In the dimly-lit school of the medicine auditorium, I watched the film Murderball1 in awe as gruff, tattooed, strong men slammed their wheelchairs into one another, blocking their opponents and leading the American team to intercept and catch hold of the whizzing game ball from the opposing team. Afterwards, the elated players rolled at lightning speed to victory. They were playing wheelchair rugby, an exciting mix where wheelchair basketball meets ice hockey. There is no shortage of vigorous full contact moments between players. The game is euphemistically and appropriately called “murderball,” and watching the passion and fervor on the players’ faces, it was not difficult to see why.
Hearing Mark Zupan, one of the seasoned players and stars of the movie, refer to his catastrophic spinal cord injury as “the best thing that’s ever happened to me,” gave me goose bumps as I watched the fiery passion play across his solemn face for his sport, his life.
“That’s the kind of strength I am going to instill in my patients,” I thought. “Yes, I will be a therapist who instills that kind of motivation in my patients some day.” Watching this film, I felt invigorated and was chomping at the bit to begin changing lives. And no, I do not think it was just the Starbucks I consumed en masse that day. Watching this movie and its many inspirational moments reminded me why, as a student, I was undergoing a rigorous Doctor of Physical Therapy curriculum. It also validated my passion and re-emphasized my reasons for choosing this career path. I felt ready to change the world. I had always wanted to help people in need, but after seeing that movie especially, I desired nothing more than to help people navigate catastrophic, life-changing injuries and diseases to regain independence. I hoped someday to be able to facilitate the level of passion and fight in my patients as demonstrated by those athletes playing murderball.
Fast-forward several years and I am working with patients with catastrophic spinal cord injuries. I intersect with them at a complex and crucial time in their lives, joining them in their grief and sense of loss as they navigate uncharted territories of pain, paralysis, and diminished independence. The sedating medications frequently given in the ICU to combat pain and limit mobility (and consciousness along with it) have mostly worn down by the time they arrive to the rehabilitation floor, and the priority of care has shifted from saving the life of the individual to returning them to actual living. It is during this time in their recovery when patients begin to face the reality that living out their daily life may look very different than it did prior to their injury. Patients often undergo a process of grief as they wrestle with an existential crisis. Many patients struggle to come to terms with who they were and who they are now in light of their injury and what roles they will fill in the future. As a member of their rehabilitation team, I feel a great responsibility to guide and support them through these stages.
Most of the patients I encounter are, at least initially, similar to those individuals depicted in Murderball, who have faced and are facing life-altering injuries and diseases. When I first began my career as an inpatient therapist, I worked with adolescent-aged patients. “What a great opportunity to show young and impressionable minds how great life can truly be despite their injury. They will think wheelchair rugby is cool!”… My goal wasn’t something as superficial or as simple as making my patients excited about wheelchair rugby but, rather, to use the movie as a metaphor to inspire them to believe that enlivening activities and active, exciting lifestyles such as those depicted in this movie, are indeed possible after a severe injury. I hoped that the film’s expressive themes of passion and hope and belief in a meaningful life after injury would encourage and uplift my patients, despite what season of life or level of impairment they experienced with their injury.
And maybe my patients would have found wheelchair sports or Murderball itself cool, had they been able to sit upright long enough to watch a movie without becoming severely hypotensive; or they might have been excited about playing murderball if they were not so distraught about missing their junior prom or the big game. Sitting down to watch a movie to be “inspired” was the last thing they desired at those moments. In those moments they needed to cry, needed to grieve; they needed a text from their best friend or a hug from their mother. Understanding that sometimes a patient needs the opposite of what I thought they needed was a difficult lesson to learn. However this lesson is also one that I quickly valued. There is a certain level of trust and respect that is earned from a patient when a therapist realizes that being patient-centered does not always mean being a “coach” or a “cheerleader.” Though it is appropriate and at times necessary to take on the role of the optimistic motivator, at other times it is necessary to gain their trust by leaving them space to rest, to mourn, and to always allow the patient to decide what is important for them to prioritize.
When I transitioned to working with adult patients with spinal cord injuries, I continued to process and understand that they also struggled with grief and loss; and they often had difficulty prioritizing their own rehabilitation goals. At times, the realities of adulthood like parenting, working, and caregiving, made it that much more challenging for my adult patients to imagine their previous roles with their new impairments and limitations. Due to the complex nature of adulthood and accompanying responsibilities, such as supporting a household or parenting, the prioritization of goals in those specific areas often overshadowed others, often initially expressed by some of my younger patients (such as being able to walk again).
I recall a young mother with a spinal cord injury due to a skiing accident. One of the resulting impairments was a loss of her finger dexterity. I vividly recall that she wanted nothing more than to feed her newborn child and change his diapers; she wanted nothing to do with wheelchair sports. In another case, I worked with an elderly woman who sustained a cervical-level injury, whose family had since abandoned her after realizing how much care she would require: she had no desire to watch those murderball players roll onto victory. She, in her despair, desired a reason to get out of bed and participate, so that she may have a chance of weaning off the ventilator.
Witnessing patients experience these difficult moments and partnering with them to help them through the grieving process can slowly (or quickly) chip away at the glossy “inspirational” paint that we therapists tend to try to lacquer ourselves with. We wear this optimistic exterior with pride, attempting to have it act as armor. This armor, in my experience, has been more for my own self- preservation than actual protection of our patients. Allowing oneself, as a therapist, to be vulnerable and open to another’s catastrophic experience and the grief that follows opens the door to asking ourselves very difficult questions: “What truly encompasses a life worth living? How would I handle this situation if my independence was abruptly taken from me?”
We, as therapists, typically know full well that the reasons we chose this profession have more to do with our compassion and altruism than our ability to portray a firm, “coach-like” exterior. But the realities of depression, the lack of caregiver and family support, and the unmanageable pain: these real-life struggles can subtly strip the enthusiastic luster away from a green, passionate therapist if we are not careful.
It is possible and, I believe, necessary to understand that we are able to encompass a multitude of qualities: compassion and strength, as well as expressing confidence and knowledge in training functional skills, all the while remaining sensitive to the person’s deep seated emotional needs. However, the challenge exists in striking a balance, or more appropriately an amalgamation of the multiple approaches necessary to best serve the patient.
When this balance of approaches has been off kilter for me in the past, I began to feel the gradual chipping away of my own optimism reaching toward my inner beliefs about myself as a therapist, and I began to doubt the impact I was making in my patients’ lives. This is something I later identified as the beginnings of “burn-out.” I began to question my approaches. How can I relate goals and inspire the passion for life seen in Paralympic athletes? Can this “Murderball” ideology—one that challenges patients to embrace their new way of life instead of avoiding it or allowing it to overcome them—apply to a broader spectrum of patients? Can I still make meaningful change without teaching them seamless wheelchair skills and inspiring world-class athletes? I felt compelled to answer these questions and to build my own ideals as a “patient-centered” therapist, or it was going to be a very long, shallow and unrewarding career. And so I did.
And yes, at times, my version of “points scored” means the “rrripp!” of Velcro as the young mother accomplishes her task of changing that diaper. And victories are still won through bent forks brought to mouths with adapted splints, holding mom’s home-cooked meals. And tears of joy are at times wept, not because of cheering crowds and medals in an athletic triumph, but because of the warming glow of a sun-kissed face who hasn’t seen the outside of an ICU in weeks.
I am still learning this ever so seasoned trade of meeting my patients where they are. In an inpatient setting for catastrophic injury recovery, that is often in the shadow of immense grief, anger and fear. But if I am able to step back, truly find empathy and my “way in” to their own personal “Murderball moment” and be able to help them achieve what is most significant to them, at that moment, we all just may have a shot: a shot not just at surviving, but even winning, the game.