Historic Gathering of 40- and 50-year SCI Survivors

Contact The Editor

all-of-the-attendees
On June 7, the spinal cord injury research team from the Medical University of South Carolina held a historic celebration of the Longevity After Injury Project in Minneapolis, Minn. The celebration brought together study participants and guests, including 10 SCI survivors who are more than 50 years post-injury. The 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, which was 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.

Don Bania talks with 54-year survivor, Don David Taylor.

Don Bania talks with 54-year survivor, Don David Taylor.

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 included: Community Contributor Award to Margo Imdieke Cross, who has spent countless hours advocating for accessible environments in Minnesota; Staff Lifetime Contributor Award presented posthumously 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 over 2,200 participants since the study’s inception in 1973 and they have collectively worked for over 12,500 years, logging more than 22 million hours of gainful employment.

The post-50-year set.

The post-50-year set.

Several current and former participants were recognized for their outstanding individual accomplishments, including Dr. David Gray, who was one of the 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.

Barb Armour, a 58-year survivor, accepts the Longevity Award from principal investigator, Jim Krause, who is himself 43 years post-injury.

Barb Armour, a 58-year survivor, accepts the Longevity Award from principal investigator, Jim Krause, who is himself 43 years post-injury.

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 after 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).

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 that knowledge gained from their participation has helped improve understanding of SCI and the changes that occur as people age with SCI.

Two 40-plus-year survivors, John Schatzlein and Bruce Gryting, share some memories

Two 40-plus-year survivors, John Schatzlein and Bruce Gryting, share some memories

This was a truly inspiring event, even for those of us who have lived for decades with SCI. The 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.

• The Longevity After Injury Project, Medical University of South Carolina, 843/792-2300; www.longevityafterinjury.com. Also look for the project on Facebook and LinkedIn.

Dr. James Krause is a professor and associate dean for research in the College of Health Professions at the Medical University of South Carolina and serves as director of the Center for Rehabilitation Research with Neurologic Conditions and scientific director of the state of South Carolina Spinal Cord Injury Research Fund. He was paralyzed at the C4 level in a diving accident in 1971 at the age of 16.

By | 2017-01-13T20:41:47+00:00 August 1st, 2015|