Guest author: Katherine Shrager, Psy.D.
I am on the most amazing journey. I feel like I have entered a parallel universe. Perhaps it has been running alongside my known world all along.
Dozens of literary references spring to mind in which characters, unbeknownst to the world around them, are transformed into other beings, transported to unknown worlds, or both, as we, their audience long to call out, jump up and down, and perhaps shake the shoulders of other characters to enlighten them to these invisible transpositions. We bear witness. We hold their hands; exult with them; catch their tears; laugh together in delight, inspiration, or release – while their comrades continue life as was. It is one of the most compelling and evocative techniques to enunciate the solitude of human experience.
On the morning of Friday July 19, 2013, I became one of those characters. In the span of just over three hours, without ceremony or precursor, I went from fully able-bodied to completely paralyzed below the neck. I don’t mean weakened, or shaky, or clumsy. I mean totally, utterly, unable to move.
This alteration was punctuated by a whole range of scattered and unfamiliar sensations for which I as yet had no language, only later to be defined and elucidated: An iron vice grip seized my triceps like some kind of possessed construction clamp. One hand went limp and refused to follow orders, as though it suddenly spoke a different language from my brain. A rush of warmth flooded my feet. An abrupt, deep ache tightened my neck and shoulders, and my toes tingled as though I’d sat on them for too long. And then, shockwaves shot like sizzling electric currents in random non-patterns, as though in some crazed electrical test of new, amateurishly installed wiring in a log cabin. I had no conception of the world I had precipitously entered.
I spent two days in the emergency room baffling an array of medical professionals and undergoing an impressive arsenal of tests. By the end, after first attempting to stamp me with a psychiatric diagnosis to mask their own bewilderment, neurologists had located an area of inflammation in my cervical spine. I was transferred to another hospital, where I spent six days for differential diagnosis and the first phase of treatment, massive doses of intravenous steroids. By then, muscle atrophy had set in. I had lost every muscle in my body below my neck.
At this moment began a journey that most of us have had but few of us are ever blessed to recall: By the grace of G-d, I began to move. I first regained tiny movements in my feet and arms. Like a newborn, I practiced these movements over and over again, fascinated and in love with what my body could do.
With this success, I was moved to Magee Rehabilitation Hospital. This astounding facility began the arduous process of putting Humpty Dumpty together again. Their skilled therapists had the courage to take my blood pressure of 64/36 and teach me to sit up anyway. On my first day in the therapy gym, I recall sitting heavily supported in my wheelchair before a poster which, next to a photo of hands poised gracefully over a piano keyboard, proclaimed, “BELIEVE IN A WAY BACK.” It was Magee’s motto, and incredulous as it felt at that moment, it became mine, too.
Within my first three days, a pair of enthusiastic physical therapists crouched on either side of me and supported my floppy frame in my first tentative and teetering stand. As I stood there, exhilarated, I ignored the black spots before my eyes and the room spinning around me. When the therapists asked, “What do you think?” I choked back tears of awe and replied, “I will never again take for granted the ability to take a walk.”
Within days, however, after tasting the allure of rehabilitation, I was moved to another hospital for twelve days. The first two days were filled with the most grueling collection of medical assessments and procedures I have ever undergone. I was approved for a blood filtering technique known as plasma pharesis, which kept me bedridden with a catheter in my jugular vein for ten days. Each day I begged for physical and occupational therapy, itching for the opportunity to move again.
The best part was being moved back to Magee again. As the medics wheeled my stretcher back into my room there, I burst into tears of joy and said a prayer of immense gratitude. I spent seven weeks working doggedly every day to regain my physical capacities. My biggest triumphs were perhaps the goals never formally established but rather those set silently in my mind – I will scratch my own nose; I will hit the elevator button; I will make a telephone call; I will turn the pages of a beloved book.
By the end, I propelled myself around the facility in a hemi-height wheelchair mobilized by walking my feet along the ground. My daytime nurse scolded that whenever she wanted to give me meds, all she saw was the back of my head disappearing down the hall. I considered this a triumph! One day shortly before my discharge, as I sat on the rooftop patio overlooking downtown Philadelphia, I started chatting with a fellow patient. As we talked, he said, “You know, I will never forget the day you first stood up.” I said, “Really? You were there? You remember that?” I couldn’t believe that anyone else had been paying attention. He told me that he had been in tears, that the entire gym had looked on, moved. And then he proceeded to quote what I had said that day. He said I had inspired him, and because of that he never lost hope that he might one day stand, too.
I was dumbstruck. We go through our lives, motivated by and focused on our goals and blessed with the triumphs that meet us each day. But rarely do we get to hear the impact we have on another, then a complete stranger. And rarely do we get such daily, piercing reminders of how lucky we are. I have truly been blessed.
I have been blessed in so many hundreds of ways, and these are illuminated daily, one at a time, like the slow unfolding of a flower or the gradual brightening of the sky, one tiny diamond star at a time: I walk unassisted. I climb the three flights of stairs in my home. I open the refrigerator door. I meet the sweetest goal of all, lifting my delicious toddler into his crib at bedtime and out again when he awakens. I make myself a cup of coffee. I shower myself and wash my own hair. I type this article on my iPad with my own hands. I tick off these achievements by the sheer grace of G-d.
Months later, my neurologist showed me images from my latest MRIs, remarking that he saw only improvement. He showed me the inflammation in my cervical spine and detailed the bodily functions controlled at each level. My inflammation extended from C3 to T1. At C4 the spinal cord controls the diaphragm, and at C3 breathing functions begin to be governed, explaining my labored and weakened coughing, swallowing, speech, and even breath. But, he said, if the inflammation had occurred only millimeters higher, in the C2 region, he said, “We would not be having this conversation.”
I would have been on a ventilator.
I am truly blessed. The journey of recovery is long and gradual. I have entered a world of therapy not psychological, but physical and occupational. I can name and locate muscles I never knew existed, and I have a felt sense of their intricate orchestrations that enable human movement. I have communed with others whose experiences echo elements of my own, sharing with these otherwise strangers the triumphs, hopes, horror, and humor that not even those most beloved in my life can comprehend.
I am daily shaped by this experience. Thanks to my early and complete physical incapacity, I gained an ability to articulate in patient, painstaking detail the most seemingly abstract or intangible activities and experiences. Ever the mover, I suddenly became intimate friends with mindfulness. (I have never before spent so much time staring at ceiling tiles!) Ever the multitasker, I have learned to focus all of my attention on a single task or, frequently, a single part of a task. I am often late, because after a lifetime of perfecting the ability to do many things at once and quickly, I have not yet perfected the ability to estimate how long I will now require given my diminished capacity and the strong effect of even small environmental stimuli on my functioning. I have learned to ignore the discomfort of others as they watch me struggle mightily and for extended periods of time to do something simple like remove my jacket or take a key out of my wallet. Conversely, I have also learned to accept my limitations or the restrictions of a situation and ask for help, even when I sometimes know that given unlimited time I could probably accomplish the task myself.
I have witnessed humanity’s capacity for striking wisdom, breathtaking kindness, and profound resilience. I have been inspired by the divine brilliance of the human body and the perfect orchestration required to complete even the smallest task. And I have seen firsthand the effect of one’s outlook on the path of one’s life. Each afternoon at Magee, after working fiercely and happily in therapy, I would sip coffee and sit on the balcony outside the second floor cafeteria. There, overlooking the busy Philadelphia street, hung bold black banners with golden letters. These same banners, seen simultaneously by patients above them and the busy world bustling below them, held deeply different meanings to each. I would try to fathom what others thought of these banners as they drove through the rush hour traffic, what I myself would have thought a few months earlier, or if I even would have noticed them. But each day at Magee I would look at these banners and get chills down my spine.
These banners declared, “BELIEVE IN A WAY BACK.”
This piece was first published in Currents, a newsletter for the Philadelphia Society for Psychoanalytic Psychology.