ST. LOUIS -- All morning, nurses had been coming in, taking vitals, offering blankets, pressing buttons to silence alarms. It would stay quiet for a bit, but then the beeping would start again, telling Tammy Clemons over and over that she was back in the emergency room.
She wished she were elsewhere. She wished she were with her sister, who'd just had a stillborn baby in a different hospital, three miles away. Instead, she was here, in the middle of her own emergency, hooked up to IVs, monitored by machines that wouldn't stop ringing. "Could be the blood pressure," one nurse said -- high enough to set off an alarm, but not high enough to need fixing.
The nurse went to the computer and logged in. "What's your pain right now?" she asked.
"It's a eight." Eight was bad. Eight felt like her insides were rebelling, like they no longer wanted to be a part of her and were trying to get out. Still, it was better than it had been.
The pain had started on Friday, while she was at the beauty supply store where she worked. A customer had asked for some extensions -- the nice ones, made of real human hair, which hung high behind the counter and sold for $300. When Clemons had reached up with the grabber, a sharpness in her belly made her gasp. She'd tried not to show it. She often got this double-vision when a sickle cell crisis came on, the intrusion of the pain itself, but also the specter of what others might think, whether they'd believe her illness was real, whether they'd dismiss her as lazy or drug-seeking. The disease could be unpredictable: long-neglected and stigmatized, with limited treatments and boundless complications. What her customers saw of it -- that, at least, she could control.
She was 41, and had spent too much time in the hospital. She knew the drill: how to unclip your oxygen monitor and take your IV bag when you went to pee in a cup, how to tilt your head back when they swabbed you for viruses. This was where she'd gotten a personalized pain treatment plan, so she no longer had to go from emergency room to emergency room, sometimes five or six in a day before she got adequate help. This was where she'd gotten her most recent chest ports for regular blood transfusions, where she'd come when they'd gotten infected, where they'd been taken out.
Sometimes, she didn't even tell her mom she was here. She didn't want to worry her. She remembered how scared her mom had been when Clemons' ports got infected, how scared she'd been when Ryan was driving high and crashed and landed in the emergency room. Ryan was Clemons' youngest brother, the baby boy, her mom's favorite. He used to call Clemons. Can I get some money, sister?
You're going to hear my mouth, she'd say. You don't need no money. What do you need money for? She'd give it to him anyway. Sometimes she wouldn't pick up and he'd just pop by her house. She loved seeing him there, almost in spite of herself. She would take him to Applebee's for steak, salad, and baked potatoes. Both of her brothers lived fast, liked shoes and cars. Though she didn't approve, she would go watch them race on Sunday nights, out on Hall Street. That's how she liked to remember them, whizzing by with the windows down, grinning like little kids, as if they didn't have a care in the world.
Ryan overdosed in May of 2020, at 27. Clemons had suppressed the details, unable to recall even the most basic facts about his death. Then, a month later, they lost Alonzo. It was the grief, people said. He'd stopped going to dialysis and his kidneys failed. He was 33. Her sickle cell pain spiked that summer, and she found herself back in the hospital. For her, the crises came in waves.
Now, a nurse unscrewed her IV from the fluid drip, attached a syringe in its place. Slowly, carefully, she pushed the plunger in, sending a stream of opioids into Clemons' arm. Too fast, and it could mess with her breathing.
"I am unfortunately going to have to swab you," the nurse said, unpeeling what looked like a long, spiky Q-tip.
"I hate that test," Clemons said. But she leaned her head back, gagged as it went in.
Hard to say what exactly had set it off. For her, the world was veiled with risk, a threat lurking in the smallest things, things most people hardly had to think about. The day before had been balmy, with tornado warnings and an eerie greenish light -- summer come early, runners out in their shirtsleeves -- and that could've done it, the shift from cold to warm to cold again. It could've been some bug at work, something a customer didn't even know they had. She wore a mask behind the counter, but that wasn't foolproof. It could've been something in the air, triggering her asthma, which in turn triggered her sickle cell. It could've been plain old stress.
Inside her, the cells that carry oxygen were warped, catching on the inside of blood vessels, hooking onto each other like sticks in a storm drain. It slackened blood flow, starving tissues. That was the screaming in her belly and back and legs. She sat at the edge of the bed, scrolling through TikToks.
The doctor came in. "We're still waiting on the results from the urine," he said. "If the pain is still pretty bad and it's been going on since Friday, and a couple of doses in a row of the IV isn't really enough, we're going to have to admit you to the hospital."
She didn't want to be admitted to the hospital. She wanted to go home. She'd tried not to come at all, hydrating, resting, waiting it out as long as she could, but by dawn on that Tuesday morning it had become unbearable. She called 911, rode the ambulance in the half-light. That was six hours or so ago. She'd already gotten three doses of opioids. The next step, the doctor said, would be a pain pump -- a button she could press, to give herself smaller but more frequent doses. She hated the pain pump. It was supposed to give her more control, but could feel like less. Physicians preferred it for its lower risk, but to Clemons, those blips of relief never felt like enough.
"Do we have to?"
"No, don't worry, we can't make you do anything you don't want to do," he said.
It was true. They couldn't admit her against her will, couldn't force her to take tests or meds. There was aways a tradeoff, though: the test she hated but couldn't do without, the procedure that scared her but might keep her out of the emergency room -- choices that hardly felt like choices. She liked Barnes-Jewish Hospital, trusted her main doctor, a sickle cell specialist. In the years since she'd become a patient here, Clemons had become an expert, conversant in the jargon of the disease. Avascular necrosis meant a loss of blood flow to the bone, killing tissue. Pheresis meant siphoning her blood, filtering out the sickled cells and replacing them with healthy ones from someone else.
What you chose depended on what you knew. It was at Barnes that she'd learned people with sickle cell could have children after all. As she started coming here, she'd seen other patients with kids in tow. She hadn't thought that was possible. Her old family doctor had told her that if she got pregnant, she would die, or her baby would die, or both. Or she'd have to spend all nine months in the hospital.
The best option, he'd said, would be a tubal ligation. Her grandmother, who was with her at the appointment, agreed. They scheduled a surgery date. Clemons was 18 or 19 at the time, didn't know much. She remembered being scared, before the operation: She'd never had a transfusion before, and she worried that the blood they wanted to give her might infect her with HIV. If she'd known more, she would've held off. She would've liked to have a child, maybe two. She wasn't angry at her old doctor. She just wished she and her family had known more. Clemons was the only one in her family with sickle cell; whatever the doctor said felt new.
She'd grown up in North County, the St. Louis suburbs up between the interstate and the airport, made briefly famous by the police brutality in Ferguson. She was from Dellwood, one town over. Though she and her mom were always close, she'd been raised by her grandmother, who'd come up from Mississippi and worked cleaning houses. Her grandma was strict, made her come in when the streetlights clicked on, only let her cheerlead if she wore shorts underneath the skirt. To talk to boys, she had to bring the landline into her room to sneak calls. She missed her grandmother. She remembered how she layered old bread into pudding, how she got dressed up for doctor's appointments.
"Your urine came back with bacteria, so this is an antibiotic," a nurse was saying now, holding up a vial. That could've been the culprit, the trigger for this whole crisis.
"Is it a stinky one?" Clemons asked. She laughed.
"I don't think it smells, but that could just be me," the nurse said, scanning the tag.
"I had an antibiotic that smelled like cat's pee," Clemons said. The nurse detached the bag of fluids, began screwing on the syringe instead. No, it wasn't the cat-pee antibiotic, it was a different one, the same yellowish color but no terrible smell, it would clear up the bacteria and the crisis would die down and she could go home, she could go see her sister -- and suddenly she was retching, the nurse lunging for the garbage can. Clemons clung to the sides of it, gasping.
The nurse rubbed her back, kept asking if she was OK. They would hold off on this one, find a different antibiotic. When Clemons' breathing was less ragged, she leaned back in the bed, and the nurse went to the computer.
"On a scale from zero to ten, what would you rate your pain right now?"
Nothing about this disease felt simple. It was Thursday, and Clemons was back on an exam table, but in the sickle cell clinic this time. She'd been discharged after one night, had been able to go home and sleep, and she looked like a different person, playful, smiley, alert, no longer wearing a badly tied hospital gown but dressed like herself, hair combed back, with lash extensions and make-up.
"Because that's the only thing that was working. Since I've been off of it -- "
"Tammy!" Saif cut her off. "You need to decide, though."
They'd been through this before. Ports often got infected -- vegetation, doctors sometimes called it -- and Clemons had experienced it more than once. Port placement, infection, removal, replacement. The last time, she'd gone in for the replacement -- and then changed her mind at the last second. She'd been afraid the holes in her chest might once again land her in the ER with bacteria moving toward her heart. "I was just so freaked out," she said. "But I think I need it."
Saif leaned close to look at her chest, both sides gnarled with scar tissue under the clavicle, where the ports had been. Her voice softened. "I do hear you."
Saif hadn't wanted to treat sickle cell. She'd wanted to treat lung cancer. She'd come from Lahore, Pakistan, for a residency in Buffalo, and then fellowships in Atlanta and St. Louis, with the dream of shrinking tumors. But if she wanted to stay in the U.S., her visa required her to find a job treating the underserved, and the job she found was as a hematologist here at Washington University.
That was where she began to see patients with sickle cell. Many landed in the hospital over and over, unable to access treatment until their pain was so bad they wound up in the ER. There had to be something she could do. Once she started, she couldn't stop. She and her one physician colleague were among the only hematologists specializing in sickle cell for hundreds of miles. Some patients traveled over three hours, from across Missouri and Illinois and Arkansas. She didn't know what they would do if she quit.
The people she hadn't initially intended to treat were now the ones she couldn't bear to leave, and she'd arranged her life around them. Her husband was an ICU physician in North Carolina. She could've looked for jobs elsewhere; she had a green card now. Instead, she decided her marriage could be long-distance, a marriage of flights and visits and phone calls.
Being a sickle cell doctor here wasn't just worrying about hemoglobin levels and hydroxyurea side effects and prescriptions of Dilaudid versus Suboxone. It was encouraging one patient to get on the list for a $2-million gene therapy and buying another one a charger because he didn't have the $10 or $15 that would afford him a working phone. It was begging other specialists to reschedule appointments when her patients were no-shows. It was paying for an Uber to the Medicaid office, straight from the hospital, so someone had coverage for medical bills.
For a few patients who were hard to reach -- phone service cut off, housing unstable -- Saif would call them when they landed in the emergency room. Come see me every week, she'd say. A standing appointment would be easier. She'd done that with Clemons, when Clemons was still going from ER to ER. Then, Saif could treat complications the way they occurred, entangled in someone's life. Making sure oxygen was reaching the retina, she knew, sometimes depended on making rent.
Now, they talked about Clemons' blood pressure, how it had been normal less than two weeks ago, how it was probably high because she was in pain and Saif was wary of prescribing meds in that case, but she'd keep watch over it. Saif asked after Clemons' boyfriend of 15 years. They gossiped about the brand-new treatment center, just for sickle cell patients, how the hospital president had shown up for the ribbon-cutting, how there was cake. Clemons had heard about it through the grapevine. "Good friends in high places," she said, grinning mischievously.
"Are you still working?" Saif asked. Some patients were just too sick, and Clemons felt lucky that she could. It was important to her, to keep her mind off the pain, to have a life outside of the hospital.
First, she needed to see her mom. She needed to know how her sister was doing. When she arrived, her mom was at the kitchen table, car keys ready, ashtray in use, waiting for a phone call. There had been yet another crisis -- one daughter just discharged from the hospital for her sickle cell, another daughter still being monitored after a stillbirth, and now a granddaughter who'd landed in the ER after trying to harm herself.
This was Ryan's kid, Clemons' niece. She was 15. Clemons' mom had gotten the news at 1 a.m. Last she'd heard, they'd transferred her to a psych ward.
"Dang." Clemons leaned back against the fridge. "Is she doing OK? Can we go up there and see her?" She often talked about tragedy with a smile, as if it were far away, unreal, as if nothing could shake her or push her off course, but something in her crumpled now. This one felt close.
Her mom's voice was low, husky from cigarettes or lack of sleep or both. Her granddaughter was OK, she said, she was sleeping now.
"I know you're worrying; I can see it on your face," Clemons said.
"As a mother, a grandmother, y'all will always be on my heart. Always." She sounded stern, all of a sudden, almost angry. "You never stop being a mother. Until God calls me home."
They sometimes talked to each other in this tone, the care so urgent it came out harsh. In some respects, Delores and Tammy Clemons were similar. They both loved roller-skating, both loved spending time alone, Clemons' mom here in her kitchen, the fly-swatter and oven mitts on the walls, light coming in horizontal through the back window, Clemons in her apartment in Dutchtown. She would light a scented candle, and pop bubble wrap, bubble by bubble. She bought it by the roll at Family Dollar, a habit she'd picked up from the manager at work, who said it kept her fingers moving and prevented diabetic blisters.
Both Clemons and her mom knew what it was to stare down loss. If you hadn't lived it, you didn't know. Clemons thought about how often she'd told Ryan to quit calling, how much she wished he could call her now. And his daughter had lost her dad so suddenly, so young. Such a sweet kid. She'd never done anything like this before; there was no warning, as far as they could tell.
Clemons had her sister to worry about, too. The stillbirth had happened on Sunday, four days ago.
"They're trying to work on her blood pressure," her mom said.
"Oh, so she's not going home today?" Clemons asked. "Aren't you glad you didn't go up there, the way you wanted to?"
Her sister hadn't known she was pregnant. She'd gotten sick at work and gone to the hospital, where they did the test, and said that she was five months along, but that the ultrasound didn't look right. The doctors let her hold the baby for a day or two, to take what time she needed to say goodbye. She'd always said she didn't want kids, but then seeing this one, something in her shifted. "She's probably buried about now," Clemons' mom said.
Another relative had brought over flowers, which she was trying to keep alive until her daughter got out. A few lilies were still unopened, but the daisies drooped.
Her phone rang. She kept getting spam calls -- but this time, it was the call she'd been waiting for, the nurse at the psych ward. Her phone was on the table, and Clemons' mom leaned her face close. "And when can I come and see her?"
"Visiting hours are 4:30 to -- " The nurse interrupted himself. "Now are you the guardian, or..."
"I'm her grandmother."
He would have to check with the patient's mother about who was allowed to visit, who was allowed to receive information.
"If you can't get in contact with her, because she don't answer her phone, y'all can feel free to call me."
"OK, that's why I want to make sure you're on that list." He paused, looking through a document, murmuring to himself. "I don't want you coming up here if I can't get you on that list. Because they won't let you up here."
"I understand. But if you can't get in contact, you can feel free to call me. Any time."
She wrote the clinic's number on the back of an envelope. "Thank you, sweetheart," she said, and hung up. She'd been a nurse herself, working first for the state's mental health program, then in a rehab hospital, helping people after hip replacements and strokes and gunshot wounds. She was 56, retired now, after she'd gotten injured when a patient she was helping to the bathroom collapsed on top of her. It was those years of nursing that allowed her to see that she needed help after her sons died. She'd started with a counselor. Her doctor gave her some pills. Still, Clemons worried about her.
It was nearly 3. Soon Clemons would need to be at work. She was tired. Maybe she would try to sleep first. She took a yogurt drink from the fridge. She wanted to know her niece was OK, wanted to go there herself, to be with her, but knew she wouldn't be able to get in without being on the list either. She hated that it was like that. She wanted some resolution, some reassurance, a sense of certainty, but there was none.
Work was both an obligation and a relief. The door beeped as she walked in, through the familiar anti-theft gate. She was back, back behind the counter, in a sense of normalcy, under the rows of 100%-human hair extensions, hanging glossy in their packaging.
Here, with enough time and money, almost everything about you was within your control, every version of yourself easy to imagine, to try on and undo at will. There were dyes and dye-removers, gels to sculpt and relaxers to loosen, flat irons for straightening and curling irons for curling, weaves to give you locks or braids or tresses that fell down your back in lustrous sheets. With a dab of perfume, you could smell like Beyoncé, Queen Latifah, or Michelle Obama. With a spot of powder, you could make your face blemish-free.
Clemons loved it here, loved knowing every squeeze-bottle and aerosol and pomade-tub in the place, the pros and cons of everything. "You need some help?" she called out, and then led a woman about her own age down an aisle, past the combs and brushes, in search of beads. They were for the woman's 8-year-old daughter's braids, "just natural, no perm."
Had she tried clip-on beads, Clemons wanted to know -- and then they were chatting about the price of cuts, how you don't need scalp-grease with Care Free Gold, how this customer had had her hair two-strand-twisted but didn't feel like it just now and was letting it do what it wanted to do. "I hear you, girl," Clemons said.
Then, it was quiet, Clemons' friend CeCe off in the wig section, Ms. Sun, the manager, behind the counter, popping bubble wrap, listening to gospel. Ms. Sun was 75, from South Korea. She loved talking about her kids: the son that lived here in St. Louis, the other one who lived in Germany, the daughter who was gone.
Clemons unscrewed a vial of Queen Latifah Type fragrance, wrinkled her nose. She had made peace with having no kids of her own. She was so often in the hospital, she told herself, maybe it was a good thing. In 2019, she'd decided to get a hysterectomy. She had fibroids, and terrible periods, which sometimes lasted nearly a whole month and sparked crises. She didn't need an extra trigger. Are you sure? Dr. Saif had asked. You're so young.
But she was sure. Dr. Saif might've thought 35 or 36 was young, but to her that felt old, too old for starting to have kids. Her tubes had been clamped for over 15 years, her entire adult life, and it just felt like a fact: something she was sometimes wistful about, but that felt non-negotiable. Then, a year after she'd had her uterus out, she'd become a parent of a sort to Ryan and Alonzo's kids. There was plenty for her to worry about.
CeCe was back behind the counter, needling Clemons about not dressing warmly enough.
"Oh, I forgot to tell you," Clemons said. "They got a sickle cell clinic now, it's not for nobody else."
"It's a big deal for us. The hospital president came. And a whole bunch of other people."
For a second, it was as if she were there, at the ribbon-cutting, in the pale light of the new treatment center, hair done and lash extensions on. Even if she hadn't been at the celebration, the news was exciting. It was a kind of recognition. That was where she would go now for IV pain meds. She would still go elsewhere for her transfusions, though, if she got her ports back in. She needed to make that appointment. There were also prescriptions to pick up. And Dr. Saif had been trying to get her to see a pulmonologist, about the scarring in her lungs.
It was getting dark out, and cold, time for CeCe to go home. She put her stuff into her backpack. The door beeped as she walked out. Clemons leaned back against the counter, between the studs and gels, and tugged her mask a bit higher over her nose and mouth.