Success? Hmmm. Are we measuring in miles or inches? In the interactions I’ve had with hundreds of survivors, success looks different from person to person even though survival looks similar. Regardless of how we acquired encephalitis … West Nile, auto-immune disorder, Herpes, Lyme’s, etc. the outcomes are similar. Memory loss, extreme fatigue, speech disorders and mostly, well, identity loss. How do I get back to who I used to be? And interestingly, what DOES success look like?
Some of it is relevant based on the severity of damage or how recent the onset. One thing that stands out in those citing “success” is both attitude and sense of humor. I recently asked a few “E buddies” what success looks like to them post encephalitis. I wanted to share a few notable journeys of success in a series … the first being Nicola.
I had the fortune of being paired with Nicola Nelson, now Executive Director of the Hashimoto’s Encephalopathy SREAT Alliance (HESA), in 2011 at a survivors’ conference where we were to share each others’ stories. At the time, Nicola largely relied on a wheelchair, fought seizures and forced her way through speech impairments, among other challenges. She was only 1 year post onset.
After a successful career as an attorney, life looked quite different to my newfound friend. Her perspective on “success post encephalitis” is one of humble pie, grace and giving. Couldn’t help but share her story.
In the words of Nicola … “Like most people, E changed my life forever. It stole my career, my ability to remember daily events, and even my ability to speak normally for several years. It re-routed the path of my life, and made it impossible for me to drive or travel alone. It jumbled my judgment and crumbled my sense of self. It slammed the brakes on the life of this go-getter attorney and forced me to sit. Just sit. And just be.”
Even though I didn’t know Nicola before encephalitis, there’s a dash of daring in her smile, an abundance of knowledge in her gaze and a quest for achievement in her style. Being “forced to sit” must have been her greatest feat in my mind.
She continued, “It taught me what it means to be helpless, and to be tenderly cared for by a loving husband. Unable to communicate clearly, it forced me to stare into the faces of my children and suddenly, for the first time, truly recognize the depth of their love.
Now, going on five years from my diagnosis, encephalitis continues to rain down blessings upon me that I could never have imagined. I now get to watch the success of the non-profit organization (HESA) I formed along with a fellow encephalitis survivor. Encephalitis gave me the chance to care for my (only) grandchild and indeed to help raise her. It gave me the opportunity to garden to my heart’s content, and the time to talk every day with my elderly, widowed mother and thereby come to know a woman I never understood until encephalitis stopped by and changed my life.”
Nicola speaks of gifts that so few of us stop to enjoy. My experience was similar in that the business world demanded my worldly travels, 24×7 availability and high stress. Yet, I was forced to succumb to a different pace, a different me. So similar in our experience … and the appreciation for life after, albeit compromised, is so rewarding in the ways that we accept our new identities.
Nicola’s final statement was heart warming, “Success post-encephalitis? For me it’s savoring the joys of a simple life I might never have otherwise known. It’s being thankful every day for life, family, and especially the ability to talk – finally! – with my loved ones. It’s embracing and coming to love the new me.”
Well put, Nicola. And thanks for sharing your journey as well as becoming a leader in encephalitis advocacy. You are making a tremendous contribution to encephalitis awareness and the lives affected by this cruel illness.
As a side note, HESA published the first-ever book about Hashimoto’s Encephalopathy and will be publishing a greatly expanded and updated version of “Understanding Hashimoto’s Encephalopathy” this fall, which will feature interviews with top HE physicians and researchers.
Recovery doesn’t give all of us the fortune of tell our stories, raise awareness or help others. It’s heart warming when someone like Nicola is paying it forward. Her attitude is a choice. And it certainly sounds and feels like success.