world

Alone Together: Illness and Care in the Time of Coronavirus.

 

Writer, performer and Sick Woman theorist, Johanna Hedva, in her piece, “Get Well Soon,” writes, 

“[i]n illness, time slows down so extremely as to become still and unbearably heavy. For the sick person, or someone caring for the sick, time freezes, hardening around the body, locking everything into this new center of gravity. All that can be done is wait. The future gets further and further away, and the present moment — the one soaked in illness — becomes huge and cruel. In illness, the now feels like punishment.”

This last year and half of my life of illness — and fear of illness — has felt extremely slow. Time has felt heavy and hardening, and the future out of reach and the waiting cruel. I’ve learned boundless patience and immense appreciation for care-taking and care-takers. I know that now in the time of the coronavirus and illness that many people are learning these things as well.

In January of 2016, I hosted a housewarming cocktail party in my little house in South Pasadena into which I’d recently moved. Twenty-five people packed into my place. We jostled around the table filled with food and an assortment of alcohol and mixers, and people packed into the kitchen to talk — always a favorite space at a party.

Having cocktail parties was something I’d been doing since I’d moved to Los Angeles in 2005 for grad school; over time these parties became well-known and loved by my friends from all different groups to which I was connected. I invited all of my friends, people I’d recently met and my latest crushes.

I spent weeks gathering the drinks and food, cleaning my house, looking for the right outfit, deciding on the featured drink, and making the music mix. I loved seeing my friends remembering one another from previous parties. Writers were excited to meet and talk to artists. Artists enjoyed talking to grad students. Grad students were happy to talk with anyone who wasn’t a grad student.

With a mixed drink in my hand and wearing the cute dress acquired for the cocktail party, I flitted around introducing people who I knew would like one another. The party was a success if some of us were dancing by the end of the night. I felt good about making it a cozy, fun experience, and I loved creating a community of friends and being in the middle of it.

In January of 2020, the coronavirus appeared in the United States. The second week of March, my concerned sister texted me that I should stop going out to places, including grocery stores, because of my compromised immune system. My first response was to get upset and push back. I texted her, “I’ll decide when it’s time for me to stay at home. I’m not ready yet.”

She responded that I needed to think not only about myself, but about my family who would need to come and take care of me — and the difficulty of this. I realized my initial defensive response was out of a fear I would have psychological trouble being stuck in my house again — this time completely alone. However, the other possible outcome terrified me.

I imagined myself on a ventilator and dying, as millions of people have. A few days later, I had self-quarantined and began having my groceries delivered.

My anxiety about sheltering at home came from the fact I essentially did this for a year and a half before the coronavirus showed up in the United States. I recently re-entered the world after being stuck at home with serious brain and body health conditions.

I wanted to think I knew how to be at home because I’d spent so much time in my house when I was diagnosed with, and recovering from, a brain lesion in November of 2018. I wasn’t sure if I really did know how to do it again — maybe I just wasn’t sure if I could do it alone.

After a brain lesion was found in an MRI, I was in my house with family members for a year — anxious, disoriented, receiving intravenous antibiotic treatments, recovering from a brain biopsy, and waiting.

I was scared and in pain from being off of my rheumatoid arthritis drugs. Family members lived in my house with me and friends visited. During that year at home, I learned how to stay put — how to lie in bed and sit on the sofa for months on end — reading, watching shows and movies, talking with a family member or a friend. I had trouble sleeping because of anxiety, which was new.

Previous to all of this, I had been an active, social person going to art shows and performances, hosting cocktail parties, and driving all over Los Angeles to meet up with friends. Friends would wonder at my ability to go to three different things in one day. So home confinement was a challenge. I missed being out and about in the world.

I spent time thinking about how good it would feel when I would get back to being my former self.

My brain and body were not in good shape during this time — the growing brain lesion made me mentally fuzzy and physically disoriented. One time I accidentally rolled off my sofa and struggled to make it back up; another time I fell down while bending over. During this time, I had to learn to ask for help and become comfortable with people taking care of me and being dependent on them.

This wasn’t easy for me. I had been living independently for most of my adult life, and prided myself on doing what I wanted, when I wanted and how I wanted. My dad and sister cared for me in the best way they could. They both love me intensely and are strong and stubborn, as am I.

As they tried to help me, I fluctuated between pushing back and asserting what I wanted, and needed, and being so appreciative that I constantly thanked them, which my dad insisted he didn’t need.

Even though I needed my family and was grateful for their help, in some ways I found it difficult to have a family member living with me in my small one-bedroom house, even as their presence was necessary and comforting. It had been a while since I’d lived with anyone — my ex had moved out of our house six years prior. I’d never shared this particular house with a partner or roommate.

Despite the close quarters, I was appreciative of the company of my dad, Aunt Leslie, cousin Rachel, and my sister Christie. One particularly difficult night, she held me as I cried, and I realized it had been a long time since I had been physically comforted. I had missed being touched and needed it. I immediately felt calm.

Almost as soon as the brain lesion began shrinking, drugs began to help my rheumatoid arthritis that had become active while I was off medications, and I was moving around better. Then I began having severe pain in my right hip. All the cortisone I’d taken over the six months to stay functional had disintegrated the hip bone around a steel pin in my hip — put there when I fractured it at age twenty-five.

It was now time for hip replacement surgery, which meant more time at home with care-taking family members.

I could barely believe it. My dad returned as my care-taker, then my sister, and then my brother-in-law.

I was stuck at home again. I had to continue to be patient. I felt numb. There were more months in my house ahead — in my bed and on my sofa — with daily walks around the block with my walker for a couple months and then a cane. I was determined to get back to my mobile self.

As I shuffled around the block, I met my neighbors for the first time — Dorothy, a fifty-something woman who lived in a house to my right, and David, an older man who’s lived on the block for twenty years and knows everyone.

Dorothy was always sunny and interested in ways she could help me. David, a former educator and caretaker of both young and old people in the neighborhood, would chat with me and help me carry my groceries inside. David had recently been diagnosed with cancer and was undergoing treatment, but continued to be friendly and helpful to others.

I met a friendly couple with a toddler who lived in David’s apartment building, and they offered to help me with anything I might need. After living in my house for three years, it was the first time I felt part of the neighborhood community. However, I continued to be anxious about when I would be able to leave my house and neighborhood and get back to my active life in Los Angeles.

After the last family member departed, I would wake up in the middle of the night and wonder who was sleeping on the sofa bed in my living room, forgetting that no one was in my house anymore. In some ways, the solitude and autonomy felt like a relief, but in other ways it felt too quiet and lonely.

With the brain lesion substantially smaller and a new drug making movement easier, I returned to work part-time and began going out with friends again — to restaurants, art shows, dinners, and movies.

I moved slowly and awkwardly, but was happy to be socializing out in the world again and to have friends over to eat, chat, hang out and watch movies. My life began to feel normal again. I was back to work full-time for three months when, in October of 2019, my organization closed and went into bankruptcy.

I found myself in my house again, watching shows on my computer and looking for and applying to jobs on the internet. I continued to go out with friends, and began a routine of walks and pool exercise to get my strength and mobility back. Then the coronavirus sheltering-at-home began.

Early into my coronavirus home quarantine, I began ordering groceries online and having them delivered.

I found that chicken was impossible to get. I posted this on Facebook, and over the next few hours, three friends whom I hadn’t seen in a few years sent me messages asking when they could bring me some to leave on my porch. I was moved by their kindness. People want to help others. During this time, I’ve been incredibly moved by the generosity of family, friends, neighbors and strangers.

It’s been two months I’ve been alone in my house. Twice a day I go on walks. Sadly, people now tend to eye each other warily. Sadly, I appreciate those who move away and out into the street readily to keep a safe distance.

When I had too many lemons, I asked David if he’d like some, but put them down in a paper bag on the sidewalk at a safe distance. He took half of them to an old woman next door whom he looks after. I feel lonely, and phone conversations and video chats aren’t helping much.

Neuroscientist and psychologist, Julianne Holt-Lunstad, in her 2015 study of the impact on people of social isolation, loneliness and living alone, writes that “… loneliness is not just a feeling. It’s a biological warning signal to seek out other humans, much as hunger is a signal that leads a person to seek out food, or thirst is a signal to hunt for water. Historically, connections have been essential for survival.”

I’m feeling the loss of connection to my people, places and communities in my city and the inability to seek them out. I find that social isolation makes it difficult for me to talk normally on technology to my disembodied family and friends. I wonder if they can hear the weirdness in my voice. I can.

I wonder if I will ever be able to talk, move, flirt, dance, and work like I used to — if we all will. I think about the situations of others stuck in their homes and feel lucky to have a comfortable home, to feel safe, and able to pay my bills through unemployment income and family support. I can’t imagine having to go out in the world and work right now to pay rent, bills and take care of children, as many people are.

I am grateful for those shopping and delivering my groceries for me, but also feel guilty. I’m sure that if they were financially able, they would be safe at home too. I also think about the women and children who aren’t safe and healthy in their homes and are experiencing mental and physical abuse. Some people have no home in which to stay. Danger and precarity are palpable and more visible.

I feel lucky to have felt relatively calm and peaceful in my house. Somewhat inadvertently, my days have begun to follow a routine that includes reading, writing, watching shows, exercising, making meals, talking and video-chatting with friends and family.

One of my best friends who lives near me feels too anxious about taking a walk together or even sitting on my patio, even if we remain six feet apart and masked. Because I feel depressed and easily frustrated these days, I have to work on not feeling upset with friends who have fears about any kind of interaction, which to me seems to be overly cautious. Yet, given the sickness and deaths, I know the fear is real.

After asking around, I was able to get another friend to meet up with me for a walk, in which she walked seven feet away from me in the street and I walked on the sidewalk. Another friend felt brave enough to take a walk in my neighborhood and sit with me outside at a distance. After each of these visits, I felt like my heavy mood was lifted for a bit.

Seeing and talking with friends and family members on technology is enjoyable, but isn’t the same as being in their physical presence. I miss reading facial expressions I can’t make out on a screen, seeing their ways of sitting and moving, and the natural flow of voices and conversation. I feel panicked when I read that this home isolation and social distancing may need to go on for months or a year.

My sister offered to drive across the country from Bethesda, Maryland, in an RV to pick me up and drive me back there to live with them for a while. She assures me she’s serious. This seems too difficult to me in a number of ways. Not only would the drive be physically and emotionally exhausting, but I can’t imagine not being in my house at this moment.

Despite the appeal of being in a bustling house with my sister, brother-in-law and twelve-year-old niece, sharing meals and watching movies with them, I feel somewhat anxious about not being in my house with my things and about not having my own space and alone time, which I know is ironic. I can’t imagine sharing a bedroom for months with my pre-teen niece.

Plus, I’m sure it would be annoying to her to have her aunt in her private space while she’s stuck at home.

I’ve become used to being in my own space, so I understand.

I think about what lessons we all will have learned and how we will be different when we emerge from this, especially those of us living alone.

Dr. Sue Varma, founding director of the World Trade Center mental health program at NYU, discusses how important touch is to healing, particularly during stressful experiences: “Trauma is compounded because people don’t have the usual outlets — other people — to go to. […] The power of touch releases oxytocin, which is a natural cuddle hormone.”

I wonder about the long-lasting effects of the deprival of touch during this time.

I hope the quiet and stillness of our homes and neighborhoods and the physical limitations everyone has experienced during this coronavirus time — and the feeling of the possibility or potentiality of illness — has made a lasting impression on people’s perceptions of illness and difference, so that the fear of sick and of differently-abled bodies is less prevalent and oppressive in the new world we re-enter together.

I hope we can be more patient and empathetic with others, and have more of an understanding for those who, because of sickness or bodily limitations, are home-bound or mobility-challenged.

Needing and caring for other people is part of being human. Eli Clare, a poet, activist, trans man, and person with cerebral palsy, writes in his book, Brilliant Imperfection: Grappling with Cure, about disability and care.

He sees reliance on others and interdependence as vital relationships in the natural world: “White Western culture goes to extraordinary lengths to deny the vital relationships between water and stone, plant and animal, human and nonhuman, as well as the utter reliance of human upon human.”

Being in our homes alone together has the potential to illuminate this and new ways of caring and connecting with one another.

I’m already looking forward to my next cocktail party where we will all be wonderfully together.

***

Adrienne Walser lives in Los Angeles, California, where she attended USC English graduate program and received a PhD in English. She worked for a non-profit organization as an Instructional Specialist in public high schools, and was faculty for the Bard MAT program. Her writing has been published in Pastelegram: Projects Exploring Archives and Artistic Process, Art Book Review, Jacket2, Film International, CARLA and Yes Femmes. She currently serves as the Arts & Culture editor for the online literary magazine, Entropy. Her most recent writing is personal, poetic and political — she writes about intimacy, pain, care and bodily experiences.

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