“Smile!” the photographer implored, looking straight at me as I stood in a line of people to be captured on digital. “This is a wedding.” His emphasis on the “is” made it sound as if he were scolding a naughty child.
I attended the wedding of my nephew’s daughter at a resort in the Berkshire Mountains of New England. People I literally hadn’t seen in decades flew from California with their extended families, many I’d never even met. Distance was also a reason contact with my nephew had been limited.
My husband and I had read the invitation six weeks before and knew it had to be a “now” reunion, as our chronological clock was running on a low battery. We decided to make the drive from our home in the western part of New York State near Canada’s border. Having been raised on Long Island, my girlhood summers were spent in the same part of Massachusetts where the wedding was being held, and the chance to pretend, for a bit, that I was still horseback riding in the very town where the wedding reception was to take place, to reverse time, was another lure.
Moving the invitation to my dresser, I looked in the mirror and my facial paralysis of thirteen years stared back. Synkinesis. A word most don’t know. My condition is so unusual that few neurologists have patients with the syndrome—a Bell’s Palsy so severe it caused permanent damage to the entire right side of my face, leaving an eye that cannot blink, lips on the affected side that cannot move when I speak, spasms strong enough in the cheek and neck on the palsy side that they’re easily seen, a brow that cannot move, cheek thickness on the outside and inside with frozen muscles pushing so hard that the teeth have actually shifted on that side, and drooling from the right side of my mouth. And that’s just a bit of the affliction.
The pretense that it’s no bother allows me to be “me” in personality even though I know how “freaky” it looks to be unanimated. One neurologist suggested I have him inject Botox into my so-called good side so the face would appear more symmetrical. He didn’t know me at all. Why would I take anything away from the left side that is still “me” and can smile and blink and even just grin? Teaching myself to speak words that began with “p” or “b” took so much effort and time—what if he froze my mouth too much on the good side?!
I dealt with so many callous people the first year that I wrote up my experiences and the work was published in an anthology. Did only readers with an affliction understand rather than ones whose methods of communication were intact?
After several years it occurred to me that I could be photographed facing sideways looking at the person next to me, and I could smile as only my non-palsy side would show. I was delighted. Well-meaning loved ones said, “Face front!” and “You really don’t look bad,” and yet these were the same people who camouflaged a blemish or age spot, or smoothed their hair before a camera snapped. Facing front captured a stern non-expression, or an absurd look reminding me of the classic smiling/frowning theatre masks. The thing is, I’m happy! I have a good and productive life, I am playful, and would rather be around noisy children than solemn others my age who seem to have forgotten the wonder of every day and the gift of seasons, family, and so forth. Inside, I am not right-side ugly.
And so we arrived for the pre-wedding gathering. The mountains validated my childhood memories, and the tiny town still had riding stables. Pretending, as usual, that my appearance wasn’t an issue, I embraced and was embraced by relatives I knew only from correspondence. I was a bit defensive about the way I’d look eating, and was careful what I ordered to minimize chewing, and then put that behind me for the first meal.
The rite ended, and my nephew wanted some of his extended family in a line for the professional photographer to capture. At the marriage of my oldest grandson in 2013, when the photographer commented about my lack of apparent happiness, I quietly said, “Half my face is paralyzed.” He felt awkward, and I knew I couldn’t mention this again in a similar situation; I certainly didn’t want anyone to be humiliated because my austere expression was physical and the photographer assumed otherwise.
“Smile,” he said, “this is a wedding.” I held in the shame that overcame me as he implied I was intentionally sending a message that I had little joy in the event. I looked straight at the lens and the shutter snapped. I felt angry with myself afterwards that I hadn’t said something so as not to embarrass the photographer yet that would have allowed me to have “me” show, smiling sideways.
Perhaps when this comes up again I’ll put my right hand quickly over the palsy side, tilt my head to show my real pleasure at being with family, and offer, “This is my happy face.”