS).
Over the next 11 years, despite receiving medical care for MS and maintaining an active lifestyle, Mark’s symptoms were intensifying and began to affect his personal and professional life. “My right leg would shake while rock climbing, or my foot would drop off the pedal while riding my bike,” Mark said. “As an athlete, I just wanted to push myself to keep going, but my body just wouldn’t cooperate.”
He began to rely on a cane while out in the field on work assignments. Still, he struggled with the fatigue and weakness, eventually falling while on a job. The DEA organized the purchase of a scooter for him to use while at work and finally in 2011 transitioned him to an in-office role as a program analyst.
It wasn’t until 2013 that Mark learned the correct and more serious diagnosis of ALS. Knowing the severity of the disease and its correlation with military service, his doctors told him he needed an advocate.
They advised me to visit the VA to discuss my care and benefits,” he said. “But they told me to talk to Paralyzed Veterans of America first. They said Paralyzed Veterans would take care of everything, and they were certainly right.
Mark began working the Paralyzed Veterans Sacramento Service Office. They helped him complete and file the forms for a power chair and an adaptive vehicle so he could continue to work as the muscle weakness became more severe. They helped him obtain the adaptive housing grants so he and his wife could stay in their home.
Army veteran Laura Schwanger was diagnosed with multiple sclerosis (MS) in 1982. For about two years she really didn’t know what to do with herself, and was having trouble living with her new illness. But then she fell in love with adaptive sports, particularly track and field. Suddenly, she had a reason to get out of bed in the morning.
When friends invited her to attend the Boston Marathon and she saw competitors cross the line in wheelchairs, “I knew that was what I wanted to do,” she says.
She was a natural. Just a few years after her MS diagnosis, she was named to Team USA in track and field, and won four gold medals in the Paralympics. She went on to other Paralympic Games, bringing home multiple silver and bronze medals. “It was a good time to be a woman with a disability as adaptive sports were evolving and there were a lot of opportunities,” she says.
After being a star on the Games circuit, she became a star in the classroom, earning her Master’s degree in Counseling Psychology. She began working with veterans suffering from post-traumatic stress disorder, as well as those who were, like her, adjusting to life with a disability.
And then life threw her another challenge.
“I was diagnosed with breast cancer, and I realized I didn’t want to wait for the next diagnosis to question why I hadn’t done the things I wanted to do,” Laura says.
Even though she was “weaker than I ever had been in my life,” she found a new passion – rowing. Before long she was back on the Paralympic stage, winning a bronze medal for rowing in the 2008 Games.
“I have gold medals from past Paralympics, but that bronze medal in rowing probably means the most to me,” Laura says. “I was so weak after my radiation treatments, but once I finished, I started on an exercise program, and eight weeks later I was invited to start rowing. Up until then, everything had been about breast cancer.”
Laura’s persistence in finding new pursuits in life shows how important it is to focus on what you can do, instead of what you cannot do. Her can-do attitude and hopeful spirit has taken her in directions she never expected. “When I was diagnosed with MS, I had no idea I’d eventually be trading in my fatigues for the USA uniform,” she says.
Laura remains thankful for the support of the Department of Veterans Affairs and Paralyzed Veterans of America. “I have received the benefits of the work of Paralyzed Veterans of America, particularly the coordinated care at the VA that has supported my disease and my cancer,” Laura says.
“Paralyzed Veterans also was instrumental in passage of the Americans with Disabilities Act, which has made my life so much easier and accessible.”
Now living in Florida, Laura continues to row and mentor others through adaptive sports. She also loves to ride her motorcycle and has even joined a group of women on a 1,400-mile motorcycle ride to Wisconsin.
Laura hopes other veterans will come to the realization that she had – that it is possible to do more than merely exist following a disability. “Each day is a gift,” she says. “The alternative is to curl up in a hole or to die, but it’s a gift that we are still here. The front door may have closed, but other doors might have opened, and joy can be found in opening those alternate doors that lead to something new you can succeed in.”
Ted Rake’s enlistment into the United States Army was born from a strong desire to change his life and introduce a semblance of discipline and direction. Rake recalls, “I woke up one morning, and I had a massive hangover; I saw a commercial for the Army. I remember sitting there, thinking to myself, I need this, I need to change. I need to do something with my life, or otherwise, I’m going to be dead by the time I’m 25.”
There was no changing his mind once he’d decided to enlist, so Rake visited a recruiter without telling a soul.
Rake recounts, “I didn’t tell anyone, I just went to a recruiter’s office. And shortly after that, I took the ASVAB test and then I signed up. I didn’t tell anybody. I didn’t tell my parents until I actually did it. I remember eating dinner at home one night and I just kind of sprung it on the family, and you could have heard a pin drop.”.
“The structure was exactly what I needed.”
Rake experienced change immediately after deciding to enlist in the Army and basic training proved to be the catalyst. Rake says, “Basic training brought something to life that I’d never experienced before. Discipline. Process. Teamwork. It was a really good experience.”
Through his time in the Army, Rake developed a strong work ethic and continually took on additional tasks to keep himself busy. So when a freak accident at a brigade-sponsored function left him with a limp, he was eventually forced to medical out of the Army with an honorable discharge. Rake says that afterward, “I couldn’t really run the way I used to or even walk the distances anymore because it would start to throb and swell and it would get to where I almost had a real bad limp. And it never really healed.”
Rake left the Army and eventually made his way to college, where he earned an undergraduate degree in Construction Management and a graduate degree in Instructional Design. Just three years into his professional career, Rake began experiencing strange feelings in his legs.
I’m a very positive person, but everyone has their limits.
It first began when Rake would go for a run– he was starting to train for triathlons at the time –his legs would start to feel strange. After experiencing leg symptoms a couple of times Rake went to see a doctor, but they found nothing wrong. After a year, Rake’s arm began to tingle, and he knew that something was going on that doctors weren’t seeing. It was at the VA where a doctor finally agreed and sent Rake for further testing. The final diagnosis? Multiple sclerosis.
When his body began a slow and steady decline, Rake became discouraged. He says, “To make a long story short, this was devastating to me.”
I kept telling them what I couldn’t do.
After his diagnosis, Rake happened to be at the Shepherd Center in Atlanta for work, when he began chatting with physical therapists there; they told him all that he could do with his body, and he countered with all that he couldn’t do. Rake left Atlanta with two new contacts, one of which was the Paralyzed Veterans of America.
THE BEST THING I’VE EVER DONE IN MY LIFE.
A few weeks after returning from Atlanta, Rake finally stopped by his local Paralyzed Veterans of America office. Again, Rake says, “They kept telling me about the adaptive sports, and I kept telling them what I couldn’t do.” So they convinced him to attend the Veterans Wheelchair Games, taking place the next week.
Rake attended the Games and had the opportunity to meet veterans from across the country; the experience changed his entire outlook. Rake says, “They were making the most of what they had, and they were getting it done. Man, I was so motivated when I came back from that I signed up for the PVA immediately, and since then I have been doing everything that’s offered. I will not say no to anything, and I’ll try everything and anything. It has absolutely changed my life.”
“You’ve just got to make the best of what you have and do it. And that’s also changed my attitude at work and everything else. My whole outlook on life has changed.”
With a career Army father, the United States Army was a natural choice for Cheryl Gerdes. Of her decision to join the military, Gerdes says, “I was steered, pretty much, by my dad; he had done 30 years in the Army. Three wars. He was an Army guy. But, it was also coupled with the opportunity to find money for college.”
Gerdes served in the United States Army from 1989 to 1996 and is a veteran of the Persian Gulf War. As a young lieutenant, Gerdes received vaccinations as a standard part of her deployment but was also one of the almost 150,000 US troops to receive immunization against Anthrax, rumored to be weaponized by Iraq’s, Saddam Hussein.
Gerdes recounts, “They believed Saddam Hussein would possibly employ a nerve agent, so they decided to immunize us against nerve agent. And in so doing, I ingested nerve agent. That and I was exposed to some things, I believe, when I was there. And from that, years later, things began to happen, and I was ultimately diagnosed with MS.”
Navigating the VA
Gerdes became acquainted with the Paralyzed Veterans of America through her visits to Edward Hines, Jr. VA Hospital in the Chicago area. It was at Hines VA that Gerdes was instructed to contact the Paralyzed Veterans service officer to assist in her quest to file for benefits and receive compensation.
They gave me some hope.
For Gerdes, connecting with the Paralyzed Veterans of America resulted in more than a helping hand with navigating the complexities of the Department of Veterans Affairs. Gerdes says, “They gave me some hope in getting some compensation, or at least going through the process. The advisor here is Winston Woodard, and he, himself, is a paraplegic in a wheelchair. Seeing him, and his example and his ability to continue with life and to do it well was super, super motivational.”
Helping others comes naturally to Gerdes, with an Army career comprised of several people-oriented roles. Gerdes served as a medical evacuation platoon leader, liaison officer, and company commander throughout her time in the Army, “In the military, there are soldiers that come from all walks of life and you’re dealing with people from everywhere. I think that is the job. It requires dealing with people to get it done because we’ve got to accomplish our mission together.”
George & Jann Vasiloff
Jann Vasiloff is the widow of U.S. Marine Corps Veteran George, who passed away from ALS. Jann is the inspiration behind the Justice for ALS Veterans Act, which would make the spouses of Veterans with ALS eligible for the DIC Kicker regardless how long the Veteran had the disease. Currently, the benefit is only available to survivors if the Veteran had the disease for eight years or more, which is usually unlikely due to the extremely progressive nature of ALS.
What did George do for a living?
He primarily worked in the trucking industry. He was a branch manager in transportation. That’s what he worked at most of his career.
Why did he serve?
It was Vietnam, and he was drafted. His number came up and he had to report to the recruiting center. At the recruiting center is they lined them all up in a line, and they went down the line and counted, “One, two, three, four, five, Marine. One, two, three, four, five, Marines.”
How long were y’all together?
We were together 37 years before he passed.
Do y’all have any children?
We have two. One son, and one daughter.
Are they around you? Do they live close?
They’re both a little over an hour from me.
What year was it that he was diagnosed with ALS? Do you remember?
The actual diagnosis was September, 2013, but of course he’d had symptoms before that. ALS is always the last thing that they think of. They look at everything else first and then that’s kind of a process of elimination.
And he passed in March of 2015?
It was fairly progressive but fairly standard.
Yes. It went very quickly. I mean, within the parameters, but on the lower end of the parameter instead of what we’d been hoping for.
After he passed, were you aware of this DIC benefit? When did you start fighting and figuring out that you needed to?
Initially it was because through the ALS Association, the rep that we were assigned came to the house and one of the first things she asked was, “Are you a Veteran?” And he said, “Yes.” McGuire was our VA hospital and she took us down, and the first thing after we did all the paperwork, she said, “We’re going to the PVA office.” And we went over there and they said, “We do everything,” and they did. They filled out all the paperwork, everything that needed to be done. So they were our point of contact, other than the doctors themselves, but they absolutely handled everything and were our point of contact for everything. I don’t know what it would’ve been like without having that resource.
When you emailed me you said you had talked and met with a lot of people before you got to PVA and got real help.
I had gone through several people for help on the Justice for ALS Act before I connected up with PVA on the legislative end of things.
Okay. But after he passed you realized that you weren’t eligible for the DIC benefit.
Yeah. Somebody from the VA told me, “This is DIC, this is what you’ll be getting, and then you’ll be getting this death benefit.” Well, I didn’t get it. And so, I just thought it was a mistake and looked into it, and that’s when I figured out through talking to people what the regulation was and so forth. He died in March. It was probably summer by the time I figured all that out.
And then you started working with PVA?
Yeah. Once I got the official ruling from VA. I already knew what it was going to be.
In hindsight I should have gone straight to somebody that served on one of the VA committees, with either House of Representatives or Senate, but I wasn’t thinking that. I immediately thought of my own senators, both of whom claimed that VA affairs and VA benefits and so forth are one of their top priorities. So, that’s where my mind went. But I never got anything. There are bigger fish to fry, we all know that, but everybody thinks their own problem is the most important.
You weren’t really getting anywhere.
I was getting nowhere. So then I went to ALS, the national organization. And I can’t remember how many people I went through to get to where I got. But eventually they sent me over to the vice president of public policy who wrote me and said, “At this time I’m working with PVA staff here in D.C. on the best path forward on this issue.” That’s when the light bulb went on. I thought, “I need to go to PVA and ask, how can we get this [issue] noticed?” And that was how I circled back to PVA, which, had I been logical, I probably should have started with them to begin with.
These people serve and then receive this diagnosis, and then it’s almost like a kick in the pants after death for survivors not to get this benefit that they should.
The way the reg is written, you don’t get that death benefit unless the patient died of the disease, and had the disease for eight years or longer. And that was my whole point. People don’t survive eight years. Survival’s getting a little bit better because of the new drug therapies that are coming on the market, but there’s no cure. And eight years is not the norm. The norm is still two to five. Back when George was diagnosed the norm was two to three, and he fell right in that window. And I cited all of that.
How’s it any different than if a veteran develops cancer from Agent Orange and lives eight years and one day? His widow gets that death benefit. And an ALS patient who served, lives seven years and 30 days, his wife doesn’t. His spouse doesn’t get it. So, it was arbitrary. And it just needs to change. I don’t know how they came up with this, but whatever service connection they made to ALS, people that serve, they’re not getting the full benefit. And you need that benefit more as a surviving spouse because you’re getting the disability from the VA while your husband is alive and suffering.
They’re quite generous with that 100% disability but the minute the patient dies, that’s gone. The absolute minute. I mean, that’s it; that was your last payment, you’re done. And so, you go from being able to pay your bills and this, that and the other, down to the DIC only. When I started this the death benefit was $230 some dollars a month, so it’s not a lot. I don’t know what it is today, probably not too much more, but that’s a car payment. That’s the way I look at it.
I won’t get anything from this if this Act passes, unless it’s rewritten the way the original one was written. Couple Congresses ago, if it would have passed it would be effective only for those that died of ALS from October, 2018, forward. I always said, I wasn’t doing this for that money. Not that I’d turn it down, mind you, but I was doing it to change what is just a gross oversight.
I know someone else in Nebraska and her husband only lived a year, and he was a Veteran. After he was diagnosed I said, “You need to go straight to the VA in Omaha and sign everything up.” I tell everybody I meet, “If you know somebody that needs to walk through the VA system, contact me.” And of course, I’m going to take them straight to the PVA office and say, “These are the people that can help you.”
You could use McGuire in Richmond as a model hospital because they were great. We waited for nothing. They had a real grasp of the idea, this person is dying. He doesn’t have time to wait. And I’m sure that that had a lot to do with that PVA office being right there in the hospital.
The PVA office was absolutely top-rated.
If I called for something, if I had to leave a message, they were back to me that day. There was no such thing as waiting for answers, or they didn’t have an answer, they got it to me. So, I tell people a lot about PVA, whether it’s ALS connected or not.
I don’t even know if we’d would’ve ended up where we ended up if it hadn’t been for PVA, but it certainly would’ve been a whole, different experience and a longer experience to get those results.
And looking back, it was really a godsend because he ended up living only 23 months from the time of diagnosis. If you spend half that time trying to get where you’re supposed to be, it’s nothing. And of course, there’s no way to tell that at the time. And that’s the thing with that disease; it affects everybody differently in how they progress and so forth.
I appreciate that you can honor George’s memory by doing this and hope you can get this Justice for ALS Veterans Act passed.
Yes, exactly. This will be his legacy, if it gets passed. And he would be happy about that.
VETERANS CAREER PROGRAM STORIES
Veterans possess valuable skills they can bring to a post-military career, and finding the right fit can be life-changing.
In 2009 Army Capt. Eric Lorence was stationed in Kandahar, where he was training Afghani soldiers. On March 12, 2010, he was on patrol when his truck hit a roadside bomb containing about 300 pounds of explosives. The explosion partially severed his spine.
“I remember waking up and I knew my back was broken. I don’t remember anything after that until I woke up at Walter Reed (Army Medical Hospital).”
With recovery foremost in Eric’s mind, Paralyzed Veterans of America service officers focused on making sure he was enrolled to receive all the Department of Veterans Affairs benefits he was due, such as grants to make his home and automobile accessible, as well as monitoring his care and recovery. But quickly attention turned to getting Eric prepared to return to the workforce.
“I got approached by Jim (Arndt, vocational rehabilitation counselor in Minnesota Operation Veterans Career Program office) when I was still inpatient in hospital. That was probably October of 2010; and although I couldn’t really get a job until I was discharged, I did several interviews with (the U.S.) Fish and Wildlife Service (FWS).”
With Arndt providing the contact with FWS, as well as vocational counseling, including résumé and interview preparation, Eric was ready for interviews and by early 2011 he was working for FWS as an administrative assistant. He began in budget administration but before long had advanced to the Office of Equal Opportunity and then to Human Resources, over a period of just about six months. At that point he had caught the attention of Ecological Services, which interviewed and hired him for a similar position in which he performs administrative support, travel bookings, credit card reconciliation, finalizing memos, and handling Freedom of Information Act requests. He calls himself “a jack of all trades” and says his coworkers depend on him.
Lynn Lewis, an assistant regional director at FWS, said, “We in Ecological Services had the opportunity to work with Eric in previous positions, especially as our region’s Freedom of Information Act coordinator and in his role in Human Resources. Because we knew Eric and had worked with him—and were impressed with his skills and work ethic—when we had an opening for an administrative assistant, we invited him for an interview. We like what we saw (and had seen), so we selected him for the position, which was a promotion for him (from GS5 to GS6).
“They wanted him,” Arndt said. “I’ve gotten really good reports on him and he’s on the way up, and being given extra responsibilities as he moves around.”
“I’m enjoying it a lot,” Eric said. “They are good people, very friendly, understanding and very flexible with my needs. I’m going to stay as long as my body will let me work, basically. Right now I’m in for the long haul.”
And he says of Veterans Career Program, “It’s good; it’s very good. Soldiers getting out of the army—especially with injuries—need a little help. Especially with the economy as it is now, even able-bodied people need help getting jobs, so this kind of help for veterans is great.”
A freak accident changed PVA Minnesota Chapter member Jeff Edwards’ life in an instant. While on vacation with friends in Ixtapa, Mexico, he went swimming in the ocean. Suddenly a huge wave came up that was so powerful it rolled Jeff as it receded, causing him to hit his head on the ocean floor. He was instantly paralyzed.
This left the U.S. Army National Guard veteran unable to return to his job as a West-Central Minnesota Deputy Sheriff and volunteer firefighter.
The loss of his career became a major source of concern for Jeff as he was recovering in the hospital, and he began to panic about his future. “My biggest fear was, ‘What am I going to do? How am I going to support myself and my family,” Jeff recalls.
This is when he was introduced to Jim Arndt, who is a Vocational Rehabilitation Counselor with PVA’s employment program, Veterans Career Program. Jeff and Jim worked together to find positions that would accommodate his life and be engaging. They knew that this would be a process: while Jeff had a lot of great experience he could apply to a new industry, he would also need to develop new skills. PVA is a Partner for Life in this regard, helping veterans find their own unique path to meaningful employment.
Jim first connected Jeff with a company that provides a work from home position that trains veterans with little or no IT experience to succeed in Help Desk positions. Jeff worked at the job for three years until he left for a better opportunity that would allow him to grow.
“Veterans Career Program has done a lot for me. It gives you options,” Jeff says.
However, the recent economic downturn resulted in Jeff’s hours being reduced, and he needed to seek different options. Jeff again reached out to Jim for guidance and they began to explore new opportunities. Jeff had been in communication with Grant County where he formerly worked as a Deputy Sheriff, and they offered him a position as a Dispatcher. Jeff was ready to make this transition to on-site work and is now back working for his county.
Jeff is very grateful for those companies who employ veterans with disabilities and thankful for PVA’s valuable support throughout his career.
One of the unique features of Paralyzed Veterans of America’s Veterans Career Program is our Partner for Life commitment to the veteran community. We do not say goodbye and close a case once a client finds a position, but continue to engage and check in as clients develop new skills and interests or need additional support and accommodations to successfully maintain employment.
Rickey, a U.S. Army veteran and PVA member, first started working with a Veterans Career Program counselor in 2012. Previously, Rickey struggled to maintain employment following his injury. With direct support from the Veterans Career Program, Rickey found a position that provided financial security and interaction with others.
During a recent meeting with Veterans Career Program Vocational Rehabilitation Counselor Allison Borden, Rickey relayed that his employer was scheduling him for double shifts on back-to-back days. Due to his spinal cord injury, Rickey was really struggling to meet the demands of this schedule. Standing for this period of time was exacerbating his disability, and it was becoming unsafe for him to continue to work. However, Rickey both needs to work and very much enjoys interacting with his colleagues and customers.
Allison worked with the Department of Veterans Affairs Medical Center to secure a letter from Rickey’s treating provider. He was then able to discuss these challenges with his employer, who agreed to adjust his work schedule. Rickey is happier both at work and at home as he has more time to rest and recover.