Ryan Rosenow: "You do not have to resign yourself to the decisions others have made for you"

I have been missing my right hand since birth, but in many ways the most formative aspect of my journey with that limb difference began later, at the age of ten months, when a team of largely experimental reconstructive surgeons performed the first in what would become a fifteen-year campaign of surgeries with the aim of one day constructing a functional “helper hand”. This first operation was very complex, involving the transference of toe bones from my right foot onto the end of my right arm, where they were covered in grafted skin and intended to serve as fingers. With the construction of these fingers, the foundation was irreversibly laid for a patchwork hand that would slowly take shape over the course of more than thirty surgeries; many of which would be equally or more complex than the first.

The decision to start down this costly and difficult medical road was not one that my parents took lightly. In fact I know that they agonized for months over the different options that were available to them at that time. I want to be clear at the outset that I don’t harbor any resentment towards them for the choice they made. They were doing their genuine best to act in my interest, and given the information they were operating under, I can’t imagine they had any realistic warning of the challenges and complications ahead. It was 1990, and myoelectric technology was much less advanced and seemingly less promising than it has proven to be in the years since. The surgeons they consulted with presented a very optimistic prognosis along the surgical route, and claimed that pursuing a prosthetic solution would result in an inferior final outcome — a fairly common opinion in the reconstructive surgery community. It was also stressed that time was a critical factor, and that the likelihood of a good end result depended on their starting my surgeries before my first birthday. Feeling the pressure of that timeline, and convinced by the claims of the surgeons, my parents made that difficult decision on my behalf, as I was obviously too young to offer an opinion of my own. What we learned together over the years that followed was that the optimism initially expressed by the doctors had been greatly misleading.

Averaging around two surgeries a year throughout my entire childhood, I watched the evolution of the hand that was being made for me, as well as a corresponding evolution taking place in the numerous donor sites elsewhere on my body. As bones, tendons, and skin were borrowed from feet, legs, and hips, I developed medical complications in those sites, ranging from interrupted toe growth, to frequent foot pain, to large areas of scar buildup and total sensation loss. All the while I was becoming increasingly self conscious about the appearance of this construction project at the end of my arm, as well as increasingly disappointed in the total lack of function that I was gaining along the way. The toe-fingers were barely mobile and possessed no grip strength, and I found that in many cases, tasks were actually more difficult with this non-functioning tissue in my way than they would have been with the un-enhanced limb I had been born with. As I got older, an increasing percentage of my surgeries was focused on maintenance and repair of work done previously, and less on trying to cover new ground. I became deeply depressed and felt a sense of shame about my hand, which I kept permanently hidden by wearing only long-sleeves, pulled down low to cover the scarring and transplanted digits from sight. I would watch my friends and my older brother perform athletic tasks that I found it impossible to replicate, and the feeling of inferiority that I felt in those moments turned into an abiding resentment towards my surgeons and their claims which it had become glaringly clear would never be completely fulfilled.

Even with the sadness I felt over my physical limitations, and the body shame I felt over the appearance of my hand, which I viewed with deeply self-critical embarrassment, I think the most distressing part of the whole experience was my feeling of having no autonomy in the process. The entire treatment plan was something that had been set in motion without input from me, and I felt trapped in it. I was too far along to feel like I could stop or turn back. The remote possibility of there being some kind of light at the end of the tunnel kept me faintly hopeful and spurred me to continue going through the long hospital stays and cumulative medical challenges.

The real low point of the journey came when I was sixteen, and my surgical team abruptly informed me and my parents that we had effectively reached the end of the road. No more optimism or promises of improvements to come; just a stark reality check that this would forever be as good as it gets. They had no more surgeries planned, and during that consultation our fifteen-year project came to an anticlimactic close. That was the height of my feelings of helplessness. The incentive to pursue a faint hope of an eventual positive outcome was suddenly taken from me, and I found myself weighing the physical, emotional, and financial cost of the many surgeries against the value of their result. There was a massive inequity there, and I felt cheated and deceived, but worst of all I felt absolutely powerless. I was stuck with a medical outcome I hadn’t chosen, and saw no way of improving my situation for myself.

I spent the following seven years stuck in that low point, before finally discovering the courage, at age twenty-three, to strike out in search of better solutions for myself. I started researching options online, and saw YouTube videos of a mind-blowing myoelectric hand called the iLimb. The functionality of this hand was like nothing I had ever seen, and it opened my eyes to how far technology had progressed in my lifetime. I reached out to clinicians in my area and found a prosthetist who quickly became a good friend and fierce advocate for my success. I expressed to him my interest in the iLimb, and he helped arrange for representatives from Össur to come out to his practice and help me evaluate my medical candidacy for the device. I discovered the same friendship and advocacy in all the team members at Össur as we worked together to create a plan. I decided that in order to get the best fit and the most function out of the iLimb, I wanted to have my helper hand amputated at the wrist, and my prosthetist helped me find a surgeon to perform that amputation. Within months of my initial decision to take control of my situation, I was recovering from my final surgery and being fitted with the amazing device I had discovered through YouTube. The extent of the positive effect this process had on my entire outlook would be impossible to overstate. The years of emotional weight that had been such a persistent burden since early childhood were suddenly lifted. Once fitted with my iLimb I found myself, for the first time in my life, able to overcome physical challenges that I had all but given up on ever conquering. I found myself completely unashamed and unembarrassed by myself. But above all else, I found myself reaping the benefits of path that I had chosen. That autonomy was everything. The helplessness that had characterized my relationship with my limb difference was replaced by a feeling of agency and ownership. I discovered in that ownership the ability to stop resenting my missing hand, and to view it instead as an important and valuable aspect of what makes me who I am.

To anyone reading this who may be dealing with a recent limb loss, or any other scenario of limb difference, I would like to offer you the hope and insight of what I consider the most life-changing realization of my whole journey: you do not have to resign yourself to the decisions others have made for you. You absolutely have the right and the power to take ownership of your own path. It’s never too late to question or outright reject the choices that have been imposed on you; whether about the limits of your potential, or the roles you are able to play in society, or the specifics of the solutions and treatment plans you wish to pursue. There are amazing and supportive communities out there, waiting for you to discover them, and the people in those communities are more than willing to come alongside you and help you realize the choices you make for yourself. For me that meant being fit with an iLimb; for you it might mean something else.

The important thing is that you are the only one with any right to decide that, and it’s never too late for you to make that choice, no matter how many decisions have already been made on your behalf up to this point.