Ben Miller is well known for his roles in shows like Death in Paradise and Bridgerton. Although, the star has recently opened up about his life outside of the small screen, detailing his health battle with OCD.
Ben is the star of ITV crime drama Professor T, where he plays a sleuth with the disorder.
The Death in Paradise star has now opened up about his own battle with OCD.
He revealed to the Radio Times how he suffered badly with it when he was in his 20s.
Speaking about his character connection, he said: “I did struggle a lot with OCD, particularly in my 20s.
Ciudad Juarez, Mexico – For Claudia, the journey from her small Guatemalan village in Guatemala to the US-Mexico border was complicated by the fact she could speak only her native Ixil, one of 21 Mayan languages in Guatemala.
On way to what she had hoped would be asylum in the United States, she communicated with the smugglers with hand gestures and the few words of Spanish she knew, to ask for water, food, money, and to go to the toilet.
Claudia and her four-year-old son Manuel arrived at the US border at the end of December 2020. Her smugglers dropped them off at a highway right next to the Rio Grande and told her to walk past the dry river and turn herself in to the US Border Patrol. Claudia did not want her last name published for fear of reprisals.
She said the Border Patrol agents took photos, fingerprinted them both and sent them back to the Mexican border city Ciudad Juarez the same day. If they gave her any instructions, she did not understand them.
After eight months at the El Buen Samaritano shelter in Ciudad Juarez, Claudia has begun to speak some Spanish, but not enough to ensure she understands what’s happening with her immigration case, or what she should be doing.
“I understand more Spanish than I can speak. I try to tell everyone that I understand what they are telling me, but sometimes, it is hard for me to communicate, to ask some questions” she told Al Jazeera in halting Spanish.
Claudia and the dozens like her who do not speak a mainstream language, such as Spanish or Portuguese, can languish at the US-Mexico border for months or years, because there are few or no interpreters that speak their Indigenous language to help them navigate the immigration and asylum systems.
A long wait
Shelter director Juan Fierro said Claudia will likely have to wait a long time before she can apply for asylum.
“We have reached out to international aid organisations to try and find an Ixil interpreter because without one she won’t be processed” through the US system, Fierro told Al Jazeera.
Almost all of the 500 asylum seekers hosted at Fierro’s shelter from January to June 2021 have left to pursue claims inside the US after waiting between six to 12 months. Only those recently expelled back to Mexico and Claudia remain.
Fierro has hosted more than 50 non-Spanish speaking migrants and asylum seekers, mostly speaking only Mayan languages in the first half of 2021 alone – almost double from all of 2020.
“Most of them get tired of waiting for an interpreter and leave to go back to their hometowns. Only very few wait long enough to get an interpreter and start their immigration process”, Fierro said.
This year, the number of migrants and asylum seekers from small villages speaking only their traditional languages apprehended at the border almost doubled, creating a long backlog for the immigration legal system.
Amiena Khan, president of the National Association of Immigration Judges, said most cases regarding Indigenous language speakers are now being rescheduled because of a lack of trained interpreters.
“The problem we are seeing is that in our community there are too few Indigenous interpreters, especially for Mayan languages and cases are being rescheduled to where a judge can be confident that they get a proper interpreter”, Khan told Al Jazeera.
The US immigration court system already has more than 1.3 million backlogged cases, according to the Transactional Records Access Clearinghouse (TRAC) at Syracuse University.
At least 40 different languages are spoken by the nearly 30,000 migrants who had pending cases as of January, 2021 according to data obtained by TRAC.
“Although Indigenous and other rare languages make up a small number of pending MPP cases—just 337 out of 29,423—the need for language access presents unique challenges for both migrants and the Immigration Courts”, according to an April 26 TRAC report.
It is difficult to calculate how many migrants with rare languages could be in or about to enter the immigration system.
Given past numbers, speakers of Indigenous languages could amount to less than 1 percent of the total, but that is dozens or hundreds who could end up in a limbo of sorts.
“These cases will not come to us until December 2023, this means we already have a backlog, and that’s on top of whatever time it takes to find interpreters for most of the Indigenous community on an immigration process”, said Khan.
Khan said there is “a level of frustration” among immigration judges since this issue “is creating a mass inefficiency and backlogs”.
It is not just US immigration courts that must contend with Indigenous language-speakers waiting for cases to be handled, the US criminal court system is increasingly encountering them as well.
Pablo, a 25-year-old Rarámuri from an Indigenous tribe in northern Mexico, crossed the border into the US carrying a sack of cannabis as payment to his smugglers.
He was arrested in January, along with a group of Mexican migrants also carrying cannabis. While all of the others were able to communicate in Spanish to engage with the court to be sentenced, Pablo’s case is still pending and he remains in jail.
“Many of the Raramuri arriving at the border are not yet being taken into a court, primarily because they don’t speak the language and it is hard to find interpreters for them”, said Chris Carlin, a Texas public defender representing Pablo and another dozen Raramuri.
Carlin said that 10 years ago, when Raramuri Indigenous migrants were found at the border carrying sacks of cannabis, “The judge decided to let them go back to Mexico with only a warning, because they didn’t understand what was going on,” Carlin said.
Dale Taylor, a former American missionary, and full-time interpreter for Raramuri, said the amount of recent cases like Pablo is “alarming” and that there are too many for him to handle in person. Since January he has been asked to help with 42 cases.
Taylor said he is the only formally trained Raramuri to English interpreter in the US. Although he is aware of Pablo’s case, Taylor said there are 10 cases ahead of him.
Most of the Indigenous-language interpretation in US courts is done over the phone, by for-profit companies such as Lionbridge and SOS International. But while this has relieved some backlog of cases, judges say the remote system makes it difficult to assess the applicant.
“Each claim is heard individually based upon the facts. I have to make a credibility assessment for the individual before me, how can I do that if they don’t speak the language”, said Khan.
Odilia Romero, an independent interpreter of the Indigenous Zapotec language and co-founder of Comunidades Indigenas en Liderazgo (CIELO), said many of the interpreters aiding US courts do not have the skills to represent migrants at official hearings.
“The few interpreters at US courts are not educated or trained to properly translate for Indigenous immigrants. They are either gardeners or local workers who migrated from the same communities, but that doesn’t mean they know how to properly translate for a US immigration court,” Romero said.
Even if asylum seekers like Claudia and Pablo end up in court, after a long wait for a translator, there’s no guarantee they will be able to clearly communicate their case for asylum.
“This is not only leaving Indigenous immigrants at the very end of immigration courts but also violating a basic human right”, said Romero.
Claudia at the shelter said going back to Guatemala is not an option.
“I’ll wait, as long as I have to. I can’t go back to Guatemala, there is a reason why I left, otherwise I would have stayed there”, she said.
Almost 13,000 free-to-use cash machines closed between 2017 and 2020 – a drop of nearly 24 percent.
And since January 2015, 4,299 bank branches have shut.
To avoid the nation sleepwalking into becoming a cashless society which ignores the needs of millions of citizens, Age UK is calling for the urgent introduction of a Universal Service Obligation (USO) on banks, to guarantee access to cash for everyone.
Caroline Abrahams, Charity Director at Age UK, said: “This report demonstrates the continuing critical importance of cash in our society. It’s not only essential for older people but for us all, in a world increasingly compelling us to manage our money digitally.
“Protecting the cash system is essential for enabling millions of citizens to go about their lives, and since it was still widely used during the pandemic, when spending opportunities were few, it’s going to be all the more important for us once we emerge from it and return to some kind of normality.
“Older people who use cash and their local bank branch are finding it increasingly impossible to manage their money because more and more barriers are being put in their way.
“They don’t want to give up their independence by having to rely on a family member or neighbour, they want to keep control of how they do financial things – but they don’t want to or can’t do it online.
In April, HL surveyed 2,000 people and the results showed almost half of basic rate taxpayers don’t know the most tax-efficient way to save for retirement (43 percent) and only one in 20 people think a Lifetime ISA might be the most tax-efficient way to save for retirement (six percent).
Sarah Coles, a personal finance analyst at HL, commented on these results: “We haven’t a clue about the most tax-efficient home for our retirement savings.
“As a rough rule of thumb, for a basic rate taxpayer you get the biggest tax boost in a LISA and for a higher rate or additional rate taxpayer it’s a pension. But when asked to pick the most tax-efficient for them, half of people didn’t even want to hazard a guess, while among those who took a stab at an answer, only five percent of basic rate taxpayers picked the LISA.
“It’s hardly surprising there’s so much confusion, because when you’re weighing up the tax benefits of each, they aren’t even explained in the same language.
The soap star had told her followers at the weekend she was at “breaking point”.
She said in a video: “I wanted to see if everyone is enjoying the weather, because I’m not.
“I can’t breathe. I can’t see hardly, and this hay fever is off the wall this year.(sic)
“It’s not an enjoyable experience, and I’d like to pour Optrex into my eyes all day and get into a freshly-washed bed, which has been in the tumble dryer, unfortunately, not on a line, which you should want.
An off-duty flight attendant took control of the public address system and then fought with passengers and crew members on board a Delta Air Lines flight on Friday in the latest outburst of violent behavior by airline passengers, the airline said.
Delta said that Flight 1730, which had been headed to Atlanta from Los Angeles, landed in Oklahoma City after the off-duty flight attendant grabbed the public address system and made an announcement about oxygen masks, setting off a struggle with passengers and crew members who subdued him.
Video from the flight showed a violent confrontation near the front of the plane involving several people who wrestled the man to the floor, while someone said: “Get him down. Keep him down.”
“The aircraft landed without incident and the passenger was removed by law enforcement,” Delta said in a statement. “We apologize to our customers for the delay and any additional inconvenience this caused.”
The Oklahoma City police said they had removed a man from the plane and had taken him to a hospital, where he was released into the custody of the F.B.I.
Megan Lauro, a spokeswoman for the F.B.I.’s Oklahoma City field office, confirmed on Saturday that the agency was investigating. She said the man was in jail and being interviewed. She declined to comment on possible charges.
Benjamin Curlee, 29, said he had been seated about four or five rows from the back of the plane, which was about two hours away from Atlanta, when a voice came over the intercom and told everyone to take their seats and prepare to put on oxygen masks.
“That made everyone extremely tense, but they started complying,” Mr. Curlee, who described the ordeal on TikTok, said in an interview on Saturday.
Only later, after the plane had landed, did he learn from other passengers that it was the man who had fought with passengers and crew members who had made the announcement about oxygen masks.
After a “very long two minutes,” Mr. Curlee said, the captain came on the public address system and asked “all able-bodied men” to come to the front of the plane for an “emergency.”
About half the passengers jumped up, according to Mr. Curlee, who said he was about halfway to the front of the cabin when the flight attendants told everyone to return to their seats because the situation was under control.
The episode came amid what the Federal Aviation Administration has described as a “significant increase” in disruptive behavior on flights starting in late 2020.
Both airlines announced the policies after a widely watched video showed a woman punching a flight attendant in the face on a Southwest Airlines flight from Sacramento to San Diego on May 23.
The flight attendant lost two teeth in the assault, according to her union, and the passenger was charged with battery causing serious bodily injury. The passenger was also barred for life from flying Southwest, the airline said.
Late Thursday night, a Delta flight from Los Angeles to New York was diverted to Detroit after a passenger became unruly, CBS News reported.
Dana Jacobson, a co-host of “CBS This Morning: Saturday,” who had been on the flight, said on Twitter that another passenger had told her that a “drunk passenger in the back of the plane” had been “out of control drinking from a bottle.”
Steve Dickson, the F.A.A. administrator, said in a videotaped statement that the agency has a “zero-tolerance policy” for passengers who cause disturbances on flights or fail to obey instructions from the flight crew.
Passengers, regardless of their vaccination status, must wear masks on planes and in airports, he said.
“But this isn’t just about face masks,” Mr. Dickson said. “We’ve seen incidents related to alcohol, violence toward flight attendants and abusive behavior in general.”
DULUTH, Ga. — It was already 1 p.m. when Randy Park tumbled out of bed one miserable March day. It had been another long night of TV and video games to distract himself from the emptiness swirling through the townhouse where his mother had once cooked meals between her shifts at a spa. He padded down the hallway, past her vacant bedroom, and nudged his younger brother, Eric, awake.
It was past time to face another day on their own.
In the immediate aftermath of the deadly shootings in the Atlanta area, the faces of Randy and Eric Park, now 22 and 21, seemed to be everywhere, their winsome images linked to a GoFundMe page established after their mother, Hyun Jung Grant, was killed. They were overwhelmed by financial donations, care packages, reporters at their door, and so many calls that Eric’s cellphone froze.
But in the months since, on the cusp of adulthood, the Park brothers have been largely left to navigate the world by themselves.
Sorrow takes many shapes after a mass shooting. Those left behind in the Atlanta area include Mario Gonzalez, whose new wife, Delaina Ashley Yaun, was a customer at Young’s Asian Massage. They include the grandchildren of Suncha Kim, who immigrated from South Korea in 1980. And they include Randy and Eric Park, whose anguish is compounded by the knowledge that their single mother was killed doing a job she disliked, part of her life that they knew little about and that kept her away from home for many hours.
“She died working for us,” Randy said. “It’s just unfair. She already didn’t have much of a life to begin with.”
The path forward for Ms. Grant’s sons is now murky, the questions before them both mundane and profound. Will they return to college or to work? What will they do with the money — nearly $ 3 million in all — that poured in to support them? What will they make of the rest of their lives?
Before all that, though, they are simply trying to learn to sustain themselves through their grief, recreating familiar rituals, imperfectly, to comfort themselves through long days.
The Park brothers live in a Korean enclave in suburban Atlanta. Until recently, Randy worked full-time at a nearby bakery and cafe. Eric was struggling in remote courses at Georgia Gwinnett College. The pandemic and their mother’s death put an end, at least temporarily, to those pursuits.
Growing up, the brothers believed they knew how to get by on their own because their mother was often at work. But the past few weeks have revealed all the ways in which Ms. Grant parented from afar: cleaning the house between shifts, cooking large meals that could last for days and calling every night from work to check in.
A Rise in Anti-Asian Attacks
A torrent of hate and violence against people of Asian descent around the United States began last spring, in the early days of the coronavirus pandemic.
Background:Community leaders say the bigotry was fueled by President Donald J. Trump, who frequently used racist language like “Chinese virus” to refer to the coronavirus.
Data: The New York Times, using media reports from across the country to capture a sense of the rising tide of anti-Asian bias, found more than 110 episodes since March 2020 in which there was clear evidence of race-based hate.
Underreported Hate Crimes: The tally may be only a sliver of the violence and harassment given the general undercounting of hate crimes, but the broad survey captures the episodes of violence across the country that grew in number amid Mr. Trump’s comments.
In New York:A wave of xenophobia and violence has been compounded by the economic fallout of the pandemic, which has dealt a severe blow to New York’s Asian-American communities. Many community leaders say racist assaults are being overlooked by the authorities.
And without the guidance of their mother, who immigrated to the United States before her sons were born, their neighborhood can feel foreign. She was their connection not only to the community but also to their Korean heritage.
Without her, even the most basic tasks can become baffling ordeals.
On a recent evening Randy researched a recipe for the sort of kimchi stir fry his mother once made for them and set out for supplies: green onion and seaweed, red pepper powder and a tin of sesame oil. Shopping at the Korean grocery store H Mart evoked fond memories. As a young boy, he would hover over the live crabs, poking at them with tongs until his mother stopped him. They picked produce together, chatting about his love interests and future plans.
But the store where he had frequently accompanied her now felt like an unsolvable maze. Which aisles? Which brands? He tried to avoid eye contact with other shoppers who recognized him from the news.
Back home, he and Eric puzzled over the recipe.
“Do we have a skillet?” Randy asked.
“Well, a skillet is basically a pan,” Eric replied.
Randy looked inside a cabinet and pulled out a large pan: “Is this a skillet?”
“No that’s more of a wok.”
Was a teaspoon the same as a tablespoon? Why had all the onions rotted?
Randy mixed the red pepper paste with sugar and, realizing he had miscalculated, sighed deeply. “I should’ve thought this through.”
They ate beside each other at the dinner table, staring at the third chair where their mother once sat.
Truth be told, there was a lot about Hyun Jung Grant that her sons did not know.
She had told them she was a teacher in South Korea and briefly lived in the city of Busan before moving to Washington State, where she found work as a waitress. She married and divorced, but the Park brothers never had a relationship with their father. Ms. Grant and the boys moved to Atlanta more than a decade ago to live among more Korean families, first in an apartment and more recently in a rented townhouse.
Along with other Korean immigrants, she worked at Gold Spa in a stretch of strip malls in northeastern Atlanta. Giving massages was an exhausting job that required long hours. Sometimes she stayed overnight for days at a time. She aspired to something more — a better job, a home that she owned — and did not talk much about her work, preferring to tell some people she worked at a makeup counter. But she had bills to pay and was determined to put her boys through college.
Many nights Randy and Eric had found themselves home without her, awaiting her check-in call.
How was your day? Have you eaten? Is your younger brother home?
When Randy was young, a babysitter told him to consider himself Eric’s second “umma,” his substitute mother. Now, it is a role he fills in earnest.
After the shooting, he instinctively shielded his younger brother from the burden of decision-making. On his own, he shuffled from meeting to meeting, preparing his mother’s burial arrangements with the funeral home, sorting through finances with a newly hired financial adviser. He eventually forced himself to get his days going early, filling his mornings with the errands required of the head of the household.
Even now, he takes charge of meals and laundry, and the lingering logistics connected to their mother’s death. “I can’t just drop everything,” Randy said. “I have a responsibility.”
Eric often stays in his room, drifting in and out of sleep. Recently, he signed up for weekly driving lessons, but often he binge-watches shows like “Crash Landing on You,” a popular South Korean drama, waiting for his friends to finish class so they can play League of Legends in the evening. His room is littered with empty Starbucks to-go bags and smoothie cups.
The brothers were not close growing up, but their grief has drawn them to each other. Together, they saw their mother’s face for the final time at the funeral home. Together, they flipped through her photo albums in preparation for her memorial. They have discovered family pictures that their mother took and saved on her phone. They seek each other out when they are feeling lonely.
One April evening, Randy invited Eric to join him and some friends at Assa Tech Karaoke in Duluth, a rare night out for singing and conversation. It was Eric’s first attempt at karaoke, an activity he had hoped to enjoy with his mother.
Randy and his friends belted out a decent rendition of “Location,” by Khalid. And then, at Eric’s behest, the brothers tried one of the few songs they knew in their mother’s language. On opposite sides of the room, they kept their eyes glued to the lyrics on the screen, avoiding eye contact. Eric stumbled on some words, Randy held a few notes too long, but by the chorus, they got the hang of it.
They sang in sync in Korean until the very end. “Bogoshipda” — “I miss you.”
Slowly, the brothers are contemplating a future for themselves. Eric plans to return to college sometime next school year. Randy is considering finishing his last few semesters at Georgia State University or perhaps enrolling in a boot camp for computer science. They imagine a trip to South Korea to meet their mother’s family.
Among the most difficult parts of Hyun Jung Grant’s absence for the Park brothers is the long list of future trips and milestones they had hoped to spend together.
That reality sunk in on Eric’s 21st birthday, which would have also been his mother’s 52nd. For years, they had planned to share a drink when Eric was of age.
And so, on the morning of May 4, Randy and Eric tried their best to recreate the celebration their mother had in store. They purchased fruit cake from a nearby Korean bakery and searched the city for a bottle of Chamisul soju, a Korean distilled spirit, before driving to her grave.
It had been storming for days, but as the brothers walked across the field, the rain scattered and only clouds remained.
Randy led the way, having visited several times for burial arrangements. They spilled the liquor around their mother’s grave as an offering and ate their cake from paper plates.
They stayed, in silence, for half an hour, unsure what to say to each other. “Are you hungry?” Randy asked. Eric nodded yes, and they left.
Lewis Hamilton will start on the front row in Baku, Azerbaijan after Ferrari’s Charles Leclerc claimed pole position for the second race in a row. Equally, for the second successive race, it’s come from a red flag, after an incredibly close qualifying session.
After four red flags with Lance Stroll, Antonio Giovinazzi, Daniel Ricciardo, and Yuki Tsunoda all planting their cars into the wall, Max Verstappen will start third despite Red Bull showing real promise as favourites for pole throughout the whole weekend.
The final red flag hampered fast laps at the end of qualifying for many, including Verstappen, with the session being stopped due to Tsunoda hitting the wall, and a stricken Ferrari of Carlos Sainz Jr obstructing the track.
Hamilton, however, had struggled all weekend, especially in the first two practice sessions, but said Mercedes ‘won’t take no for an answer’ after a ‘disastrous’ weekend so far.
“The lap was OK. We definitely weren’t expecting that,” admitted the seven-time world champion.
“This is such a monumental result for us. We’ve been struggling like you wouldn’t believe all weekend.
“You can see it. We kept our composure and we continued to have difficult discussions in the background and kept challenging one another and never took no for an answer.
“We’ve moved around and made so many changes over these two days chasing our tail. It’s been so difficult. The work overnight and particularly between the sessions was amazing from the team. I’m really proud of everyone for keeping positive.
“To be up there and so close to these guys, it’s a great, great start.
“It’s crazy trying to squish these tyres on and find the envelope for this car. It’s been the biggest challenge we’ve had in a long time, trying to understand what the car really wants.
“She’s not been happy all weekend. It’s been a bit of a disaster. But even Valtteri getting into the top 10 is a massive leap and it’s down to great, great, great teamwork.”
NASHVILLE — She struggled through the night as she had so many times before, restless from sickle cell pain that felt like knives stabbing her bones. When morning broke, she wept at the edge of her hotel-room bed, her stomach wrenched in a complicated knot of anger, trepidation and hope.
It was a gray January morning, and Lisa Craig was in Nashville, three hours from her home in Knoxville, Tenn., preparing to see a sickle cell specialist she hoped could do something so many physicians had been unable to do: bring her painful disease under control.
Ms. Craig, 48, had clashed with doctors over her treatment for years. Those tensions had only increased as the medical consensus around pain treatment shifted and regulations for opioid use became more stringent. Her anguish had grown so persistent and draining that she sometimes thought she’d be better off dead.
She was willing to try just about anything to stop the deterioration of her body and mind — and her hope on this day in January 2019 rested in a Nigerian-born physician at Vanderbilt University Medical Center who had long treated the disease, which mostly afflicts people of African descent.
That morning, she slipped on a cream-colored cardigan and a necklace with a heart-shaped pendant. She played some Whitney Houston before sliding behind the wheel of her black S.U.V. Her husband, in the passenger’s seat, punched their destination into his phone’s navigation system.
“Live as if everything is a miracle,” reads a framed quote on Ms. Craig’s beige living room wall, and that’s exactly what she was hoping for.
People with sickle cell, a rare, inherited blood disorder caused by a mutation in a single gene, typically endure episodes of debilitating pain as well as chronic pain. Roughly 100,000 Americans and millions of people globally, mostly in Africa, have the disease. Red blood cells that carry oxygen become stiff and curved like crescent moons, clogging blood vessels and starving the body of oxygen.
Promising developments in gene therapy have given people with the disease hope that a cure is on the way for an illness that often causes organ failure and premature death. But the first such therapy is more than a year from regulatory approval. It will almost certainly be extremely expensive, cannot reverse the disease’s damage to tissues and organs, and may come too late for people whose bodies are so battered by the disease that they might not survive the grueling treatment.
Most people with sickle cell are searching for something far more basic: a way to prevent or manage the disease’s devastating complications — strokes, depression and, above all, pain.
That search can be rocky, as I learned following Ms. Craig over two and a half years of struggle and heartache. I joined her on doctor’s visits, shared meals with her family, parsed her medical records, sat in on a therapy session and tagged along as she ran errands around Knoxville and relaxed at home. I saw moments of anger, sadness and agony, but also determination, joy and love.
Her efforts to find relief were complicated by a national opioid epidemic and the coronavirus pandemic, as well as the challenges of navigating a medical system that often mistreats Black people like her. At the same time, doctors were changing how they treated sickle cell as emerging research suggested that narcotics could actually worsen pain.
Ms. Craig felt doctors were prone to stereotyping her as an addict cadging narcotics and didn’t believe in the extremity of her suffering.
Racist myths persist in medical care, like the idea that Black people tolerate more pain than white people. Such stereotypes have led Black patients to receive poor care, extensive research suggests. That can be especially problematic for sickle cell patients like Ms. Craig, who describe rushing to the emergency room in agony and waiting hours to be seen, only to be sent home still in pain after doctors tell them that their lab results are fine and they should not be suffering.
Biopsies can detect cancer, X-rays a broken bone. But there is no definitive clinical test to determine when a sickle cell patient is suffering a pain crisis.
“This is the essence of the problem,” said Dr. Sophie Lanzkron, the director of the Sickle Cell Center for Adults at the Johns Hopkins Hospital. “There is no objective measure of crisis. The gold standard is the patient tells you, ‘I am having a crisis.’”
The intensity of the disease as well as the subjectivity of treatment mean that a visit to a new doctor can feel like the cruelest game of roulette. And the weight of that pressure bore down on Ms. Craig as she parked at Vanderbilt and hobbled into the elevator. Would the doctor help her?
“Chest hurts,” she told her husband.
“You’ll be all right,” he assured her.
‘That was unheard-of’
The throbbing pounded the little girl’s body. It was in her arms and legs, and it often made her sob.
Lisa’s parents were baffled. Her mother gave her warm baths and body rubs, and took her to the doctor frequently. But the pain persisted.
Then one day in the late 1970s, when Lisa was about 5, her parents drove her from their home in Knoxville to the Mayo Clinic in Rochester, Minn. Doctors ran tests and discovered the cause: sickle cell disease.
“That was something that was unheard-of,” she said.
Her mother was often her protector, coddling her when the pain set in, while her father urged her to carry on.
Flare-ups of pain made her miss out on slumber parties, ice skating and plenty of school. But for all the restrictions, no one ever questioned whether her pain was real.
At the East Tennessee Children’s Hospital where she was treated, the rooms were decorated with ocean- or circus-themed wallpaper. Nurses gave her games and puppets and tried to make her smile.
“Pain medication was given because people believed I was in pain,” she wrote in her journal decades later.
The medicines gave her relief, but also set her body on a path complicating her treatment decades later: She needed opioid painkillers to live comfortably.
‘It’s a terrible treatment’
A crisis was brewing in society that complicated efforts to treat pain caused by sickle cell: the spread of addiction to opioids fueled in large part by reckless, even criminal marketing of the drugs by major pharmaceutical companies.
A few months later, Ms. Craig’s doctors began cutting back on the amount of intravenous narcotics she was given for pain crises. She argued that the reduced doses were not working. Her hematologist, Dr. Jashmin K. Patel, urged her to take hydroxyurea, a chemotherapy drug that is a standard treatment for the disease, saying it would reduce her pain, according to medical records. Ms. Craig had tried it, but had an unusually severe reaction, with mouth sores, hair loss and vomiting, so she stopped. She said she felt that the doctor wasn’t taking her complaints about the side effects seriously. (Most patients can take the drug successfully.)
“Why do you dear doctor still bully me to take it,” Ms. Craig wrote in her journal on Sept. 17, 2017.
She didn’t want a doctor who preached to her, she wrote, but one who listened, because as someone “who deals with how MY body works with this disease don’t you think my expertise outweighs yours.”
Over the past decade, even some of the best-informed sickle cell specialists have begun reconsidering their reliance on long-term opioid therapy. They have found little evidence to suggest that sickle cell patients who regularly take opioids see their quality of life improve. And their concern about long-term reliance on narcotics is especially high in patients like Ms. Craig, who are living well into middle age with a disease that used to kill its sufferers in childhood or early adulthood.
Dr. Lanzkron at Johns Hopkins said her patients would “end up on these ridiculous doses” and “still have the same level of pain.”
“It’s a terrible treatment,” she said.
So the specialists started trying to teach people with sickle cell how to lessen and tolerate pain with techniques including therapy, meditation and hypnosis.
Ms. Craig had tried everything — warm baths, elevating her feet, steady breathing. She hated feeling dependent on pills. Yet she dreaded the way a simple ache crescendoed to feel like a thousand bee stings or a hand smashed in a door.
In July 2018, her need for relief led to conflict during a visit with Dr. Patel. Alarm bells began ringing in Ms. Craig’s head when the doctor stepped into the room accompanied by a stenographer.
Dr. Patel said she was concerned that Ms. Craig was not taking hydroxyurea as she was supposed to, according to medical records reviewed by The New York Times. She told Ms. Craig that she was not going to increase her pain medication, noting in the file that Ms. Craig had called two weeks earlier for a refill.
Ms. Craig said in an interview that she had never asked for an increase in medication and that Dr. Patel was twisting her words and ignoring her concerns. Neither Dr. Patel nor the practice where she worked responded to requests for comment.
Voices were raised, feelings hurt. Eight days later — on July 18, 2018 — Ms. Craig got a letter from Dr. Patel saying she was no longer welcome at the practice, “because of your lack of cooperation in your medical treatment, non-compliance with treatment recommendations and frequent narcotic requests before agreed time-frame.”
‘Why should you have pain?’
After she was kicked out of Dr. Patel’s practice, Ms. Craig went to Dr. Wahid T. Hanna, a veteran oncologist at the University of Tennessee Medical Center, who had treated dozens of sickle cell patients.
By December 2018, familiar tensions arose. Dr. Hanna grew suspicious of her request for narcotics. She had gone through the 120 Oxycodone pills that he had prescribed a month earlier and wanted a refill.
On several visits, Dr. Hanna repeated a refrain as if he were saying it for the first time: He was puzzled that she had pain because she had a generally less severe version of sickle cell.
“So really, I don’t have any justification why should you have pain,” he told her on one of those visits.
“I’ve always had pain,” she replied, according to a recording Ms. Craig’s husband took of the meeting.
Months earlier, Tennessee had enacted some of the nation’s most stringent restrictions on doctors prescribing opioids during a deadly epidemic, though there were exceptions for sickle cell patients.
“My question is, with the way the state is regulating the narcotics and all that, we could be questioned,” Dr. Hanna said. “We could be red-flagged.”
If Ms. Craig had pain, Dr. Hanna said it might have been from arthritis or the heavy periods she complained of. Those could be managed without opioids, he said.
“We do this every time I come, and I’m not understanding,” Ms. Craig said.
“I’m saying this because we can be questioned,” Dr. Hanna said, and if the authorities asked him whether he saw a lot of pain in someone with her kind of sickle cell, “I’d say usually I don’t.”
“You can’t say 100 percent that it’s not possible,” Ms. Craig said.
“I want to take care of you, but I want to do it right,” he said.
In that moment, Dr. Hanna said in a later interview, “I did not know whether her pain requirements were genuine or not.”
Her red blood cell count was stable and her iron was low — metrics that, Dr. Hanna said, suggested that her sickle cell was not that severe. But experts who treat sickle cell say that iron and hemoglobin levels do not indicate how severe the disease is.
Still, Dr. Hanna reduced her narcotic dosage, encouraged her to use over-the-counter pain medicines and scheduled her for an iron infusion, which he told her would make her “feel like a different person.”
‘I feel beaten down’
Days after another disappointing visit to Dr. Hanna in December 2018, Ms. Craig sat on a light green leather couch beneath a painting of an ocean in her therapist’s office, choking back tears.
“Putting up with somebody belittling me and making me feel less than is not worth it,” she told her therapist.
It was difficult enough to control her physical pain, but reining in the mental anguish proved equally troublesome.
A former preschool teacher who speaks with wide-eyed animation, Ms. Craig has not been able to work full time since 2005 because of her unpredictable pain. She finds purpose where she can, taking care of her family, picking up the occasional odd job, babysitting for relatives and friends.
She exercised as her doctors advised, took 15 minutes a day to “be selfish” as a friend suggested and wrote prayers on brown slips of paper that she sealed in a jar. She listened as her therapist explained that there was no shame in trying to get prescriptions to relieve pain.
But all around, the signals told Ms. Craig otherwise: the constant stream of news about the opioid crisis and, one evening shortly before her Vanderbilt visit, a heated discussion with an aunt at the family dining room table.
“You can’t just come on in there and just say: ‘Look, this is the drug I take. And I know this’ll work,’” said her aunt, Nanette Henry Scruggs, who used to work at a hospital.
“The hospitals tell people all the time to be your own advocate,” Ms. Craig said.
Times were changing, her aunt explained, because doctors had overmedicated pain patients and now risked losing their licenses.
“You don’t understand it because you have the disease,” Ms. Scruggs said.
“And you don’t understand it because you don’t,” Ms. Craig fired back, her voice straining with emotion. “And you’re not the one that they look at and go, ‘Oh, she’s just exaggerating her pain.’ When I want to saw my own freaking legs off, that’s a problem!”
Many sickle cell patients feel frustrated that doctors don’t believe patients know what works. Often, that’s narcotic doses much higher than the average person requires. Yet asking for specific medications can fuel distrust, compounded by many doctors’ lack of familiarity with sickle cell.
Only one in five family physicians said they were comfortable treating sickle cell, according to a 2015 survey. Even hematologists rarely specialize in it, with a greater focus on cancers of the blood, which are more prevalent.
Ms. Craig lamented that sickle cell patients did not seem to get the sympathy given to people with other devastating illnesses. Somebody needed to change that, she told her aunt, “and I’m going to be that somebody.”
“Sickle cell patients are not abusing, are not the major cause of people overdosing,” Ms. Craig told her.
“I’m not saying that,” her aunt said, later adding, “She’s thinking I’m against her.”
“I’m not saying you’re against me, but you’re definitely not standing shoulder to shoulder with me,” Ms. Craig said.
Ms. Craig was now worked up, and her husband, Jeremy, urged her to calm down. He has long been her champion, but Ms. Craig worried her disease was a drag on her family. Jeremy, 45, their daughter, Kaylyn, 19, and their son, Mason, 15, have endured her at her weakest and angriest. They accompany her on middle-of-the-night emergency room runs and wake up when she paces their single-story brick home in the middle of the night because of pain.
Still, they have always looked out for her. Her husband first learned that she had sickle cell when they were dating and she told him that she was having a pain crisis. He drove her to the emergency room at 2 a.m., kissed her on the forehead and told her he loved her. She was sold. And because he was white, there was a lower chance that he would carry the sickle cell mutation, meaning it was less likely that their children would have the disease — something she also found appealing.
For Mr. Craig, simply watching his wife suffer was not an option. He always looked for solutions and thought he’d come up with one as he scrolled through his cellphone one evening in their dim living room: marijuana.
“I think you should try it,” he said.
Ms. Craig waved him off, but he insisted that it would be safe to try in states where it was legal.
“What if it works?” he asked.
“What if it doesn’t,” she replied. “I’m done talking to you about that whole situation.”
“If we go to Washington State,” he insisted.
“I’m not going,” she said, cutting him off. “To me, that feels like an addict.”
Still, she was desperate for help as her relationship with Dr. Hanna deteriorated. A social worker suggested she consult specialists at Vanderbilt.
She made the appointment. Just a few days before the visit, she made her fourth trip to the emergency room in six weeks for a pain crisis. The doctor gave her intravenous Tylenol and four oxycodone tablets. After four hours, she was still in pain and left the hospital, as she had many times, without relief.
“I want to be extremely honest with u and let you know I am tired,” she wrote to me on Facebook at 1:16 a.m., after getting home from the emergency room. “I feel beaten down by these doctors as if I am an addict.”
She was hurtling, she said, toward “a dangerous level of depression.”
‘Win their trust’
Ms. Craig fidgeted and sweat beaded around her lip, forehead and eyes. It was Jan. 18, 2019, and, at last, she sat in an exam room at Vanderbilt.
For half an hour, Ms. Craig guided him through her arduous journey: hip replacement, seizures, blood clots. Pain crises usually came right before her period, she told him, and he said that researchers were exploring whether there was a link between sickle cell pain and menstruation.
Dr. Kassim, who heads Vanderbilt’s adult sickle cell program, is a native of Nigeria who has specialized in treating the disease for more than 20 years. As he listened to her medical history and symptoms, he contemplated the riddle of treating her.
“What you’ve had over the years is an interplay of your disease with other chronic health problems,” he told her. “I’m going to think about it carefully because you’re a little complicated.”
He told Ms. Craig that he needed to run tests to figure out the underlying causes of her chronic pain. Did she, for instance, have arthritis? Since hydroxyurea had so many side effects for her, he wanted to try another drug, Endari.
And he wanted to manage her pain with sparing narcotic use. He worried she was susceptible to hyperalgesia, a condition in which prolonged opioid use can alter patients’ nerve receptors and actually cause more pain.
In many ways, he was echoing Dr. Hanna. She needed to take fewer narcotics. Sickle cell probably was not the cause of some of her pain. But he never questioned whether she was hurting. He listened. He laid out a plan.
“You can’t just come in one day and be like a cowboy,” Dr. Kassim said in a later interview. “You’ve got to win their trust and begin to slowly educate them.”
After she left his office that day, Ms. Craig leaned her head on her husband’s shoulder. “I feel like we should have come here a long time ago,” she said.
‘Too good to be true’
Three months after her first visit with Dr. Kassim, pain radiated through her lower back, left hip, elbows and knees. She was out of hydrocodone, and her next refill was more than a week away.
“Continue alternating between Aleve and extra strength Tylenol,” Karina L. Wilkerson, a nurse practitioner in Dr. Kassim’s office, counseled her in an email, prescribing a muscle relaxer and telling her: “Rest, heat and hydrate.”
Days later, the pain was so unrelenting that Ms. Craig went to the emergency room and got a dose of intravenous narcotics.
She felt as if history was repeating itself. She was trying to wean herself from opioids, to rely mostly on over-the-counter meds, to use heat and ice, but it was not working.
“I feel like I’m a junkie,” she said in an interview, her voice cracking.
The pain returned a day after she left the hospital. With four days until her next visit to Dr. Kassim, she sent another message to ask whether there was anything more to be done, careful not to request hydrocodone. A nurse wrote that she could be prescribed more muscle relaxers, but “we cannot fill any narcotics for you before your appointment.”
Ms. Craig felt as if she was back where she started. Dr. Kassim was friendly, attentive and knowledgeable, yet she was still enduring pain.
“A part of me knew we’d be back in this position,” she said, “that it was too good to be true.”
‘A defeated acceptance’
One day last May, Ms. Craig had spent a lot of time on her feet at a family gathering after a relative’s death. As she settled in for the evening, a family friend dropped off two children she had agreed to babysit, and she braced for the inevitable result of a busy day: pain.
In the past, she would have taken a hydrocodone earlier in the day as a maintenance dose. But she had been seeing Dr. Kassim for more than a year, and although pain continued to gnaw at her, she was starting to buy into his advice. She had paid close attention to Facebook groups and news from medical journals with the latest developments on sickle cell. In her 48th year battling the disease, her perspective was changing.
She had come to realize that no matter how much hydrocodone she took or how well versed her doctor was in the disease, her pain did not disappear — and that the medical consensus had shifted against relying mainly on narcotics.
“It’s like a defeated acceptance,” she said.
In the wee hours of the morning after the family gathering, she began to hurt. Her hips throbbed. She tried to sleep on her left side, then her right. She lay on her back and elevated her feet. Nothing worked.
Still, she held off on the narcotics. Most people with sickle cell remember a crisis when their pain was “at a zillion and you were sitting in that emergency room, waiting for them to call you, and all you wanted to do was pass out,” she said. “We live on that edge of fear.”
She held off until about 11 a.m., when she took a hydrocodone. It provided enough relief to keep her out of the hospital — just the kind of progress Dr. Kassim wanted from her.
He sought to address the underlying triggers of her pain: sickle cell, worn joints, her menstrual cycle, nerve damage and prolonged opioid use. The main thing, he said, was to stabilize her quality of life. That goal motivated her.
But the spread of the coronavirus has interfered with their plan.
Dr. Kassim told Ms. Craig during a visit in February of last year that he wanted her to get an M.R.I. to better understand the underlying causes of her pain. But the pandemic hit, and she was not able to get that imaging until December. It revealed some of the pain triggers that Ms. Craig will have to get under control: a bulging disk in her back, and arthritis in both hips and her left shoulder.
She held off going to physical therapy for fear of catching Covid-19, but is now planning to go since she has been vaccinated. She has tried to tolerate the pain and avoid the hospital, but not always successfully. There were three visits in a week last June and a five-hour wait during a September visit.
Through the past year, she has grown more resolute, trying to raise awareness and support for people with the disease in Knoxville. She had masks made with the words “sickle cell” printed across the front. She has resolved to live with the disease, not suffer from it.
“It’s just my life,” she said. “The one I’ve been dealt.”
Author: John Eligon and William DeShazer
This post originally appeared on NYT > U.S. News