By: Julie Markarian
by Vasu Sojitra
This post is a continuation of the previous post "Balancing Act Part I". Both of these have been written by Julie Markarian for her class "Cross Cultural Perspectives on Grief." Julie is one amazing person that has influence my career path greatly by helping me follow my passion is life. It is incredible to see what she is doing now as she is on the path to becoming a Child Life Specialist. To put that is context, she is working with kids and families in hospitals by helping ease their fears and helping them cope with the hospital setting through education, play, support, and comfort. That seems like one hell of a emotional roller coast, but I know you'll be up for it Jules! Thank you for helping spread joy in dark times. Best of luck with all your future ambitions Julie. Hope to cross tracks one day.
The dictionary definitions of “disability” and “loss” have strikingly similarities. A loss is defined as a “failure to keep or to continue to have something; the experience of having something taken from you or destroyed (http://www.merriam-webster.com/dictionary/loss),” while a disability is defined as a “condition (such as an illness or an injury) that damages or limits a person's physical or mental abilities; the condition of being unable to do things in the normal way; a disqualification, restriction, or disadvantage” (http://www.merriam-webster.com/dictionary/disability). Both meanings refer to a way of existing that oozes with permanent limitations (“failure to continue” and “disqualification” strike me as particularly harsh.) The word resilient (defined as: “the ability to become strong, healthy, or successful again after something bad happens; the ability of something to return to its original shape after it has been pulled, stretched, pressed, bent, etc.,”) hardly seems to fit into this category of permanent constraints. (http://www.merriam-webster.com/dictionary/resilience). Resiliency, unlike loss and disability, actually validates the reality that recovering after an injury is a very real ability. While it may seem out of place, it is actually quite vital to the survival of people experiencing loss and disabilities. The commonalities that I have found through my research of loss, disability, and through my interview with Vasu, is this interlinking thread of resilience; it is embedded in the stories of individuals who overcome restrictions and fight for a life that is just as full and meaningful as everyone else’s.
A loss is defined as a "failure to keep or to continue to have something; the experience of having something taken from you or destroyed"
While loss due to a disability can mean that someone may not return to being “able-bodied” in their more traditional sense, it by no means serves as the final word on that person’s life, or their personal resilience in the face of that loss. When people can learn to adapt and move forward, resiliency thrives. In fact, studies have been done showing that “resilience in the face of loss is real, prevalent, and enduring” (Bonanno, pg. 195). George Bonanno’s “The Other Side of Sadness” explores the theory that people are much more resilient in the face of a loss than our society may give them credit for. Bonanno suggests that people’s ability to channel their flexibility allows them to maintain such resilience:
“Bereaved people who evidence a…kind of emotional flexibility relatively soon after their losses cope more effectively with the pain of grief. If they can evoke…flexibility, they are more likely to recover from grief. Flexibility is adaptable because different kinds of adversity create different kinds of demands. The better able we are to adapt ourselves to those demands, the more likely we are to survive” (Bonanno, pg. 78).
Survival, as Bonanno stresses, depends on our ability to adapt to adversity. When a person is faced with the loss of ability (or a culture/home due to a move), adaptability and flexibility can help smooth over this transition, and better prepare the individual for future changes. This was clearly true with Vasu, whose own recovery with unexpected events is apparent in his descriptions of the losses he has endured. Growing up as the “different” kid in class helped Vasu empathize with others who stand out from the crowd, leading him to his eventual involvement with adaptive athletes. Moving back and forth between countries and cultures instilled the need to adjust quickly and adapt to changes as they happened, with little time to lament over things. This skill has also served him well in his personal and professional endeavors.
Once people realize that they can survive their loss, they can begin to come to terms with and even embrace their new way of living. Viktor Frankl was a psychiatrist who wrote the book “Man’s Search for Meaning” following his own experience in a Nazi concentration camp. He lost his entire family and life as he knew it during that time, but survived the camp and all of its brutality with the goal of writing a book afterwards, hoping to help other people learn how to make meaning from their own losses:
“We must never forget that we may also find meaning in life even when confronted with…a fate that cannot be changed. For what then matters is to bear witness to the uniquely human potential at its best, which is to transform a personal tragedy into a triumph, to turn one’s predicament into a human achievement. When we are no longer able to change a situation…we are challenged to change ourselves” (Frankl, pg. 135).
Frankl insists that suffering is an unavoidable reality that we all face during our lives, but reiterates that suffering does not need to be without a purpose; our job is to discover what that purpose is. When we cannot alter our experience, we must look inward and alter our reaction to it. Vasu has learned that “not everyone is going to be able to do things the same way,” but that doesn’t mean that the things they want to do are impossible. If you only have one leg, for example, learning to ski may require more specialized equipment than the average two-track skier needs. By altering the means of mobility, this skier can achieve the same end result as anyone else on the mountain.
Ron Breazeale, author of Psychiatry Today’s column “In the Face of Adversity,” writes a great deal about his own experiences with his disability, and his thoughts on the resilient undercurrent found within the disability community. He shares that
“Acquiring a disability could very much feel like being caught in a flood. A flood of emotions, a flood of changes, a new life in many ways for you and those close to you. The landscape that is left afterwards may appear just as desolate as one that has been ravaged by a hurricane. Those who cope well with disability, who bounce back, quickly learn the skills and the attitudes that we are talking about. They end up knowing more about resilience than the average person” (Breazeale, 2012).
As reiterated by Frankl and Vasu, people cannot always choose their situation, but they can learn to work with the tools in front of them, and in the process of learning, acquire skills that they made never have had otherwise. This is not an easy process, but the struggle faced often comes with comorbid results, such as an increased amount of empathy for others (which can be seen, for example, with Vasu and his own advocacy work), and even a more positive outlook on life, as is true in a study found in Disability Studies Quarterly on people who have had amputations as a result of landmine explosions:
“People who recover psychologically from the traumatic accident move from pragmatic acceptance to what we call acceptance with resilience. They accept the limb loss, and express a desire to live and to make what happened to them into something good, to derive meaning from the traumatic event. They often have the perspective that things could have been worse. They do not define themselves by their amputation; it is a part of who they are, but not all. They perceive and describe themselves as 'normal' (despite the negative messages they get from society about their disability), and they often describe an identity shift so they now feel they benefit from the support of, and feel connected to, other amputees” (Richie, et.al, 2003).
Sarah Reinertsen is another example of someone with an amputation who, like these landmine survivors, described how her identity shifted through the resilience she found in the world of adaptive sports. Sarah failed to bring home a medal at her first Paralympic games, and failed to complete her first Ironman Triathlon years later. Rather than giving up her dream, she chose to keep training and to keep pushing herself towards completing the next one. She later became the first woman with an artificial leg to complete the Ironman Triathlon. When speaking to a group of kids at a TedxTalk about her motivation, she cites her Mom as the one who pushed her towards resilience and independence at a young age: “When I fell, my Mom didn’t always rush over to pick me up, ‘Sarah’s got to pick herself up.’ It was a really important lesson for me to learn then” (Reinertsen, 2012).
Janine Shepard was training for her own Olympic dream in Australia when she was hit by a truck, and partially paralyzed from the waist down. Her 18-month recovery led her to a new dream, one of becoming a pilot. She found a new sense of freedom in the sky, and a new appreciation for life through that freedom. Janine shares that for her, “It wasn’t until I let go of who I thought I was, that I was able to create a completely new life. It wasn’t until I let go of the life I thought I should have, that I was able to embrace the life that was waiting for me. My real strength never came from my body” (Shepard, 2012). Resilience in the face of failure, loss of ability, loss of culture, and loss of lifestyle does not need to be exception; these brave survivors, athletes, and advocates have taught me that this mentality can actually be the norm.
“Everyone overcomes obstacles. Having one leg isn’t a big issue; it’s just a little bit of a hiccup in life that you can overcome. Disability is a myth. People that have these challenges and are able to adapt aren’t disabled.”
I first met Vasu at the winter volunteer orientation for Vermont Adaptive a few years ago. I was standing by the buffet table when Vasu crutched into the lodge from the mountain, face bloodied and covered in snow. He introduced himself and asked me to hold his plate of food while he filled it up, joking that “I can skin up a mountain on one leg but I can’t balance my plate and my crutches!” We talked about his fall (“minor”, despite the blood) and our shared love of adaptive sports. Vasu’s casual confidence and openness always seems to invite people into conversations with him, myself included. His candidness about his life experiences and the lessons he has learned through the adversity he faced inspires others to own their own stories, and to look for the good within those hard times. My theory, based on our friendship and our interview for this paper, has been that Vasu’s adaptability in all aspects of his life has created a space for his resilient nature to flourish. When I began looking for similar narratives, I found that the word “resilience” was commonly used as the adjective describing people who had gone some kind of a life-altering loss. People in the adaptive sports world, those featured in this paper and those I have been fortunate enough to meet, all talk about fighting through the obstacles their ability level creates, and how adapting themselves to their passions leads them into incredible experiences that they might never have accomplished if they had remained “complacent.” The culture found within this niche of individuals is strikingly similar in that sense: something happens outside of someone’s control, life is altered completely, and from that change, a newfound strength and determination is born. People push one another, and push themselves, to achieve goals, fulfill passions, and adapt to new ways of doing the things that they love.
“Everyone overcomes obstacles. Having one leg isn’t a big issue; it’s just a little bit of a hiccup in life that you can overcome. Disability is a myth. People that have these challenges and are able to adapt aren’t disabled. I just have to use different equipment to help me get up the hill” (Out on a Limb, 2012). I think it’s safe to say that many people wouldn’t view an amputation as a “hiccup”, but the research, talks, and individual stories of others who have faced such a loss argues that it’s not an uncommon way of viewing such a loss. Initially, losing a piece of yourself to illness, bereavement, or hardship can knock the wind out of you. The step after this is the crucial piece; how do we, as human beings, move forward with this change? Do we allow it to alter us into a place where we feel like we are “disqualified” from our own lives? Or do we make the choice to become “strong” again, to change our attitudes and thus our own outcomes? I am not suggesting, in any way, that this is an easy choice to make. I personally have no idea if I would be able to take on such a different level of ability with the same type of unyielding positivity that people like Vasu and Sarah and Janine display. All I am suggesting here is that this resilient attitude and mentality are not impossible or even uncommon in the cultures of loss and disability. Human beings are inspired by such personal stories because they show us that resilience in the face of such loss is possible, that people can and do not only survive loss, but find meaning through it. Vasu has taught me that we are capable of living our best lives, in spite of the obstacles that the world gives us, and even in spite of the ones we find within ourselves.