8: Learning to Live with a Label

8: Learning to Live with a Label

From Chicken Soup for the Soul: Recovering from Traumatic Brain Injuries

Learning to Live with a Label

A sudden bold and unexpected question doth many times surprise a man and lay him open.

~Francis Bacon

I’d waited only a few minutes when the doctor stepped into the room. She was as short as me, with large round glasses and thick wavy brown hair held back by the kind of clip my daughter would wear. She looked young, but I knew she had earned her place in the neurology department of the University of Colorado hospital through years of study and practice.

I watched as she picked up a manila folder and began to scan its contents. I read the label on the file and began to feel irritated. “Why is she reviewing another patient’s chart during my appointment?” I wondered. “Maybe the charts are switched and she doesn’t know she’s reading the wrong one.”

“Excuse me,” I interrupted. “I think you have the wrong file.” She glanced up at me, then at the file, “No, this is your file,” she said. I protested, “But that label says ‘epilepsy’, and I don’t have epilepsy.” She closed the folder and scooted closer.

“You are Joy, right?” she began gently, pointing to my name. “And some years ago, you suffered a traumatic brain injury, right?” Yes. She was right. In the spring of 1996, I had been the program director for the annual Youth for Christ staff conference. Early one morning, I was escorting guests to the ballroom for sound checks and, as I reached to open the large door, someone on the other side leaned on it. The heavy door flew open, striking me on my left temple, knocking me into the hallway.

I was unconscious for only a few seconds, and when I opened my eyes, I saw that the things I’d been carrying were now strewn across the boldly patterned hotel carpet. I remember thinking, “I need to pick those up. I need to get back to work.” But I was unable to move or speak.

Several friends hovered over me, their eyes betraying their concern. My first words assured them, “I’m okay.” But after a few questions resulting in the same answer, a wise friend asked a question to which my response of “I’m okay” proved that I was certainly not okay.

A few minutes later, I sat up and tried to talk, but was stuttering. I had a nasty headache, but when people around me asked if I wanted them to call an ambulance, I shrugged it off. “It was just a bump on the head,” I thought, as my pride overrode my better judgment.

I was too proud to admit that a “little” bump on the head could get in my way. I was also too proud of my work to step aside, letting other competent people take over. The program could certainly have gone on without me if I’d been wise enough to let it go while I went to the hospital.

Looking back, I now know those voices in my head weren’t healthy responses. And today, everyone involved would know better than to believe a person who has just been smacked in the head when she says, “I’m okay.” But in the mid 1990’s, everyone was still learning how to recognize and treat traumatic brain injuries.

When I returned to my home in Denver after the accident, I made an appointment with a neurologist who ordered many tests. She saw the contusion on my brain and prescribed appropriate treatments. I had medications for the excruciating migraines, I learned compensation strategies in occupational therapy, and I began speech therapy for the aphasia.

That was a new word for me: aphasia, literally translated, “non-speaking.” I had been an English major in college; I liked to write and I enjoyed speaking at conferences. So struggling with words was a new experience for me. Words had been my friends: creative words, expressive words, accurate words, many words! But because of the brain injury, words failed me.

Even after I recovered from stuttering, I struggled to find the correct words to fit a situation. I could think accurately about a concept, but I couldn’t speak the right word. I recall watching an injured bird in our back yard and saying to my husband, “How is that poor bird ever going to swim out of here?”

The doctor who treated me in 1996 was one of Denver’s best neurologists. She prescribed good methods for recovery and convinced me to wait another year to attend graduate school. She warned me, “When you do go to school, don’t expect great academic ability. Your brain injury will interfere with learning languages, and you will struggle with remembering dates and other details.” Eighteen months after the accident, I followed my inner calling and enrolled in the Denver Seminary where I would need to learn Greek and Hebrew and remember many dates and details.

I soon began to notice that every now and then, my mind went blank. These blanks were never long or severe, so I wasn’t especially concerned. Thinking I was cured from my brain injury, I assumed these blips were just part of normal aging and I never told a doctor about them.

I loved seminary! I stretched the coursework out over seven years, working in several churches and adopting two daughters during that time. Finally, in May of 2004, I stood on the platform graduating with my classmates. At our celebration party, a friend reminded me what the neurologist had said eight years earlier about lowering my expectations. Apparently, I had not followed those instructions very well because I graduated as the valedictorian and, in a stunning surprise, I also earned that year’s preaching award.

But my failure to deal with those little blank moments was about to catch up with me. Nine months after graduation, following complications for an unrelated surgery, my brain finally cried out for the attention it needed. I slipped into an extended absence or petit mal seizure and was rushed to the hospital. A week of intensive care and research into my history of head injury resulted in a more accurate word for those momentary blips in consciousness: micro-seizures.

I was referred to the neurology department at the university where, a year later, my new doctor walked into my life and told me the truth: that my brain injury had caused a condition that fell on the epilepsy spectrum. It’s just a label, but it is an ominous word. I’ll never know why no previous doctor told me about the label, or why I never figured it out in my own research. I’ve wondered to myself what would have happened if I had known about the label earlier. Would I have excused myself from working hard or might I have avoided trying things that were out of my comfort zone? Would I have limited myself by wearing the epileptic label?

Looking back, I’m thankful for the time that I didn’t know about the label on my file. I might have missed out on great opportunities. I’m also thankful that the doctor told me the truth at a time when I was ready to face my label, but not wear it.

~Joy Engelsman

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