My Story
The initial traumatic injury that I suffered as a child was over twenty years ago. While my life since then has been a journey of sorts, it is not that long odyssey which is the focus of this site. The story I am attempting to document here are my trials and tribulations over the last couple of years specifically. In 2011, I reached point in my life where I began to see the circumstances of my situation differently than I had in the past. I begin to recognize the very evident reality that the context around my condition was as significant as the injury itself. Through these realizations, I become rejuvenated to revisit all aspects of my injury. A sort of existential second-wind.
Since my accident and initial recovery, during my time as an outpatient, visits with professionals (orthotisits, physical therapists, orthopedic surgeons) went something like this:
Since my accident and initial recovery, during my time as an outpatient, visits with professionals (orthotisits, physical therapists, orthopedic surgeons) went something like this:
Enter eager-eyed me.
Me: "I tried to do ___________ (fill in new activity: skating, swimming, snowboarding), but I had trouble because __________ (fill in issue: dysfunction, pain, embarrassment). Maybe we could try this _________ (fill in half-baked idea)"
Professional: "Well, as I understand it, because of your unique injury you need to deal with ________ (fill in specific facet of injury), I've never seen a solution like the one you're thinking of. You're lucky to be getting the functionality you have, i'd be careful to try to push for anything further."
Exit dejected me.
Through out these periods of exploration and disappointment something always nagged at me, better solutions always seemed just over the horizon if things were configured differently. However any stray thoughts were quickly brought back down to earth. These were the professionals, they must know all there is to know. Now my intention here is not to paint these professionals in a bad light, in fact they have largely done amazing work to put me back together again. Lesser professionals had proposed cruder solutions such as fusing my knee joint together (permanently straightening my knee) and even amputation. However after the laudable work to stave off complete catastrophe, when I begin pushing the boundaries, the context of my injury and medical orthodoxy have been an upper bound on what was possible. More on this later.
Since I was young, in the back of my mind, I always thought that the tag team of technological progression and time would someday come to my rescue. Some new material, surgical procedure, orthotic technology... something would "fix" me. Over 20 years had past as the juggernaut of progress rolled along, but not in the direction I was facing. No trails were blazed into the frontier I stared at. As years past, the solutions available never really improved, there were virtually no advancements in technique or technology that ever found it's way to me. Even though I had seen tremendous growth in prosthetic technology over the same period of time. An athlete was competing in the the Olympics with 2 below the knee amputations and I still couldn't jog 100 meters.
As I got older, slowly it begin to dawn on me that the current state the solutions really had very little to do with the complexity of my condition, but it had absolutely everything to do with the circumstances around my condition. My injury is unique. At the time of the accident I was told that I was one of three patients in the US to have a "limb salvage" condition with similar characteristics, the other two happening in lawn mower accidents. To further aggravate the situation, rather than live a sedentary life I had chosen to attempt one of heavy physical activity that demanded even more from these solutions and set me further away from the known. The solutions that I was given weren't specifically designed for my injury, they were derived from some tangentially related conditions that were simply being retrofitted for my use.
What never occurred to me before, but is painfully obvious to me now is that, there aren't people with my condition lining up at doctor's offices around the world driving progress. It was only me. However, how else could I expect things to be? With every professional I had ever dealt with I was but one of tens of patients that they were seeing, each with their own problem. The problems that were more common were the ones that were going to get the most attention and funding. In the end, economics would rule the day. Again, not an encouraging realization but at least it was the truth, and more importantly it begin to push my thinking in a different direction. If my problem was in some part one of inattention rather than purely complexity, then it stood to reason that some concerted effort by someone, even someone with no medical background may be able to make some real progress. Slowly I begin to see the flip side to the paradigm. If I were attempting to contribute to an embattled field like oncology I could work all my life and produce nothing that hadn't already been discovered. But maybe, in this relatively unexplored niche that pertains to my condition, with a little effort I could find a some low hanging fruit. What if I dedicated the next period of my life to this effort, could I make some progress that would make a significant impact on the rest of my life? Slowly the impossible seem not only possible, but probable.
And so, the aspirations and projects began...
Since I was young, in the back of my mind, I always thought that the tag team of technological progression and time would someday come to my rescue. Some new material, surgical procedure, orthotic technology... something would "fix" me. Over 20 years had past as the juggernaut of progress rolled along, but not in the direction I was facing. No trails were blazed into the frontier I stared at. As years past, the solutions available never really improved, there were virtually no advancements in technique or technology that ever found it's way to me. Even though I had seen tremendous growth in prosthetic technology over the same period of time. An athlete was competing in the the Olympics with 2 below the knee amputations and I still couldn't jog 100 meters.
As I got older, slowly it begin to dawn on me that the current state the solutions really had very little to do with the complexity of my condition, but it had absolutely everything to do with the circumstances around my condition. My injury is unique. At the time of the accident I was told that I was one of three patients in the US to have a "limb salvage" condition with similar characteristics, the other two happening in lawn mower accidents. To further aggravate the situation, rather than live a sedentary life I had chosen to attempt one of heavy physical activity that demanded even more from these solutions and set me further away from the known. The solutions that I was given weren't specifically designed for my injury, they were derived from some tangentially related conditions that were simply being retrofitted for my use.
What never occurred to me before, but is painfully obvious to me now is that, there aren't people with my condition lining up at doctor's offices around the world driving progress. It was only me. However, how else could I expect things to be? With every professional I had ever dealt with I was but one of tens of patients that they were seeing, each with their own problem. The problems that were more common were the ones that were going to get the most attention and funding. In the end, economics would rule the day. Again, not an encouraging realization but at least it was the truth, and more importantly it begin to push my thinking in a different direction. If my problem was in some part one of inattention rather than purely complexity, then it stood to reason that some concerted effort by someone, even someone with no medical background may be able to make some real progress. Slowly I begin to see the flip side to the paradigm. If I were attempting to contribute to an embattled field like oncology I could work all my life and produce nothing that hadn't already been discovered. But maybe, in this relatively unexplored niche that pertains to my condition, with a little effort I could find a some low hanging fruit. What if I dedicated the next period of my life to this effort, could I make some progress that would make a significant impact on the rest of my life? Slowly the impossible seem not only possible, but probable.
And so, the aspirations and projects began...