SPM member John Novack, of the Inspire.com patient communities, submitted this guest post by Wendy Station about another online community — another great example of patients engaging in their care, supplementing the value they get from their medical professionals by using online connections.
“I feel cornered, at the end of my rope, trapped!” exclaimed Father Lee. “Is everyone cognitively diminished who has survived encephalitis?”
Father Lee posted that question recently to the online support community of Encephalitis Global, Inc. which I co-founded more than a decade ago. Father Lee was struggling with his relatively new life role as an encephalitis survivor. (Encephalitis is a rare and dangerous brain inflammation usually caused by a viral infection.)
Members of Encephalitis Global responded with practical advice, links to professional medical information and words of simple unadulterated compassion. Here, I thought, is a priest, who has ministered face-to-face with thousands of people in need–now struggling with his own anguish and despair. And here were people from across North America and beyond, reaching out with hands of support to him. Virtual hands, to be sure, but real support.
One member replied to him, “From our collective experiences, you are just doing too much, too soon. Prioritizing is difficult when so many other people need you, but you need to take good care of yourself.” Another noted, “Recovery from this disease requires that we pare down our life to the essentials.”
“The best we can do,” added a third, “is make accommodations for what we can’t do, and just move on from there. Things do improve as our brains adjust.”
Father Lee is an Episcopal priest in the US who last year contracted viral Meningoencephalitis (meningitis and encephalitis). He was hospitalized, in a coma, and his family told that it was questionable as to whether he would survive.
I myself contracted Herpes Simplex Encephalitis (HSE) in 1999. My family struggled in vain to learn more and understand what I was dealing with. Due to the impact of encephalitis, I am now legally disabled and spend my time sharing information and support with others. My friend and organization co-founder, Ingrid Guerci of New York, was touched by HSE in 1995 and left with some residual challenges. However, she was able to return to work, and spends time daily helping people touched by encephalitis.
Father Lee’s struggle to live the “new normal” is a situation we often experience with new members. There is still so much to learn about encephalitis–daily life “post-e” can be hell not just for the survivor, but for family and friends as well. For many, thankfully, there are support systems like online communities. The Web allows us to connect with others like ourselves as never before.
It’s not uncommon for newer members of the Encephalitis Global Support Community to ask how they should feel, and what they should expect post-encephalitis. Perhaps the most important lesson is that recovery post-e is measured in a two-year time frame – and continues past that date. Family members must be extremely patient as they watch their loved ones struggle to remember words, names, and abilities that came naturally pre-encephalitis.
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. Many encephalitis survivors simply cannot return to the multiple challenges of working full time.
I recently asked Father Lee, “What do you receive from Encephalitis Global?” He replied, “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 and then, also, survived the stumbling moves of so many in the medical community.”
A few days after Father Lee’s initial post, he returned to our online community to report that he was feeling a little better and, in following suggestions from fellow community members, had begun taking steps to reduce some of his work-related stress.
Thomas Jefferson once said, “Who then can so softly bind up the wound of another, as he who has felt the same wound himself?” These words describe the theme at Encephalitis Global. We are not medical professionals, but we are people who have previously experienced the post-encephalitis struggle. That experience is what gives us the strength and ability to help others, including Father Lee.
Wendy Station of Vancouver, BC, is co-founder and President of Encephalitis Global, Inc., a nonprofit organization. The online forum, operated in partnership with the company Inspire, has over 1,000 members worldwide and exchanges more than 300 messages posted weekly, making it the most active encephalitis forum in the world.