An essay on the masks we wear in life with chronic illness

As Halloween grows closer, I’ve been taking another of my trips down memory lane. These trips are becoming more frequent as I get older, and the emotions they stir are bittersweet.

I think about my childhood and the plastic Yogi Bear mask I wore one year. It had two holes on either side into which I attached a string that looped around my head. Compared to what kids can choose nowadays, it seems archaic. But at the time it was pretty impressive.

My parents would organize a party in our basement. The place was decorated with plastic pumpkins, cardboard witches, and ghosts. The enormous space was decked out to the max. When I consider it today, I wonder how what was actually a small space once seemed so large. The costumes, the parents, bobbing for apples, the smell of fall — including the last few wisps of burning leaves — combined to create a warm, cozy feeling. Rather than scary, it felt safe.

As the night wore on, masks would steam up and be removed. Makeup would smear and fade. At that early age, I learned that it is hard to wear a mask for too long. As it turned out, this was a very valuable lesson.

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These days I don’t need a plastic mask. Living with myasthenia gravis (MG) changed the way my face operates. Some days, my eyelids droop and a smile becomes more of a struggle than it’s worth. Other days, I use my face to hide the pain caused by the endless battles. Those who live with chronic illness will get this. They’ll understand the fear we have that too much pain will scare people away and we’ll be left behind.

In 1985, Cher won Best Actress at the Cannes Film Festival for her role in “Mask.” She played the mother of Rocky Dennis, a teen with craniodiaphyseal dysplasia (CDD). She was a tough biker who refused to let the world decide what her son could be.

People would stare at Rocky. It may seem cruel, but it was a natural reaction. I’m still moved at how he handled the staring and many other difficulties of life with CDD. He used wit to put people at ease and made friends one conversation at a time. The movie calls his face a mask, but Rocky never wore one. He simply waited for others to take theirs off.

The real Rocky Dennis died on Oct. 4, 1978, at age 16. That was the day I turned 18, and it makes his story feel a little closer to home.

Edgar Allan Poe saw masks differently. In “The Masque of the Red Death,” Prince Prospero seals himself and a thousand friends inside an abbey while a plague rages outside. They dance in costume through seven colored rooms with the false sense of security that behind walls they were safe. At midnight, a guest in a terrible mask moves through the crowd, and the party learns that no disguise keeps out what is already coming. Death will not be denied its conquests.

Chronic illness tempts us to wall ourselves in and dress up the day. “I’m fine,” we say at the pharmacy counter, in the hallway catching up with a neighbor, or on the phone with friends and family. Some days that’s courage. Other days it’s just a costume.

Paul Laurence Dunbar gave this a name. In 1895, he wrote, “We wear the mask that grins and lies,/ It hides our cheeks and shades our eyes.” He was writing about the hidden pain of Black Americans. Anyone who has hidden pain to keep others comfortable recognizes the gesture.

There’s an old story about a search for a king. The search came to the home of a man with two sons. The tallest, most handsome son looked every inch the part, yet he was passed over. The crown went to the youngest, a shepherd boy no one had thought to call in from the fields. The shepherd didn’t look the part, but inside he was regal and wise. His story illustrates the old caution not to “looketh on the outward appearance.” What matters lies deeper.

So, this Halloween, wear the mask if you like and hand out the candy. But when the porch light goes off, take it off and let someone see you. And the next time you meet a face that doesn’t quite match the person behind it, whether due to a drooping eyelid, a crooked smile, or a boy like Rocky, wait a moment. The best faces, I’ve found, are the ones we learn to read slowly.

Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.