Tell Your Story

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Standford Medicine

In September, I spoke at Stanford University’s 2014 Medicine X conference. Why would an amputee be speaking at a medical conference? Even better, why would an amputee be speaking at a medical conference whose tag line is: “The Intersection of Medicine and Emerging Technologies”?

I was on that stage was for the purpose of education. When the average person thinks of emerging medical technologies, they may think of an intuitive insulin pump, a new fitness tracker that monitors your heart rate, or maybe 3D printing. Those things are truly amazing technology, but it means little to me. Emerging technologies, to me, determines the quality of the life I can lead. Technology is my ability to walk, my ability to live my life as normally as possible–emerging technology, to the amputee population, is our lives. We have technology attached to our bodies every day. This is why I was on that stage: because these technologies are life-changing pieces of equipment for the 2 million amputees in the United States. Whether it’s the Michelangelo Hand, the X3, or the C-Leg, the technology we use allows us to live our lives.

My goal, with my speech, was to reach enough people to change the way in which the insurance companies operate, to alter the rules so that prosthetic devices are no longer “durable medical equipment”, filed under the same categories as bed-side commodes and crutches. Our limbs are as important to us as a pacemaker is to a person with an irregular heart rate. Our limbs are as important as a hip replacement, our limbs are our lives. I spread the message that the freedom of mobility is a basic human right. At the end of the speech, I could barely talk. The emotion of my statement had taken over. The last words I uttered on stage were:

Losing a limb does not make me disabled, my only disability comes with the ability to attain the right prosthetic!

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That could have been the end of my Stanford Medicine X experience. Yet, it wasn’t. I was inspired there by the support of the various communities that were represented. It didn’t matter if people were there because of diabetesrheumatoid arthritis, or a rare disease that only a handful of people have experienced, they all joined together to take care of one another. That’s when I had my epiphany: Amputees are just as much “chronic” patients as any other disease process. I know, most people hate the sound of “chronic illness.” But honestly, is your limb growing back? Mine’s not. So with this new perspective, it opened my eyes to how these communities join together. Don’t get me wrong, any group of individuals are going to have infighting, but at the moments of crisis they join together to help one another. I see this almost daily on the  Amputee Coalition of America’s Facebook page.  A person will post who is frightened and scared of what the future will hold because they have lost or soon lose a limb, and the community gathers around to take care of them. The lesson here is that we are more than the sum of our (missing) parts. We have an untapped potential to do great things, we just have to focus. The difficulty comes in the comparison of levels of loss. For example, the bickering that a below-knee amputee has it better than an above-knee amputee, that lower-limb loss is easier than the loss of an upper extremity, and so on. This way of thinking is divisive and has to come to an end. WE HAVE ALL SUFFERED A LOSS.  Whether the cause is congenital, disease, or trauma, we are all missing a part of ourselves.

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The last and most important lesson of my time at Stanford University was that My Story Matters!  I lost my leg after falling 110 feet from a waterfall. The leg was “saved” in the sense that it had a pulse, but what remained was useless. I asked for an amputation and was denied. I fired that physician (yes, you can fire doctors) and found a doctor who saw things as I did. I had my amputation and after a fight, won the prosthetic I needed to return to work as a paramedic. That knee was the Ottobock Genium, it afforded me the movements I needed to function in the world of Emergency Medicine. The problem was, even though I won, how many have lost? This needs to change. Your story can help. One voice can make an impact; a million voices can change the world.

I leave you with this question: What’s your story?

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