I Am Not This Body: Living with Bell’s Palsy

bell's palsy
My two year anniversary. Fathers day 2012

Bell’s Palsy is no fun.

Two years ago today I woke up to find that only the right side of my face was working. The left side of my mouth hung down towards my chin and went nowhere when I attempted to smile. I realized that my left eye wouldn’t fully close when I washed my face and got soap in my eye.

It wasn’t completely a surprise as the symptoms had been oddly present for a week though I didn’t know that they would add up to this.

On June 10th, I was on line at Shea Stadium waiting to pick up tickets to a Met game. My scalp on the left side of my head started burning and I wondered aloud if I was getting a sun burn. When I touched the top of my head I found my hair was sensitive to the touch. My hair hurt—how bizarre is that? My companion thought I was more nuts than usual. Once inside the stadium my left ear began to ache. I thought maybe I was getting the flu though I rarely get sick. I had taken a yoga class the day before and I remember cracking my neck in a twist that I did, and still do, every day. I don’t think this had anything to do with the BP but one never knows.

That night when I got home I had the first of what are best described as ice pick headaches. I would be sitting or standing when a blinding pain would shoot into the left side of my skull—enough to make me grab my head and wince in pain.

Google searches connected these early symptoms to Bell’s Palsy but I dismissed the possibility. I’m not sure why but I didn’t think it could happen to me. The ice pick headaches diminished but did not pass and the ear ache was joined by tinnitus, a woeful ringing in the ear.

It just so happened that on the 16th I had a dentist appointment that I thought briefly about cancelling. I am usually very comfortable at the dentist but that day I was squirming and uptight and just plain miserable. As it happened the work I needed was on the left side and that is where I got anesthetic.

I woke up the next day with half a face. It is an intense thing indeed to look in the mirror and only be able to smile with half of your mouth; to try and lift your eyebrows and only see one of them go up.

To say that this unfortunate situation rocked my world and has left it unsettled ever since is an understatement. To this day, even though I have healed a good amount I think everyone I talk to is looking at my mouth and seeing that there is something wrong.

The early days were surreal. Between people gasping at the sight of me to people ignoring what they were looking at, I was beyond self-conscious. And would have liked to crawl into a hole. Instead I had to teach publicly and continue working. What is one to do?

Talking was an adventure. I wasn’t able to talk clearly as my mouth would puff up and out when I tried unsuccessfully to say f’s. Eating out was awful as food tended to make its way to the left and often fell out of a mouth that wasn’t working too well. If you sat on my left side in a restaurant you were looking at an expressionless, emotionless face. Freaky, eh?

I don’t tend towards depression. I wouldn’t say that I am exactly happy but my cup is most certainly more than half full and I have a great deal of joy in my world. But getting Bell’s palsy will really test one’s mettle. And I failed every one of those tests for the first six months.

Bell’s Palsy is a weird disease. The seventh cranial nerve becomes paralyzed and simply stops working. There is no known reason why it happens. The most common thing you read online is that people get it from a draft which strikes me as ludicrous but what do I know. It seems to happen to a lot of people due to stress and is fairly common among college students. My father died four months before my case occurred and I would be surprised if there wasn’t a connection. There are 50,000 or so cases each year that don’t seem to discriminate between the healthy or sick or short or tall or young or old.

Most people heal fully. Some heal in a couple of weeks (the stress cases I think); some a couple of months and some not so much. The conventional wisdom is that if you don’t heal in three months you are not likely to heal, and if you do heal there will always be residual effects.

I began to heal at six months. It might be a cliché but after sort of accepting the fact that I was destined to have half a face, I began to feel a throbbing sensation in my top lip on the left side. My mouth has very slowly healed from that day forward. When I smile now the left side of my mouth lifts, though not as much as the right. My eye also closed and I no longer have to tape my eye shut when I sleep.

Healing brought on strange effects of its own. My Father spent the last few years of his life with a rheumy eye and a runny nose. The day I started healing it was as if a faucet on the left side of my face turned on and hasn’t completely turned off. When I begin to chew my left eye starts to tear and my left nostril started to flow. This too has improved considerably but I often eat with a napkin in front of my mouth and I never leave home without a handkerchief. These strange effects are the result of a post traumatic response called synkinesis- other effects are my eye closes when I contract the muscles of my mouth to smile, frown or even talk and my neck muscles all engage and bulge out when I smile.

When I showed up at the jivamukti yoga center some sixteen years ago there was a sign above one of the doorways in the big yoga room. “I am not this body.” I never had much of an opinion about yoga philosophy. I love the stories of the Gita and the Ramayana, and have struggled through numerous translations of the yoga sutras. I have studied Anusara yoga which basically teaches, “I am so this body.”

All of what you might think and opine flies out the window when confronted with a mask you are no longer able to hide behind.

You know what I have discovered? The human animal is supremely adaptable. That which made me happy still makes me happy and that which pissed me off still gets my goat. My face doesn’t work like it used to, I hide from the camera lens and wince at my reflection in a mirror but my two miraculous children don’t seem to notice.  And my wife who I wasn’t able to truly kiss for a year and half never stopped supporting me in every way.

The kissing side effect was really intense. Making out with half a mouth is less than half the fun and this was one of the last or latest issues to clear up (my left eyebrow still refuses to lift). I am exceedingly grateful that this basic primal urge has righted itself.

I imagine that the face that I have now is the face that I will live with for the duration of my life. I am forty nine and just got my first liver spot (unrelated I believe). My eye and nose run to remind me of a father who passed without me truly knowing him. I still have the opportunity for my children to know me and what they will hopefully find is that it is what is inside that truly makes the person.

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