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, 17 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 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 member 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 LL/D 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 understandd 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 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 stuff happens because you’re really participating. [Before I took off in the plane the day of my accident], somebody offered me a beer and I said, “No, I can’t have a sip of that beer because Claude is going to let me fly his airplane later today.” It was my birthday, he had an open cockpit airplane, it’s what I loved. If I had just one sip of that beer, I wouldn’t have gotten in that airplane. What would it have been like to take that other road, that other path? You have to understand in life that what you know is only the path you took. You don’t ever know the path that you didn’t take.
The second moment was the next night, sitting in my room in the hospital bed. Yes, there were dark times. Times with tears and when people held my hand. One of my nurses had lost a friend in a small plane crash. And yet I realized that I was still there, still alive. For me, as long as I can see and understand the world and interact with it, I believe it is possible to live fully and to make a difference. That was another one of those “Aha!” moments. I was 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 with them on this journey.
And the third time [laughing] was later that same night, wondering what it would be like to ride a snowboard again, but with this changed body. So I sat there in the dark, sitting on the edge of my bed, visualizing carving a turn on a snowboard, wearing a prosthesis before ever having seen one. That was literally days after the ICU.
Dave: When you start talking about envisioning yourself doing things – you always hear people say when learning a foreign language you’re fluent when you dream in that language. I’ve had the experience that the farther away I get from my amputation, the more I dream that I’m an amputee but without any physical limitations. So I’ll be doing things in my prosthesis that I can’t possibly do in real life. I’ve always taken that as some sort of symbol that I’ve adapted to life with limb loss. At least I rationalize it that way. When you’re asleep, do you dream of yourself as an amputee?
Jeff: It’s funny, Dave [laughing], because I don’t think of myself as a guy that doesn’t have legs. I put on my legs in the morning and I wear them all day long. It has become so integrated, I don’t even think about it as a difference. It’s just who I am. I can’t even tell you how I dream. I don’t dream about prosthetics.
Dave: Which tells you how much help I need!
Jeff: [Laughing] No, no, no, no! Until a year or two ago I’d never even seen a picture of me without my prosthetics on. It was in a hotel room, getting up in the morning, when I saw myself in the mirror for the first time without legs, with just my stumps. And I went, “Oh my God, I don’t have any legs!” [Laughs] Ten years after my accident.
Dave: You went down two very distinct paths with regards to amputation. On the one hand, you had no choice immediately after the accident – you woke up and one of your legs was gone. And then years later, you went through the process of electively deciding to amputate the other one. Which was harder to deal with?
Jeff: The first loss. After the accident was an immediate, fairly radical change in what I could do in the world. From being a man that was doing some pretty wild stuff, like biking up mountains and roller blading, to a man that had one prosthesis and a bad leg. To everyone’s surprise, the prosthesis ended up being the good leg. The leg they “saved” was the leg that caused the greatest pain, the biggest limits. I had to sort of re-evaluate what I could do constantly as I moved through the recovery process. The second decision for amputation I did with hope. It was a bit of a leap of faith, in hopes of a more active life. Within a month of taking the second leg off, I was at or exceeding the level of everything I could ever do with the damaged leg. In retrospect, my only regret is that I didn’t make the decision to have the second amputation earlier or even at the time of the accident.
Dave: I want to ask you a more personal question and you don’t have to answer it if you’re not comfortable. I joke with people that when my wife married me, she was getting a fit, able-bodied guy with a full head of hair. Now she’s married to sort of a –
Jeff: A bald guy! [Laughing]
Dave: A bald guy, a guy who’s getting a little soft, a guy who’s missing body parts. I tell people that I’m going to hold onto her like grim death because I’m dating way above my pay grade. I’ve thought a lot about what I would do, though, if I wasn’t married. How would I deal with telling someone I wanted to date about my situation? You’ve dated women since your accident – what has your experience been?
Jeff: The world doesn’t really understand what it means to live with two prosthetics. They don’t understand either the capabilities or the limits. I was afraid for a long time that I would be rejected for that. The truth is, there are people in the world who would reject me for that. Turns out, those are the wrong people to date. [Laughs] I no longer worry about that because this is who I am.
I’ve seen both sides. Danced with a woman, even had coffee and dinner with her, and she didn’t even know. But after revealing my prosthetics, she rejected me outright. That night I remember laughing out loud how shallow she had turned out to be, and yet also being quite sad because it was also the closure of a door of something that I had hopes for.
The person I’m dating right now I’ve dated for several years. She had actually seen one of my prosthetic ankles the first time we met and I didn’t even know. And so later on I was working up this big internal “How am I going to tell her?” dialogue, and she responded, “Oh, I know that.” It was no big deal for her. And that was helpful because I knew it wasn’t part of the decision for us to date or not to date.
Dave: You wrote a story called The Gift. Why did you think it was so important to tell that story?
Jeff: The Gift is a small story about meeting a young woman who was one of my patients, an amputee, and she had lost her prosthesis. Entering the room to talk with her about her prosthetic needs, she saw me as “The Doctor”, and as we talked it was clear not only that I wasn’t communicating with her, but that she was in a dark place without hope. In her culture – she was an immigrant – being an amputee meant that she was family baggage. We only really connected when I took a chance and raised my pant legs. Seeing the shiny prosthetic ankles, her eyes got really big. “How can you be an amputee? You’re the doctor!” That was the first time I understood how sharing my story as an amputee could change a life, the ability to see what is possible in life, and help move people forward. It’s an important change when you move as an amputee from doing things “in spite of” amputation to understanding there really is a gift inside of the experience. The even larger lesson was that sharing my story that day was not only a gift to my patient, but also a gift to me, because it helped me understand that walking this path had actually enhanced my life in ways I hadn’t seen.
Dave: When you were a resident you developed a program called “Tar Wars” which educates kids about the perils of tobacco use. My question is a serious one: should we assume from the title of the program that you have Luke Skywalker and Yoda figures stacked in your closet, still in the original packaging?
Jeff: [Laughing] Absolutely not! We started the Tar Wars program because it was an image-based program to help kids understand that the tobacco industry is lying to them. The funny thing is, the second year we were running the program, we did go to George Lucas and got permission from him to be able to use the name “Tar Wars”, but we cannot use any of the imagery, or the music, or the spaceships.
Dave: I want to finish where we started, with our conversation in 2003. I told you at that time that if I could have my leg back but I’d lose everything I learned about myself, my friends, my family, that I wouldn’t reclaim my leg. What’s your reaction to that?
Jeff: It’s a specious question that I don’t like. [Dave laughs] I’m going to reject it. I believe it’s our job to walk the path of life on which we find ourselves, and to live with the adventures we discover along the way. I wouldn’t wish an amputation on anyone. But to be able to see what I’ve seen on this journey has been magnificent. I don’t regret any of those experiences. I’d love to have my legs back, yet at the same time, love the lessons I’ve had on this path.