Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the third question in the Challenge. I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later. I am a licensed professional who worked for nearly ten years in geriatric rehabilitation, so I am going to approach this particular question from both the patient perspective and from my professional perspective. Today I write from my experiences as patient.
What have your experiences with medical treatment and/or therapy been like? Do you have positive, negative, or mixed feelings about your experiences?
Medical treatment and physical therapy have been part of my life for as long as I can remember. My earliest memories involve hospitals and doctors. Most aren’t pleasant. They provide insight as to why I am skeptical of any medical professional who does not treat me as an equal member of my care team, an expert on my body, capable of self-direction.
My parents took me to my first neurologist when I was three years old. I remember him asking me to sit on the floor of the examination room. He wanted to watch me get up. I knew I couldn’t get off the floor independently and refused to cooperate. Despite his repeated requests, I was adamant. Eventually he put me on the floor. I saw my mother crying, watching as I stubbornly refused to participate in the doctor’s attempt to evaluate me. Why didn’t he believe me when I said I couldn’t do it? On the way home, she promised we would never go back to that doctor.
Later that year, I had a muscle biopsy and spinal tap to confirm my diagnosis. There were other tests, but they aren’t etched in my mind. I remember being under bright lights in surgery, hearing the nurse say, “I think she’s waking up!” A black mask was placed over my face and I drifted off again. Two days later, the nurses forcibly took away my stuffed animal, Puppy, as they wheeled me down the hall for my spinal tap. I did not cooperate with the nurses, who wanted me on my right side. I argued to flip to my left. Once I was prepped on my left, I then argued to move back to my right. I cried for Puppy, not understanding why I couldn’t have him with me. I don’t remember the restraints, just screaming and crying until I was reunited with Puppy and my mom.
We found a medical home in the neurology department at a regional medical center. Every six months for the next seventeen years, my parents and I would drive the two hours each direction for a day of medical appointments. The three of us would wait in the examination rooms, my mom working on a crochet project while my dad and I played with the reflex hammers, blood pressure cuffs and tuning forks. Initially I saw just the neurologist and physical therapist, but eventually added the orthopedist. My neurologist was fun, attentive and respectful. When he picked me up to put me on the table, I counted the freckles on top of his balding head.
Even as a child, I was never excluded from the discussions between my doctors and my parents. My questions were answered with patience at a level appropriate to my cognitive ability and maturity. The clinic was housed in a teaching hospital, and if interns asked my parents about having me removed from the room, they would explain this was my appointment, my body, and I had a right to be there. I learned about my disability and was able to explain it to other children who often asked, “Why do you walk funny?”
I received physical therapy at home until I started school, where it continued twice a week for the next twelve years. I had wonderful therapists who did their best to make the sessions fun. But it’s not fun to endure stretches and engage in activities which sap all of your energy and leave you too fatigued to play during recess. I used the time in therapy to ask questions about my muscles and my body, and develop a tolerance for pain.
I had two more surgeries before the age of twenty one. When I was ten, I spent eight weeks with both legs in casts after surgery meant to straighten my feet. Ten years later I had surgery to fuse my left ankle. This surgery left me in a cast for twelve weeks which caused rapid muscle atrophy. Despite four months of intensive daily physical therapy (all while finishing my final undergraduate semester and student teaching) I was unable regain the ability to walk.
In 1997 I noticed a sharp, unexpected decline in my physical ability. Imagine electrodes placed along your nerves, repeatedly zapping them to measure how fast the impulse travels down your limbs. This is the joy known as nerve conduction testing. It is usually followed by electromyography (EMG) which measures the electrical activity in muscles. A very thin needle is inserted into your muscle and you contract that specific muscle as hard as you can around the needle. I had both legs and an arm tested. After nearly three hours of torture, I was told I had been misdiagnosed. I was not expecting the level of pain, the news, or the callousness with which the doctor dismissed my questions.
I went to a physiatrist to discuss a physical therapy regime and was asked if I meditated, or found myself clinically depressed. He tried to tell me positive thinking would increase my energy level and improve my outlook. When I asked how to deal with the daily fatigue, he told me to stop working and refused to listen when I explained why this was not an option financially. I was fresh out of graduate school with loans and a new career. I had not spent five years earning the right to call myself a speech-language pathologist to sit at home and not use the degree!
I am a big fan of positive thinking. I do it well. I am an incurable optimist. I know several people who live with depression. I am one of the least clinically depressed people I know. When I shared this story with friends back then, most people laughed because they knew if positive thinking could have helped, I would have been “cured” long ago. Sadly, this dismissal of symptoms and the encouragement to just give up work happens to people with disabilities all the time.
When I finally started seeing the neurologist affiliated with the local Muscular Dystrophy clinic later that year, I found an ally. He acknowledged my authority as expert in my body. He accepted me as an equal on my care team. He ended every visit by asking me, “What else can I do for you today?” He listened without judgement and did not threaten or bully me when I was “noncompliant.”
I will not remain with a health care provider who does not view me as competent. My primary care doctor treats me as a complete person and recommends preventive screenings. When I went to a new OB/GYN last year, she assumed I have a sexual history, like every other 41 year old patient, instead of viewing me as asexual just because of my disability. I know from my peers and from my professional work in public health not all people with disabilities receive this level of care. Too often we are only seen as our disease, our impairment, our difference. When I had an abdominal ultrasound two years ago, the technician asked me at least fifteen questions about my disability even though it had no connection to the reason for the visit.
I am a healthy person. I eat well. I don’t drink to excess. I don’t smoke. I don’t have high blood pressure. I am vocal about my decisions related to medical matters. I wrote my first advanced directives in 1998, not because I fear death but because I wanted my family to know my wishes. Until complications from my gallbladder surgery in 2013, I had not been hospitalized in twenty three years. Thankfully, those I love and trusted stood by my bedside and advocated for me while I was unable to. Doctors and nurses only saw an empty wheelchair, but family and friends were my voice and ensured my wishes were followed. I am alive today because we had those difficult conversations prior to a crisis.
My life-long experiences have made me comfortable in medical settings. I know the culture of western medicine. I can navigate healthcare and hospitals with ease thanks to this exposure. Next week I will discuss how these skills translated into my professional experiences.