Susan Levin

Life inside the mask

My disabled husband is exempt from the coronavirus regulation that requires masks, but I've come to realize that he's cloaked behind one all the time anyway

We are now months into a new normal. Life with a coronavirus that we can’t see or taste or hear, only fear. We know we don’t want it and that’s most of what we know about this crafty virus that made its unwelcome entry into our world.

Scientists are working overtime. Doctors trying to heal the unlucky. Politicians have their own interests playing into the big picture.

Man on the street? Seems the only thing that we can do to hedge our odds and those of the people around us is to cover our facial openings to help contain and not share our own germs. Enter the world of masks. The new constant, mostly-constant, in our lives.

I am careful to have mask in hand each time I leave the house, my escape into the freedom of outside. The mask stays on whenever I am near others, but as soon as I am in the car (without trempistim) or back in the cocoon that is my home, the first thing that comes off is the mask – even before shoes. There are physical and emotional discomforts to wearing the mask. It gets hot and sometimes harder to breathe. That’s for sure. More than physical discomfort, is my sense of uncertainty each time I encounter someone who is covered from just below the eyes. Do I know that person? Am I supposed to recognize him/her? Am I seen as rude, uncaring, maybe stupid when I can’t put a name or history to the eyes and hairline looking at me? Add a modest head covering on a woman and the problem is magnified 100 times. And what happens when I just want to smile to acknowledge that other person? Can the other sense my intended message? I know I am smiling, but does the set of eyes looking at me know? No doubt, at the very least, the mask is unpleasant. What about those without ?

When the legal command to mask was enacted, the very young and the very disabled were excluded from the edict. Each time I am out with my husband, who lives in his world of advanced Young Onset Dementia, I am supremely aware of his exemption. His inability to comprehend the how and why of that uncomfortable thing on his face outweighs the possibility that he may have germs and be capable of sharing them. Until this week, because we live in a small town with understanding and supportive neighbors who don’t question our different ways and other reality, I didn’t pay attention to the differentness of walking down the street, 2 adults, 1 mask. And then suddenly I did.

I looked into the seemingly unmasked face and finally saw what cannot been seen. He has a mask. He wears it 24/7, when awake, when asleep, inside the house and outside. It is uncomfortable. It might be outrageously uncomfortable. Sometimes, it may make the very act of breathing a challenge, and if not now, likely in the future, but that is not nearly the worst of it. How often does he look where a face should be and his unseen mask covers all the features that would allow him to recognize the human being in front of him? Is it his mask that allows him to see a chair, but hides the understanding that a chair is an object to be sat upon? John’s mask covers his ability to communicate so when he puts a beloved object, like a book, in his mouth, perhaps under the mask the human means to say, “I’m hungry,” but perhaps not.

Unlike our don’t-spread-coronavirus masks, which hide visual clues healthy humans use to make sense of what we can see, the dementia mask covers and distorts the very elements of cognition that define, order, and explain every aspect of the world around us.

Next time you see a person who has Alzheimer’s or any of the other dementia diseases, rather than ask if s/he recognizes family members or friends, perhaps ask yourself if you can see through your own mask enough to acknowledge the human being on the other side.

About the Author
Susan Levin works part-time at The Maaleh Film School and full-time as her husband's caregiver.
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