It was a Friday morning in August 2000, just a few days before beginning my sophomore year of college (at a new school no less). I was getting ready to spend the day shopping with a friend. While putting on mascara, something strange happened. My left eye would not close correctly. It's rather awkward to put on mascara if you cannot blink and I sort of laughed. As I laughed, I realized that it wasn't just my left eye, but the left side of my mouth was not smiling correctly. What? I smiled again, on purpose. What is wrong with my face? The right side of my face smiled correctly, my eye crinkling as it always did. But the left side stayed strangely still. I ignored it, thinking I must have slept on it too much the night before. By suppertime I could not close my lips correctly to pull food off the fork and drinking from a glass became rather difficult to do without slurping or dribbling. I started crying and my parents asked what was wrong. I hadn't mentioned it to them yet because I assumed it was nothing and would be gone by the next morning.
My parents took me to the emergency room and the doctor there (thankfully) figured it out quickly. He told me I had something called Bell's Palsy, a "temporary" paralysis of half of your face (usually the left side, but it can be either). He told me not to wear my contacts (because I couldn't close my left eye) until it went away and sent me home with a gauze patch over my left eye.
Monday morning my Dad drove me to school. I wasn't allowed to wear my contacts and it had been years since the lenses in my glasses had been updated, so I didn't see much my first few days of school. I took a trip to the optometrist for some new glasses and my family doctor gave me a few prescriptions for rather strong (and pricey) antiviral medications. He also gave me a better explanation of what I had. Bell's Palsy (named for Sir Charles Bell, a Scottish surgeon who studied the affected Bell's nerve in 1821) is (usually) caused by a virus. This virus attaches itself to the nerve that runs from your brain, through a small tunnel in your cheekbone and then branches out to control the movements of your face. The virus attaches to the nerve just before or at the point the nerve enters your cheekbone and causes it to swell, cutting off sensation and movement of anything beyond that point. I can quite easily make the left side of my face numb by touching that place on my cheekbone. I've read that 1 in 5000 people will experience Bell's Palsy. If that statistic held exactly true, the city I lived in would have had 8 people who had at some point in their life had Bell's Palsy. Seven plus me. That's a really lonely statistic. That means there are no Bell's Palsy specialists and no Bell's Palsy treatment centers. Just my family doctor saying "Well, research seems to indicate that this type of medication and this form of treatment might help, but no one really knows for sure." This is not a comforting statement to a 19 year-old.
For the next 6 months I dealt with raging headaches on most days. At night I put a thick moisturizer in my eye which was basically the consistency of slightly runny Vaseline and taped a patch over it. I also got to take fun trips to a specialist for electro-shock therapy. They run a probe over specific places on the nerve and shock it to see if it's still responsive. Not fun.
During my first few days of classes I had expected a lot of questions, but no one asked. My Dad assured me that no one asked because they didn't know the difference. They hadn't met me before the onset of Bell's Palsy and so they didn't know that I wasn't even used to the new look of my crooked smile yet, and so I should smile like I didn't notice either, like it was normal. In some ways I wanted to be back at the private school where everyone knew me and would ask what was going on. In other ways I was relieved not to have to answer a million questions.
I have read stories in forums from people who have had Bell's Palsy and it went away in a week or a month. I was diagnosed around the middle of August and it was (I believe) November before I was allowed to wear my contacts. I walked down the hallway and into the newspaper classroom quite ecstatic to finally be wearing contacts again! No one in class had ever asked about my rather frozen face and so I didn't expect them to notice my lack of glasses, since I had purposely chosen small wire frames. But, within a few minutes, one of the sweet girls who shared the position of editor of the school paper mentioned that I had gotten contacts. I smiled, still rather crookedly, and said that I'd had contacts since Jr. High, I just hadn't been allowed to wear them because of a virus I had that affected that nerves in my face (that was easier than explaining the whole thing). The guy who had sat at the computer to the left of me the entire semester piped up, "You had Bell's Palsy, right?" My jaw must have hit the floor. No one ever knew what it was. He told me his sister had it a few years before. I had carried on a few unimportant conversations with this guy. Homework, movies, articles we were writing for the school paper that week. He had never once asked if there was a reason the left side (the side of me he sat on) of my face didn't move. In some ways that made me feel invisible. But with that statement suddenly I felt so much less alone! He hadn't asked because he hadn't needed to. He knew. Maybe they all knew.
Fast forward 11 years. I have most of the movement back in the left side of my face, though it's never fully returned to normal. I get headaches much more often than before. The left side of my face can often predict a change in the weather (from warm to cooler or cool to cold) and when I'm too cold or too tired I loose control of it and cannot close my eye. For years I knew when I needed to go to bed because the left side of my face would just stop moving. I don't close my eyes during prayer in church because it makes my eye water too much and if you ever notice me "winking" my left eye, I'm not really winking at you, it's just that something doesn't feel right when I blink normally and I'm making sure that eye gets blinked. There's also some fun ringing in my head when I laugh too hard or smile too long. I can get rid of the headaches, but nothing takes away the weird numb/frozen feeling my face still gets sometimes. Now that it's Fall and the weather is turning cooler it hurts more often, during the Spring and Summer I really don't notice it.
Want to know how it feels? Press the palm of your hand over the left side of your face with the heel of your hand at the corner of your mouth and upper jaw and the joints of your fingers close to your cheekbone and the corner of your eye. Push until you actually feel the pressure. Now try talking. Say the alphabet, your name, phone number, address, things you know well. How does it sound? Like you need to be in speech therapy right? I still talk like that when my "fash ish too cold." Drinking from a straw again was a big accomplishment for me. :)
The strangest thing about this virus, too me, was that I had never heard of it; but after being diagnosed, so many people told me about friends or family members who had it. There seem to be a number of pre-existing conditions which tend to lead to Bell's Palsy, but I had none of those. There's also some consensus that stress can trigger it, since I was switching schools at the time, that makes sense to me.
I'm not writing about this because I want your sympathy. Eleven years after my diagnosis and having regained around 95% of the movement in my face, I'm over the need for people to feel sorry for me. But the weather is turning colder and my face hurts, so I'm thinking about it again. Also, because I've never really figured out why God allowed me to have this. Maybe so I would learn to trust Him and His timing (I can be a rather impatient person). Maybe I'm supposed to share my story so you'll understand what Bell's Palsy is, and when you see someone in the mall or the grocery store who isn't moving half of their face, you can understand their pain just a little. Maybe you're reading this and you have Bell's Palsy. Please know that you are not alone! There are so many Facebook groups and online support groups dedicated to Bell's Palsy today. Those didn't exist 11 years ago.
Smiling was hard those first few months. It just looked so ridiculous! And it hurt. But my Dad was right. Keep smiling because people who don't know you won't know that your smile hasn't always been crooked, and people who know you will love you no matter what. Someday, you might even learn to laugh when the face in the mirror looks like this:
Instead of like this:
Yes, I really can control it (sometimes), I don't do it often because it makes it feel strange. By the way, there is quite a list of celebrities who have had Bell's Palsy. You can find an extensive list here. Here are a few of the more well-known people on the list:
Pierce Brosnan (actor, aka 007)
George Clooney (actor)
Katie Holmes (actress)
Ralph Nader (former Presidential candidate)
Rosanne Barr (actress)
Tony Gonzalez (NFL football player)
See? Those of you currently dealing with Bell's Palsy, you're in great company! So keep practicing those beautiful crooked smiles!