Breaking the Silence E-Book

Kimberly Russell knows about brain injuries.

Her daughter, now 16, underwent her first brain surgery when she was just 5 days old. Stints at the hospital followed — sometimes for months at a time. Russell is grateful her large family was there to offer support, but they ultimately had to tend to their own lives, while Russell’s remained focused on her daughter’s devastating injury.

“I felt so alone,” she told the Brain Injury Law Center recently. “I had some of the best doctors out there, but none of them ever said, ‘Kim, this is a website, an organization, a resource you can go to to find out more about your daughter’s brain injury.’ That’s what we want to be to people.”

She’s referring to TryMunity, a non-profit online community that brings people together who are affected by traumatic brain injuries (TBIs). Users create profiles and interact with one another much like they do on popular social media platforms like Facebook.

Russell is the executive director of the organization, which is based in McKinney, Texas.

Here are some highlights from our conversation with her:

Q: TryMunity is relatively new. How has the response been so far?

A: We’re about a year old now. When TryMunity was first launched last May, within 30 days and with no advertising over 500 people had signed up online. For the last 4 or 5 months, we’ve really gotten a handle on who we are. Our goal is to be the Susan G. Komen of TBIs. That’s what we’re morphing into.

Q: What is it about social media that makes it a strong tool for brain injury survivors?

A: The TryMunity website’s social media platform is what the first Facebook looked like. It’s built off that technology. When you suffer a serious brain injury, your life goes from literally hundreds of people down to 2 or 3. Social media allows you to reconnect with other people who understand what you’re going through. They’re in the same exact fight. They’re in different stages of it, which is good. They share information. It opens up the world for them.

Q: What are the common causes of TBIs you’re seeing in people who join the community?

A: The military, as you can imagine. I get literally hundreds of phone calls a week from spouses or parents of our veterans who served in Iraq or Afghanistan, and they need help. Another huge demographic for us are retired football players. Then, of course, you have parents whose children have fallen off a bicycle. Also car accident and stroke victims.

Q: How are people finding TryMunity?

A: The biggest thing for us has been word of mouth, which ends up spreading very quickly with TBIs being in the news due to returning veterans and the NFL. It was easy for us to capitalize off the wave they are creating. It’s just a lot of word of mouth, a lot of press releases, meeting other organizations and partnering with them.

Check It Out

If your life has been affected by a TBI, we strongly urge you to check out TryMunity. It is a unique resource that can help not only people living with brain injuries, but also those who love and care about them. Only through compassion, knowledge and understanding can we offer the best futures to those who suffer serious brain injuries. We believe TryMunity offers all of those things, and that’s why we wanted to feature it here at the Brain Injury Law Center.

logo credit: TriMunity

As a pediatrician in suburban Houston, Karla Ramsey has seen many children in need of medical attention. But on May 16, 2012, it was her son Ben who needed help — and urgently.

Ben, 24, had struck the back of an 18-wheeler while traveling 100 miles per hour on his motorcycle. If matters weren’t bad enough, he wasn’t wearing a helmet. He was rushed to the hospital, comatose and minimally responsive. He had suffered a serious brain injury, and high pressure had built up within his skull.

What followed was a recovery that continues today. Karla took to the Internet early on to keep friends and family updated about Ben’s condition.

“It was a way to provide information and support in his early days,” Karla recently told the Brain Injury Law Center. “To my surprise, what happened was it got shared widely.”

But she ended up finding more than just a network of support. She found herself telling a story of recovery more positive than she could have imagined.

Stepping Stones

Karla’s blog is Stepping Stones for Traumatic Brain Injury, where she says she is guided by three things: her faith, her professional training and her sense of humor. Over the course of Ben’s recovery, she has made ample use of all three.

She has shared her concerns about the medication Ben’s doctors have given him and noticed signs other professionals failed to notice. Her religious faith is evident in every post on her blog. And she still find time to smile – like when Ben’s spotty memory blends past, present and future with amusing results.

“We take it in stride,” she said.

Ben’s brain, his mother said, is on the same voyage as Alice when she fell into the rabbit hole. But, in recent months, the dots are connecting better than they ever have before.

“The other day, he remembered a phone number of a friend and called him out of the blue,” Karla said. “It’s really profound what’s happening in his life now.”

Through the blog, Ben has made connections with people from his past as they follow his recovery. An old hockey coach commented on a recent blog post, and Karla let him know that Ben was happy to hear from him. Despite his fleeting memory, Ben, a defenseman who began play hockey when he was 4, remembered his days on the ice well.

‘Leaps and Bounds’

In August 2013, the blog received a special visit and a special post – from Ben himself. He thanked God, his loving family and all the people that had come to the blog to support him.

It was a wonderful surprise for Karla, and just the latest example of how his recovery had been making “leaps and bounds” in recent months.

“I woke up to a paragraph that he posted himself. I didn’t show him how. I didn’t help him do it,” she said.

Ben, she said, has been thrilled to learn that so many people — including some folks he has never met — have kept him in their thoughts and prayers. And Karla was thrilled to see Ben acting so independently.

“In my wildest dreams, I never thought Ben would ever recover enough that he would be able to read it,” she said. “It’s something that encourages him. He can see what a miracle he is.”

photo & banner credit: Stepping Stones for Traumatic Brain Injury blog

The last straw for Audrey Bellah’s brain came on March 8, 2012.

Credit: Audrey Bellah Photography

Concussions on the soccer field in
middle school had left her brain far more fragile than anyone realized. The injury that turned her life upside-down came during a seemingly innocuous game of ultimate Frisbee on the campus of Auburn University, where she was studying radio, television and film.

Audrey accidentally collided with a friend, and her life took a 180-degree turn in a split-second. She awoke hours later in an emergency room.

The entire previous week was missing from her memory. In fact, she later discovered that she couldn’t recall sizable periods of her high school years. There was a migraine building in her head that would stay put for the next year.

Audrey, a straight-A student and one-time soccer standout, had lived an independent life in her own apartment and was making progress toward her dream of one day working for Disney.

“In an instant, it was ripped away,” she recently told the Brain Injury Law Center.

Not One Concussion – 10 Concussions

Audrey’s ordeal is rooted in the lack of awareness surrounding head injuries that still permeates athletic fields around the nation, from NFL stadiums to Little League diamonds. A change has been taking shape in recent years, thanks in large part to the well-publicized plight of pro football players.

Audrey suffered 10 concussions over a seven-year span. The first two came on the soccer field, where Audrey was a standout player who caught the eye of college recruiters. Soccer, she said, was the love of her life. That’s why a pair of concussions didn’t keep her from returning to the field.

“We didn’t think anything of it back then,” Audrey said.

Then came yet another concussion at age 15. This one was different.

 “That was the big one. That was when they told me I was not going to be able to play soccer again,” Audrey recalled.

These concussions left her brain in such a delicate state that a collision five years later during a Frisbee game — something that most of us would just brush off — sent her life into a downward spiral.

A Dark Place

After her 2012 concussion, Audrey lost her independence. She awoke each day with the same migraine that made it difficult for her to fall asleep every night.

Friends began to trickle away. They didn’t want to be with someone who was “disabled.” She knows now they were never true friends in the first place, but that doesn’t ease the emotional pain.

For Audrey, who had been making strides towards her ambitions, life had stopped in its tracks.

“You can see your friends and your family out there moving forward with their lives. You just feel like you’re stuck at a standstill,” she said.

#aftermybraininjury

When we spoke with Audrey, a cheery optimism was evident in her Southern drawl. But, despite the smiles, life is still far from normal for the 22-year-old.

Tweeting as @ConcussedProbs, Audrey alludes to the clouds that hang above her head:

 “I am in a very, very dark place right now…”

“Sometimes I need a big hug and a shoulder to cry on.”

The support she has found on the Internet, she said, is a “relief.” It’s not easy to find people in your daily life to connect with about an injury that is invisible. But, with the right hashtag or the right group online, understanding comes immediately.

Audrey has taken to a longtime passion, photography, to illustrate how her life has changed since her injury. Supplemented with text that tells her story, a slideshow piece called “Life With a Traumatic Brain Injury” began one day when the ticking clock on Auburn University’s bell tower felt all too symbolic for her, she explained.

Back to Auburn

Audrey is about to resume her studies at Auburn University for the first time since that fateful game of Frisbee more than two years ago. She still has headaches, but her ambitions and dreams are returning to the spaces that housed only mental pain.

Audrey knows the hardest times are behind her.

“I think…”

She pauses.

“I know I’m going to be fine.”

photo credit: Audrey Bellah

Ben Richards would have rather lost a limb in Iraq than suffer the wounds he did — the ones no one could see.

Appearing on 60 Minutes, the retired Army major recalled rushing into battle still reeling from a concussion days before, fighting the enemy while unable to see straight. Staying alive in combat is a struggle all its own. Richards didn’t need to be fighting his own brain — he had enough enemies in Iraq.

This became all too common. Richards would suffer several concussions, and they would end his Army career. They came close to ending his life.

‘Suicide Risk High’

After leaving combat, Richards landed a coveted gig teaching at the Army academy at West Point. But he couldn’t do his job. His mind would go blank. Superiors deemed him a “suicide risk” and noted he was “unable to accomplish any aspect of his job.”

His wife told 60 Minutes he spent a lot of time at home behind closed doors, alone. She didn’t know what was wrong with him. They said it was post-traumatic stress disorder. She didn’t know what a traumatic brain injury was.

Richards is not alone — not even close. Roughly 250,000 American men and women have suffered a concussion on the battlefield in the last 11 years, a military official told 60 Minutes. The lasting effects of those injuries are impossible to quantify. But one thing is for sure: the Pentagon has finally started paying attention.

Generals Take Notice

60 Minutes spoke with retired General Pete Chiarelli, who was for a time the Army’s second-in-command. When he took that role in 2008, he knew next to nothing about brain injuries.

“I had no idea that traumatic brain injury and post-traumatic stress were, in fact, the two largest categories of injuries we had,” he told 60 Minutes.

As it turned out, it was thanks to Chiarelli that top military brass began to recognize the immensity of the problem. And it was Chiarelli who issued the order than any soldier who suffers a concussion on the battlefield in Iraq would not return to combat until healed.

While the military has taken notice, much of the legwork addressing the problem has actually come from the private sector. A generous donor funded the National Intrepid Center for Excellence, a state-of-the-art facility at Washington’s Walter Reed Military Medical Center  dedicated to soldier head injuries.

That’s where Ben Richards found out it wasn’t post-traumatic stress disorder causing his problems. He had a brain injury. It was clear as day on a scan of his brain. It was somewhat comforting for him to see that it was, in fact, something real that had been plaguing him for years. He could point to it.

The Future

60 Minutes closed the segment by speaking with Arnold Fisher, the benefactor who helped fund the brain center at Walter Reed. He’s raising money to build nine more across the  country. It will cost $90 million. Information on the effort, as well as how to donate, can be found here.

It’s somewhat shocking to think it’s not the government building these hospitals to care for soldiers — it’s generous American citizens.

And there is still a long way to go. If nine new centers are built, the Defense Department will be able to care for 9,000 new brain injuries a year.

Whether or not the centers are built, the military is expecting that many new brain injuries will occur annually. The question isn’t whether they will occur. It’s whether or not the government will be able to treat those brave men and women.

banner credit: Walter Reed Military Medical Center, logo credit: Fallen Heros Fund

Lindsay Corley is not a football player or a member of the armed forces. Her job as an editor at CNN, while fast-paced, is decidedly low-contact and lacks physical risk.

That is what makes the story of her brain injury, documented recently in a CNN story, particularly compelling: it falls squarely in the “it can happen to anyone” category.

As is sometimes the case, it begins with an injury that goes unnoticed.

‘My Mind Felt Foggy’

An unexpected blizzard hit Kentucky as Corley was driving on Feb. 19, 2012. In whiteout conditions, her car skidded across the highway and struck a guardrail. She felt lucky she was able to step out of her car seemingly uninjured.  

A week later, she began to feel sick to her stomach. Light and sound pierced her head and brought pain. Sleep was difficult. When a friend suggested she had suffered a concussion, Corley repeated an oft-assumed but inaccurate thought: that a concussion only occurs when a person is knocked unconscious.

It got worse. After she was diagnosed with a concussion, Corley was unable to perform basic tasks most of us take for granted. She couldn’t focus on the words other people spoke, and she blurted out things she didn’t mean to say. Her balance and coordination were off. And when she sat down at a computer, the woman who wrote and read for a living found she could no longer make sense of written English.

“… I will never forget that feeling of utter devastation as I gazed into my computer screen,” she wrote in the article. “I was a journalist, a graduate student, and a writer, but I could not read a basic declarative sentence. The words just didn’t make sense to me. My brain wanted to read in the direction up to down instead of left to right.”

Road to Recovery

Corley needed the help of others to perform basic tasks. It was only through the help of friends that she completed her schooling. She couldn’t send an email or even be trusted to remember to turn off the stove after cooking. She went from doing to simply being, as she described it.

She is undergoing neuropsychological testing so doctors can get a more complete picture of her brain and how it is functioning. Overcoming a concussion, she says, is like “waking up from a dream.”

More than a year later, Corley says she’s 85% recovered. Her doctors don’t know how much of that remaining 15% is attainable.

A Cautionary Tale

Corley’s story is a candid look at the assumptions and realities surrounding traumatic brain injuries. It is also a first-hand narrative about what it is like to live every day with a brain injury that affects all aspects of life.

At the Brain Injury Law Center, we know that serious brain injuries can result from what appears to be a minor accident. We want everyone else to know this, too, and that’s why we are sharing this CNN story with you. Share it with others so they know a concussion is not always obvious.

Kevin Pearce was a rising star in the world of extreme snowboarding. He was winning medals and on his way to the Olympics — until his attempt at a daring stunt went wrong and left him in a coma.

That accident, his ensuing recovery and his previous ascent to the top of his sport are the subject of a film that is rapidly gaining the attention of critics and audiences.

“His story is so extreme,” filmmaker Lucy Walker told HBO. “It dramatizes how high the stakes are. And his passion for the sport is incredible given what he’s been through. There’s something very intense about that. He’s just a very charming and humble young man, even when his eyes were looking in different directions and he kept reintroducing himself because he couldn’t remember meeting me.”

The Price of Extreme Sports

Pearce awoke from his coma as a different person, and his traumatic brain injury meant he had to relearn how to walk and talk. Once he overcame those hurdles, he had to decide whether he would take up snowboarding again. While the sport was his passion, doctors explained that even the mildest injury to his head could result in dangerous consequences — even death.

He eventually decided not to take the risk.

From Olympic Dreams to Safety Advocate

The Crash Reel asks whether it is safe to continue pushing the limits of extreme sports in the face of risks of injuries like those Pearce suffered. But it doesn’t have all the answers.

In snowboarding, jumps have continued to get higher, tricks have gotten more complex and helmets are not required. As Pearce left his Olympic dreams behind, he took on a role of advocacy. 

The Crash Reel’s filmmakers began LoveYourBrain, a campaign to spread awareness on traumatic brain injuries, particularly in sports. The Pearce family established The Kevin Pearce Fund to help families affected by traumatic injuries.

The Best Prevention: Brain Injury Education

Through his own journey portrayed in the film, Pearce promotes safety and helmets. The LoveYourBrain website has statistics on traumatic brain injuries and an infographic with instructions on how to react when you hit your head.

Brain injuries have increasingly been in the spotlight — particularly in sports — since researchers have established a connection between repeated, seemingly innocuous injuries to the head and severe brain trauma. A series of former NFL players and their families sued the National Football League, claiming the league withheld information on brain injuries from its players.

photo credit: Forbes, KevinPearce.com, TheCrashReel

It was only in 2012 that Ed Buckley was struck by a speeding taxi as he walked home from a party, injuring his brain and sending him into a coma.

For six months, he lay comatose before consciousness returned. Unable to walk or speak, he faced a long road ahead. He would need to re-learn how to perform things that most of us take for granted.

A newspaper in England, where Buckley lives, recently told his story. Inside a mind he described as “like a mashed potato,” he found solace in music. He could not perform complex tasks — yet when put in front of a piano, he could still play some of his favorite songs like he could before his injury.

“Before I could walk or talk, and while I was still in a wheelchair, I could be pushed up to the piano and I would bang out ‘Let It Be’ by The Beatles. I remembered the chords for that, but I had no other memory,” the 22-year-old told the Daily Mail.

We know that people who suffer traumatic brain injuries like Buckley require lengthy and expensive medical treatments, which may or may not be able to return their lives to normal. But Buckley’s story is a reminder that families dealing with a TBI should be educated on additional methods of treatment — including the musical therapy he credits with returning his life nearly to normal.

Backed by a Growing Body of Research

The idea that music has mental and physical benefits is not a new concept, but it has been studied in closer detail in recent years. Known as rhythmic auditory stimulation, or RAS, many researchers are convinced it can boost the extent and the pace of recovery from a number of conditions — especially those affecting movement and cognition.

One study found the treatment increased the walking speed of people recovering from stroke or a brain injury. RAS was also been shown to help patients with Parkinson’s disease in another study.

The benefits are more than physical. Using brain imaging, Stanford University researchers have concluded that music engages the portions of the brain that control paying attention and updating memory.

You don’t have to tell Ed Buckley that. Music was involved in his therapy from the start — whether it was playing the piano, singing his words when speaking was difficult or using a drum beat to guide the rhythm of his walking.

“I put my fingers on the keys, I just let it go and concentrate on other stuff. That’s what unlocked my brain,” he said.

Know Your Options

While it’s tough to dispute the benefits of musical therapy, it should not be the only form of treatment. People who suffer from TBIs sometimes need a lifetime of medical care and support from loved ones. Unfortunately, not all people who suffer a brain injury are as lucky as Ed Buckley.

Recovery takes an exhausting toll on a family, both emotionally and financially. That’s why we do what we do at the Brain Injury Law Center. For more than 40 years, founder and attorney Stephen Smith has been helping families affected by serious brain injuries get the compensation they deserve when a person or entity bears responsibility for the injury. Compensation doesn’t mean immediate recovery, but it can alleviate a stressful financial burden.

photo credit: Daily Mail UK

Virginia Support Groups and Rehab Centers

Brain Injury Association of Virginia
Founded in 1983 by families and concerned professionals, the Brain Injury Association of Virginia is the only statewide non-profit in Virginia exclusively devoted to serving individuals with brain injury, their families and those that care for and about them. Over 10,000 people find help from BIAV each year.

Greater Shenandoah Valley Brain Injury Support Group
Known by the weighty acronym GSVBISG, this group was organized in 2003 to assist brain injury survivors and caregivers with support and appropriate services.

Woodrow Wilson Rehab Center
The Woodrow Wilson Rehabilitation Center provides people with disabilities comprehensive, individualized service and attention in hopes of achieving personal independence through employment.

VCU Medical Center Rehab Program
The Rehabilitation and Research Center’s Brain Injury Program is a 14-bed unit which treats both adult and adolescent patients with traumatic brain injuries stemming from accidents such as falls, gunshot wounds, assaults or car accidents.

Neuro Restorative – VA Brain Injury Rehab Center
NeuroRestorative Virginia provides care, clinical treatment and behavior management services for adults with brain injury and other neurological challenges.

National Support Groups and Rehab Centers

Brain Injury Association of America
The mission of the Brain Injury Association of America is to advance brain injury prevention, research, treatment and education and to improve the quality of life for all people affected by brain injury. The group seeks to increase access to quality health care and raise public awareness and understanding of brain injuries. The Association has a network of state affiliates, local chapters and support groups.

Centre for Neuro Skills
With locations in California and Texas, the Centre for Neuro Skills has been delivering medical treatment, rehabilitation services and disease management services since 1980.

Brain Injury Network
The Brain Injury Network is the first brain injury survivor-operated, international, nonprofit advocacy organization.

Traumatic Brain Injury Support Group – Facebook
This is a place where you can share your frustration, joy, fears and anything else that pertains to TBIs.