“What does success look like post encephalitis?” This is the second article in a series of interviews with survivors. I only asked one basic question and it’s been fun to see how this experience moves each of us in a unique way.
When I attended my first Encephalitis Global survivors’ and caregivers’ conference, I met some incredible people. Wendy Station wasn’t just the first person I met at that conference, she was the first fellow survivor I got to meet. As if we’d known each other for years, her arms embraced me, welcoming me to this new family. Her genuine, thoughtful and fun demeanor quickly put me at ease.
We quickly shared our stories and I immediately wanted to emulate her passion to raise awareness, most notably to reduce the frequency of misdiagnosis.
Despite not knowing Wendy before encephalitis, it’s evident she was a firecracker. She worked for the local municipal government, guided young women on camping trips, taught courses, hosted foreign exchange students and was the classic mom whose home was “cool enough” that all the neighborhood kiddos gathered there with her 3 kids. And even though encephalitis may have changed her pace, it’s impossible to weaken Wendy’s passion for wanting to help others.
When I asked Wendy about success post encephalitis, she went down several meaningful paths that are telling about the nature of her illness, recovery and character.
“My successes started quite straightforward. After a month in the hospital and nearly no recollection of it, my family celebrated milestones such as …
- Not pulling the IV out of my arm in the hospital
- Having the energy and trust to take walks again with my family
- Learning how to emote again after a long dry spell of just existing, unable to feel cheerful or affectionate toward my own family
- Earning the right to be unsupervised again
- Accepting what I can no longer do, such as playing cards while socializing or teaching, and channeling energy in new activities”
My jaw dropped somewhat as I imagined Wendy, who loves her family dearly, unable to feel any affection toward them in the early days. It’s obvious she felt guilty about not being able to express herself, instead treating her spouse and children like she might a passerby.
“I remember some very low moments post encephalitis. The moments when my self-respect and self-worth were lower than zero. I would spend hours rocking and weeping on the couch, trying to keep myself from calling my husband to come home from work. Unfortunately, I was not always successful. It seemed that just surviving and continuing for another day was a challenge. My husband and kids kept the house and made the meals and in my personal opinion, I was doing nothing. In fact, I felt I was just nothing. At that time, self-empowerment was not a priority – just getting through another day was tough enough.”
Like many of us, Wendy’s social circle slowly began to evaporate of friends who just didn’t understand the aftermath of encephalitis and expected her to “get over it.” And of course, with low self esteem as part of her changed identity, saying goodbye to friends challenged her being even further. Wendy continued, “I was riddled with worry, fear and concern.” A dark place, no doubt.
“There came a time post-encephalitis when I wanted to do more. I was realizing that I couldn’t sit home all day every day.” Wendy’s tone shifted immensely as she recalled a new friendship that was born post-encephalitis. “It was very empowering!” Perhaps her first real experience in celebrating her new self, a true success. This also characterized a lot of our journeys … ones where the definition of ‘success’ stretches over time.
“I wanted to do more. A local charity was having a fund-raising 10k run, and the planning committee was seeking volunteers. I signed up two weeks in advance and was a bucket of nervous anticipation. I was assigned to a certain spot on the run route to offer bottles of water to runners as they passed by. As I stood handing out the bottles with a smile, each runner smiled back at me! Most said, ‘thank you!’ as they ran past. They were thanking me! I was so empowered, I was sorry when the day ended. I came home with a smile on my face. And the best thing was… not one of the people there knew anything about my encephalitis. They had welcomed me as Wendy. No one had kept an eye on me, monitored me or supervised me.”
As Wendy reflected back on that experience, it was clear that this fueled her passion to help others. Since then, she’s been one of the key leaders in establishing a global network of people affected by encephalitis. In fact, Wendy is the president of the board Encephalitis Global, which reaches 4,100+ followers and averages one new member every day. Her organization has touched numerous lives lost, challenged or temporarily wrecked by encephalitis.
So, what’s next Wendy? You’re not one to let grass grow under your feet.
“My next challenge still lays ahead,” she says, confidence level higher than ever since E. “My next project is writing an autobiography of my experience.”
Go, Wendy, go! And hats off to you for all your incredible leadership to raise awareness for encephalitis. Well done, E buddy!