When I was discharged from the hospital, misdiagnosed then with vertigo and re-diagnosed later with a stroke, I was unsure how I was going to get inside my house. A steep flight of wooden stairs ran from the back door to the kitchen. It took two sidewalk steps and another four to get to the front door. Despite a week of resting recovery, I was unable to walk unaided. I was given a grey and chrome walker just like my great-grandmother had used, and bounced along the hospital halls like a sad little pinball. Per my request, a physical therapist—alarmingly old and tiny—hobbled me to the fire escape stairwell just outside my room and spent 20 minutes clutching to a safety band lashed around my waist as she explained "good legs go to heaven, bad legs go to he..." She didn't actually say "hell" but instead raised her eyebrows on the first syllable of the word and then went silent as she glanced downward and jutted out her chin. My good leg was to lead up the stairs; my bad leg was to lead down the stairs. The problem was that neither leg felt particularly more sure than the other. Having always been heavily right-foot dominate and my right side being the most effected, I was forced to begin adapting my left arm and leg for the tasks of day-to-day.
It was bathing that first night at home that led to the severity of my impairment's discovery. My husband ran a bath for me, and holding his hands, I stepped with my right foot into the tub. "Oh, Travis. That's cold," I said disappointedly. He furrowed his brow. "No," he said. "No it's not." I lifted my left foot over and into the tub. Heat made my skin tingle. We lowered my body in to the water. I relaxed, laid back, gave way to the water's gravitational release. I was quiet. I swirled the water with my hands. On the left, I was pink and hot. On the right, there was nothing but a sensation of movement, the push and pull of tiny currents flowing against my skin. I soaked. Travis washed me and, as I stumbled out of the tub, wrapped me in a towel, drying me while I clung to the sink counter for stability. He guided me from the bathroom down the hall to the bedroom. Curious, we poked and pinched at my body. I asked him to hurt me, to pinch me like he meant it.
"I am," he said.
"Harder."
"I don't want to hurt you," he said.
"You're not."
It was the truth. From the neck down my right side bore no sensation of pain or temperature. We, though untrained in the astute art of medical observation, decided that the situation was "abnormal." I saw my primary care provider who, trained in the astute art of medical observation, concluded that my case was beyond his means and referred me to a neurologist. The neurologist nodded as he listened to my story, breaking a wooden swab in half to poke me with its splintered end. On the left, pain. On the right, nothing. He brandished a metal tuning fork. On the left, cold. On the right, nothing. Yet the gentle brush of the swab's cotton-tip registered.
I was fascinated and vindicated. During the week I had spent in the hospital—stored at the end of the pulmonary wing for unexplained reasons—the hospitalists never touched me. Their rounds meant five minutes or less of leaning on outdated hospital furniture, professing that I had vertigo, that it would go away as quickly as it had come on, and that my lack of sensation in my right hand was most likely due to the infected IV site for which I was allowed a topical antibiotic. After my initial admission there had been no more tests, no scans, no specialists. However, my symptoms and the ipsilateral Horner's syndrome affecting the left side of my face made me a textbook stroke case the neurologist said.
By then, there was little to be done. My husband had worked throughout my hospitalization, and once I was home there was no point in him hanging around to babysit me. I slept. I slept in our bed through the night, and was moved to the fouton during the day where I lay, most often naked and wrapped in a light blue comforter, for the rest of the day and listened to the TV. My double-vision made it difficult to watch any programs for more than a few minutes at a time, and even then, I had to shut one eye. Unable to do so much as pour a glass of water for myself, I typically didn't eat until my husband came home, at which point he would fix dinner, do housework, mind the pets, supervise my bathing if I was up to it, and then we'd go to bed. We lived this way for nearly six months.
Rebuilding was hell. I had never wanted to be a housewife. My loss of independence resulted in a loss of identity. Although I had been a patient many times before, I was always of relatively able body and mind. I cried because I couldn't leave the house on my own. I cried because the most simple tasks took so much effort. I cried because once finally able to cook again, my sense of taste was askew. I cried because I missed my real job.
And then, I stopped crying. It is only after suffering tremendous loss that we can see what we have truly gained. Without the burdens of a productive life, I was free to pursue what I wanted; moreover I was free to think about what I wanted and make those things a priority in my life.
I went back to work. I traveled to Puerto Rico and hiked in the rainforest (ok, so maybe it was more of a casual saunter than a hike). I went to graduate school. I became a teacher. I began writing more. I got a diagnosis. I became managing editor. I rode a mule at the Grand Canyon. I became the interviewee rather than the interviewer. I traveled to Paris. I founded a nonprofit. I lobbied on Capital Hill. I swam with stingrays.
It's now been nearly five years since the stroke. I'm still prone to wearing wicked blisters on my right foot. I've learned that hot doesn't feel hot as much as it feels electric and have adjusted my response accordingly. I still close my left eye when looking over my left shoulder in order to ease the nystagmus' jumpy effect. I don't do well in narrow situations — i.e. no cliffside precipices for me — and when I get tired the Horner's syndrome shows. And I still choose the elevator instead of the stairs.
Judge not by what you can only see, as what you see shows little to nothing of what actually has been accomplished.
"I am," he said.
"Harder."
"I don't want to hurt you," he said.
"You're not."
It was the truth. From the neck down my right side bore no sensation of pain or temperature. We, though untrained in the astute art of medical observation, decided that the situation was "abnormal." I saw my primary care provider who, trained in the astute art of medical observation, concluded that my case was beyond his means and referred me to a neurologist. The neurologist nodded as he listened to my story, breaking a wooden swab in half to poke me with its splintered end. On the left, pain. On the right, nothing. He brandished a metal tuning fork. On the left, cold. On the right, nothing. Yet the gentle brush of the swab's cotton-tip registered.
I was fascinated and vindicated. During the week I had spent in the hospital—stored at the end of the pulmonary wing for unexplained reasons—the hospitalists never touched me. Their rounds meant five minutes or less of leaning on outdated hospital furniture, professing that I had vertigo, that it would go away as quickly as it had come on, and that my lack of sensation in my right hand was most likely due to the infected IV site for which I was allowed a topical antibiotic. After my initial admission there had been no more tests, no scans, no specialists. However, my symptoms and the ipsilateral Horner's syndrome affecting the left side of my face made me a textbook stroke case the neurologist said.
By then, there was little to be done. My husband had worked throughout my hospitalization, and once I was home there was no point in him hanging around to babysit me. I slept. I slept in our bed through the night, and was moved to the fouton during the day where I lay, most often naked and wrapped in a light blue comforter, for the rest of the day and listened to the TV. My double-vision made it difficult to watch any programs for more than a few minutes at a time, and even then, I had to shut one eye. Unable to do so much as pour a glass of water for myself, I typically didn't eat until my husband came home, at which point he would fix dinner, do housework, mind the pets, supervise my bathing if I was up to it, and then we'd go to bed. We lived this way for nearly six months.
Rebuilding was hell. I had never wanted to be a housewife. My loss of independence resulted in a loss of identity. Although I had been a patient many times before, I was always of relatively able body and mind. I cried because I couldn't leave the house on my own. I cried because the most simple tasks took so much effort. I cried because once finally able to cook again, my sense of taste was askew. I cried because I missed my real job.
And then, I stopped crying. It is only after suffering tremendous loss that we can see what we have truly gained. Without the burdens of a productive life, I was free to pursue what I wanted; moreover I was free to think about what I wanted and make those things a priority in my life.
I went back to work. I traveled to Puerto Rico and hiked in the rainforest (ok, so maybe it was more of a casual saunter than a hike). I went to graduate school. I became a teacher. I began writing more. I got a diagnosis. I became managing editor. I rode a mule at the Grand Canyon. I became the interviewee rather than the interviewer. I traveled to Paris. I founded a nonprofit. I lobbied on Capital Hill. I swam with stingrays.
It's now been nearly five years since the stroke. I'm still prone to wearing wicked blisters on my right foot. I've learned that hot doesn't feel hot as much as it feels electric and have adjusted my response accordingly. I still close my left eye when looking over my left shoulder in order to ease the nystagmus' jumpy effect. I don't do well in narrow situations — i.e. no cliffside precipices for me — and when I get tired the Horner's syndrome shows. And I still choose the elevator instead of the stairs.
Judge not by what you can only see, as what you see shows little to nothing of what actually has been accomplished.
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