Dec 1, 2013

Bell's Palsy and Lyme Disease ~ "BECAUSE HER FACE WAS PARALYZED"

Most of a smile, most of the time.
Bell's palsy isn't always caused by lyme disease. It can occur separately, but it is a major indicator of lyme, and in my case it was the most blatant symptom early symptom during my acute phase that should have been taken more seriously.

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)
I was just briefly side tracked on MD Junction, wondering how many people in the Bell's palsy group have also been diagnosed with lyme. And there just-so-happened to be a recent post at the top of the list about lyme and Bell's palsy, so there were people diagnosed with lyme and people wondering about it.

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.
Bell's palsy is caused by swelling of the 7th cranial nerve, from lyme, or the chicken pox virus, or other known and unknown pathogens or factors.  This causes temporary (in most cases) facial paralysis on one side.

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.
The longer interactions much farther down the road are the ones that were hardest.  People you knew before that don't respond well to your new expressions, and don't believe your explanations about what they do or don't mean.  It's so hard to explain in the first place, but so hard to fathom why they don't accept your explanations.  When you pair that with the irratability that accompanies lyme, or what you often don't realize sounds like irritability, some relationships don't ever recover.



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.
Funniest of all though, for me, is an event that sounds less than funny at first.  And it may only be funny to people who've been through some of what I have, or who know more of my story.  But during my EEO case, the government took back the donated leave I'd recieved during Bell's palsy, saying I hadn't "proven" that I had Bell's.  I hadn't provided a letter to my bosses at the time of onset because my bosses hadn't needed one, and because they saw my paralyzed face.

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).
During the investigation phase, I was on the phone with my lawyer (located in Washington DC) and the investigator (in California) and he asked how my bosses would have known I had Bell's palsy if I didn't give them a letter.  I described the paralysis and the drooping, the slurred speach, the drooling, and the pain.  So he asked again, "but how would they KNOW you had Bell's palsy?"  So I explained again that they saw me during the paralysis.  After he repeated the question a few more times, my lawyer took over for me, stating, very simply and calmly, "because her face was paralyzed."  To which the investigator repeated his question.

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.

1 comment:

  1. This was really informative. I didn't know too much about Bell's Palsy before, only that Lyme patients can get it. Thanks for the post!

    ReplyDelete