The Bell’s (Palsy) Are Ringing, Part 2

Welcome back.  Thank you to everyone that reached out to say they had no idea, or to make sure I am doing ok.  It is also amazing how many have their own stories to share.  It amazes me every time.
This week is the conclusion to last week’s story.  If you missed it, please check out Part 1.  

It had been 7 days since my attack of Bell’s Palsy had started.  I didn’t know it at the time, but the worst was past me.  While I couldn’t move anything on the right side of my face, it hadn’t gotten any worse since the 4th day.  It’s like those dreams when you are trying to run but nothing happens, except this is with your face.  I returned to work.  Everyone was curious what had happened, wanted to make sure I was ok.  I didn’t want to talk to any of them.  I was not fully aware what my depression looked like yet, but I was pretty deep into it now.  I was wondering how I was supposed to do all the things I had wanted to do with only half a face; would never act again, never want to talk to people.  How was I supposed to get a job with this kind of face.

All of these concerns were secondary to my really big concern; I still had a 14 day deadline.  I just needed some kind of movement.  Every night I would stare into the mirror, focusing on my right side, and trying with every fiber in my being to make some movement.  I would strain until I cried.  For 8 days I did this and nothing happened.

Until that 11th day.

Every day I stared in the mirror, trying to smile.  To move my cheek.  To blink.  To smile.  I tried so hard I thought I had almost forgotten what it felt like to move those muscles.  Then it moved.

It wasn’t much, just the smallest, most wonderful, flex you’ve ever seen.  I did it again, just to make sure.  With a huge effort, I could make a small movement, barely a tic, in the middle of my right cheek.  I watched it one more time.  I asked my wife and father, who was visiting to help us move, if they could see it.  They could.  11 days, and recovery had started.  It continued from there, in small little steps.  There were irritating parts, to be sure; my right nostril would begin to feel like someone was tapping it, I would get a sudden pain in my right cheek, or my eye would become dry and scratchy.

As I continued healing I noticed a few weird effects.  The first, and most comical, was my eye would begin leaking when I ate.  As if I was salivating out of my eye.  Which, come to find out, was essentially what was happening.  Often, when someone is experiencing issues with the nervous system, a bizarre series of secondary issues, or sequelae, will follow.  This is due to a miswiring of the nerve with the muscle.  How does this occur?  Great question.  The simple answer is, that it just does; it can often occur just because the nerve is trying to heal and gets confused on where it should go.  The nerve that was supposed to go to my salivation gland had instead gone to my lacrimal gland.  But hyperlacrimation (which has several names, my favorite being Crocodile Tear Syndrome, which I think is unfair to crocodiles, as they almost never cry when they eat.) wasn’t the only sequelae I developed. I also discovered that my eye shuts when I try to smile, my cheek tics when I shut my eye, and I experience a roaring in my ear when I close my eyes, which makes it just a joy to try to sleep.

The process of trying to recover from this is still continuing; I found that massage helped me to recover a ton of movement, that practicing things like drinking with a straw in the middle of my mouth, puckering, has helped.  That swishing water in my mouth is best practiced in the shower.  That as much as I talk about it, I am terrified of acupuncture.  I also discovered that depression is made worse when you feel like you’ve lost yourself.  After we moved, I spent six months unemployed, mostly because I was afraid to go get to interviews and be rejected.  I didn’t want to talk to people.  I was embarrassed because this thing I use to communicate and convey meaning, was only half working.  But life continues and things get better.

After six months, my confidence had improved to where I did feel like I could go to an interview.  I ended up with a great job, and wonderful friends.  I still have the weird secondary issues, and probably always will.  I still have issues forming percussive sounds, the “P’s” and “B’s.”  Almost no one notices right away any more.  I still have to put drops in my eyes, especially when it is cold out.  My face gets tired after long days, and it still hurts sometimes.  I also live in constant fear that it is going to happen again.  No one is sure what causes it, but they do know that an attack increases your chances of it happening again.

Where recovery is now. I've come a long way, baby.

Where recovery is now. I’ve come a long way, baby.

This is just one more thing that is unique about me.  One more part of the puzzle.  There are moments that I realize it is affecting me; my face hurts or I catch someone staring a little too long.  Mostly I notice that it isn’t my smile any more, that my eye isn’t right and my mouth isn’t coming up like it should and that my cheek isn’t as rounded as it should.  I notice these things, but others don’t.  They see someone smiling.

And that’s why I wanted to talk about it.  After three years and a million miles of recovery.  After depression and therapy and work.  After finding out more about myself than I thought something like this would bring, I wanted to tell people about it.  I wanted people to know that scary things happen, things outside of our control.  Things that we never expected or never wanted, can lead us to places we needed to go.  Because you are not alone in this world.  The more we think we are alone, the more the world will show us that we aren’t.

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Peace for Paris

Paris.

I have had a love affair with Paris for as long as I can remember.  F. Scott Fitzgerald.  Hemingway.  Toulouse Lautrec.  These are the characters that fill my head.  I always imagined living on the Left Bank, La Rive Gauche.  Of getting up at sun rise, watching the sunlight glitter over the rooftops, drinking lattes and eating perfect pâtisseries.  In the afternoon enjoying wine and baguettes, a wonderful dinner.  Writing poetry and falling in love.  These were the pursuits I dreamed of in my Paris.

My Great-Grandfather was born in the Alsace-Lorraine region of France.  It is so close to the German border that he told stories of how often they would be traded back and forth.  He came in the United States just before the First World War.  I have a picture of him; a good looking young man next to a biplane, looking gallant and brave.  This is my image of what bravery looks like.

France.  And bravery.  Not often those words are put together in this modern world.

The events of tonight make me feel scared.  It makes me scared for my life and my family’s safety. For my son’s future. It makes me angry.  Angry that the darkness threatens to envelop this world.

It makes me sad.

But it will not beat me down. It will not break my belief in humanity. We are incredible beings, limited only by our own thoughts. I believe in the goodness of people. I believe that humanity is better than this evil.

Today, we are all French.  Today, we are all brave. Today, we are all human.

We will win.

The Bell’s (Palsy) Are Ringing, Part 1

The day started like every other day.  I was the opening lead for the Disneyland Monorail, so it started early; 6 am as I look back at my calendar.  It was a crisp early December morning, the kind in Southern California that make you think that just maybe, this year will be an actual winter.  It never is.

Myself and a friend on Oct. 30, 2012.

Myself and my friend Shayna.  This was the last picture I could find prior to my attack.

The night before I had felt like I was getting an earache, and it hadn’t really improved by morning.  If anything it had gotten worse.  By 8 am I was experiencing considerable pain in my right ear.  I called my doctor’s office as soon as they opened, and was able to get in at 9 am.  I left work early.

On my way out, I ran into a friend.  We hugged and laughed for a minute, and as I walked away I smiled.  That’s not interesting, I smile all the time; it covers my insecurities.  But this time was different.  This time the left side of my face…spasmed.  Like when your leg cramps up in the middle of the night.  The left side of my face pulled.  Hard.  My smile stopped.

I walked to my car and drove to the doctors.  I checked my rear view mirror a couple of times.  Everything was working just fine.  Everything seemed normal.  My doctor walked into the room.  She said that my ear looked slightly inflamed.  That it could be deeper in the ear canal than she could see.  That perhaps the spasm I had experienced was caused by the infection.  How right she was.

I left the doctor’s office not feeling much better, but at least with a prescription for antibiotics.  As I drove home I listened to an episode of the Nerdist podcast.  It is a funny podcast, and I laughed.  It happened again.  I looked in the mirror, and still nothing.  I walked in the door at home.  Looked in the mirror in the bathroom.  “Maybe…nah, just tricks of the light.”  I asked my wife, “Do you notice anything about my face?  Is it…behaving?”  I tried to not sound as freaked out as I felt.  She said it seemed like maybe the right side was swollen.

How my face looked at 2 pm

How my face looked at 2 pm

By 2 pm, I was noticing a distinct lessening of my ability to use the right side of my face.  I had started at 4 to get my doctor to call me, I had lost hope by 5 pm.  By 5 pm I was ready to use the word that I had been trying to avoid.  Paralyzed.

The next day I walked into the doctor’s office at opening.  I walked up to the counter and told the receptionist that I needed to see the doctor immediately.  She said that they were pretty booked today and that I could make an appointment for another day.  Then I said, “Well, my face seems to be paralyzed, so perhaps she wants to change her diagnosis from yesterday.”  Then I squinted.  Like the picture.  Except it was several hours later and it looked more like this:

How my face looked at 8 am the next morning.

How my face looked at 8 am the next morning.

There were no wrinkles on my right side.  My lip stayed horizontal.  My eye was barely shut.  The receptionist inhaled sharply, pushed her chair back from the desk, and said, “Head on back.”  Thank you.

My doctor walked in shortly.  Same room as yesterday.  Same ridiculous posters on the wall.  Totally different feeling.  She explained that she assumed it was just swelling from the ear infection. That perhaps it was deep in the ear canal and that it was causing a reaction in the face.  But looking at me now, she was changing her diagnosis.  She looked in my ear, had me try a couple of movements.  Then asked me a couple of questions.  The end result: Bell’s Palsy.

Bell’s Palsy is medically defined as a form of facial paralysis resulting from dysfunction of Cranial Nerve VII, or the facial nerve.  This causes the inability to control the facial muscles on the affected side.  Bell’s Palsy is technically diagnosed by exclusion; if we get rid of everything else, it’s probably Bell’s Palsy.

At the time, studies had believed that there was a link between Bell’s Palsy and the Herpes Simplex virus.  So a round of antivirals and some prednisone, an anti-inflammatory steroid, was ordered.  It was also decided that I may as well finish the antibiotic I had started for the ear infection.  (note, Those studies have since been called into question.  The actual cause of Bell’s remains unknown.)

So, let’s sum up where we are in our story: I can’t move the right side of my face, I am on a cocktail of drugs that do not like my digestive system, and I am learning a host of things I never knew about the human body.  For example, do you know what
the facial nerve controls?  Because I do.   Intimately.  The VII Cranial Nerve controls:

  • forehead movement
  • blinking
  • nostril flaring
  • smiling
  • frowning
  • and, (this was particularly surprising) taste in the rear 2/3 of the tongue
Snapped this on December 7th, 3 days after the attack began. This was the worst it looked.

Snapped this on December 7th, 4 days after the attack began. This was just about the worst it looked.

It got really weird over the next few days.  It also got really depressing.  I was too embarrassed to go to work.  I wasn’t able to blink.  I had to manually close my right eyelid and then I could keep it closed.  But then I could hear a low rumble in my right ear as my muscles fought to hold it there.  Eating was difficult.  Drinking was next to impossible.  So, I did what any self-respecting guy would do; I went home to my mother.

Really we went up for the Vine St. Showcase, a Christmastime tradition in my hometown.  We went originally to see family and friends, enjoy the beginning of the holiday season, and to see our dogs.  But for me, it was a chance to get away and try to escape what life had become.  It had been 4 days, and it was only getting worse.

I had spent a lot of time looking up information about the condition I was now living with. I found that almost every study agreed that the sooner you regained movement, the higher your chances of making a full recovery.  The magic number seemed to be two weeks.

The race was on.  10 days and counting.

Click here for Part 2.

Two Weeks

My blog informs me that it has been 15 days since I’ve posted.  So that is another two week gap.  Looking back across my posts there are several of them; every one of them were during an attack.

I hate feeling this way.  Feeling as if getting out of bed is the biggest hurdle of the day, then realizing that I have to go to work and talk to other people.  It just makes me feel overwhelmed and exposed.

Really, the worst feeling is that I’m letting people down.  Whether it is my family or my friends, the people I work with.  I expect myself to be better than this, to be stronger.  To be able to think myself out of this emotional drain.  But I can’t.  My brain is broken.  Thinking myself out isn’t an option.

I am fortunate.  My case is usually not severe.  I have a support network of family and friends.  I have a creative outlet that I can let off steam, and a dog that knows when I’m having a rough day.  I have options.

Next month I am meeting a huge inspiration.  She is broken and wonderful and brilliant and a hero.  She has shown me that it is ok to be like this.  She has shown that honesty about the conditions we live with can be freeing.  That the disease doesn’t have to define you.  She is also a damn fine writer.

I will continue to try to do better.  I will continue to try to post once a week.  It’s good for me.  Besides, you never know who needs to hear it.

Until next week, be kind to each other.