12 life-changing letters: encephalitis

Encephalitis. What a mouthful of a word. Ever heard of it? I hadn’t heard of this 12-letter word until 6 years ago. When the doctor said it, I kinda shrugged, thinking “thank God it wasn’t a stroke.” His expression changed as he explained that encephalitis is a form of brain injury, quite similar to a stroke.

“Huh?!” He broke down the word for me … encepha = brain and itis = swelling, therefore encepha + itis = swelling/inflammation of the brain.

It also = life-time change. When the brain is inflamed, all sorts of damage occurs, impairing memory, vision, balance, sleep, cognition, taste/smell, ability to concentrate and well, I could list another 200 residuals that encephalitis survivors report, including personality change.World E Day.png

Why is it so little known? Well, there’s been little research to date and no celebrity endorsement of its devastation. Heard of West Nile Virus? You may not have known that it caused encephalitis in more than 60% of its survivors in the last 5 years. And of those adult survivors, only half had the mental and physical capacity to return to work. Handy piece of info left out of the media hype.

In honor of World Encephalitis Day, February 22, I urge you to share this post in an effort to raise awareness of this horrible illness that strikes 500,000 people each year, and 20,000 and rising here in the U.S.

Why? For each of the 12 letters of encephalitis, here are reasons:
1. 20% of patients die
2. It causes chronic neurological disorders
3. It leaves many families in financial ruin
4. There is no cure
5. It’s hard to diagnose
6. There is no specific treatment*
7. Most causes are unknown
8. Delayed diagnosis can impact mortality*
9. It can impact anyone at any age at any time – yes … you, too
10. Current hospital costs in the U.S. alone are $2 BILLION a year
11. Imaging is often inconclusive, sending some very ill patients home as “crazy” or “normal” when there are actually serious underlying issues
12. More than 65% of survivors have issues with relationships and/or social settings** due to changes in the brain

To my fellow survivors, here’s to you for celebrating World Encephalitis Day … we survived! With its challenges, understood. And to the caregivers and medical teams who provide outstanding care in the face of this chronic trial, we honor you … your patience, compassion and sacrifices. Thanks to the Encephalitis Society for putting World E Day on the map!


* If the etiology (cause) is the herpes zoster or varicella (chickenpox) virus, Acyclovir is very effective at preventing death if administered within the first 48 hours
** According to a 2012 Encephalitis Global, Inc. and Inspire.com survey/report from encephalitis patients: “Fighting Encephalitis: I’m Not the Me I Remember

What Is “Recovery” from Encephalitis?

When death stared me in the eyes 8 years ago this week, I never contemplated survival from encephalitis. I fast forwarded to milestones I assumed I’d miss … my son’s graduation, his career, his choice in who he’d marry. Being with my family during holidays. Traveling to new countries. Retiring.

If I were to survive, I didn’t consider the aftermath from encephalitis. I assumed it would be like, “oh yes … it was hell at the time, but I got past it.”

I never imagined meeting my healthcare deductible in the first weeks of the year … every year. As a healthy person before encephalitis, needing a neurologist, internist, cardiologist, and all the other –ists didn’t cross my mind.

life-preserver (3)On the 8th anniversary of surviving encephalitis, I’m at a crossroads of what “recovery” really means. As my symptoms improved for years, I assumed I was returning to the “old me” … energized, wanting challenges, capable of anything. But when I hit a wall of decline in the last year, I find myself trying to avoid defeat, wondering what “recovered” really means.

Do I have reasons to be thankful? Hell, yes!! I celebrate that I witnessed my son’s graduation. I cherish moments with family and friends. My travel is limited now, but I’ve crossed significant items off the bucket list. And I’m somehow maintaining my career, albeit with significant stress, fatigue and strain.

The crossroads? I feel like a lie every day. By medical definitions, I am a successful patient … employed, socially interactive, highly functioning … But I don’t feel like one. When family/friends ask how I feel, I change the topic. If I’m “recovered,” it doesn’t seem like I should have residuals that plague me … memory loss, fatigue, headache, blurry vision, aphasia, dizziness, unable to sleep without high-powered meds … the list goes on. I don’t think anyone without brain injury truly gets how much of a struggle it is to overcome “invisible” residuals every day, so I work extra hard to maintain my lifestyle and livelihood.

I remain perplexed in how to be true to myself without being a burden on others or discrediting myself. Does having 35+ residuals from this brain injury equal “recovery”?

In many ways, I have it together. I fool lots of people because the one part of my brain function that wasn’t impacted was speed of thought. I can cut corners because I can see around them. Yet as I prepare for yet another neurology visit next week, I am humbled by what my definition of “recovery” is or should be.

For fellow survivors, I’m interested in how you define “recovery.”

56 Years of Mistaken Identity Post Encephalitis

Warning to readers. This is a story of 56 years of a “mistaken identity.” A miracle, if I may proclaim it. In this fourth issue of a series on “success post encephalitis,” you might find yourself amazed by the resilience of the human spirit.

In November 2011, I had the momentous occasion to meet Carol Sues at an encephalitis survivor/caregiver conference. She was 58 at the time. It had been 56 years since being stricken by encephalitis, a brain injury. She fought seizures, mostly depended on a wheelchair or walker, spoke in 2-word phrases, lived in a group home and relied heavily on her sister to complete her thoughts while she anxiously shuffled postcards. I sought to understand her, but admittedly was too early in my own post-encephalitis journey to know how to bond with others in a way that held meaning.

Something I learned about Carol that year was that despite being a thriving toddler, encephalitis compromised her abilities, including balance, speech, expression and mobility. Doctors offered little hope after her illness, concluding, “She’ll never walk, talk or be independent. Might as well put her in an institution.” That was 1955.

Carol wasn’t allowed to go to public school. Continue reading

Success Post Encephalitis Vol. 3 – Memory

In this third series of “success post encephalitis,” I’d like to open by acknowledging some of the great comments that survivors and caregivers have sent in response to these stories. A few remarked that it took some pressure off the need to work so hard to hide the residuals. Others said it reminded thdreamstime_m_771088em to be thankful for the small blessings. For most, they accept that life is more challenging, but they have learned to appreciate at least a few things about their new selves.

Earlier this year, I had the opportunity to meet Chris Maxwell at the Encephalitis Global conference. Chris and I share a couple of roles … author and speaker, and on top of that, he’s also Director of Spiritual Life at Emmanuel College. Chris’ gaze explores the eyes of who he’s speaking to, as if looking for their meaning. His laid back demeanor that conveys a genuine caring for others is likely one of his ingredients for success.

When I asked Chris “What does success look like for you post encephalitis?,” he reflected on an occasion that is familiar to many of us. A friend, colleague or family member who utters Continue reading

Success Post Encephalitis – A New Identity – Volume 2

“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.

Wendy S 2015When 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, Continue reading

What Success Looks Like Post Encephalitis

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?Success Blog

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, Continue reading

When Words Don’t Come

“Still Alice” captures the dramatic nature of dementia in its recent release in theaters. Julianne Moore gracefully depicts the real-life trauma of forgetting and the unfortunate shame that accompanies that circumstance.

If years lend us the opportunity to grow older, most of us will gradually meet this tragic and startling experience head on.

As a patient advocate for encephalitis, I often have the opportunity to speak to doctors, nurses, caregivers and survivors about this illness — diagnosing it, treating it, living with it, caring for it and understanding its dramatic change in a person’s identity.

The difference between “Alice” and encephalitis patients is that it’s not gradual: it’s overnight. At only 38, my short-term memory was shot overnight due to encephalitis, a brain injury. And in these times of fortune when I find myself on stage to educate, words vanish. Even concepts.

Maybe it makes it real for thevanish audience. That this seemingly-has-it-together professional actually faces hurdles. For me, though, it’s a frightening experience. The closer I try to get to the word, the farther it gets. The feeling is that I’m being robbed of my credibility.

Regardless of how a person arrived at being “forgetful,” think about these things when words don’t come:

  1. We are reduced to humility when words vacate our minds. Be gentle.
  2. Please, please, please refrain from saying, “happens to me all the time.” This is unintentionally dismissive.
  3. Unless the memory-challenged person requests help filling in blanks, give us time or wait for us to ask for assistance. Suggesting words might actually take us farther from our original intention.

For directors Richard Glatzer and Wash Westmoreland, well done on unveiling the realities of memory issues in all their colors – harsh, tender, brave and even comical.