Why I'm Hitting The Road with Brain Injury Riding Shotgun

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Each year, approximately 1.7 million Americans will experience a traumatic brain injury. It is estimated that there are approximately 5.3 Americans currently living with brain injury. I'm one of them.

My life was irrevocably changed in an instant on July 2, 1998. I was a professional athlete, dreaming of a spot on the United States Equestrian Team, when the car I was driving was rear-ended by a tractor-trailer and I suffered a traumatic brain injury.

My dream, and life as I'd known it were over. I was forced to re-learn a new way of living. Reading, writing, walking and talking took concerted effort and lots of retraining. I lost the career I'd worked a lifetime to achieve; as well as my future earning power. After the tragic loss of the rest of family 8 years later, I slipped (and remained) below the poverty-level for the first time in my life. My daughter and I remained homeless for four and half years.

Fortunately, I met a wonderful social worker who helped me obtain the advocacy and resources I'd lacked, and was able to scratch and claw my way back in order to create a new life for my little girl and myself. But still, I struggled…because my brain doesn't always want to cooperate with what I have in mind; and being able to function in order to pay bills just doesn't register with it.

While so many people are affected by brain injury, there is very little actual understanding about how many life challenges survivors, and their family, go through. Because for many (like me), the disability is invisible and so compassion and understanding are often hard to come by.

Even though I look completely "normal," I struggle intensely with the things I once accomplished with ease, and am unable to support myself through the means that I did prior to my injury. The world moves way too fast for me these days, and no longer accommodates my slower-processing brain.

When I moved to my current state of Tennessee, I knew no one and needed to secure some type of supplemental income in order to put a roof over our heads. I tried to work with vocational rehab to find a brain injury friendly job, but they didn’t have advocates to help with the HUGE book of information/forms that they sent for me to fill out. It was a multistage process to enroll, and my brain has major issues with multi-step processes. I tried for months to get help walking me through the process, but was told time and time again, “sorry, we don’t do that.” So finding disability-accommodating work was out of the question.

Desperate not to fall back into the homelessness that was constantly threatening to overtake us again, I fell back on my (before brain injury) skills as a canine behaviorist, and started to try to train dogs. It’s something that I have a passion for, something that I’m very good at; but it’s also something that I knew I wouldn’t be able to do for very long, as my brain doesn’t function well on a day to day schedule. I knew it was going to be a matter of time before my brain gave up and gave in; but I also knew I needed to survive.

The inevitable happened. My brain had reached its maximum capacity, and I was sick and tired of remaining sick and tired. My lease was ending, and rent was about to go up; but my brain couldn't handle the added strain of trying to make ends meet. My brain revolts when provoked by over-exertion and cognitive slides ensue. I realized that killing myself to barely get by, and worrying that I was one cognitive slide away from homelessness was not how I wanted to continue to live. I knew I was pushing myself too hard to do something that my brain just couldn’t do; but what choice did I have? I am the only adult in our little family, and I need to be able to provide—-sick or not. What I needed was disability-accommodating income.

I realized that I needed a change, and sat down to ask the Lord for help. A few days later, I was standing at the kitchen counter preparing breakfast when I heard a clear voice in my head say, “It’s time to hit the road again!” All at once, I had a clear vision of taking The Butterfly Express out on this journey of a lifetime! For the first few days, I tried to put what I considered a “silly” idea aside; but it wouldn’t let me go. I couldn’t stop thinking about it, and realized that was because I was being led to do it. As I’ve learned through my struggles up to this point, if I allow God to direct my paths, things turn out a whole lot better than when I try to go it alone! So I said, “Okay, Lord! Let’s go!”

Once I began doing the math, going out on the road actually seemed like a viable plan. Closer introspection into my current situation made me realize that my life had become acutely unmanageable; living for 13 exhausting years in "survival mode," trying to keep up in a world that no longer accommodates me. In addition, I knew I'd be able to help others if I took on the added mission of an awareness campaign. For so long, I've felt useless; unable to provide the very ministry and care that I'd been shown through my struggles. I yearned deeply to be that person for someone else—but you can't be that person when you're in survival mode.

I’m pretty sure God didn’t save me in the accident, give me this amazing story to tell…only to have me run like a hamster on a wheel, needing desperately to stop; but fearing financial disaster and homelessness if I do. The idea for this tour stopped me in my tracks and made me realize how desperate I’d become. Desperate to make ends meet, desperate when I started to feel the effects of my brain injury, desperate to try to find a way to get ahead to provide for our future. Desperate to become a contributing member of my community and my church. And yet, desperate as I was, I was still only barely getting by. Now I know that God is not a God of barely getting by…He is a God of grace and abundance, and I knew that if He was by my side, He would give me the words needed to return to my writing, and lead me to the disability-accommodating income I need to survive; and stay well doing it!

Being out on the road in an RV will greatly reduce my financial obligations (and stress level!), and allow me to move at my brain's pace. It will give me the Mommy & me time with my daughter that I deeply desire and am missing in my haste to keep up with financial obligations. Home/road schooling will educate her in ways traditional school never could and will give me the opportunity to take her to places and give her experiences that I'd never be able to do otherwise. Taking this hiatus from the fast-paced world will give me the precious time to write in order to finish up book projects which are in various stages of completion.

Prior to becoming homeless, I shared my story as a motivational speaker; but was forced to give it up due to my circumstances. Once I moved to a new state, I went directly into survival mode, and didn’t have the time/energy/resources to resurrect my speaking. God has led me down the road of this incredible journey, and provided me with the grace to glean important lessons from it. I absolutely love sharing the story he's given me to tell, and feel that I have something tangible, and worthwhile to share with the world.

And so, I'm Hitting The Road with Brain Injury Riding Shotgun because…

~I yearn to use my story to help others by promoting awareness/prevention of brain injury; instilling new habits which may prevent injury. I want to encourage people to use their challenges in life as stepping stones to a better future.

~I want to be a voice of those who can’t speak out for themselves. My story is not unique in the world of brain injury. In an instant, millions of lives are forever changed, careers lost, families torn apart by constant struggle, emotional overload, and financial ruin. That this goes on silently in 5.3 million homes in America is unacceptable. These stories need to be told. Brain injury needs to be given a voice. I want to be that voice for the countless survivors and their families who have been silenced by the daily struggle with brain injury.

~I want to let law and decision-makers know how utterly frustrating and extremely difficult can be for someone who has a brain injury to seek/gain resources for their injury, and how easy it is to slip through the cracks because of lack of support and/or resources.

~I want to make brain injury prevention something that is on the hearts and mind of everyone…whether they be, a parent, athlete, child, teenager, or passenger in a car. I want to share my former life as an athlete—and my current one as a brain injury survivor, so that people understand that their brain is the only one they have, and it’s critical that they take precautions to protect it.

~On a personal level, I want to give my little girl a chance at a good future, providing her with all the tools she needs to be all that God created her to be. I want to honor God in all I do—giving praise despite my storm, in appreciation for my second chance at life. I am embracing this blessed opportunity to go out there to create disability-accommodating work—earning the financial stability I crave, but has eluded me since July 2, 1998.

~I have BIG dreams for my life, using the lessons gleaned from my struggles. I've been led to create a multifunction canine center—-rescuing dogs and retraining them for people with disabilities. I want to use the center to provide our motivational education programs to benefit the community. I want to create an equine-assisted activity program for other people with brain injury. I want to continue to speak/write/educate about brain injury and how God's grace covered me through it all—-and help others come out of the darkness of disability that I've been in for so long.

But in order to do all this, I need to climb out of the trenches of survival mode to a place where my voice can be heard. I’m going out on the road so my voice can be heard; and other voices like mine will follow on the path paved with awareness—until brain injury is silent no more.

My life was forever changed on July 2nd, 1998. I now have a traumatic brain injury—but brain injury doesn't have to have me. I've worked hard to restore my voice, and I yearn and choose to use it! I started this blog because I want to use my testimony and my struggles with brain injury to make a difference; in my own life, my daughter's life, my audiences' lives; and my beloved butterflies' lives.

The world is too busy to hear the silent cries of those 5.3 Americans struggling with brain injury every day. Survivors struggle to learn who they are while bumping into the walls of resources that are largely inaccessible. Loved ones struggle to make peace and grieve the loss of who their survivor once was, coming to terms that the "new normal" isn't what they signed up for at all. Moms and/or dads quit their jobs to be caretakers for their child with brain injury. They're about to lose the house and have gone through all their savings. Friends have stopped calling, and all the resources have dried up. They cry out in desperation, but the world doesn't hear.

Maybe, just maybe; if the world sees an RV emblazoned with butterflies flying down the highway, with a single mom at the helm and Brain Injury riding Shotgun; maybe then, it will start to listen.



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