Forty years ago I was a student at the University of California in Berkeley. I received a letter from Nancy Crewe, PhD at the University of Minnesota asking me if I would be interested in being interviewed for a longitudinal study she was starting on life after spinal cord injury (SCI)?
She asked me to call her with my response and if I was interested, she would come along with one of her students and interview me in my dorm room. I called her and agreed to meet with the two of them in our study room down the hall from my room. As I remember, we talked for several hours and she had many questions regarding my life to that point, expectations, and an inordinate amount of form questions.
Shortly after our discussion, I moved back to Minneapolis to a job I had created selling modified vans for a company that had sold me my first van. I was also supposed to meet people who had recently suffered spinal cord injuries and needed equipment like wheelchairs, shower chairs and various other equipment prescribed by their doctors as they left rehabilitation.
I ran into Dr. Crewe one day in the old Rehab 7 Unit at the University. We chatted for a while when she told me she was happy to know I was now at the University and if I wanted to continue to be a part of her study?
Obviously, I did and did my first few interviews in their offices at the hospital. It was during that time I met Jim Krause who was one of Nancy's PhD candidates. Several years later Nancy moved to Michigan State University but continued to remain an integral part of the program. Jim remained at the U and once he received his PhD moved to Shepherd Center in Atlanta. After spending some time there he moved to the current location at the Medical University of South Carolina. That is where the program is run out of today and Jim is the director working with a fine staff of people who were instrumental in putting on our event this last weekend.
Saturday I took part in a small roundtable discussion group with eighteen people, many of them I have known from being long time Minnesota Gopher basketball fans. It was fun seeing people outside of Williams Arena.
At one point, Jim asked if there were any new topics we would like to address as the study moves on and in to different areas.
I mentioned studying Eastern medicine and how alternative, preventative medicine is working its way into the Western model as East meets West. In the twelve years I have been receiving acupuncture, healing touch, guided imagery, herbal therapy, hypnosis and others the traditional Western medical community has begun to integrate Eastern ideas. I believe it is a good thing as Western philosophy begins to practice a more holistic approach as they do in the East.
The second day was a celebration of forty years since the program has started. Jim told me of the one hundred initial participants, fifty-five are still involved! I believe those are extraordinary numbers when we were all told our life expectancies were extremely short. "9-3-71" is often the answer I give when someone asks me my date of onset. In my case, in the fall of 1971 the doctors asked my family to come down to the waiting room so they could speak with them. One doctor told my family my life expectancy was nine years! I guess I beat those numbers! Others had even more horror stories then I did.
I'm attaching a photograph of the people at the event at the Nicolet Island Pavilion with the forty-year survivors and the fifty plus behind us:
As always, click on the image to enlarge it:
That is Jim and me in the middle of the group. I had to wear my Minnesota shirt since I graduated from there in 1980. It still seems hard to believe it has been thirty-five years since I graduated from college!
The next picture has all of the people who were at the event as more and more people are being added to their studies:
Again, click on the image to enlarge it:
Between an ongoing slide show behind the very accessible stage, slides were shown of statistics from the study, several slides of participants (one of mine included), speeches were given, awards were given, I had a great piece of Minnesota Walleye and much reminiscing, meeting new people, mentioning people who have left us, and I believe everyone would tell you they had an enjoyable afternoon and evening.
As I understand it, this blog post will be in some way linked on the MUSC website so it will be available to everyone in attendance.
I would like to share one particularly interesting fact I got out of all of the storytelling that took place over the two days. The longest person I knew before this weekend who has survived severe spinal cord injury was fifty-two years. I found out Saturday the longest anyone knows of right now who has survived a spinal cord injury is fifty-eight years! That gives me a new goal to shoot for! Who knows what the next ten years will bring to survivors of spinal cord injury?
As always, I look forward to your comments.
Later, and I do mean later,