Stephen King, the renowned author who has scared us crazy with his horror stories, once described what frightens him most.
“I’m most afraid of losing my mind,” he said. “You lose your identity, your sense of who you are, where you are.”
I’ve witnessed the effects of seeing a loved one lose that sense of identity in a different way – through brain injury. And I’ve watched how she’s navigated the strange and frightening circumstances surrounding the COVID-19 pandemic.
My older sister, Molly, has a severe brain injury from carbon monoxide poisoning, an accident that occurred in a hotel 25 years ago. Her husband, Walt, died at her side from CO poisoning. It was a living nightmare.
It is terrifying to lose your personality, your ability to reason and regulate your emotions, to lose your life as you’d built it and knew it, to lose your place in the world.
Molly has made impressive adjustments over the decades. She’s gone up and down, backwards and forward. Without a doubt, though, she is not who she used to be. As Stephen King fears, Molly lost her identity, where she was in life, and much of who she was. She is a different person and she carries on.
For me and Molly’s other family members, we discover who the new Molly is on any given day, and we do not guess who she will be tomorrow. I used to say that I redefine normal every day. More recently, I’ve stopped defining what normal is at all.
Stephen King wrote a book that many people these days feel like they’re living in. King’s novel “The Stand” is about a viral pandemic, a particular strain of influenza, no less, that decimates most of the world’s population.
Sound familiar? In these difficult days of COVID-19, there’s a lot to be afraid of. Most of us know enough to be fearful and concerned and yet, not enough to know how to fully protect ourselves or our loved ones. Most of us feel some anxiety. We don’t know what tomorrow will be like.
We’re adjusting to our new lifestyles of staying home, physically distancing, working from our kitchen tables, and keeping our social contact with others from the heart – and remote.
Molly lives about 20 miles from me in a residential home with four other people who each have a brain injury. They are under strict lockdown, as are the other supportive, assisted, and nursing care facilities in Colorado.
Molly has her own bedroom with large windows. She and her housemates share several bathrooms and some common areas, including a big comfy living room, a kitchen, and dining room. She stays six feet away and mostly spends her time in her room reading, listening to music, and watching TV or movies.
Her residence is staffed 24/7 by professionals, heroes who come and go on eight-hour shifts. They care for Molly and her housemates by preparing meals, delivering medications, and providing watchfulness, company, and comfort. Everyone is very careful.
About once a week, I go to the house wearing my mask to deliver medicines, toothpaste or other items Molly needs, and a large frappuccino from the take-out window of the nearby Starbucks. I leave everything at the front door, and I step into the yard as a masked staff person collects the bag. I can see Molly in the living room and we wave to each other and give the ASL sign for “I love you.”
Molly is being a real trouper. Like all of us, she’s missing connection in the ways she prefers. Hugs from her family members, close greetings with friends, and laughter face to face with acquaintances.
She’s following the rules and is doing pretty well managing her frustration – not easy for a person with a brain injury even in non-COVID-19 times. I call her every day and my best encouragement strategy is to remind her that she’s keeping healthy, and that helps others to stay healthy too. She seems to appreciate having the larger mission of caring for others by doing the right things herself.
Most of us are experiencing various levels of confusion and fear due to a lack of knowledge or answers about COVID-19. These emotions and realities of life today are especially tough for people with brain injuries.
It’s hard for Molly to understand the widespread impact of COVID-19 and how dangerous it is. When I speak with her, I try to provide a hopeful outlook that we will get through this together, as we stay apart. I try to raise her spirits and keep her focused on the future.
I haven’t discussed with her what that future may be like. I don’t know when or if she’ll be able to enjoy her hanging out and reading time at Starbucks, her manicure and pedicure treatments, having dinner with me or her family members at her favorite bustling restaurants. It was all yanked away suddenly and none of us know when or if we can settle into those social comforts again.
I know that the primary reason Molly has enjoyed these activities in the past is because she is surrounded by other people, side by side, shoulder to shoulder. When she’s out and about, she engages as best she can and she feels part of the larger world. She feels a sense of belonging in a crowd of people who don’t know she has a severe brain injury even though they may notice she’s different somehow.
I’m looking forward to hugging Molly and knowing that I won’t make her sick. I want to have her in the passenger seat of my car as she sings along to the radio the classic rock songs she loves.
When that day comes, we may both be wearing masks. We will likely need to stay six feet apart from everyone we encounter. It will be a changed world and she and I, and everyone else, will be leading changed lives.
And yet, I believe Molly has made up her mind. She won’t be afraid.
Lyrysa Smith is a journalist, editor, caregiver and author of “A Normal Life: A Sister’s Odyssey Through Brain Injury.” She lives in Denver.