I have been practicing opposite action since long before I knew the terminology. Opposite action is a therapeutic skill commonly used as part of Dialectical Behavioral Therapy (DBT) and involves doing the opposite of what your emotions tell you to do. For me, this often means brushing my teeth and doing my skin care when my brain tells me it’s too exhausted for basic hygiene. It means doing the laundry and the dishes when I want to let my space tip into disrepair. Today, it meant rewriting this newsletter.
The first iteration of this newsletter was angry. Outraged, even. The last two weeks have come with nonstop, devastating medical news. I learned that my pain psychology appointments are not being covered by insurance. Secretly, I planned to budget for one a month. I considered ways I could save a hundred dollars - cutting back on groceries, selling more books, picking up another freelance job. I made a quiet promise to myself that I would not sacrifice my mental health because of health insurance. Then, I got the first bill. The appointments are $470 a visit, and I have had three. There is no budgeting for that kind of expense. In the same week, my insurance denied the prior authorization for infusions I’ve had scheduled for over a month. Rather than informing me of the rejection, Mayo Clinic scheduled a visit with their business office to collect my down payment on the drugs, which I surely couldn’t afford. I am fighting through the appeal process, pleading with my insurance to cover my first, regularly scheduled pap smear, for which I have been charged over $700. I was charged $1,269 for the ultrasound I had to have to check for endometriosis and other potential abnormalities. My hospital bill was already comprised of $3,000 broken into monthly payments of $310 for the Botox injections that didn’t so much as touch my chronic pain, except to make it worse.
I write this out not for pity, but to briefly share in the reality that I am sick for many reasons, and one reason will forever be the American health care system. I stopped physical therapy, because it was too expensive. I cancelled my rheumatology appointments, because I can’t afford another specialist. I will not have another therapy session, after finally finding the help I’ve needed for years. I am so exhausted. I am so fortunate to be okay, through all of this, and to have options. I have payment plans and parents with financial stability. I have insurance, at least, and access to insulin, no matter how much it costs me. It is inexplicably exhausting, however, to spend hours of each day sobbing on the phone with insurance companies and hospital billing departments. It is heartbreaking to constantly question whether I really deserve to take the trip to see a friend I haven’t seen in a year or to buy the concert tickets or to experience the momentary glimmer of joy in a $7 latte. I do all of these things. It’s a privilege to not be forced to choose to only survive, but it is a slap in the face to my survival that I constantly feel guilt for spending money on things that bring me joy and that convince me to continue fighting to survive. The fact of living in a disabled body should not mean societal, financial, and medical punishment, yet it does.
And so, while I cannot suppress the furious tears that won’t stop leaking from the corners of my eyes, I can choose to, instead, share in some softness. I have been reading Ross Gay’s The Book of (More) Delights since September, and I have not yet finished. I am reading it slowly, in bits and pieces, whenever my brain needs glimmers of sunlight. His practice is an admirable one, and today I’m joining in. Here are some recent delights:
The ever-reaching presence of love.
I often reach for my phone to call my grandparents. I reach for them on the drive home after work or as I step out the door for an evening walk. The sun will be setting, or the sky will be bright blue or cloudy or gray, and I will reach for my grandparents, from miles and worlds away. They’ve been gone for over half a year now, and still, they’re the first people I want to tell when I ace a test or get good news or have a really awful day. I wish I could tell my grandpa about the advisor who told me I had “special needs.” He would’ve asked for her name so he could send her a strongly worded email, like I later found out he did to the professor who forced me out of college the first time. I wish I could hear my grandma tell me the same, familiar stories she always did. I wish I could tell them that I miss them and that I reach for them always.
I find myself reaching for them most when I write. It is partially because I write about grief, disability, and caregiving, but it is mostly because I want to immortalize their stories. Neither had a funeral; they were always quiet people, and I often find myself wishing I could have eulogized them. It is a silly, self serving wish, formed by my desire to boast about these incredible people who I loved and was loved by. Instead, I will do my best to eulogize them in my writing, telling friends and strangers alike about these people for whom I am always reaching for.
My grandfather was a small man with hard hands, sleeves of tattoos, and a sweet tooth. I never saw him drink water, only Pepsi and Pabst. He was picky, and he was quiet. Most of his days were spent in his garage, tinkering with old cars he repaired, or on his laptop, scrolling to find car parts (which he would send to my mother to purchase. Browsing was as far as he got in his understanding of online shopping.) He watched Western movies constantly and spent every college football game I attended staring at the crowd, trying to spot me. We often talked about politics, and he watched MSNBC to a probably unhealthy extent. He loved Rachel Maddow. Despite being a soft-spoken man who preferred to spend his time listening to Willie Nelson alone in his garage, everyone seemed to know my grandfather. When he passed, it wasn’t uncommon for a stranger to stop by the house, to plow the snow in the driveway and tell a story about the way my grandpa cared for them after a tragedy. He was always helping someone, never asking for a penny in return.
My grandmother was loud and brash. I think I used the word fiery in her obituary. She loved children’s animations, specifically Open Season, terrible Lifetime movies, and John Wick. She didn’t read, and she didn’t have many hobbies, particularly as she got sicker with age, but when I was young, strangers used to ring the doorbell and ask about her gardens. They were showstopping. Impeccably weeded and brimming with life. Bold and lush and vibrant. She took great pride in her flowers and worked at a plant nursery down the road for many years. She made perfect pancakes. When I cared for her, I made pancakes each morning, and she told anyone who struck up a conversation that I should be a professional chef. They were a boxed mix. Near the end of her life, she stretched every deadline doctors gave her and asked for chocolate ice cream for breakfast. She made nurses laugh and spent an afternoon watching, of all things, wrestling. She was constantly surprising, always fun, and a delightful gossip. Her hands were impossibly soft and smooth after a lifetime of nurturing life - plant and human alike. I can’t write about her without smiling.
During the process of cleaning out their belongings this summer, I found a photo of my grandparents on a picket line. I learned, then, that my grandfather was president of his workplace’s union and often participated in strikes and union activities across the midwest. Each new thing I learn about their lives is a joy.
I don’t know if you’re supposed to sob while you write delights, but I think I’m supposed to. It is the most special thing in the world to love someone enough to carry them with you every second of the day, and I hope I never stop reaching for them the way I still do. How delightful it is to love and be loved, and to know that someday, someone will be reaching for you, long after you can pick up the phone.
Live streamed concerts.
Watching Noah Kahan from the comfort of my couch, a Chicago Red Stars game on a second screen in the background, blanket in my lap, dog curled against my side was a moment that felt like an exhale. A sigh of relief. I can keep surviving this - this being life and capitalism and pain and fatigue and medical bills - if only to continue crying as my favorite artist sings my favorite songs, living out his dream in another part of the country while I text my friend scheming about how to add him to a group chat and braid his hair.
Noise in a library.
Every time I hear a small child shrieking gleefully in a public library, often followed by their adult shushing them and casting me an apologetic glance, I feel hope. Libraries are often depicted as silent, stiff places. Before working at one, I always felt a bit anxious, wandering through the stacks. I was worried I’d somehow do something wrong (I did accidentally steal a book once) or get scolded. Those thoughts certainly came from an abundance of social anxiety swirling around in my brain, and every day, I watch children, without a care in the world, make the youth services department their kingdom.
The art room? Trashed. Glue sticks are inevitably stuck to the floor, and marker is scribbled onto the tables. Scraps of paper that are frustratingly difficult to pick up will be everywhere, and they are particularly fond of replacing the word “staff” in our “for staff use only” sign with “kids.” Art, varying in skill and design, sometimes being nothing more than a completely blank piece of paper, gets taped to the walls and the door and the windows. Despite being the one to clean it four mornings a week, it always makes me melt a little, to see little humans being so unrestrained.
No matter how exhausted I am, I always find myself laughing, watching kids try and fail to carry stacks of books, singing to themselves as they wander, or hearing the elaborate requests they make (a recent one was Frozen but with dinosaurs. Someone get Disney on the horn.) I am in a constant journey towards being more silly, and there is no better place to be reminded of the pure joy of chaos than the youth services department of a public library.
An insurance “advocate” living up to their name.
The customer service representatives for my insurance company are called “advocates.” It drives me up a wall and fills me with such rage I want to put the phone on speaker and let out a great banshee wail. Each time I call, I am deeply cognizant that the vast majority of these employees are simply doing a job, and it is one that is likely hell. The American health care system is not their fault. The insurance company’s life altering, ableist decisions and denials are not their choices to make. Before each call, I take a breath, and I ground myself. You will not ruin this customer service stranger’s day. You will not rant about ableism. You will remember the limits of their control and be the most delightful person they’ve spoken to all day. Nine times out of ten, these commitments remain intact. I am a god damned delight. I am a customer service employee’s dream.
Then, there are the moments when I have a sobbing meltdown and plead with the man on the other end of the line to explain why I was forced to get a pap smear I didn’t want and now have to pay over $700 for it. During this conversation, a dam broke. I sobbed snot nosed, heaving sobs, and I told this customer service rep that I was so exhausted, tired of fighting the system just to stay alive but not to stay alive well. I was a mess, and even as the words and tears spilled out, I felt a bit bad for the human on the other end of the line. I kept telling him, “I know it isn’t your fault. I know this isn’t your fault. I’m just so tired.”
And he repeated, over and over and over, “I’m here.”
I’m here.
I’m here.
I’m here.
His voice was low and soothing and calm. It was slow, never once rushing me. He felt, unlike every person I’ve spoken with at that company, like he maybe lives up to the name, “advocate.” It is rare that I am soothed by strangers or the reassurance that someone is on the other end of the line, listening, but in that moment, I gripped onto the humanness of offering reassurance to a crying, hopeless stranger.
I am still fighting to have this service covered. It has required an appeal and several more phone calls. I don’t know if it will get resolved or if it will simply be another bill added to my debt. I keep thinking about him though, and about his refrain: “I’m here.”
I do not always come by delights easily, but it is something I hope to practice. Life can be dark and scary and impossibly hard, but there are glimmers of sunlight, breaks in the clouds. Sometimes it just takes noticing them.
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