The accident that changed my life happened nearly 26 years ago—but the effects are life-long.  As a brain injury survivor, I am passionate about promoting awareness and prevention of brain injury. March is Brain Injury Awareness Month, and what better way to “celebrate” than to educate, and hopefully prevent someone else from having to learn the hard way.

There is so much misinformation in regard to brain injury (especially invisible brain injury).  This misinformation often leads to the lack of compassion/belief shown to survivors and/or their families.

Please take a few moments to educate yourself about what life is really like living with brain injury; and then educate someone else by passing this important information on to anyone you know who has a brain.  It costs nothing to promote awareness–but brain injury could cost someone everything.

Prior to my accident, I lived in a world in which I felt that I truly belonged. I lived, not just struggled to exist as I do today. Its amazing how much brain injury changes everything. Simple things don’t exist anymore. Each daily task is a monumental challenge that for the most part, goes unnoticed because for the most part (at least in my case), brain injury is invisible.

Brain injury is widely known as the “silent epidemic.” Caregivers, survivors and their loved ones live a moment by moment based life, and there’s simply no time, energy, or ability to speak out about what’s lacking. I understand this from the survivor point of view…as there have been many occasions when I’m having a particularly bad day that no one notices, because outward appearances (i.e., I “look fine”), belie the silent hell I go through to keep up with a world I feel I no longer belong in.

Caregivers and family members suffer from brain injury too. They often have no outside life; their voices are silenced behind the struggle to survive.  I’ve spoken with other survivor’s who feel as though they are in a vacuum, just trying to keep up with the physical, emotional, and financial struggles caused by brain injury. When I asked survivors and their family members on my tour page recently, “How do you ‘do life’ differently since brain injury? 

One survivor’s mom writes, “I’ve been there with my son…he can t work, he’s on disability. I quit my job to care for him; now we are barely scraping by.” One survivor writes, “I found I had to advocate for myself most at work, at home, and even in the medical arena (with a little-understood condition) at a time when I was least able to cognitively and emotionally. I was ultimately unable to continue working, and we also are hovering around the poverty line for the first time and are on public assistance for food and medical care.”

I know exactly how they feel. I lost my former well-paying career, and my future earning potential in the one moment that changed my life forever. Confusion, exhaustion, and forgetfulness reign supreme in my life these days.  I have no family members left to help me wade through the dizzying world of resources, which are largely inaccessible to me.  Because of this, I’ve missed out on resources, advocacy, and medical care.

“How can that be?” you might ask. You “look fine!”

Just because you can’t see someone’s disability doesn’t mean that they don’t suffer with all the pain and challenges that go with it. Brain injury affects millions of people, their family and caregivers. It disrupts lives, breaks up many marriages and puts a strain on relationships. The fact that many symptoms are behavioral, emotional, or cognitively based makes it difficult for the casual observer to be compassionate, and many times, brain injury patients are wrongly accused of “being lazy, irresponsible, have lack of control, or just plain crazy.”

Some brain injury patients act “socially inappropriate” after their injury; feel a sense of loss over their lives, and feel badly for the behavior that they have trouble controlling. Many are misdiagnosed, and suffer symptoms for years before proper treatment is provided. Others have trouble accessing resources, and get lost in the system, never fully able to take advantage of programs/assistance that is available to them due to the lack of advocacy.

If a person doesn’t have close friends or family members to navigate the very limited resources that are currently available for Traumatic Brain Injury, they miss out on health care, daily support, and even basic care needs.

Traumatic Brain Injury is often invisible to the casual observer; and I’ll say this again, because I think it’s really important—just because a person doesn’t show outward signs of a disability, doesn’t mean that he/she doesn’t suffer from it; and all the challenges that go with it. Education and awareness is key to patients with brain injury to find the compassion, tolerance, and assistance they need.

I, as all survivors, have the very best of intentions to be a blessing to society. We have so many gifts gleaned from our struggle and amazing life lessons that we want so very badly to share with the world, but sometimes, it doesn’t feel as though anyone wants them.  We shout into the wind to the world, trying so hard to “earn” our way through it— but it can’t hear us, and our message gets muffled in the stampede of people, hurrying to getting where they’re going…and our voice is silenced. The hard truth is, nobody cares about brain injury until it happens to them, or someone they love. 

Brain injury truly is the silent epidemic. I will, however, continue to shout from the mountaintops the amazing life lessons I’ve learned through this journey, and how important it is to take care of the only brain you have—-even if no one’s listening.

Please pass this along to everyone you know who has a brain.   Awareness costs nothing, but brain injury could cost someone everything—including their ability to be heard.


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