Twenty-four years ago, MRI scans revealed a tumor inside my spinal cord. Post-op, the diagnostic impression stated, “Left spastic hemiparesis and Brown-Séquard’s syndrome, status post C2 subependymoma resection.” My condition was named after Charles-Édouard Brown-Séquard who worked at the National Hospital for the Paralyzed and Epileptic in London in the 1850s. He observed spinal cord injuries resulting in “paralysis and loss of proprioception (location) on the same side of the injury or lesion and the loss of pain and temperature sensation on the opposite side of the lesion.” Initially I was paralyzed from the neck down.
A few days after surgery, a minuscule amount of muscular contraction in my right arm and leg returned. I could not feel pain or register temperature on that side. Spastic tremors twitched on my left side, and my claw-like hand would not unclench. Bladder and bowel control had ceased. With intensive physical therapy, my fingers gradually began to unravel, toes to wiggle, and feet to flex. Being transferred to sitting upright in a wheelchair assisted by nurses was liberating. Weeks later, I learned to stand upright — my first careening steps enabled by a walker and an ankle brace. Insurance only covered six weeks at the Sister Kenny Rehabilitation Institute in Minneapolis. I went home in a wheelchair.
Our home was not accessible, but I learned how to walk up six stairs to get in the front door. One step at a time is all I could fathom, my world was that small. Outside trips were fraught with unforeseen physical and emotional obstacles. A movie outing was ruined when I was trapped inside an “accessible” bathroom. When we went shopping, scattering adults and gaping children greeted me. A carnival barker tried to stop me getting on a kiddy-ride. Friends looked over the wheelchair and asked my husband Larry, “How’s he doing?” My ego, up until then not particularly fragile, was destroyed. Over the years, swimming, water running, and yoga incrementally expanded my motor skills, coordination, balance and strength. Now, I use the wheelchair only as backup. While navigating the world in a chair is easier, I am determined to walk, despite the physical toll and fatigue. I train daily like an athlete, just to maintain. I still do not have a balanced gait, which necessitates using a cane. My right side has no sense of deep touch and temperature. My left side is a void, with no sense of location. My brain has no idea I have a left leg. An ankle brace stabilizes that foot. Neuropathy is constant in my right side and escalates with any physical exertion. My foot often feels swollen and on fire – electric shocks punctuate every step. Excruciating pain pulses through my right hip. At times, sciatica constricts my left hamstring, doubling me over with spasms. It is impossible to tell loved ones and co-workers “I hurt” on a daily basis. My exhaustion is physical and emotional. Occasionally the burning subsides. I only recognize the intensity in its absence. I try to hold on to the quiet. Within minutes, however, the debilitating throbbing rages back, reclaiming its scorching grip.
At night I dissociate, seeking elusive stillness until sleep comes. Body workers, chiropractors and acupuncturists attempt to interrupt the cycle. Pharmaceuticals temper spasticity and discomfort, but distance me from those around me. After over two decades, chasing relief seems futile. My professional life has not been compromised, due to the grace and generosity of boards, staff and public who see beyond disability. In fact, walking slowly with intention in the world is an unexpected gift that has its advantages in decision making and long range planning.
Currently I am serving as an elected legislator in the Vermont House of Representatives. I do none of this alone. My ongoing recovery with inevitable falls, accidents and setbacks impact my husband as well. When our world first imploded, the minutiae of what life had become amplified our love. I may be persistent, but he is resilient. My stalwart caregiver and cheerleader, we both live with disability.
This line is so heartbreaking and so familiar: “It astounds me how common an occurrence this is. I’ve seen it myself when I was using a chair and forever watching the world react to my mom and her wheelchair. I cannot explain it but to say that people have such fear around their own vulnerabilities, and the ever-possible fall from the glittering world of the able-bodied to the sallow world of disability. Hurt people – or people we perceive as hurt – are terrifying. Here is one of the chief ways disability is so painful and isolating. Projections… And this is also where we can aspire to do better by each other simply by way of self-reflection and coming to terms with our own fears.
Pain and pleasure, joy and sorrow, et al., are relative. One of the chief thrills of injury is how loss can reset our receptors. The upshot of surviving deconstruction is that we get to revisit the miracle of life and reconstruct ourselves. It’s quite an opportunity that we all have always, but often need a push or a kick to get there! John points to this in how amazing a feeling it was to move from the bed to sitting upright in a wheelchair. Enter the feeling of gravity and the power of opposing it. Or in how John took the opportunity to love moving slowly through the world with intention. Or how John and Larry’s love became amplified by their life’s implosion. As human, nothing is all “good” or all “bad.” It turns out we need both to experience the breadth of life, and, over the course of any normal life, we get both in spades.
And there’s the realization of our mutual dependence, another enormous gift of illness and disability. Most of us get seduced into thinking we are independent, at our best. The harder and more gorgeous truth is that we are always and forever interdependent, somewhere along the spectrum between the invented ends of total independence and total dependence. We need each other, in big and small ways. That is health, not weakness. Before death comes, I hope we all get to this lesson one way or another.
-BJ Miller, MD