From Discourse 16
Whether he likes it or not, Dr. Jeff Cain and I are forever linked by our fanciful (some would say, stunning) cover photo on American Kite Magazine in winter 1990. It was probably our common home state of Colorado that put our two very different kites on that cover, but it was obvious to all who met Jeff that he would rise to great heights in our passion. In fact, shortly after this photo and after another wonderful kite replica (this one of the Langley Flying machine), Jeff began flying “real” airplanes.
Jeff’s love of flying consumed him and just two years after our appearance on American Kite, Jeff had a horrific accident that left him temporarily broken, but completely undeterred from moving on in life. I almost lost it the first time I saw him walk on one new leg and one battered one.
I’m inspired by Jeff’s story, but know him to be a kindred spirit in his love of kites and all things airborne. Through it all, Dr. Jeff might be found flying Oshkosh’s newest homebuilt, or perhaps he’ll be on a secluded beach enjoying the simple pleasure of flying a kite.
Now I’ll let Dave McGill, former Board Chair of the Amputee Coalition, pick up Jeff’s story.
TALKING WITH JEFF CAIN BY DAVE MCGILL
For this week’s post I spoke with Jeff Cain. Jeff and I joined the Amputee Coalition of America Board of Directors at the same time (2003) and we shared (and continue to share) an interest in legislative and advocacy issues affecting amputees. So, of course, this interview contains very little discussion of either of those topics, since Jeff is asked to speak about them endlessly,
thereby depriving the world of his insightful thoughts about a variety of other issues.
When I first met Jeff in 2001, he was in a wheelchair, having just undergone the elective amputation of his second leg below the knee. He had lost his other leg (also a BK amputation) 6 years earlier when the single-engine plane he was flying crashed. Despite the ample flow of painkillers flowing through his bloodstream when we first met, Jeff was polite and remarkably cogent.
Jeff led Colorado’s effort to become the first state to pass a prosthetic parity law, helping ensure that people with limb loss/difference have access to appropriate prosthetic technologies. His experiences and skills have made him one of the leading figures in the LL/D advocacy community, and with his assistance, 22 states now have passed prosthetic parity laws. In addition, he has been instrumental in introducing a Federal prosthetic parity bill that is winding its way through the corridors of our nation’s capitol.
An avid outdoorsman before his accident, Jeff maintains an unnervingly high activity level: cycling, swimming, ski-biking (a sport he introduced to the US adaptive community), snowboarding, motorcycling, and yes, piloting single-engine aircraft once again. During the recent ACA annual conference in California, Jeff glided around the parking lot on a skateboard using a staff seemingly left over from the Lord of the Rings trilogy to propel himself like a stand- up paddle surfer. Meanwhile, just in the writing of that list I put on another 2 pounds.
Jeff is a family physician and recent president of the American Academy of Family Physicians Board of Directors. During his medical residency he co-created the “Tar Wars” tobacco-free education program for 5th grade students, now one of the AAFP’s best known programs, having reached all 50 states and 14 other countries. He is currently the Chief of Family Medicine at the Children’s Hospital in Denver, and practices Family Medicine at the AF Williams Family Medical Center, also in Denver.
He does lots of other things that, if I add them to this introduction, will rival the post below in length, so I’m going to stop after making one more comment: Jeff is one of the most thoughtful, articulate individuals in the Limb Loss/Disability world today. If you want an interesting and thought-provoking answer to almost any question, you’d be hard pressed to find someone better than Jeff to provide it. Now that I’ve built him up to almost epic proportions, let’s see if he delivers the goods in the following interview.
DAVE: In 2003, you and I had a discussion during which you said that the power of the limb loss/difference community, the power of all these individuals, is their story. Why do you think that’s the case and how did you come to that conclusion?
JEFF: I think that as human beings, as creatures in this universe, we communicate in story form. When people speak about statistics or look at graphs it doesn’t really help them relate to each other or to the larger community. At the time you and I spoke, we were talking about the power of story to be able to help change things like insurance laws or the perception of amputees in our country. We’re not going to pass legislation by just talking about the statistics of how many amputees are out there. We’re only going to make a difference when people hear the human nature of the story. Stories are what really connect us and helps us to be able to communicate with legislators to make and pass laws. Stories also help us grow both as individuals and with each other. Without having seen or touched another life that has been through an amputation, we all feel like we’re alone. Stories help us connect with others who are faced with similar challenges, understand the personal lessons from amputation, and allow us to move forward with our own lives.
DAVE: So you’re really talking about two different things. There’s a strategic element to the stories on the legislative side. And then there’s a therapeutic value on the other side. Now, you were the individual responsible for spearheading legislation in Colorado and nationally that is helping ensure that amputees would have access to prosthetics. Colorado was the first state to do that. As you were going through it, were you conscious that you might be doing it for some sort of therapeutic reason?
JEFF: Was I thinking about this as part of my own therapy? No. I was doing it because I thought I had the ability to help improve lives of amputees across the country. But the irony is that the stories I heard around the kitchen tables of our legislation team had a profound impact on me personally. Up until that point, I had not had much contact with other amputees, even minimal contact. Funny, it was the drive to be able to work through the legislative challenge that brought me to their stories, but also brought me better understanding of my own amputation and ultimately even led me to the Amputee Coalition of America.
DAVE: When did you become aware that telling the story was as much about the therapeutic value of “doing something for me” as opposed to doing something for all amputees?
JEFF: Um, I’m probably not that bright, Dave. [Laughing].
DAVE: So in other words, about 5 minutes ago?
JEFF: [Laughing] No, no, no. I think there was a small glimmer of it as we took the prosthetic parity law nationally and began to understand that there was an additional individual internal value. That by working through my own challenge, I was helping others and at the same time doing my own work. And then I really got a bigger shot of it at the ACA meetings as you and I started working together with the ACA board on larger amputee issues, being able to see how people really grew individually when they were were working on helping others.
DAVE: How did your medical training help you as you were adjusting to your life with limb loss?
JEFF: Sometimes medical training helps you. Laying on the field at my accident, I literally had to manage my own airway. Being a doctor can help save your own life. But there is another side of being a physician patient. Sometimes being a doctor can get in the way. When you’re in the ICU, it doesn’t help to try and set your own ventilator settings.
DAVE: [Laughing] And just out of curiosity, when you do that what tends to happen?
JEFF: What tends to happen is people roll their eyes big time. It really rocks your world when one week you are rounding in the ICU as the captain of the ship, chatting up the nurse at the front desk. And only days later that same nurse has to lift you up to perform personal hygiene. It rocks you to the core. Being in your own hospital and having your doctor friends taking care of you was really challenging. It takes you out of everything you know. I lost my footing, both literally and metaphorically.
DAVE: I’ m interested in comparing experiences now. I can remember the exact moment when I asked my wife in the hospital, “Why did I do what I did?” Why did I put myself in a position where I could get hurt? I remember my wife staring at me and giving me a look like, “I don’t know, why did you walk into the middle of that road?” And I said to myself, “Oh my goodness, this is going to be a very bad place to go.” And I made a very conscious decision only a few days after my accident that I was going to live my life in rehabilitation increments. “What do I have to do to reclaim my life?” And I never really looked back. Was there one defining moment for you after your accident where you made a similar decision?
JEFF: Not the same as you, Dave, but there are a couple of moments that stick out.
One was getting out of the ICU, sitting with my flight instructor reviewing the accident and talking about the twists and turns of life. I believe that life is a risk sport and that if you’re living it fully, sometimes bad stuff happens because you’re really participating. What would it have been like to take another road, another path? In life what you know is only the path you took. You don’t ever know the path that you didn’t take. I was just so glad to be alive. I had to thank the people with me and tell them that I loved them, and was glad to be there to continue with them on this journey…
You can read the full interview at:
Or you can listen to the story on CNN’s Soundwaves: