Encephalitis: The Cone of Uncertainty

While we’re on the topic of hurricanes in the “cone of uncertainty,” let’s talk about how encephalitis (swelling of the brain) mimics this uncertainty.

  1. The unexpected will happen – we’ve been watching Dorian, and he’s quite the beast of destruction while moving at a snail’s pace, making everyone wonder if Dorian will strike them. Encephalitis? Also not predictable. There is no forecast to warn of us this life-destroying illness. Encephalitis can strike anyone…at any age…at any time. No predictive model is going to warn of our approaching “Dorian.”
  2. Preparing – with a hurricane on the horizon, you need to prepare…water for hydration, gas for evacuating, boards to protect your home and toys to occupy the kids. With encephalitis, there is no preparation. It’s not predictable. You’re fine and then … Whoa! Who deleted my memory? Why is the world spinning? Why does my head feel like it’s going to explode?
  3. Every day is unknown territory – the big storm has finally moved on… Except Dorian requires you to replace saturated carpet…repaint walls… repair drywall. Not to mention furniture and belongings that were left floating while you escaped from harm’s way. You don’t know what each day brings. But eventually, you’ll get everything back to normal. Yeah, right. Encephalitis, at best, can take months to reach the “new normal.” But for most, this a life-long battle without standardized treatment, without cure, usually without prevention along with numerous expensive healthcare appointments, without the knowledge, compassion nor insurance coverage…an uncertainty which makes an impacted life a challenge just to keep breathing.
  4. Disruptive to life – so the storm-damaged house repairs begin. And where do you live in the meantime?  A temporary location… far from work or schools… inconvenient because it is smaller…and it has none of your stuff. And like a hurricane, encephalitis is disruptive to life for the patient and all who care for them. Countless doctor appointments, trials of treatment, time off from work (for caregivers, too!), rehabilitation, sometimes re-learning the alphabet and sometimes adjusting to assisted mobility devices. Disruptive? Yeah … I’d say.
  5. Life isn’t quite the same afterward – although the renovated house from Dorian looks better than before, it lacks the familiarity of what “home” really was. Some neighbors vacated because they couldn’t afford to rebuild. Trees and other landmarks are gone, either trashed or carried into the ocean. And like encephalitis, most people are never the same again … can’t go back to work, restricted to a wheelchair, a life of migraines or limited speech or such severe auditory and visual stimuli that we wear sunglasses and noise-reducing headphones. Sad? Eh. Encephalitis survivors are tough and find their way, even if life is altered.
  6. The devastation isn’t always visible – houses with trees on the roof. Missing shingles. Cars upside down. Dorian and other hurricanes catch our attention and grab the heartstrings. But plumbing, air conditioning, swollen studs, non-functional electricity and contaminated water are not visible. Encephalitis? Well, it’s not quite visible unless there’s a cane, walker, service dog or other assisting devices. But even with those clues, it’s hard to understand what an encephalitis survivor endures. You can’t see our changes in blood pressure or heart rate. You can’t see our sleep disorders. You can’t fathom our vertigo issues or headaches. So picture us as the foundation of a house after Dorian or other destructive storms … while the house was flooded, every aspect of the house was altered. That’s what encephalitis does to the brain. While it’s inflamed or swollen, destruction is occurring…whether a tropical storm or a Cat-5 hurricane, the damage is real.

Encephalitis strikes 20,000 Americans per year. It is commonly misdiagnosed as flu, stroke, complex migraine or a psychiatric disorder. Follow or join Encephalitis411.org to “Fight Encephalitis Head OnTM!” Enjoy this blog? You might identify closely with more of this story in reading Brain Wreck.

Encephalitis411 and I wish those facing Dorian on the East Coast safety … from both life and housing damage.


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