Raising Awareness for TBI: An Interview with Endurance Athlete and Ambulatory Quadriplegic Sean VanGerena
I bet you didn’t know that March is Brain Injury Awareness month. If you didn’t then you aren’t alone. These days we are bombarded with causes. There might as well be a month dedicated to Awareness Month Fatigue. However, Brain Injury Awareness Month is one that needs your attention and there are some great people out there that are making it their life’s work to educate and spread the word about this very important issue. How important is it? To put it into perspective: More than 400,000 Floridians live with a TBI (Traumatic Brain Injury). Brain injuries are the leading cause of death and disability for people 1-44 years. You are 8 times more likely to be diagnosed with a TBI than breast cancer. Over 300,000 veterans have been diagnosed with a TBI since the year 2000. [i]
On March 4th, NeuLife was the proud sponsor of the 2nd annual March 4 TBI. It is led and organized by a remarkable individual named Sean VanGerena. He is an endurance athlete that just so happens to be an ambulatory quadriplegic. After a car accident in November 2008, he was left with a spinal cord injury and a series of strokes that followed. Since then he has been an incredible inspiration for so many people and is a real role model. At this year’s March 4 TBI event, I had the pleasure of walking and talking with him around Lake Eola in downtown Orlando where he agreed to an email interview for our blog at NeuLife. We are very excited to get his story out there and spread awareness in order to grow support for this very worthy cause. I hope you enjoy.
Paul: Hi Sean,
It was an absolute pleasure meeting, walking, and talking with you yesterday at the TBI walk. I hope that we can create and foster a relationship that will be long lasting. Below I have a list of questions that if you can answer for NeuLife’s blog it would be very much appreciated. I want to get your story out there and your organization so that we can expand our community’s awareness. There is a huge need out there and not enough resources. So thank you for your time.
Paul: Tell me about your injury.
Sean: “In November of 2008, I was in a vehicle roll-over and sustained a TBI (Traumatic Brain Injury), SCI (C-6 neck fracture), multiple (Mini Strokes) and some other stuff. “
Paul: How are you affected every day with your injury?
Sean: “I could write several articles about the effects from TBI alone. My challenges are complex and due to the Neurological and Neuromuscular deficits, it’s hard to identify what causes different obstacles for me. TBI affects my executive functioning and processing speed. I sleep a lot and get frustrated easily. My balance, memory and ability to control my muscles are all impaired, as is my ability to listen, speak, communicate and learn.”
Paul: What is the importance of community for you in your rehabilitation?
Sean: “My insurance was depleted quickly and I was unable to receive treatment. I was forced to do much of my rehab and continue to do most of it on my own. Some community organizations helped and some were no help at all. The challenges I’ve faced have encouraged me to help others. No one in this country should be forced into the situation I have been in for the past 6 years.”
Paul: How has your journey affected you in your spiritual life?
Sean: “My own faith and the faith of others has provided strength to help me survive. There has been no time to focus on the glass being empty, just the belief that it can be filled.”
Paul: What brought you to create Lie Down or Stand Up?
Sean: “At first, it was my motto. My family was told that I may not leave the hospital and if I did, I would most likely require 24 hour care. I was constantly told to use a wheel chair and to get used to being in one. I did not get used to it and I did leave the hospital. I still need help with some basic living needs and occasionally I use a wheel chair. But, I am mostly independent and now I race for Team USA. The motto is “Lie Down OR Stand UP! The logo is a yield sign with one person helping another to stand up. This is more about one’s spirit than it is the physical ability. Now, Lie Down Or Stand Up is an organization focused on helping to improve the quality of life for people living with disabilities and with the help of community partners, we can do some great things.”
Paul: What are your plans for the future with Lie Down or Stand Up?
Sean: “We will continue to serve as an advocate for Traumatic Brain Injuries, Spinal Cord Injuries and provide healthy living opportunities for people with physical disabilities. In the next year, we hope to grow our adaptive sports programs to provide opportunities for physical and social engagement. In the next 3 years, our objective is to provide a variety of sport and recreation programs for people living with physical disabilities and serve as a funnel into Paralympic Sports. In addition to our sports programs, we plan to utilize our walk, roll and run “March 4 TBI” as a platform to educate our community about the #1 cause of death and disability for people below the age of 44, Traumatic Brain Injury. And, work towards legislation to protect individuals and their families from losing their lives (homes, children, financial security and independence).”
Paul: Thank you so much for your time and your commitment to making our community a better place.
To follow Sean look him up on his website http://www.liedownorstandup.org/ or follow him on Facebook https://www.facebook.com/pages/Lie-Down-OR-Stand-UP/122884911077065.
[i] The Centers for Disease Control and Prevention, National Center for Injury Prevention and Control, http://www.cdc.gov/TraumaticBrainInjury/index.html
