Takoma Park, Maryland, United States
|Photography by dierk schaefer|
At first I thought I had a sinus infection, expecting to come home with a course of antibiotics. The doctor initially agreed, but when he heard my account of facial numbness spreading around my left eye, he referred me immediately to a neurologist, who sent me for an emergency MRI. When I emerged from the dressing room, the doctor was sitting in the waiting room, pizza in one hand and MRI in the other, and said, “Good news! You don’t have multiple sclerosis. It’s just a brain tumor.” Everyone was surprised to discover that my tumor was actually on the right. The 7cm-plus tumor was pressing on my brainstem, plastering the facial nerves on the left against the inside of my skull.
The surgery lasted almost 24 hours. I still think the surgical team must have ordered out for pizza and a movie during all that time. One of my friends caught some of the surgery on closed-circuit TV. My boyfriend joined my parents in the waiting room during the day and early evening; and they stayed all night in the hospital waiting room, waiting for me to emerge from the operating room.
After a short stay in the ICU, I moved to the neurology floor and worked on recovery. I had the whole range of side effects. A severed 8th cranial nerve left me deaf in one ear and with impaired balance. I also had paralysis on one side of my face, wide-open dry eyes, serious nystagmus, difficulty with speech, difficulty thinking with words, difficulty reading, difficulty walking, handwriting illegibility, etc. Because of my balance adjustment, I sometimes felt like I was being dumped out of bed and held onto the rails for dear life. Eventually I went to occupational therapy and learned to draw lines between pictures and words. I went to physical therapy and practiced walking halls with patterned floors, and then later, up and down stairs. And the nutritionist kept sending up cases and cases of Sustacal despite the fact that I was eating just fine. My friends stacked them up in pyramids like beer cans.
Eventually, I was given a pass to go out of the hospital. My family and friends helped me tread slowly through the snow (with a cane) to the annual garden show at the convention center next to the hospital. Soon, I was signing discharge papers. As I bent over to try to sign my name (a great difficulty), a drop of spinal fluid dripped from my nose onto the paper. My neurosurgeon slid the paper away from me, mumbled something about culturing it, and told me to take off my shoes and lie right back down. I spent the next few weeks getting spinal taps, a long-term tap that stayed in my back, and intravenous vancomyecin for meningitis. Meanwhile my main neurology resident went bungee-jumping in Australia.
Eventually I was released with a small cerebrospinal leak that refused to heal inside the hospital. On April Fool’s Day, my ENT told me I would be coming back in for a second surgery to correct the leak. After this surgery, I had a more serious case of meningitis and more vancomyecin. I eventually went home with an intravenous line in my arm, a refrigerator filled with antibiotics, and no remaining veins.
I started learning American Sign Language soon after surgery, partly to help regain control of my right hand and partly to help me deal with my now-merely-decorative right ear. Although I found it difficult to read for many months, I slowly regained my skills. Instead of returning to my previous academic explorations, however, I began to study deaf history and culture. Reading about disability, I learned that the study of disability and deafness was also a fertile ground for exploring cultural constructions of the body. Physicians tend to see disability through a medical lens, suggesting that disability is physical impairment which can ideally be treated or cured. A humanities-based cultural model suggests that disability is a less stable category, defined at least partially by historical assumptions and cultural situations as well as social and environmental barriers. The meaning of disability and deafness, whether for an individual or for a community, comes from context-specific lived experience rather than physical diagnosis.
There are things that remind me of my surgery every day. The lack of a vestibular nerve still makes it hard to walk in the dark or on the snow and ice. I get frustrated in loud parties when I can’t follow conversations. My handwriting is barely legible, and I cannot spell (though perhaps those two were true before the tumor). Sometimes the person cutting my hair will ask why I have an indentation in my head. I am totally amazed when two-eared people can tell from sound where they dropped a penny. Best of all, I have a funky talent of automatically closing one eye whenever I pucker my lips. Apparently my nerves regenerated in a less-than-typical way. I still drip (spinal fluid?) from my nose on exertion or in hot weather, become mildly nauseated, and get a headache. I keep a copy of an old Calvin and Hobbes cartoon strip that came out while I was in the hospital: Calvin is worrying after a big sneeze that he is leaking brain lubricant!
Since my surgery, I have met many people who have had the same kind of tumor, some whose tumors were quite small and others more like mine. Seeing what kind of experiences they have had, I feel so lucky. Despite the fact that I had a very large tumor and a whole lot of immediate side effects, two years after surgery I was—well, not at all my old self, but a new and whole human being living a new kind of life with new expectations, new limitations, and new goals.
My experiences have allowed me to understand much more about the experience of health and disability, about strength and love. Surgery took me in a new direction, one that I never expected and one that has been filled with surprises and delights. Life is not the same after something like this, but it can take you on an amazing new path.
HANNAH JOYNER is an independent historian who lives in the suburbs of Washington, DC. She is the author of From Pity to Pride: Growing Up Deaf in the Old South and the co-author of Unspeakable: The Story of Junius Wilson.
Highlighted in Frontispiece Summer 2014 – Volume 6, Issue 3
Summer 2014 | Sections | Doctors, Patients, & Diseases