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Social Media Summit Scholarship Essay – Wendy Station

Posted by @joycegroenke in Brain & Nervous System, Aug 10, 2011

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 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.

Tags: Scholarship contest, Infectious Disease, mental health, encephalitis, sarcoidosis

good-wife, arlenejohnson, Rcay and 65 others like this

Posted by @torilaye, Aug 10, 2011

I write this reply with tears of pride in my eyes for you! You have come so far and with such a selfless heart that is focusing on how you can help others. You are truly an amazing and inspiring woman. I hope you get the opportunity to attend the conference.

bunnybean, bdennis, kate and 9 others like this

Posted by @caringincanada, Aug 10, 2011

This is a woman with both the determination to rise up from this illness and the vision to lift others others along the way. She has given patients and their families worldwide somewhere to go to seek information and support and a place to share their stories and successes. The world needs more Wendy's.

Bobby, KellysMom, Etta45 and 3 others like this

Posted by @clicquot, Aug 10, 2011

Who can so softly bind up the wound? Wendy Station. Her outstanding, selfless work in running Encephalitis Global, along with Ingrid Guerci, has provided an incomparable community in which those of us affected by encephalitis can interact with one another. Not only is Wendy a patient-advocate, she has helped many of us become our own advocates. We are truly more empowered by her work.

bunnybean, kate, Big E and 8 others like this

Posted by @encephgroup, Aug 10, 2011

I am hoping that Wendy gets to attend this conference. Wendy does so much research for Encephalitis Global and reaches out to help survivors and caregivers. When someone has a question she will search the internet for answers. She and I have been trying to raise awareness within the medical community for over 10 years and I am hoping that by her being able to attend this conference, her voice will finally be heard. Thank you all in advance. Ingrid R. Guerci, Tarrytown, NY, HSE 12/95 (I was 45 years old)

bunnybean, kate, Big E and 8 others like this

Posted by @shaney, Aug 10, 2011

Wendy's true selflessness to help other survivors and their families through the havoc that Encephalitis causes when touched their lives is boundless. Not only did Wendy find the inner strength to pull herself through the physical and mental turmoil Encephalitis caused, Wendy has devoted herself completely to other patients world wide and is the voice for those who cannot be heard. Wendy has my vote to attend the Social Media Summit and she will always have my love, admiration and respect. How blessed I am to still have my big sister and how proud I am of all the hope and support she continues to give to others every day.

bunnybean, kate, Big E and 9 others like this

Posted by @frbobbylee, Aug 11, 2011

Wendy works tirelessly, as she has for 10+ years, to help those impacted by encephalitis. She has helped create and maintain a community of understanding, support and encouragement for those who are fortunate enough to survive... helping the ignorant find answers and the faint-hearted find hope and hold their heads high. Through her work, many have been brought out of isolation into a virtual community of others who understand encephalitis and its aftermath. Wendy's work would only be enhanced should she be given the opportunity to attend Mayo's Social Media Summit in October. I vote that she be given that opportunity! 🙂

bunnybean, bdennis, kate and 8 others like this

Posted by @georgeg, Aug 11, 2011

I am hoping that Wendy gets enough votes to attend. She has done so much to raise awareness of all types of encephalitis and she an my wife are officers of Encephalitis Glboal, Inc. More doctors need to be aware of the early symptoms of this illness so the patients can be diagnosed faster and help to avoid a lot of the permanent residuals. Go Wendy Go!!!

bunnybean, kate, Big E and 8 others like this

Posted by @nicnelson, Aug 11, 2011

Wendy's brainchild - Encephalitis Global - has been a lighthouse in the storm for me as I struggle with SREAT (Steroid Responsive Encephalopathy Associated with Thyroiditis). I can't bear to think how I would cope with my situation without the support of the Encephalitis Global community, where I find support, encouragement, links to information, and perhaps most importantly, a place where I can connect with people who understand the far-reaching impacts of encephalitis/encephalopathy, and who stand ready to reach out with a helping hand to those who struggle with these diseases, whether patients or caregivers. I hope Mayo will recognize Wendy's ongoing work to further a greater understanding of encephalitis in the larger community, as well as her work to alleviate the suffering of patients and caregivers, by awarding her a scholarship to attend the social media summit.

bunnybean, kate, Big E and 8 others like this

Posted by @jerseagal, Aug 11, 2011

Wendy has tirelessly worked to help create and maintain accessible lines of communication between those of us who have been effected by Encephalitis and the medical community , news media, and most importantly each other. Medical science has lots to learn from our shared experiences and adaptive and self-rehabilitation methods. Wendy has opened a door into the post-E world. I hope you open the door for her for the benefit of all of us.

bunnybean, kate, Big E and 8 others like this

Posted by @windy, Aug 11, 2011

"Wendy is our encephalitis spokesperson please open the door for her"

bunnybean, Big E, Bobby and 5 others like this

Posted by @beverlypropp, Aug 11, 2011

Wendy, you are an inspiration to all of us.
When you got sick it was devastating and your recovery was long and most of your recovry was done by helping others.
Wendy realized there was not alot of support for others so got on the computer and started Encephalitis Globel for families and other victims of this illness.

I watched her work grow and grow and realized that no matter when I sign on (night or day) Wendy was answering or asking questions. I believe that Wendy as a giving person and the support she and encephalitis global has done for others is well deserving of this scholorship.
Love you and very proud of everything you have done and become.
your cousin Bev

bunnybean, kate, Big E and 8 others like this

Posted by @encephgroup, Aug 12, 2011

Wendy is the best and she deserves to win. Do what I did and forward this to everyone in your address book, explain why and ask them to vote for her!

bunnybean, Etta45, kate and 7 others like this

Posted by @cjmorr06, Aug 12, 2011

Wendy has done an amazing job at pulling together a forum where survivors and care givers can share and learn and support. I don't know what my husband and I would have done without the support we have received here. Wendy has helped create a "place" like no other to share and feel safe and be understood. Should she be awarded the scholarship to the Mayo Social Media Summit she would come home with new ideas and ways to enhance the "connecting" that she was been working at all these years. I vote for Wendy!

bunnybean, bdennis, kate and 8 others like this

Posted by @maryf, Aug 12, 2011

My son survived Herpes Encephalitis in 1994 at the age of 17 months. He has made lots of progress with the help and support of Wendy and Encephalitis Global. Wendy reached out six years after my son had E. I didn't realize that there were other survivors as I had been told this is a rare illness and very few survive. God is Good! Wendy and Encephalitis Global have opened many doors for us with regard to therapy, life goals, and friendship. Wendy is a wonderful teacher and mentor to all who survive E. Thank you Wendy for the knowledge we have gained thru this wonderful organization,.

bunnybean, bdennis, Etta45 and 8 others like this

Posted by @wendysmom, Aug 12, 2011

What an amazing journey this has been, watching Wendy recover, then taking it upon herself to educate herself on encephalitis. A decade ago there was nowhere for us to go for information. Now patients and caregivers can reach out to Encphalitis Global and get the help they need so badly. Wendy works tirelessly, calming peoples fears seven days a week when needed. She has earned her wings here on earth and has only just begun . We, her parents are so proud.

bunnybean, MichelleKlein, bdennis and 11 others like this

Posted by @etta45, Aug 12, 2011

I am adding my voice and to support Wendy's request for a chance to attend this conference. She has spearheaded a forum that has been a life and sanity saver for so many of us as we walk through the after effects of encephalitis. She reaches so many people through the use of Social Media and the Encephalitis Global site. The opportunity to attend the conference would serve to strengthen her knowledge and skills in this venue.

bunnybean, bdennis, Etta45 and 8 others like this

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