I’m Exceptional – and I Have Research to Thank for It

For National Spinal Cord Injury Awareness Month, NARIC’s director Mark Odum reflects on his own injury and what it means to live beyond expectations.

In 1974, I dove into a backyard swimming pool and my life changed completely. I became one of nearly 10,000 people to experience a spinal cord injury (SCI) that left me with quadriplegia. Basically, I had severe weakness in both arms and legs, as well as torso. After my injury, I spent a year in recovery and rehabilitation. Throughout that year, my goal was to get back to my life, and I did. I went to college. I joined the workforce. I built that life. Today, I am what’s called an “exceptional survivor,” people living more than 45 years with SCI. Studies show that, at the time I was injured, the life expectancy for someone with my type of injury was about 30 to 40 years. Now it’s 45 years later, and I’ve just celebrated my 65^th birthday.

In some ways, I have been a statistical outlier when measured against the general SCI population: At 19, I was younger than the average age at injury (27); I was able to attend college and graduate school after my injury (the average is about 14 years of education); I have been steadily employed without interruption throughout my adult life (about 40% of people with my injury are employed full time); and I have always lived independently (the majority of exceptional survivors live with a partner or caregiver at some point).

Some of this is from hard work, some of it is from just plain good luck. However, from the beginning I’ve benefitted from the practices and policies that have come out of research. I benefitted from excellent medical practices and acute care while at a university hospital for almost two months and from a world-class rehabilitation program in the year afterward.  I continue to benefit from the knowledge and experience of SCI professionals who work in these institutions since then. These teaching hospitals produce some of the latest research and put it into practice with their patients. Today, NIDILRR funds grants for SCI research at more than 40 teaching hospitals and rehabilitation centers, producing a wide variety of applied research and development designed to help persons with disabilities live and work independently. Research and development have opened the doors for persons with SCI to keep in much better shape, navigate their communities, and maintain employment for longer as compared to earlier SCI populations. The knowledge and products from research and development have helped me to live independently as a high functioning person with quadriplegia living on my own for more than 30 years. Even more importantly, they have helped me live longer and healthier. 

Just as important as the rehabilitation research are the laws and policies, from the Americans with Disabilities Act (ADA) to new healthcare laws, that address physical access and the removal of barriers to places, programs, and services. Never before had there been such access to health care. Not only can I easily get to and into my doctor’s office but now with a little help from the use of universal design, the examination table and even the dentist’s chair are just as easy to get in and out.  

Recently, I developed an infection requiring hospitalization. While I was recovering, I also developed several deep pressure injuries. For someone my age and at my injury, pressure injuries are significantly associated with mortality. It has taken me more than a year to come back, but once again, I am lucky to be alive and recovering due to the excellent care I received from the medical and rehabilitation professionals who incorporated latest research evidence into their practices.

I owe a lot to my exceptional survival. I’ve had great healthcare teams who put the latest research into practice to help me maintain my health. I’ve been driven to succeed at college and in the workplace. I’ve been steadily employed, which has been shown to be linked with health and longevity for people with SCI. I’ve worked very hard with very smart and talented people over these 45 years and I am grateful for it every day.

Learn more about some of the research I’ve talked about:

James Krause, PhD, and his team at the Medical University of South Carolina maintain the longest study of people with SCI, collecting more than 45 years of data on exceptional survival.

The Model Spinal Cord Injury System Centers conduct extensive and diverse research and development in 14 centers across the US. Each center conducts individual projects, as well as collaborating with other centers. These centers collect and contribute data to the National SCI Statistical Center, which maintains the world’s largest and longest SCI research database.

Pressure injuries (also called pressure sores and pressure ulcers) can be incredibly dangerous for people with SCI and other chronic conditions that reduce mobility and sensation. Learn more about preventing, identifying, and treating these injuries from the Model Systems Knowledge Translation Center.

Learn even more about some of the SCI-related projects funded by NIDILRR in Spinal Cord Injury – Looking Back and Looking Forward and The SCI Model System Centers – A Brief History.