As my life as a totally disabled person began to take shape, I frequently bumped into circumstances where I was marginalized. Repeated experiences, such as the struggle to iron out the delivery of medication, demonstrated the losses before me were not just physical capabilities. They were also lessons in how quickly I was negated, overlooked, or just expected to go away if my needs no longer fit into existing societal systems and norms.
I began to call these events my “Ophelia moments.”
When I was able to work, I taught high school English literature, a staple of which is Shakespeare’s Hamlet. In my classroom, we examined the life and death of the character of Ophelia, Hamlet’s true love, a politician’s daughter, a young woman whose value was in being married off. Initially, she is privileged (or at least as much as a woman could be in that era) – poised to marry into the royal family, to a man who seemingly adored her, and settle into a life of power and wealth. Ophelia, I argued, is the study of identity – how do we know who we are? What happens when our carefully crafted sense of self unravels?
Shakespeare’s answer seems to be that when we base our identify on what others -and we ourselves – perceive? We are in trouble. Inevitably, opinions and the circumstances of life are fickle. In the case of Ophelia, her father uses her in a political gamble against her lover, the King’s nephew, Hamlet. She loses everything in one fell swoop, in a plot that strips her of her faith in her father, Hamlet’s love, the Queen’s support, and any hold on her future. And, of course, she herself has no input whatsoever into her fate: she is used, abused, and tossed aside.
In the end, she succumbs to grief, then madness, and becomes a tragic figure, dispensing flowers and speaking gibberish, lost in a childish fantasy stripped of meaningful contact with reality. She is last seen floating downriver, buoyed up by her white gown, holding flowers and singing nonsensically as she floats to her grave.
For my part, perched on the chair in the studio, I encountered not only my physical losses, but the enormous disconnect between my current reality, and the sense of “me” that I held so dear. Like Ophelia, the measuring sticks by which I judged myself no longer applied. My identity was shaped by my achievements, my affluence, and the admiration of others, frankly. I was a well established workaholic. As such, I reaped the rewards of advancement, increasing responsibility and to a degree, influence, in my work environment. My income and financial security improved with each promotion, and this afforded me and my family a comfortable standard of living. Material wealth and a successful career positioned me to be well received by those around me: as a white collar professional, I was viewed in a certain light by my colleagues, business professionals, and my family and friends.
I valued these perks, to be sure, but my drive to help improve the lot of others, particularly marginalized students and their families, was the core of my purpose each day. A good day, for me, was one where I could support a staff member in their efforts to engage a reluctant learner. Sometimes, it meant helping a suicidal student navigate the health care system or taking steps to keep them safe. Each opportunity to advocate on behalf of another human being, without privilege or voice in our system, entrenched my view of myself: capable, and able to leverage resources and power on behalf of others or to achieve my own purposes as needed.
Cancer, and then CIPN, followed by total disability, demolished these foundations on which I had built my identity and sense of purpose. It was a shocking turn in fortune.
Never once, in all those years of teaching Hamlet, did I imagine I would find myself an Ophelia-like character in the world of modern womanhood.
Perched on my metaphorical ledge, I observed the inner turmoil, enduring each wave of grief as I reckoned with unexpected limitations and losses. The competent, calm professional with the ability to influence and manage unruly, difficult circumstances? She was gone. In her place was someone new, unfamiliar and unwanted – powerless, pain stricken, and bereft. Like Ophelia, the misfortunes that piled up left me drifting, unmoored for a season, in a deep state of mourning. The darkness of depression beckoned, luring me to bleak corners that distorted my thoughts and perceptions. What, I wondered, was the point if all that was left for my future was pain management and marginalization?
Yet unlike Ophelia, something held me back, keeping me from fully embracing the darkness and letting go of all hope. As the months ticked by, I continued to sit in the Soft Kitty Chair, waiting for the pain to recede, and to find a renewed sense of purpose in the barren landscape of my life. I did not know it, but this very discipline – whereby I learned to live with unresolved suffering, without giving into despair – was a crucial new tool. An enormous conflict loomed, that would test my resilience and force me to find my voice again to advocate for someone else – myself.