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.
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.”