Friday, July 24, 2015

Historic Gathering of 40 and 50-year SCI Survivors

On June 7, 2015, the spinal cord injury (SCI) research team from the Medical University of South Carolina, under the leadership of Dr. James Krause, held a historic celebration in Minneapolis Minnesota, bringing together about study participants and guests, including 10 SCI survivors who are more than 50 years post-injury. The more than 50 people with SCI in attendance averaged 41.8 years post-injury and only a handful were less than 30 years post-injury. The event commemorated and celebrated 40 years of research for this study, initiated by Dr. Nancy Crewe, at the University of Minnesota in 1973. The celebration was held in Nicollet Island Pavilion on the Mississippi River in downtown Minneapolis.

Former President of the National SCI Association, John Schatzlein, received the Career Contributions Award, much to the delight of the attendees, many of whom he had known for nearly 50 years and for whom he has served as a peer mentor. Barbara Armour was presented with the Longevity after Injury Award, having reached 58 years since the onset of her SCI. Other awards were given, including the Community Contributor Award to Margo Imdieke Cross, who has spent countless hours advocating for accessible environments in Minnesota, Staff Lifetime Contributor Award [presented posthumously] and to Sarah Lottes, who had a tireless commitment to SCI and who literally worked with the research team until the day she died in February at age 72. Laurel Cibick accepted a plaque of appreciation on behalf of her mother, Dr. Nancy Crewe, who initiated the study.

The collective accomplishments of the participants are amazing. There have been 2200+ participants since the study’s inception in 1973 and they have collectively worked for over 12,500 years, logging more than 22,000,000 hours of gainful employment.

Several current and former participants were recognized for their outstanding individual accomplishments, including Dr. David Gray, who was one of true pioneers of disability rights and a leader in SCI research, both as an investigator and presidential appointee as Director of the National Institute for Disability and Rehabilitation Research. Dr. Gray also passed away in February, and he had been the first individual to plan on attending the event, saying “I will be there”. He was there in spirit, as were so many others.

The event was a reminder of the magnitude of accomplishments by so many people with SCI. Dr. James Boen wrote the book The World’s Oldest Living Quadriplegic prior to his death for having lived 56 years with SCI, a total eclipsed by two current participants. Larry Kegan was a boyhood friend of Bob Dylan and played on stage with him. Other individuals have written books, including Robert Peters (A Dive Too Deep) and Mike Patrick (I Still Believe in Tomorrow). Darcy Pohland was a television reporter for a local news station.

When the study was initiated in 1973, living 40 years with SCI was viewed as unattainable, yet there were 26 people at the event to have lived more than 40 years with SCI. Those attending were proud of their involvement with research since knowledge gained from their participation has helped us to better understand SCI and the changes that occur as people age with SCI.
If someone wonders what they can do after SCI, they need only to look to what this group of people has done. They have lived and participated in their communities, been in long-term relationships, and worked to better their lives and the lives of others. All has been accomplished despite the harsh health consequences of SCI and aging, and the barriers to marriage and employment that often come with needing financial assistance for the high cost of SCI.

This was a truly inspiring event, even for those of us who have lived for decades with SCI. Our study participants have faced many unique challenges, but despite that, have worked tirelessly to make this world a better place for all of us with SCI. Together, we have worked to facilitate accessible environments, promote employment, and advocate for policies that create opportunities. We look forward to the next generation of people with SCI building upon these accomplishments and with hope for anyone with SCI that they have the opportunity to live long, healthy, and fulfilling lives.

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