A few month back, I asked readers if they’d prefer a longer piece in two parts or as one big read. “One big read” was the consensus. For greater accessibility, the audio version of “Fall Risk” is below.
The United States spends the most money on healthcare of any other high income country, while covering fewer people and achieving worse outcomes.
One of the gifts of trauma is a heightened sense of intuition. Survivors know things, whether there is evidence to support that knowledge or not. Arriving at home, I push open the car door. My neighbor Janet is walking down from her front lawn. Janet is the first person I met when my husband and I moved in ten years ago. She is not our immediate neighbor but a house up, living with her brother in their childhood home. I shut the door and wave.
"I don't wanna say I can watch Nestor in April," Janet says without preamble when she reaches me.
Always good for a cup of flour, Janet is a dog walker and airport runner but we don’t know each other in a non-Facebook way.
"Ohhh kay," I manage.
"Somethin's goin' on with me," Janet says from underneath the shade of her battered gardening hat. There is grit under her nails and the weight of a long day settles on my shoulders. She continues talking but I listen to my inner dialogue. School pick-up, a soup that needs defrosting, a looming deadline. After a while, something jolts me and I interrupt.
“Janet, you can't know you have breast cancer," I blurt out.
“Well, somethin’ is wrong," Janet insists.
"Are you comfortable calling your doctor?" I ask, sneaking a peek at my watch.
"I haven't seen him in years," Janet says.
“Can you make an appointment?” I press, anxious to get on with my long tail of tasks.
Would you like me to call? Could I take you? Where can I help? What do you need? Instead of options, I shut a door. I ask no more questions, disappear into the house. Later, when I rewind my words from that afternoon, I remember intuition is a curse, too. It can make us impatient with the same ability in others.
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Cancer is among the leading causes of death worldwide. Approximately 40% of men and women are diagnosed with cancer at some point in their lifetime.
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Shortly after we moved in, my toddler and I were out exploring in the desperate way you do with a two year old. We walk by a house with a trim lilac bush garnishing its front gate. I point out the tiny violet petals to my daughter and take big, dramatic sniffs. We linger, delirious in the perfumed air and then meander along. A few weeks later, when my daughter and I take this path again, the lilac is gone. Had it really been there?
Janet was the rare combination of busy and available, usually around if you looked for her. She was also our local master gardener. Nothing green ever intimidated her. The next time I saw Janet I told her about the missing tree. She listened as I rambled on.
"I have a lilac," she replied when I finally stopped talking. "You can have it."
Lilacs are modest trees, ranging from six to twenty feet. I'd never considered that you could give a tree away.
"I'll dig it up and bring it over." Janet said after a moment of astonished silence.
Not only was the lilac rooted in Janet’s yard but even if I did have the replanting (repotting?) skills—I did not— a twenty-five pound non-napper hobbled me. Also, I couldn't accept a gift of an entire tree.
"I can't take your lilac, Janet!” I said. "That's too much.”
"No, it's not," she said. “I’ll bring it over and replant it. Jus’ tell me where you want it."
Janet’s voice is full of husk, as firm as I am hesitant. But telling her where a tree should go was another thing I couldn't do. Janet walks away. Have I offended her? An hour later though, she’s back with the lilac in a wheelbarrow along with a mess of dirt.
A secret: I have no plants. Not a single living green thing in the house. I know my limits and plants are beyond them. I hadn't wanted Janet’s lilac because to be responsible for the death of a tree felt like more than I could stomach. Yet, under her sturdy watch, the lilac flourished.
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Cancer affects all population groups in the United States, but due to social, environmental, and economic disadvantages, certain groups are disproportionately affected. "Disparity" is a word used to describe a social or economic condition that is considered unfairly unequal.
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After my mother died in 2015, my father gave my siblings and I a nominal amount of money. Having felt the weight of plastic on my face since third grade, I decided to use some of the cash to get LASIK. I’d considered where my child would be while my corneas were being reshaped but not what I would need. The surgery was booked for an hour my husband was teaching. It’s unclear whether I asked Janet or if she volunteered but she sat in the waiting room with her book. She listened to my discharge instructions and drove me home. Reminding me, as she pulled away, to take the ibuprofen. I offered her gas money but Janet wouldn't take it.
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Changes to our genes are the cause of cancer. Most of the time, our bodies get rid of cells with damaged DNA before they turn into cancer. But our ability to do this decreases as we get older.
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A late spring afternoon and the Carolina/Duke game is about to start downtown. The air is paper light, absent of mosquitos and humidity. My neighbor, M, and I are talking when Janet pulls into her driveway. There had been a click of relief earlier when M told me that Janet had confided her cancer worries. I’m grateful to not be the only person holding a flotilla of options, failing to do any of them. M and I walk over to Janet’s. There's the usual talk about the weather and then M asks Janet if she's been to the doctor.
"I tried to go to the ER. The wait was too long so I left. But I have an appointment in mid-May," Janet said to us.
M and I looked at each other. It was April 2. M is in her second career as a therapist and more confident in giving direction. "Why don't you go to urgent care tonight?" M. said. "No one will be there. Everyone's at the game or watching it. I can take you.”
Neighbors are how Janet grew up. She takes slow drives in her older Camry, sometimes stopping in the middle of the street to chat with a passerby. Prone to trimming her own grass with scissors, when Janet housesits she'll mow, weed the garden and give your dog slices of deli ham. She drops off our library books and brings deep dish mac and cheese to block parties. Local kids get individual bags of candy, knotted with raffia, for Halloween.
Janet looked at M and I. She gave a shrug. "Maybe," she said. Janet was retired but a full time caregiver for one of her brothers. She tracked his health; ordering refills for prescriptions and driving to doctors appointments. Her own doctor, though? "I haven't seen him in years.”
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An example of a group that experiences cancer disparities are people who have challenges accessing health care. This includes people with logistical access issues including those who lack reliable transportation or depend on public transit; live in rural areas; work hourly wage jobs; live alone and/or are caregivers.
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A handful of neighbors, including M but not Janet, and I have a group text. Need anything from Costco? Can someone grab a package from our front porch? Who has an extra egg? When May is days away and I haven’t seen Janet in weeks, I text the group, "Has anyone heard from Janet?” A neighbor, with a finger hovering above "send" forwards on a text from Janet’s son, L.
word word word word stage 4 breast cancer word word word word
The day before the news came in, neighbors gathered for a BYO picnic dinner on Janet’s putting green perfect lawn. The front door swung open and Janet nosed her way down three porch steps, using a knobby walker I’d never seen. Someone left a spot open in our lopsided circle and Janet settled in. A full plate was handed over and it balanced on her small lap. A large styrofoam cup of Chik-Fil-A’s sweet tea was at her feet. Never raucous but seldom silent, Janet watched more that evening than she spoke. There was a tightness in her body, as if her limbs were wired. She forked a sliver of chicken to her lips, then back down again.
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According to healthcare giant Blue Cross Blue Shield (BCBS) the price of medical care is the single biggest factor behind U.S. healthcare costs, accounting for 90% of spending. BCBS names prescription drugs, chronic diseases and Americans’ unhealthy lifestyle choices as the three drivers of high costs.
The cost of healthcare for the average citizen must be taken into account when it comes to seeking or receiving medical treatment but it is not the only variable.
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At least one in four girls and one in twenty boys in the United States experience child sexual abuse. This is an underestimate because not every case is reported. Sexual abuse survivors are a group of patients that may delay or avoid medical care.
A colonoscopy or mammogram are medical procedures touted as routine and painless. The reality is different for many. Being so intimately touched, for example, can trigger unbearable memories for abuse survivors. Pelvic exams can be terrifying. The average ob/gyn resident has completed probably a thousand pelvic exams by the time they sit for their boards. Their process, over time, becomes habit. For a rape survivor, however, a metal speculum inserted into their vagina is anything but ordinary. And if the doctor doesn’t ask for consent or talk the patient through the process, saying only "take a deep breathe," or “relax”, the experience can be unbearable.
Childhood abuse and neglect correlate to certain chronic diseases as well as unhealthy lifestyle choices like smoking and drug addiction.
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Social determinants of health (SDOH) are five categories that reflect the conditions in the environments where we are born, live, learn, work, play and die. They include: healthcare access and quality; education access and quality; social and community context; economic stability and neighborhood and built environment. Public health researchers have found that SDOH have a greater influence on health than genetics or access to care.
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Janet’s son, L, moves back to take charge. Tall with huge brown eyes and as wide-open as Janet, L is her only child. He is known to me only through Janet. She shares his life updates after she asks about my daughter or gives her some trinket. Now as Janet stays with friends after a first chemo treatment, L gets to work.
Friends and family help with a massive purge of Janet’s house. There are generations of dishes, towels and blankets. Closets of bedding and clothes. A front room with extra chairs and piles of rugs. Fifty years of life is donated or dumped. From my house, I watch the razing. My inaction is rationalized with facts.
My child needs me.
We're headed out of town.
I'm busy with work.
The reality is being this close to dying feels like frantic wings in my throat. I don’t want any of it. I text Janet. No response. I'm relieved. A text feels involved and remote.
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A 2015 study found “the barriers to trust are so great that the dependent nature of the patient-physician relationship is a sufficient deterrent for many Black patients, who would rather 'risk the unpredictability of possible illness in the future' than voluntarily enter into that relationship dynamic," And yet without a primary care doctor, Black patients are more likely to depend on emergency rooms and less likely to be offered preventative care.
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Compared with any other high income country, Americans face the most barriers to accessing and affording health care.
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Eighteen reasons we might not go to the doctor:
1. We can't get the time off from work.
2. The procedure is no longer paid for by our employer.
3. The co-pay is too high.
4. Our ride doesn't show up.
5. We cannot afford the gas.
6. The provider we trust in the practice is not available.
7. The equipment at the office doesn’t fit our body.
8. Insurance didn't cover the whole cost last year, leaving us with an unexpected bill.
9. The staff misgenders us or uses the name we were given at birth, instead of our chosen name.
10. We have low literacy skills and the intake forms are difficult to understand.
11. We have no childcare.
12. We cannot speak English and there is no interpreter.
13. Our partner doesn’t allow us out of the house without them.
14. We didn’t follow the doctor's instructions the last time we were at the office.
15. The procedure we need has been outlawed in our state.
16. We’ve been talked down to by a medical professional or staff.
17. We are a full-time caregiver for sibling, children, elderly parent(s).
18. We’re afraid…of needles, pain, becoming addicted to medication, dying.
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Imagine for a moment you come home after an unexpected hospital stay. Your bed is downstairs. So are your clothes. You turn to the table where the mail usually sits and not only is there no mail but the table is gone. So, too, is a favorite sweater and off-season clothes. Chairs, blankets, books, beloved knick knacks. All disappeared like a ship at the edge of a flat earth.
Janet moves back into a house with walls and a roof. A wheeled walker replaces her stationary one. Her carved wooden bed is now in a room off the kitchen. A home health aide will come morning and evening. The fact this purged space no longer resembles Janet’s home is not said. I text Janet again. No answer.
Almost a hundred years after its founding, Alexander Graham Bell’s American Telephone Company (AT&T) had become the largest company in the world. Not long after, in 1996, Congress passed The Telecommunications Act with the intention of allowing regional telecommunications companies to compete with the behemoth of AT&T. Because Congress realized technology was fast advancing, they enacted a future provision: local carriers could end landline service, not be limited by price caps, and, if they choose, move to cheaper solutions. There would be a transition period to inform customers and offer alternate options. In 2022 that transition period ended. The FCC reminded the public that they were no longer owed landline service.
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My parents raised me to mind my own business. Didn’t show up unannounced. Would never dream of inviting myself in. Waited for another to extend their hand. If they did, ok then. But otherwise, I kept to myself. I am thirty eight years old when my soon-to-be husband and I move into the neighborhood. Janet walks up to our front porch and starts talking. She chats for an hour and my husband's eyes met mine over her head. People do this?
These days, I’ll ask the cashier how her day is going. Compliment someone I don't know about her dress. Leave my front porch light on. I’ve learned to need the glow this feeling gives me, the warmth of a jacket I remember right when the weather crisps. Was it that charm that made me finally stop texting Janet? Some days silence would greet my knock. I’d walk away embarrassed, like a new friend trying too hard to say the right thing. Janet would have done the same, I’d remind myself. That was enough for me to try again.
My mother, like Janet, was diagnosed late. Both were children of the 1950s, born within a few years of each other. When my mother visited us the fall before she died, I’d come into the living room and saw Elisabeth in her lap. My mother was singing. I grabbed my phone and recorded about thirty seconds. When I visited her a few months before her death, my mother had already lost her voice. The video with my mother's voice is the only one I have.
On a Sunday ten years later, I ask Janet about her mother’s pound cake. Her visiting sister-in-law looks at me, aghast, as if I've grown horns. Janet used to bring pound cakes to our block parties, I manage. Every other sentence reeks of the word “dying”. I take out my phone, head to "voice memos" and start recording.
J: “3 cups of plain flour”
Me: “Plain flour, ok.”
J: “3 cups of…sugar.”
Me: “Regular white sugar?”
J: “There’s a pound of everything.”
Sister in Law: “Do you have it written it down, your mom’s, Janet?”
J: “Yeah, somewhere.”
Sister in Law, to me: “I can send it to you when I get home.”
A murmur of something unintelligible.
Sister in Law: “It’s got a lot of eggs in it.”
J: “Six eggs.”
Sister-in-Law: “What else?”
A long pause. And something the recording doesn’t pick up.
Then Janet is talking about a different recipe, one that uses buttermilk.
Me: “But you’re just using regular milk, whole milk?”
Janet: “Sweet milk.”
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We call landline service POTS (plain old telephone service). POTS uses a basic network of copper wires to connect people. Wire carries electric signals processed into sound waves from a person to an individual or business. When you pick up a landline phone, you are tethered to physical infrastructure: copper wiring, central hub equipment, operators and line workers. POTS is like a railroad; tracks are only part of the equation. Each segment is complicated and expensive to maintain.
Despite the transition period ending two years ago POTS is still around. Landlines remain in areas that suffer weather-related events. They work when the power goes out. Emergency responder centers like hospitals often require a landline to function. Fire alarm panels, elevator phones and public safety phones (blue boxes) also often need landlines.
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At a time when many of us are quick to say, “I’m not there much,” Janet was an unabashed Facebook user. She'd share memes, post comments about your family vacation and forward recipes. That's how M. came to make one of Janet's favorites: a blueberry spinach salad.
Baby spinach, a couple handfuls of fresh blueberries. Half a cup of toasted pecans, less of sunflower seeds. Crumbles of blue cheese. Balsamic, olive oil and a few tablespoons of blueberry jam for the vinaigrette. I started making the salad for Janet too, sometimes with changes she didn’t like. Too few pecans. My brilliant substitution of baby greens for spinach. That's not the recipe, Janet told me with trademark frankness, at the same time thanking me for making it. Sharp, salty and sweet.
One Saturday evening, I walked over a hamburger slider and some yellow squash cooked with butter and Vidalia onion. “Crookneck squash!” she exclaimed. “My mother used to make that.” I had no idea the squash I’d selected at Food Lion had a special name. Or was it the way I'd cooked it? I never found out but I made it for Janet again and again.
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Landlines still matter for individuals, too. Not all rural areas have effective cell phone coverage or broadband internet. Calls to 911 from a landline offer the exact location of the caller; cell phones don't. Clunky receivers provide a cleaner sound for the hearing impaired. Landlines are often cheaper than mobile phones.
A landline also provides connection to trusted healthcare providers. Until February Richard Slater of Sharonville, Ohio (population 13,998) had depended on his landline. Slater, a disabled resident of a retirement home shared his frustration in March with Cincinnati-based WCPO. He'd used the phone, he said, to connect with physicians and care facilities. But now the line is dead. “They tell me mine can’t be fixed until a whole new phone system is installed," Slater recalled. Management told WCPO they hope to find a new company to support residents' landlines. In the interim, residents can use a Life-Alert ("I've fallen and I can't get up,”) button-type emergency system.
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In her final years, I would nudge my mother. Have you seen someone about your cough? When was the last time you had a physical? It seems as if you're losing your voice a lot. She'd brush me off, then end the call. I was never my mother's ally and she wasn't my first on speed dial either. I thought she didn't answer because
I didn’t deserve it.
She didn’t care.
I didn't ask often enough.
It was too personal.
I didn’t ask the right questions.
She didn't want to burden me.
I'd overstepped.
I wouldn’t understand.
but I don’t really know why.
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I walk into Janet’s makeshift bedroom. The room clings to late summer heat. A solitary window unit rattles in the next room. Queen Elizabeth II is on the cover of a magazine resting on Janet’s bed. "Janet, what happened to your glasses?" I ask. The Queen, bespectacled and tiny, waves in a publicity photo for her Jubilee. As Janet peered at her phone, I realized that she used to wear glasses.
"I lost them a few years ago." she replied.
I'm dismayed. We don't see each other that often but physical details stick with me. The part of your hair. Flats vs heels. The bag a friend carries. Janet’s lost glasses feel like a missed clue. As if her looming death is payback for my lack of attention. This is arrogant and also impossible. My presence is unspecial. But the uneasiness lingers, a cold I can’t shake.
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2.4 million older adults on Supplemental Security Income (SSI) receive, on average, $575 each month. Older women annually received about $3,900 less than older men. This is due to lower lifetime earnings, time taken off for caregiving, occupational segregation into lower wage work, and other issues.
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Some days, Janet would push aside her tray of remotes and janky old phone to give me some curio for Elisabeth. A tiny ceramic cat that had been rattling around a kitchen drawer. Stickers that came with the order of a new nightie. Janet’s long-time best friend comes to stay for a bit. Together, they make a peach pie. Janet cuts me a wedge and sends me home with a hefty piece for my husband. She always remembers his sweet tooth. Evenings when I leave, Janet asks me to turn on the lamps in the front room. "They're on," I tell her. I flick on the porch light, too, and call back, “I love you.” Her raspy “love you,” trails me home.
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Ronald Epstein is a family physician, palliative care physician and author of the book, Attending: Medicine, Mindfulness and Humanity. He does something that few other doctors do: give out his home number to patients. The gesture rings of Marcus Welby. Twinkling eyes, asking about his patients' kids by first name when he makes house calls.
My phone vibrates early one Saturday morning:
“I just wanted to tell you since you are in the car that the tea you got yesterday is already going bad. You got it yesterday? If you got it yesterday, you need to get a new gallon.”
Far from being tied to the phone, Epstein says in his book, he finds the opposite: patients call him and the practice less. "They (patients) don't feel the need to repeat and amplify their concern. Knowing that they can reach me makes them feel that I'm present."
Yesterday, she groused, “What would you be doin' if you weren't here?” I want to say I answered "nothing," but even dying, Janet could see through walls.
Tell me what you need, Dr Epstein says when he hands over his phone number scrawled on a prescription sheet.
Experts estimate that only 5% of landlines will still be in use by 2030.
I pick up my keys.
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The home health aide, B, tends to run late. Two doors down, I’m a convenient stop gap. The ugly metal of Janet's hospital bed groans as I move my favorite chair right up against it. When I’d rolled my eyes at her meandering sentences, my lilac was in bloom. Now spitting distance from Labor Day, I sit here under an arrow of time and wait. Janet’s words are functional as a field guide. Where's my phone? I can't find the third remote. I need my tray. Her face is stormy. Helplessly, I look around. Mountains of unopened adult diapers. Water browning from old daisies wilting in too moist heat. A Chik-Fil-A cup dewy with damp. Pill bottles, a Yeti water tumbler with bendy straw, nail file.
Janet chooses another remote, clicks to a rom-com. I pick up the Chik-Fil-A cup and venture into the kitchen to freshen her tea. How much of the jug is left? A venti coffee from Starbucks sits on the counter, cold to the touch. A full gallon of tea in the fridge. The front door slams. B calls out. I walk back to Janet and set down the icy tea. B greets Janet, heading into the kitchen. Janet's eyes are closed, the television hushed.
"Janet,” I murmur. "I'm gonna go. I'll see you tomorrow."
“Ok,” Janet replies.
There's no laundry to take but I see Janet’s faded gardening hat, kicked like a dog into a corner. When she's outside, she's never without it. "I'm taking your hat," I tell her, picking it up.
"Good," Janet says, without opening her eyes.
I flip up the porch light and head out the front door.
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Like many of us, Janet was a person of habit. She banked with the same credit union since the 1980s. Lived in her childhood home most of her life. Janet went almost daily to the N. Roxboro Street Chik-Fil-A for the sweet tea she loved. What might it have meant to have her doctor's home number? She wouldn’t have called much. But like Epstein’s patients, knowing that she could reach her doctor would have helped her feel like he cared.
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Bed pans. Lingering sores on Janet’s back and buttocks. Nightgowns that grow giant, become tangled. Oxy, as much as she wants. Weight dropping off her slight frame like the sure leak of a cracked pipe. Constant pillow shuffling. Janet losing the use of her left arm (looks fine, doesn’t work). Starting and stopping sentences. Janet mixing up people’s names. Catheters falling out.
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Americans live the shortest lives and have the most avoidable deaths, compared with nine other high income countries.
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I'm at the gate waiting to board my connecting flight when my phone rings. Words are coming from the person on the other end but all I can think is, "my plane hasn't left yet." The weather is cloudless with clear morning light stippling an otherwise nondescript terminal. I must have said something because the call ends. I'm in Baltimore, it's 9:01 am and my mother in Denver is dead. "Hi, we don't know each other but my mother just died, “ I imagine telling the passengers around me. Their shocked faces, uncertain what to do with me. Instead, I stay in line, waiting for my turn to board. In the plane, I settle into a window seat and fasten the safety belt. When the flight attendant starts to speak, I note the emergency exits are behind me.
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Friends and family surround Janet. Daily fresh flowers from “her fireman”, a neighbor who she adores. Visits from a toothless Chihuahua. (All animals love Janet and she loves them.) A gift to Janet, a stuffed emu, is given to my daughter, "tell Elisabeth Emi would like to sleep with her tonight." She knows Emi will be treasured. (Indeed, Emi comes with us to Berlin.) Holding Janet's hand when she offers it, telling her I love her.
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Wednesday evening, the porch light is not on. The next morning I text L.
You can turn it on Elizabeth, he replies.
Under a peerless sky, I find the stiff lockbox. A click and the door swings open. My right hand grabs at the wall switch. I swipe up. Nothing. The house holds Janet’s absence like a vacant landmine. Blackness roils around me and the earth dips. The backs of my eyelids sting hot.
I’ll fix it, L says when I text. His patience with me is soft like cake and I’m grateful.
On Sunday, L calls. It’s fixed, he tells me.
I walk up. Janet's house sits heavy on hollow haunches. Goose bumps prickle my arms. Again, I let myself in and find the switch. There, there. Dusty yellow light floods the front porch. Then. A scuttling shadow pulls my gaze. The mahogany carapace of a cockroach gleams as it slips around a stone planter. I yank the front door and bolt it. Sweet air dilates my lungs. I ask no more questions, disappear into the night.
What I’m Reading Right Now Just Finished Reading:
Book. (Non Fiction) Legacy by Uché Blackstock, MD. Equally parts memoir and analysis of the inequities and bias Black people face in healthcare today. A generous, accessible read that everyone should read and share with others.
Book. (Fiction) The Ministry of Time by Kaliane Bradley. Part spy thriller, part historical fiction, this breathy read will leave you rapt. Delicious dialogue, this book is fun and tense. A fabulous first novel. And yes, I cried.
Recommended Links:
Janet was a voter! If you have moved, not voted recently or are perhaps unsure if you are registered, you can head to this website to find out.
Here’s a list from Blue Ridge Public Radio with ways you can help support Western North Carolina’s ongoing high needs post Hurricane Helene. I’m concentrating my own efforts on NC because that’s home but drop links to organizations you’re close to in the comments.
Not a link but a recommendation ——> head outside. I bet even your weather has finally chilled a bit. Look at how the light hits that tree in the far back yard. Or compare sunrise and sunset. Say “hello” to a neighbor while you’re out there.
This was a LONG one and I don’t take the gift of your presence for granted. Thank you, as always for being here, dear reader. If you appreciated this piece, please like, share or leave a comment. <3
Conversations with Janet made the time stand still for me, for a moment. Thank you, Janet!
From the day I didn't have a landline and used a cell phone instead, my father couldn't understand me anymore on our weekly calls.
I can’t love this enough. I never got to meet Janet but this piece is an ache in my heart and so beautiful it hurt.