When Sandie Wood was diagnosed with tongue cancer in February that soon became terminal, she made a plan. Her funeral wouldn’t be a dreary, somber occasion. That wasn’t how she lived.
“She wasn’t a boring person,” Samantha Ryalls, Wood’s close friend, told The Washington Post. “She wasn’t traditional either. She wanted her funeral to reflect her.”
Wood, 65, wanted her coffin brought in late, because she never arrived to things on time. She envisioned it colored purple and decorated with letters that read: “Going out in style.” Sheasked that the funeral celebrant swear as much as possible.
And she wanted a troupe of dancers to crash her funeral, unannounced, and perform a routineto Queen’s “Another One Bites the Dust.”
That’s exactly what happened Nov. 4 at a crematorium in Bristol, England, when Ryalls and a group of Wood’s friends managed to arrange a unique send-off that fulfilled her wildest requests.
Midway through the service, Queen’s famous bass line suddenly blared through the hall and several dancers stood up, shrugged off their jackets and launched into a three-minute routine. Video of Wood’s funeral went viral on social media after a BBC report this week captured the scene. Ryalls said it was everything her friend would have wanted.
“She wanted us to remember her for the outrageous person she was,” Ryalls said.
Ryalls, who met Wood on a pub-darts team, called her the life of the party. She recalled her friend dressing in bright colors and telling animated stories from years spent working as a barmaid in pubs across Bristol. Wood loved shoes and insisted her horse-drawn hearse and coffin be decorated with a collection of stilettos, wedges and studded boots.
“She was just a massive character,” Ryalls said.
The dance mob that upstaged her funeral almost didn’t happen. Finding a dance team to take on Wood’s dying request proved difficult, Ryalls said. She was turned down by 10 groups, some of whom called the proposal disrespectful. In desperation, she posted a request on Facebook.
When cabaret dancer Claire Phipps saw the post, she couldn’t believe her luck.
“All summer I’d been chatting to people about really wanting to do a funeral,” Phipps told The Post. “But everyone looked at me like I was mad, like that was never going to happen.”
Phipps, who runs a Bristol dance troupe called the Flaming Feathers, said she was excited to take on the challenge. After receiving Wood’s song request, the group, which typically performs at cabarets and festivals, choreographed a routine and rehearsed for several weeks.
Then they sneaked into Wood’s funeral ahead of the crowdto snag the right seats.
“It was nerve wracking,” Phipps said. “Because we didn’t know how it would be taken.”
By the end of the song, to Phipps’s relief, people were clapping and laughing.
Wood died of tongue cancer in September, seven months after her February diagnosis. She’d already been struggling with a hepatitis C infection, Ryalls said, after being treated decades ago with contaminated blood by Britain’s National Health Service, part of a national scandal that prompted a public inquiry in 2019.
Wood’s battle with cancer was painful, Ryalls said. But her sense of humor kept her going.
“She was dying,” Ryalls said. “And she would say that medicine is laughter.”
It was also medicine for those closest to Wood. Mark Wood, Sandie’s husband, didn’t know about her outlandish plans either, he told The Post. At the funeral, he was consumed by grief and couldn’t focus. Then the music started playing — Sandie’s music.
“I said, ‘Yeah, that’s my Sandie,’” Mark said. “There was a big smile on my face because that was her. She didn’t want me to know that because she wanted to surprise me. And boy, didn’t she do it?”
The funeral lifted Mark Wood’s spirits. Sandie was “one in a million,” he said, and he’s still struggling to sleep since her death. He expressed frustration over the NHS scandal that sickened Sandie. The British government announced in August that affected patients would receive about $122,000 in compensation, but Mark Wood said he wished the government would also apologize.
But he said Sandie got the send-off she deserved.
“If she’s up there looking down, she’d be smiling, ” Mark said.
Sandie asked that her loved onesend the funeral by exiting in a conga line, Ryalls said, which everyone happily obliged. After the excitement, she had one final wish: that her funeral make news headlines around the world.
“The last wish that we couldn’t achieve has actually happened,” Ryalls said. “It’s incredible.”
Meghan Markle was banned from Balmoral by King Charles as Queen Elizabeth lay dying last year, Prince Harry confirmed in his bombshell new memoir, “Spare.”
Harry quickly defended Markle, telling his dad, “Don’t ever speak about my wife that way,” according to reports on the tome, which was accidentally released early in Spain.
“Charles told Harry that it wasn’t right or appropriate for Meghan to be in Balmoral at such a deeply sad time,’ a source said, according to the Daily Mail.
King Charles banned Meghan Markle from Balmoral as Queen Elizabeth was dying last year, according to Prince Harry’s memoir, “Spare.”Tim Rooke/REX/Shutterstock
‘It was pointed out to him that Kate [Middleton] was not going and that the numbers really should be limited to the very closest family.”
Harry, 38, and Meghan, 41, were in London in September when the Queen’s health rapidly went downhill at Balmoral, her home in Scotland.
Harry quickly defended Markle, telling his dad, “Don’t ever speak about my wife that way,” according to his memoir.i-Images / PolarisKing Charles and Prince William during Queen Elizabeth’s funeral.REUTERS
Many of the senior royals immediately began planning to fly to Balmoral, including Prince William, along with Andrew, Edward, and his wife Sophie, the Daily Mail reported Saturday.
About 90 minutes after Buckingham Palace announced the Queen’s ill health, a rep for Harry and Meghan said they both would be traveling to Scotland — but hours later, a clarification was made that Harry would be going it alone.
‘It was pointed out to him [Prince Harry] that Kate [Middleton] was not going and that the numbers really should be limited to the very closest family.”Getty Images
Harry says in his book that during that window of time, he was told by his father not to bring Meghan. Harry then flew by private jet to Scotland and arrived after the Queen had already died.
In addition, Harry writes in “Spare” that he learned of the Queen’s death after checking the BBC news website.
MOGADISHU, Dec 13 (Reuters) – More than 200,000 Somalis are suffering catastrophic food shortages and many are dying of hunger, with that number set to rise to over 700,000 next year, according to an analysis by an alliance of U.N. agencies and aid groups.
The Integrated Food Security Phase Classification (IPC), which sets the global standard for determining the severity of food crises, said its most acute level, “IPC Phase 5 Famine”, had been temporarily averted but things were getting worse.
“They have kept famine outside of the door but nobody knows for how much longer,” said Jens Laerke, spokesperson of the U.N. humanitarian office (OCHA).
“That people are dying from hunger, there’s no doubt about it, but I cannot put a number on it,” he told a news briefing in Geneva after the latest IPC analysis on Somalia came out.
A two-year drought has decimated crops and livestock across Horn of Africa nations, while the price of food imports has soared because of the war in Ukraine.
In Somalia, where 3 million people have been driven from their homes by conflict or drought, the crisis is compounded by a long-running Islamist insurgency that has hampered humanitarian access to some areas.
The IPC had previously warned that areas of Somalia were at risk of reaching famine levels, but the response by humanitarian organisations and local communities had staved that off.
“The underlying crisis however has not improved and even more appalling outcomes are only temporarily averted. Prolonged extreme conditions have resulted in massive population displacement and excess cumulative deaths,” it said.
Somalia’s last famine, in 2011, killed a quarter of a million people, half of them before famine was officially declared.
Fearful of a similar or even worse outcome this time, humanitarian chiefs were quick to say the situation was already catastrophic for many Somalis.
‘STOP WAITING’
“I have sat with women and children who have shown me mounds next to their tent in a displaced camp where they buried their two- and three-year-olds,” said James Elder, spokesperson of the U.N. children’s charity UNICEF, at the Geneva briefing.
“Whilst a famine declaration remains important because the world should be past this, we also do know that children are dying now.”
The IPC Acute Food Insecurity scale has a complex set of technical criteria by which the severity of crises are measured. Its Phase 5 has two levels, Catastrophe and Famine.
The Somalia analysis found that 214,000 people were classified in Catastrophe and that number was expected to rise to 727,000 from April, 2023 as humanitarian funding dropped off.
Catastrophe is summarised on the IPC website as a situation where starvation, death, destitution and extremely critical acute malnutrition levels are evident.
It said famine was projected from April onwards among agropastoral populations in the districts of Baidoa and Burhakaba, in central Somalia, and among displaced populations in Baidoa town and the capital Mogadishu.
The IPC data showed 5.6 million Somalis were classified in Crisis or worse (Phase 3 or above) and that number would rise from April to 8.3 million — about half the country’s population.
The OCHA is appealing for $2.3 billion to respond to the crisis in Somalia, of which it has so far received $1.3 billion, or 55.2%.
David Miliband, head of aid group the International Rescue Committee, said the underfunding of the appeal showed the world was not treating this as an urgent moment.
“The time for action is now in Somalia,” he told Reuters in an interview, adding that what happened in 2011 should serve as a warning. “Stop waiting for the famine declaration,” he said.
Reporting by Abdi Sheikh in Mogadishu, Bhargav Acharya and Alexander Winning in Johannesburg and Sofia Christensen in Dakar and Emma Farge in Geneva; Writing by Estelle Shirbon; Editing by James Macharia Chege and Ed Osmond
Our Standards: The Thomson Reuters Trust Principles.
A clearer picture of life after death — albeit short-lived — is coming into focus
A new study has shown that 20% of people on the brink of death have experienced “lucid dying.” The phenomenon is said to occur in the moments between undergoing cardiac arrest, when they are unconscious or dying, and receiving lifesaving cardiopulmonary resuscitation.
One in five survivors reported feeling separated from their body and observing events without pain or distress — which researchers have differentiated from hallucinations, delusions, dreams or living consciousness.
“These lucid experiences cannot be considered a trick of a disordered or dying brain, but rather a unique human experience that emerges on the brink of death,” said lead researcher Dr. Sam Parnia. His team at the NYU Grossman School of Medicine in New York City presented their findings Sunday at a symposium as part of the American Heart Association’s Scientific Sessions in Chicago.
Parnia said the results indicate evidence that some people have a “unique inner conscious experience, including awareness without distress,” after physical death. These extraordinary experiences, as well as heightened brain activity at time of death, suggests that consciousness may carry on in some capacity after death.
The study suggests consciousness may not stop completely around the time of death.Getty Images
Researchers analyzed data from 567 hospital patients who had gone into cardiac arrest and received CPR between May 2017 and March 2020, in both US and UK hospitals. They furthermore included self-reported testimonies from 126 non-hospital survivors of cardiac arrest.
Patients were also tested for hidden brain activity during this time, revealing spikes up to an hour into CPR, including gamma, delta, theta, alpha and beta waves — the same that may occur in the living while performing high-level thought processes.
Upon death, the brain is known to fire off a series of “disinhibition” signals, that open new pathways to memory and imagination. Scientists don’t understand the evolutionary purpose of this process, but it does raise “intriguing questions about human consciousness, even at death,” said Parnia.
Scientists have only begun to reckon with the notion of consciousness as more than just a side effect of having a functional brain. In a statement, Parnia urged for further study into the specific biomarkers of “clinical” consciousness.
Summary: 1 in 5 people who receive CPR report lucid experiences of death while they are seemingly unconscious and on the brink of death. The lucid experiences appear to be different from hallucinations, dreams, illusions, and delusions. Researchers found during these experiences the brain has heightened activity and markers for lucidity, suggesting the human sense of self, like other biological functions, may not completely stop around the time of death.
Source: NYU Langone
One in five people who survive cardiopulmonary resuscitation (CPR) after cardiac arrest may describe lucid experiences of death that occurred while they were seemingly unconscious and on the brink of death, a new study shows.
Led by researchers at NYU Grossman School of Medicine and elsewhere, the study involved 567 men and women whose hearts stopped beating while hospitalized and who received CPR between May 2017 and March 2020 in the United States and United Kingdom. Despite immediate treatment, fewer than 10% recovered sufficiently to be discharged from hospital.
Survivors reported having unique lucid experiences, including a perception of separation from the body, observing events without pain or distress, and a meaningful evaluation of life, including of their actions, intentions and thoughts toward others. The researchers found these experiences of death to be different from hallucinations, delusions, illusions, dreams or CPR-induced consciousness.
The work also included tests for hidden brain activity. A key finding was the discovery of spikes of brain activity, including so-called gamma, delta, theta, alpha and beta waves up to an hour into CPR. Some of these brain waves normally occur when people are conscious and performing higher mental functions, including thinking, memory retrieval, and conscious perception.
“These recalled experiences and brain wave changes may be the first signs of the so-called near-death experience, and we have captured them for the first time in a large study,” says Sam Parnia, MD, PhD, the lead study investigator and an intensive care physician, who is also an associate professor in the Department of Medicine at NYU Langone Health, as well as the organization’s director of critical care and resuscitation research.
“Our results offer evidence that while on the brink of death and in a coma, people undergo a unique inner conscious experience, including awareness without distress.”
Identifying measureable electrical signs of lucid and heightened brain activity, together with similar stories of recalled death experiences, suggests that the human sense of self and consciousness, much like other biological body functions, may not stop completely around the time of death, adds Parnia.
“These lucid experiences cannot be considered a trick of a disordered or dying brain, but rather a unique human experience that emerges on the brink death,” says Parnia.
As the brain is shutting down, many of its natural braking systems are released. Known as disinhibition, this provides access to the depths of a person’s consciousness, including stored memories, thoughts from early childhood to death, and other aspects of reality.
While no one knows the evolutionary purpose of this phenomenon, it clearly reveals “intriguing questions about human consciousness, even at death,” says Parnia.
The study authors conclude that although studies to date have not been able to absolutely prove the reality or meaning of patients’ experiences and claims of awareness in relation to death, it has been impossible to disclaim them either. They say recalled experience surrounding death now merits further genuine empirical investigation without prejudice.
The researchers found these experiences of death to be different from hallucinations, delusions, illusions, dreams or CPR-induced consciousness. Image is in the public domain
Researchers plan to present their study findings at a resuscitation science symposium that is part of the American Heart Association’s Scientific Sessions 2022 taking place in Chicago on Nov. 6.
See also
Some 25 hospitals in the U.S. and U.K. participated in the study, called AWARE II. Only hospitalized patients were enrolled to standardize the CPR and resuscitation methods used after cardiac arrest, as well as the recordings made of brain activity. Additional testimonies from 126 community survivors of cardiac arrest with self-reported memories were also examined in this study to provide greater understanding of the themes related to the recalled experience of death.
Parnia says further research is needed to more precisely define biomarkers of what is considered to be clinical consciousness, the human recalled experience of death, and to monitor the long-term psychological effects of resuscitation after cardiac arrest.
Funding: Funding and support for the study was provided by NYU Langone, The John Templeton Foundation, and the Resuscitation Council (UK) and National Institutes for Health Research in the U.K.
Besides Parnia, other NYU Langone study investigators are Tara Keshavarz Shirazi, BA; Caitlin O’Neill, MPH; Emma Roellke, MD; Amanda Mengotta, MD; Thaddeus Tarpey, PhD; Elise Huppert, MD; Ian Jaffe, BS; Anelly Gonzales, MS; Jing Xu, MS; and Emmeline Koopman, MS. Other study investigators are Deepak Pradhan, MD, at Bellevue Hospital in New York City; Jignesh Patel, MD; Linh Tran, MD; Niraj Sinha, MD; and Rebecca Spiegel, MD, at Stony Brook University in N.Y.; Shannon Findlay, MD, at the University of Iowa in Iowa City; Michael McBrine, MD, at Tufts University in Boston; Gavin Perkins, MD, at the University of Warwick in Coventry, U.K.; Alain Vuylsteke, MD, at Royal Papworth Hospital NHS Foundation Trust in Cambridge, U.K.; Benjamin Bloom, MD, at Barts Health NHS Trust in London, U.K.; Heather Jarman, RN, at St. George’s University Hospitals NHS Foundation Trust in London; Hiu Nam Tong, MD, at Queen Elizabeth Hospital King’s Lynn NHS Foundation Trust in King’s Lynn, U.K.; Louisa Chan, MD, at Hampshire Hospitals NHS Foundation Trust in Hampshire, U.K.; Michael Lyacker, MD, at Ohio State University in Columbus; Matthew Thomas, MD, at University Hospitals Bristol and Wexton NHS Foundation Trust in Bristol, U.K.; Veselin Velchev, MD, at St. Anna University in Sofia, Bulgaria; Charles Cairns, MD, at Drexel University in Phildelphia; Rahul Sharma, MD, at Weill Cornell Medicine in New York City; Erik Kulstad, MD, at University of Texas Southwestern in Dallas; Elizabeth Scherer, MD, at University of Texas San Antonio; Terence O’Keeffe, MD, at Augusta University in Augusta, Ga.; Mahtab Foroozesh, MD, at Virginia Tech in Roanoke; Olumayowa Abe, MD, at New York-Presbyterian in New York City; Chinwe Ogedegbe, MD, at Hackensack University in Nutley, N.J.; Amira Girgis, MD, at Kingston Hospital NHS Foundation Trust in Surrey, U.K.; and Charles Deakin, MD, at University Hospital Southampton NHS Foundation Trust in Southampton, U.K.
About this neuroscience research news
Author: David March Source: NYU Langone Contact: David March – NYU Langone Image: The image is in the public domain
Original Research: The findings will be presented at the American Heart Association Scientific Sessions
This year’s avian flu outbreak is killing a near record number of poultry across the United States, according to agriculture officials.
A new form of the virus, commonly referred to as bird flu, has infected more wild chickens and turkeys in 2022 than ever before. Cullings and infections have killed millions of birds, resulting in export bans and lower production of eggs and turkey while adding to rising inflation, according to Reuters.
Data provided by the United States Department of Agriculture indicates that in the last 2015 avian flu outbreak, approximately 50 million birds were affected. So far this year, 47.6 million birds have been affected, with the disease spreading to 42 states.
Farmers, in some circumstances, must kill entire flocks of birds to stop the disease from spreading. The H5N1 strain of the virus is fueling the North American outbreak as the same subtype ravages Europe.
ZOOS IN US RESPOND TO BIRD FLU OUTBREAK AS INFECTION RATES MOUNT
This year’s avian flu outbreak is killing a near record number of poultry across the United States, according to agriculture officials. (iStock)
Currently, Europe is undergoing its worst bird flu outbreak in decades, which has resulted in 50 million poultry culled.
“This virus could be present in wild birds for the foreseeable future,” said Rosemary Sifford, an official with USDA, during an interview with Reuters. “This one is certainly different.”
“Unfortunately, what we’ve done probably hasn’t been enough to protect us from this high load of virus in the wild bird population,” Sifford added.
COLORADO REPORTS FIRST HUMAN CASE OF H5 BIRD FLU IN US IN POULTRY WORKER
The subtype is being founded in different birds, such as ducks, and is infecting the animals for more prolonged periods compared to past outbreaks.
Between January and July, 5.4 million birds died from the virus.
At the end of the Permian period 252 million years ago, Earth was devastated by a mass extinction that exterminated more than 90% of species on the planet. Unlike after other mass extinctions, recovery from the “Great Dying” was slow: It took TK millions of years for the planet to be repopulated and restore its diversity.
Now, scientists might have figured out what delayed Earth’s recovery. A group of tiny marine organisms called radiolarians vanished in the extinction’s aftermath. Their absence radically altered marine geochemistry, enabling a type of clay formation that released carbon dioxide. This carbon dioxide release would have kept the atmosphere warm and the oceans acidic, thereby slowing the rebound of life, the scientists explained in a paper published Oct. 3 in the journal Nature Geoscience (opens in new tab).
These were extreme conditions that hadn’t been seen on Earth for hundreds of millions of years, before the advent of widespread life, study co-author Clément Bataille, now a professor of Earth and environmental sciences at the University of Ottawa in Canada, told Live Science.
“It just shows how much we don’t know about these biogeochemical cycles and how a little change can really throw the system out of balance very quickly,” Bataille said.
An unfriendly Earth
Bataille worked on the research as a postdoctoral scholar in the laboratory of Xiao-Ming Liu, a geochemist at the University of North Carolina at Chapel Hill. The researchers were trying to understand changes in Earth’s climate at the end of the Permian (298.9 million to 251.9 million years ago) and the beginning of the Triassic (251.9 million to 201.3 million years ago). At the time, all of the continents were joined into one massive landmass called Pangaea, and a huge block of volcanoes known as the Siberian Traps were belching out planet-warming greenhouse gases, probably contributing to the extinction event that resulted in the death of almost everything.
The team wanted to study a process called chemical weathering — when rocks on land break down and release calcium, which erodes into the oceans. There, the calcium combines with carbon dioxide (CO2) to form carbonate rocks. The warmer the climate, the faster weathering occurs, because chemical reactions happen faster in warmer temperatures and more flowing water means more erosion. This creates a feedback loop that keeps global temperatures in check, Bataille said: When it’s warmer and weathering is faster, more CO2 flows into the sea and gets locked up in ocean rocks, helping to cool the climate. When the climate cools, weathering slows and less CO2 is locked up in ocean rocks, thus preventing things from getting too chilly.
But there’s another process that can occur in the ocean, called reverse weathering. This happens when the mineral silica is abundant and forms new clays on the ocean floor. During reverse weathering, these clays release more CO2 than carbonate rocks can capture.
Silica isn’t abundant in today’s oceans because tiny planktonic organisms snatch it up to make their shells, so reverse weathering doesn’t happen much. Similarly, in the Permian, tiny organisms called radiolarians took up almost all of the silica, thus keeping reverse weathering to a minimum.
A sudden shift
All of that may have changed, however, at the end of the Permian and the beginning of the Triassic. At this point, silica-rich rocks made of countless radiolarian shells disappeared, indicating that the radiolarians may have been snuffed out. At the same time, the balance of certain variants of molecules in ocean rocks went haywire, Bataille, Liu and their colleagues found.
The researchers were studying ratios of isotopes of lithium. Isotopes are versions of an element with slightly different atomic weights than the norm because they have different numbers of neutrons in their nuclei. Because of their different weights, various lithium isotopes are taken up in different ratios when new clays are formed, which happens in reverse weathering. The researchers found that some lithium isotopes virtually disappeared from the ocean right before the Great Dying and didn’t recover for some 5 million years into the Triassic. This paints a picture of a world where the loss of radiolarians led to an ocean chock-full of silica, thus allowing reverse weathering to occur, Bataille said. The CO2 released by reverse weathering could have overwhelmed the CO2-trapping chemical weathering happening at the time and, in turn, kept the climate extra-steamy. Under such conditions, life would have struggled.
This is the first direct evidence that reverse weathering was happening at this time, said Hana Jurikova, a marine biogeochemist at the University of St. Andrews in Scotland. Jurikova was not involved in the research, but she wrote an editorial accompanying the paper (opens in new tab) in the journal Nature Geoscience.
“There’s obviously a lot more work to be done,” Jurikova told Live Science, “but it’s kind of an elegant theory.”
Among the questions yet to be answered is, what killed the radiolarians? Evidence shows that the reverse weathering began a few million years before the mass extinction, Jurikova said, suggesting that perhaps these microorganisms were already struggling before the Siberian Traps did their worst. Perhaps conditions were becoming challenging for life even before the life-extinguishing volcanic eruptions.
“We’ve been traditionally really excited about the mass extinction and trying to zoom in as much as we can,” Jurikova said, “but maybe we’re finding that we have to zoom out.”
By this time next year, if the medical forecasts are correct, I will probably be dead, another casualty of a fatal illness that most people have never heard of: idiopathic pulmonary fibrosis (IPF).
This condition has been described by Michael J. Stephen in his 2021 book “Breath Taking” as the “most frustrating and disheartening of all the diseases in pulmonary medicine.” Over a frighteningly short time (the median age of survival after diagnosis is three years), patients with IPF will become increasingly short of breath as the lungs no longer perform their vital function of oxygenating the blood. The alveoli — the sac-like pockets where this process takes place — will fill with mucus and harden until, in Stephen’s disturbing phrase, the lungs “turn to stone.”
Almost as shocking as the rapid progression of the disease is its obscurity. Roughly 40,000 people die from it every year in the United States, 5,000 more than die from prostate cancer and only slightly fewer than die from breast cancer. Stephen estimates that as many as 200,000 Americans struggle annually to survive with idiopathic pulmonary fibrosis.
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Yet, as he notes, there are no TV ad campaigns, road races, color-coded ribbons, or ice-bucket challenges to raise awareness and fundraise for a cure.
When I was told two years ago that I had IPF, I had never heard of it, nor had any of my friends. My main worry at the time was colon cancer. In November 2019, it took doctors five hours of surgery to remove a sizable tumor from my large intestine. The cancer had also tainted more than half a dozen lymph nodes.
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Luckily, the disease had not spread to other parts of my body, so in the nomenclature of cancer I was categorized as stage 3: a seriously ill but treatable patient. I underwent 12 sessions of chemotherapy at the start of 2020, after which a colonoscopy and blood tests found no traces of cancer.
That was the good news. The bad news was that the potent drugs administered to me during those six months — drugs that are likely responsible for my good news — can have a rare but documented side effect.
I wasn’t aware of this possibility until a visit with my oncologist at the end of my regimen. During what I expected to be a congratulatory meeting at the finish line, he pointed to a CT scan of my chest and said it showed signs of scarring, or “glassy lung.” (In radiological photographs, damaged lung tissue can present as white dots or opaque space, indicating that the alveoli are blocked.) He recommended that I see a pulmonologist.
I wasn’t too concerned. The words “glassy lung” had a pleasing sound. I imagined that, like bronchitis, it would clear up after a dose of antibiotics. The notion that scarring of the lungs could be a symptom of something deadly didn’t occur to me. This wasn’t, after all, cancer.
Medical researchers have known about pulmonary fibrosis since the 19th century, but little has been done to ameliorate its symptoms, much less to pinpoint its origins. No one seems sure of its causes. My case is called idiopathic because doctors can’t be certain that chemotherapy was the trigger.
Nothing has so far been discovered that will substantially extend life. Two drugs, Ofev and Esbriet, were approved by the Food and Drug Administration in 2014 because they were found to slow the rapidity of lung deterioration. I take two Ofev capsules twice a day. A vial of 60 pills costs upwards of $10,000, a burden relieved by a medical foundation grant.
I have no idea whether the pills are effective or not. My doctors seem just as uncertain. The only guarantee is that idiopathic pulmonary fibrosis has no cure and cannot be stopped. It is, to quote my first pulmonologist, “irremediable.”
The symptoms struck me without warning. In May 2021 I was playing two sets of doubles tennis three times a week. Two months later I couldn’t swing a racket without feeling winded. I was prescribed a steroid inhaler and large doses of prednisone, and they seemed to alleviate my breathlessness for a few weeks — until they didn’t.
Our house on Long Island today is crisscrossed with long, thin plastic tubes connecting me via cannulae to respirators that can produce up to 10 liters of oxygen a minute. I am hooked up to one or the other of these two machines, set at six liters, every hour of every day. When I go out, I carry a portable respirator that is less powerful but allows me some measure of free movement. I try not to travel far. Being away from my machines for too long taxes my oxygen level. If I go to museums — part of my job as an arts critic is reviewing exhibitions — I need to be pushed in a transport chair. Propelling myself in a wheelchair is too exhausting. My sole encounter with Covid-19 was mild. A more severe one could finish me off.
I am 69, and my only hope of living into my mid-70s is a lung transplant, an operation currently prohibited for patients like me: In U.S. hospitals where the procedure is done — there are about 65 of them and counting — a patient must be cancer-free for five years to qualify. Even if by some miracle I were to live another three years, I would then have to wait a minimum of two years to receive one lung, three years for two lungs. At the end of that period, I would be 75, past the cutoff date when lung transplants are authorized. Checkmate.
I wish I could say that the realization of the brief time I have left has altered my procrastinating habits and that I have begun to behave like those characters in Russian literature who felt liberated when infected by tuberculosis. So far, though, that hasn’t happened. I have made no progress on my long-delayed book about photography and violence; documentary film projects that were slated to begin are no closer to fruition. Thinking about anything except my day-to-day health and how to improve it is a struggle.
I don’t know whether to be grimly amused or enraged by the irony that the chemotherapy drugs designed to save my life may be what will kill me.
The discouraging lack of progress in finding a cure for such an ancient disease may explain the relative silence about IPF. Journalists throng to report on any illness when science advances understanding of it, and there hasn’t been a lot of promising news to report on this front. The prospects for treating, say, lung or prostate cancer are far more optimistic. It can’t be easy for doctors to uplift the spirits of their patients knowing that so little can be done to keep them alive. Ofev will only slow the steady pace of the inevitable — the petrification of my lungs.
If idiopathic pulmonary fibrosis is, as Stephen writes, “the big mystery in all of pulmonary medicine, a disease so cryptic it seems almost impenetrable,” one would hope that more hospitals were now trying to crack the code. This is a disease that badly needs a respected public figure to advocate for more research funding. The powerful tools of the medical-industrial complex can’t be trained on solving the riddle of IPF until more people learn that it exists.
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Richard B. Woodward is an arts critic in New York. This article was originally published in the Ideas section of The Boston Sunday Globe.
Piata Tauwhare, 30, from Hokitika, was found dead at a tanning salon in Swansea on May 28. Photo / Supplied
Every year, otherwise healthy New Zealanders drop dead with no warning. Researches hope new funding will prevent more deaths, writes health reporter Emma Russell.
Ifan Jones remembers kissing his 30-year-old wife goodbye and saying “I love you”, as he did every morning before she left for work.
That Saturday afternoon, on May 28, the New Zealander was found dead at a tanning salon in Swansea, Wales.
Piata Tauwhare was healthy, loved to exercise, ate well, didn’t smoke and rarely drank alcohol, Jones told the Herald on Sunday.
While her death is being investigated by the Coroner, Jones had been told by police the cause was suspected to be sudden arrhythmic death syndrome (SADS), also known as sudden adult death syndrome.
SADS is an umbrella term used to describe deaths of otherwise healthy people, usually under 40, after their heart stops beating, due to an, often undiagnosed, genetic instability of the heart.
The condition is different from a heart attack which occurs when an artery that sends blood and oxygen to the heart is blocked due to fatty, cholesterol-containing deposits that is built up over time.
Hokitika-born Tauwhare had no known heart condition and no family history of heart disease, Jones said.
Knowing nothing about SADS has meant Jones has been left with more questions than answers and, he says, his world has been shattered.
“It destroyed my life. I go to football practice and I come home and she’s not there, my life is ruined,” he told the Herald on Sunday.
“She was everything to me, so down-to-earth, never had a bad thing to say about anybody.”
New Zealand’s Coroner’s office has recorded 16 deaths caused by SADS in the last five years but the total number of Kiwis who have died from the genetic condition is likely to be much higher as not all deaths are referred to the Coroner.
A registry was developed in 2008 by cardiologist and electrophysiologist Martin Stiles and a team at the University of Auckland’s Waikato Clinical School, thanks to seed funding from Cure Kids.
It aims to help detect and protect young people who may be at risk of SADS.
Anyone who has died from or survived a cardiac arrest with no known cause can be referred to Stiles and his team by hospitals, often cardiologists. The Ministry of Justice may also refer deaths without a cause.
Further testing is then carried out to confirm SADS. Then, researchers work to track down family members who may be at risk and if they would like to get a genetic blood test.
Stiles said for most conditions there was a 50 per cent risk for each first-degree relative.
“We are most interested in it affecting young people so that’s generally people between the age of one and 40, after which time non-genetic diseases start to dominate,” Stiles said.
A registry to track these sudden heart deaths was developed in 2008 by cardiologist and electrophysiologist Martin Stiles and a team at Auckland University’s Waikato Clinical School. Photo / Supplied
Stiles said they have 5092 registered – mostly at-risk family members, along with some who had died of SADS.
“When the family sees us about their loved one who has died, they are grieving and oddly enough sometimes they have some guilt about the fact that they have passed on a hereditary disease to their child. Yet they are no more guilty of passing on a genetic disease than they are for passing on a gene for blue eyes.”
He said his team, which included social workers, psychologists and genetic counsellors worked to help families through this process of investigating why their child died.
There are a number of preventions that could help lower the risk, Stiles said including avoiding certain activities and reducing alcohol intake.
Getting a fever can be a high-risk period, so those at risk need to “be aggressive” about treating that fever with paracetamol and fluids.
People at risk of SADS may need a defibrillator implanted to shock their heart if they have a cardiac arrest.
While Auckland, Waikato and Wellington each have someone working to track down families across their wider regions, Stiles said, there was nobody available in the South Island.
“It’s a bit weird that’s the way it’s happened but that’s just the way the funding has fallen.”
The team had applied for further research funding with Pūtahi Manawa, Healthy Hearts for Aotearoa New Zealand (HHANZ), to fill this inequity gap.
They were due to hear back about whether that had been successful in the coming weeks, Stiles said.
There were also ethnic disadvantages as there were far fewer people with Polynesian ancestry known to have the genetic condition compared to those with European ancestry. This meant it was harder to test Māori and Pasifika as their genetic database – made up of known mutations – wasn’t as big as their Pākehā counterparts.
Stiles said further funding would help to address this.
“We will look at Māori families affected by inherited disease who don’t have a genetic diagnosis and we will do detailed genetic studies with the aim of ‘upgrading’ any genetic variants to ‘disease-causing mutations’.”
A South Island registry for SADS would help families like that of Greg Watchman, 57, who died after returning from an hour-long bike ride.
On a gusty November afternoon, the Blenheim father used a ladder to get an umbrella that had blown onto the roof.
When he came back down he was short of breath. He asked his 17-year-old step-daughter to fetch him a paper bag to breathe into.
Andrea and Greg Watchman took a cruise to the States two years before he dropped dead suddenly. Photo / Supplied
She did but by the time she returned, he had collapsed onto the ground.
“Her boyfriend performed CPR straight away and I was home within six or seven minutes. By that time the ambulance and fire brigade were there,” Greg’s wife Andrea said.
CPR was carried out for 40 minutes but he could not be revived. He died on November 15, 2018.
That day still haunts Andrea.
“It was completely out of the blue and no one saw it coming. I still don’t really understand what happened,” his widow said.
Meanwhile, Jones, a warehouse worker, said losing his wife had been incredibly tough for him, friends and family.
“I’m a mess, I’m just depressed and I don’t know what to do with myself.”
He said Tauwhare’s family and friends had shown him much love and support when he visited New Zealand a few months ago.
Jones and Tauwhare married in September last year. Photo / Supplied
Her family were understandably devastated, Jones said.
The couple had met on a night out in Bristol, England two years ago, while the Kiwi was travelling.
“She was amazing, I’ve never [met] anyone like that before,” Jones said.
The pair married on September 1 last year, in a small ceremony in Swansea, witnessed only by his parents.
Jones described his wife – who was working for a mental health wellbeing service called VitaMinds – as a very generous person and extremely proud of her Kiwi roots.
Other Kiwis lost to SADS
Anita Dell, a mum of two from Blenheim, was 38 when her husband woke to her gasping. She went into cardiac arrest and could not be revived. She had no prior heart condition or underlying health condition.
Leanne Gardyne, a mum of three from Richmond, was 46 when her husband awoke to her struggling to breathe in August 2019. Her hands were clenched, she was shaking, and her pupils were dilated. He moved her to the floor to assist her breathing and then called emergency services, but she was unable to be revived. She had worked as a seafood process worker.
Charles Gray, 66, from Blenheim, was reported to be in “good spirits” the day he died. He had been cooking eggs when they began burning and the house filled with smoke. He was found dead on the lawn a short time after.
Nikki Goodfellow, a 50-year-old checkout operator from Mapua, was loudly gasping for air in her sleep. Her husband tried to wake her but failed. The fire crew were first to the scene and could not revive her.
Gerald Scott, 70, from Nelson was found by a passing motorist unresponsive on a public footpath in Nelson. Emergency services performed CPR but he was unable to be revived.
Phillip Patira, 52, from Christchurch was playing golf when he was seen to become short of breath, clutch his chest, collapse and become unresponsive. He had suffered non-insulin-dependent diabetes, hypertension, gout, and increased BMI. The cause of death was SADS, the Coroner found.
Twitch streamer and Halo 2 speedrunner JerValiN has managed to accomplish something that was once believed to be impossible: a deathless run of Halo 2 on Legendary difficulty, with all Skulls on (other than Envy, which gives players an advantage).
By successfully finishing this challenge, JerValiN has completed the $20,000 bounty issued by popular Twitch streamer MoistCr1TiKaL to beat Halo 2 LASO without dying.
The run took six hours, 29 minutes, and 44.17 seconds, and involved masterful and methodical gameplay and the incredibly skillful use of skips and glitches.
After weeks of grinding the Halo 2 campaign, Twitch streamer and Halo speedrunner JerValiN has finally managed to achieve something the internet once thought was impossible: a completed run of the game on Legendary difficulty with all Skulls on (except the Envy Skull, which provides Master Chief with an invisibility cloak) without any deaths. No other player has managed to achieve this feat, meaning that JerValiN has officially made gaming history.
The community-wide race to beat Halo 2 LASO without dying began when the popular Twitch streamer MoistCr1TiKaL issued a $5,000 bounty to complete the challenge in late June, which was then raised to $20,000 in July. After attempting the challenge dozens of times, JerValiN finally managed to finish it with expert knowledge of Halo 2’s campaign systems, clever use of glitches and skips, skillful and methodical play, and a touch of luck.
Halo 2 LASO is notorious for being significantly more difficult than any other Halo LASO campaign, largely due to the fact that with all Skulls activated on Legendary difficulty, enemies do insane amounts of damage and the player has barely any health at all. On top of that, the combined effects of all of Halo 2’s skulls severely disadvantage the player by taking away their heads-up display (HUD) and weapon viewmodel, preventing them from recharging their shields without getting melee kills, and reducing the amount of ammo they can carry. Meanwhile, all enemies get an invisibility cloak, a higher rank, an improved fire rate, and the ability to spam grenades with reckless abandon. Halo 2 is also widely considered to be terribly balanced for Legendary difficulty in general (I’m sure you’ve seen the Sniper Jackal memes).
Part of me seriously doubted this challenge would ever be completed, which made watching JerValiN do it live an incredible experience. Halo 2 LASO deathless is arguably the hardest challenge in all of gaming, but in a dazzling display of skill and finesse, one man has proven that it’s not impossible.
The successful run took six hours, 29 minutes, and 44.17 seconds in total. You can watch the full VOD directly from JerValiN’s Twitch channel in the VOD above.
