Editor's Note: This is an entry in our Scholarship Contest for Patients and Caregivers to attend the Mayo Clinic Social Media Summit Oct. 17-21 in Rochester, Minn. See this post:
for more details on the contest, and please cast your votes by liking or commenting on the candidates you think would be best.
Here is Wendy Station’s Essay:
On a sunny April morning back in 1999, I sat down at my desk in our local municipal government offices for the very last time. I had been trying to shake a headache all morning. Finally, I told my co workers that I would have to go home. That’s the last thing I remember for the next four weeks. I do not recall driving home. I do not recall being miserable to my family over the next few days. And… I do not recall my own husband taking me to our local hospital’s emergency ward and telling them, “something just isn’t right about Wendy.”
I was diagnosed with Herpes Simplex Encephalitis (HSE), a progressive inflammation of the brain. I was whisked into treatment and my life was saved. Meanwhile my husband and our family doctor had very little success as they searched the library and the Internet to learn more about encephalitis.
Once discharged after four weeks in hospital, our problems multiplied. At the age of 44, my parents would babysit me each day 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 the drawer where the spoons were kept. This was just one piece of knowledge that I had to relearn. One of hundreds.
Due to the impact of encephalitis, I am now legally disabled.
I started a website in 2000 with the goal to reduce the endless searching for information for future families touched by encephalitis. I am co-founder and President of Encephalitis Global, Inc., a USA nonprofit organization. We are currently active on Facebook as well as YouTube. I do have a Twitter account, but seek to learn and understand more about using Twitter and blogging to the best benefit. Our interactive Inspire forum has over 1,200 members worldwide and exchanges more than 300 messages posted weekly, making us the most active encephalitis forum in the world. We welcome on average five new members, every week. The forum offers practical advice, links to professional medical information and words of simple unadulterated compassion. I have testified to Congress in Washington DC on the topic of the impact of mosquito-borne encephalitis. Encephalitis Global is included as a telephone contact for encephalitis information on the National Organization for Rare Disorders in the USA.
I attended the first annual Encephalitis Symposium at the Johns Hopkins Encephalitis Center in March 2011 with my friend, organization co-founder and HSE survivor Ingrid Guerci of New York.
More recently, I published an article titled “A community lifts up a priest in need” on the e-patients.net blog offered through The Society for Participatory Medicine.
The social impact of encephalitis is alarming. Over the past decade, members of Encephalitis Global have joined us from so many walks of life: a fiancée, heartbroken that the loved one to whom she is engaged really does not remember her or the promise that they shared; a man, furious with encephalitis and the fact that, now, his spouse is the family’s sole breadwinner; school children who now face their education with increasing frustration as their peers move ahead and leave them behind; even a farmer, who can no longer return to his fields because of his impairments.
One member describes Encephalitis Global as “…a community of understanding with which I can share my frustrations and ask my questions. Here I get real, honest responses from people who have compassion and yet have ‘been there and done that’ with respect to this hideous illness. There’s nothing like connecting with someone who has survived encephalitis.”
Thomas Jefferson once said, “Who then can so softly bind up the wound of another, as he who has felt the same wound himself?” I strive daily to share information and support online. I would be proud and honoured to attend the Mayo Clinic Social Media Summit to share my own experiences and to learn more about social networking.