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.
Great article! As an encephalitis survivor, it’s very comforting to find others who have had similar struggles. I felt very much on my own for the first 27 months until doctors finally diagnosed me correctly. Encephalitis Global, Inc. has suddenly become a necessary part of my daily life as a source of encouragement and validation.
This is an outstanding article about a remarkable community. I thank Wendy, Ingrid and Father Lee for providing this account; I reply here to emphasize and give thanks for the power of this community.
Encephalitis Global is an excellent example of the power of a community to respond to others’ needs. This community provides the guidance from the initial shock of realization that one is not what one was through the slow recovery of function within the boundaries of the “new normal” and on to integration into a new daily routine.
Those of us that have been through this journey are immeasurably helped by Encephalitis Global and the interactions with its founders and members. My personal experience is one of constantly uncovering new avenues of hope, brought to me by the community. I am at my current functional level in no small part because of this community, and I am forever grateful for that.
The “virtual hands” of Encephalitis Global are a model of community action and deserve to be emulated by other social communities. Although I would never suggest that others be smacked by encephalitis, the model created and followed by this community is without compare and others would be well served by emulating this community’s actions.
Thank you so much for the work that you do! I cried reading this compassionate post and am grateful to John Novack who directed me to it. I am contacting you from Ireland (how’s that for global reach!) where I am helping care for my 75 year old mother who was diagnosed with encephalitis in March this year. My elderly father is heartbroken that his life long companion is not there for him the way she has been all their married lives and I am heartbroken that my beloved mother is so ill. I am trying to hold onto the hope that she will get better, even though the signs aren’t present at the moment. Marie
I’ve added this on my own site to my very-baby-steps list of patient communities.
Hello to all.
I’m stuggling and confused with my mom’s recent battle with HSE. She is a very young 60, and although she also has MS it has been managed for several years. Prior to July 20th 2011 my mom was flying/or driving to Florida to visit me and help me my hunsband with our 3 teenage boys. Her husband found her slumped over the couch when he returned home fomr work. She spent 6 days in ICU and they didn’t think she would pull through. She made it through. But my “Mom” is not my mom. And I can’t seem to get answers. Her symptoms are presenting like dementia. I pulled up one of those questionaires and just about everything on the questionaire I could answer. But, as another poster said it’s an invisible disease. She “Looks” great. You talk with her for 10 minutes and then you understand. Are they supposed to do MRI’s regularly? How can they test to see if the swelling is gone? Can this illness bring on Dementia? Also, insurance and proving she needs assistance is another battle in itself. Anyone have suggestions or answers? Thanks
I am very glad that Father Bob is getting all the support he needs. I studied at Glasgow and had achieved my BD after I had encephalitis at 5 months old and the church I am in just wants me to go to service after service doing nothing. My minister is aloof and had not made any effort to really get to know the congregation, but I have a natural ability to speak to people and put them at their ease. I have put a case to my Presbytery about my minister having a prejudicial attitude towards me and he is obsessed by speaking against political correctness. I would be interested in what Father Lee thinks. It is ironic that Father Bob has the same name as the great Robert Lee Liturgist who started the Scottish High Church Movement in the 1860s and published a book or magazine called the Euchalodian as he was the first Presbyterian minister to formally write prayers based on liturgies like the Apology of Hippolytis which is a purer and earlier liturgy than the Anglican one. The Scottish High Church Society meets at Grey-friars kirk where the wee dog was. Even with my degree I feel my minister dismisses me and I do not want to go from church to church which I find would be insecure of me.