At a Brain Injury Conference, Encephalitis Survivor Searches for Understanding Submitted by: Encephalitis Global Inc.
Why is encephalitis, an acquired brain injury, not recognized by most brain injury support groups in North America?
I recently attended the 21st Pacific Coast Brain Injury Conference in Vancouver, Canada. Attendees included survivors, family members, healthcare professionals and researchers. As I walked around the conference held at the Sheraton Vancouver Wall Centre, I was wearing my Encephalitis Global lapel pin and handing out encephalitis information pamphlets to these professionals. I searched in vain for discussion of the acquired brain injury called encephalitis. I was responded to with courtesy, but little interest.
One keynote speaker at this conference was Greg Goldberg, a brain injury survivor and author of, "The Organ of Intelligence." I exchanged emails with Mr. Goldberg after the conference, expressing my interest in speaking in a style similar to his own. After sharing the text of my earlier speeches with him, he said they were inspirational and educational. "Your personal story with encephalitis made me aware of the illness with a good insight on it debilitating factors and how it has altered your life," Goldberg wrote.
As I walked through the conference, I thought back to when my husband and I did a presentation to a pre-med class at Simon Fraser University in Burnaby, B.C., the students were amazed. One student told me, "But you look OK. You must be OK!"
I also thought back to a discussion with about the University of British Columbia medical student, who told me that the topic of encephalitis takes up only a half-page in his textbook.
If these students could learn more about the impact of encephalitis, more research and education could be done on proper and swift diagnosis. A wider understanding by the brain injury research and support community is critical for the many encephalitis sufferers and those who will contract encephalitis in coming years. (In the USA alone, the CDC reports 10,789 cases of mosquito-borne neuroinvasive disease since the year 2000, representing four types of encephalitis: West Nile, Saint Louis, Eastern Equine and California Encephalitis.)
Inflammation of the brain can result in obvious physical effects, but impacts socially as well. Consider a fiancé, heartbroken when her intended really does not remember her, or the promise that they shared. A man's anger with himself when his wife has to assume the role of sole family breadwinner. Young people, who now face their education with struggle and frustration as their peers leave them behind. Or even a farmer, who can no longer return to his fields.
When I was diagnosed with herpes simplex encephalitis in 1999, I was whisked into treatment at Lions' Gate Hospital in North Vancouver B.C. and my life was saved. Unfortunately, many people aren't swiftly diagnosed.
At home, my family searched the library and the Internet without much success to learn more about encephalitis.
After three weeks in hospital, my husband brought me home for two hours to enjoy dinner with my family. I sat, stared at the food, ate a few bites, and then said to my husband, "Can you please take me back now?" I felt frightened and alone. I knew that I was expected to do more, to do something. I just couldn't figure out what that "something" was.
Once discharged from the hospital, problems multiplied. My parents were babysitting me as my husband went to work, and our children went to school. On that first morning home, I was seeking a spoon to stir my coffee. I went searching through a pile of newspapers, asked the dog, and then checked in the freezer. As I was heading outdoors in the rain to search the backyard, my mother had to show me where the spoons were kept. This was just one piece of knowledge that I had to relearn. One of hundreds.
I have worked to raise awareness about encephalitis for more than 10 years, creating Encephalitis Global, Inc. www.encephalitisglobal.org in partnership with Ingrid Guerci, another encephalitis survivor who lives in New York. Our aims are to share information and support between survivors, caregivers, loved ones, to raise awareness among relevant professionals and the wider public about the condition and subsequent problems, and to promote research into encephalitis. And most of all, our organization exists to let those survivors know they are not alone.