|Most of a smile, most of the time.|
I was bit by a tick while working in the woods in April of 2010. By May 2010 I had Bell's palsy. My face regained a fair amount of movement within a few months (and was even loosing some of the droop by the time of the day 11 photo later in this post), but it was life changing all the same.
You know while you're enduring it that there are many aspects of life and people you will never see the same again. It's hard to see the light at the end of the tunnel.
It's hard to look back on that time. I was years away from knowing I had lyme, but there's part of me that thinks I always sort of knew. Or at least strongly wondered, while being told it wasn't a possibility. I was usually joking when I voiced it, though. Along my almost 4 year illness timeline, the Bell's palsy 'tunnel' was relatively short. But man, it's a heck of trench....a whole other world....while you're in it.
|Bell's palsy day 11 (May 2010)|
As I scrolled down the other posts in the Bell's palsy group, it brought back a lot of memories, as they were the types of headings I used to sift through every day, from the day my Bell's eye could handle it until I was out of pain and out of bed and not even taping my eye shut at night. And then continuing to sift through them well beyond that time, with all of the recovery questions you don't know you're going to have.
|My right eye still droops a bit in the cold, and my smile goes back to|
half a smile, even though it feels like a whole one.
Your eye is frozen open, your face droops and is motionless, your body becomes practically useless while the nerve recovers.
Everything hurts for weeks and weeks. You are too exhausted to consider much activity, and are advised against most forms of it so the muscles come back the way they are supposed to.
|Winter 2011 on an overnight with my girl |
scouts. Most of a smile.
Sound and light sensitivities are horrible from the start, but are unbearable when you try to rejoin the world. Loud talking in restaurants can be unbearable and even painful. A dish crashing or a dishwasher beeping can be extremely painful, and can actually cause pain that lasts for days. One of the worst sensations is the beep at some of the gas stations when you are done filling up. It's irritating enough if you are healthy, and so much louder than it needs to be at many of the gas stations, but with sound sensitivity the pain can last for days. I still avoid the louder ones.
But aside from the constant pain, and the fear that you will be one of many people that take 6 months to two years to recover, or one of the people that never recovers, is the realization that facial expressions are a disability some people can't get past. Even for a five minute conversation. Some people were so hostile in response to my lack of smile, or what they perceived to be a negative expression (because a half smile can be offensive) that I'd have to find a way to tell them that my face was paralyzed. To most people it was pretty obvious, but some people just took quick offense to what they thought they read on my face and didn't look any harder than that.
|My current smile. Summer 2013 Glacier National Park.|
With a lot of those relationships, though, you eventually realize that if Bell's hadn't killed them, lyme disease sure would have.
Which brings you back around to all the people that understood, and could even laugh with you about all of it. It never stops being sad, thinking about how scary it is or was for your family (especially if you have young kids, or a girlscout troop), but in my house we will always laugh about mom's pirate phase (having to wear an eye patch with a half smile, I looked very much like a pirate).
|Got my smile back in time|
for a good friend's wedding.
|By the end of the night my face was tired |
and not smiling all the way, but I couldn't
tell at the time and it just looks like I'm making
a funny face (which I kind of was).
My lawyer repeated, "because her face was paralyzed" each time he asked again how they would "know" my face was paralyzed. I tried not to laugh while my lawyer got slower and slower each time, and did so without being sarcastic or unprofessional. It was hilarious and impressive.
When I read the investigation report, it struck me right away when I got to that section of the report, that a sentence trailed off rather unnaturally into, "BECAUSE HER FACE WAS PARALYZED."
Seeing the words verbatim like that really struck me as funny, and still does. I was asked to make corrections if needed, and in my own copy I made that phrase all caps. I may have given it back to him that way, but I don't think so. It'll just always be a phrase with the power to make me laugh and I will always wonder what he was getting at.....I've never met anyone who could fake a partial facial paralysis, but I'd love to watch someone try.