Judge Grants $3M to Incapacitated Adult Film Actress’ Mom

A judge has approved a $3 million settlement on behalf of a woman and her daughter, who is a former adult film actress but now-incapacitated, against the Malibu rehabilitation center where her offspring allegedly was left in a vegetative state in 2024 because oxygen to her brain was curtailed.

Santa Monica Superior Court Judge Susan Bryant-Deason gave her nod to the accord involving defendant Summit Malibu after attorneys for Yesenia Lara Cooper, mother of Litzy Lara Banuelos, accepted a reduction in their requested fees to be deducted out of the settlement from $1.2 million to $1 million. Banuelos was addicted to ketamine and previously had a failed stint in a drug rehabilitation facility, according to her attorneys’ court papers. Both she and her mother were plaintiffs in the case.

A judge’s approval of the settlement was needed because Banuelos is incapacitated.

In a previous sworn declaration in support of the lawsuit resolution, plaintiffs’ attorney James A. Morris Jr. said hard work was involved in reaching the accord.

“Having lived and breathed this case for nearly two years, I can state with confidence that Ms. Banuelos is significantly injured, but that this case was no slam dunk,” Morris said. “No one knows what exactly happened to Ms. Banuelos or whether defendants could have done anything different to prevent the injuries from happening, given Ms. Banuelos’ fragile state as a ketamine addict when she entered their facility.” 

The lack of oxygen to Banuelos’ brain has caused an anoxic brain injury from which she will never recover, according to Morris, who further says that she cannot move her body and is “effectively frozen.” She sometimes opens her eyes, but does not always track movements, and she occasionally grunts, according to Morris.

At one point specialists offered the theory that a latent infection Willis could have possibly gotten while in the adult film industry may have caused her health issues, Morris says.

Banuelos was known in the industry as Emily Willis. She was a Penthouse Pet of the Month in May 2019 and won multiple Adult Video News awards, including Female Performer of the Year in 2021.

In their previous court papers, Summit Malibu lawyers said Banuelos shared blame for what occurred to her health.

“It is undisputed that during her stay, Litzy had refused to follow medical recommendations and take her medications,” according to the Summit Malibu attorneys’ pleadings. “She refused to go to urgent care or the hospital voluntarily, despite being encouraged to do so by (Summit Malibu).”

While Cooper contended that Summit Malibu should have forced her daughter to go to urgent care or a hospital despite the young woman’s refusal, the facility had no authority to do so, according to the rehab center’s lawyers.

Summit Malibu’s attorneys also said there was no evidence of any negligence on the staff’s part regarding Banuelos’ care given that Cooper’s own lawsuit states her daughter was regularly monitored and seen by the staff.

Nonetheless, Cooper alleged Summit Malibu was lax in her daughter’s care. Willis, now 27, was at the facility for treatment of a ketamine addiction.

“As a direct and proximate result of (Summit Malibu’s) neglect, abandonment, recklessness and negligence in failing to provide care and treatment for Litzy, she suffered irreversible brain damage and permanent physical and mental incapacity, pain, suffering and emotional distress, among other damages,” the suit filed in December 2024 stated. 

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Judge Grants $3M to Incapacitated Adult Film Actress’ Mom

 

Conscious Decisions

By Ariella Steinhorn

At an assisted-living home, Vinit Shinde lay paralyzed in bed attempting to suck on a lollipop. One of his aides had positioned the phone so that Vinit’s brother and sister-in-law could see him. Eventually when the aide removed her hand from the stick holding the lollipop in Vinit’s mouth, he seemed to gag, trying to activate any muscles of his jaw, tongue, and throat to stop the lollipop from entering his throat or dropping out of his mouth.

In January 2018, Vinit suffered a severe and abrupt brain aneurysm at the age of 45. Multiple doctors deemed him to be in an extreme vegetative state, meaning that he did not have the typical brain function to exhibit mood or affect, cognitive functioning, executive functioning, language, or memory.

Today, Vinit is alive because of a feeding tube and full-time care–but mostly because of a decision made in Georgia’s Fulton County Probate Court, transferring guardianship of his nearly $1 million estate and future medical decisions from his brother to his ex-wife and court-appointed attorneys. Vinit is now one of an estimated 1.3 million adults in the U.S. living under guardianship, whose guardians control roughly $50 billion in assets. Across the country, these arrangements are typically under the control of an insular group of state judges and lawyers, who take on financial, legal, and medical decisions for people who may be elderly or otherwise mentally incapacitated.

Once a guardianship has been cemented and a person is officially a ward of the state, there is little recourse to change how their guardian makes financial and medical decisions for them. While they’re done with the interest of people like Vinit in mind, in practice, they can often be mired in ethical, legal, and cultural dilemmas—posing a seemingly unending string of impossible choices for the people who love and care for them.

Before the guardianship was transferred to Vinit’s ex-wife–whom he separated from in 2012 and divorced from in 2016–his family had made the difficult decision to move him into hospice. Without a will or advance directive, his only living immediate relative, his brother, had signed a Physician Orders for Life-Sustaining Treatment agreement with two doctors to transition him off of life support. After years of consulting medical professionals and believing that this would not have been a dignified life for Vinit, they proceeded with the move to hospice.

Then Vinit’s ex-wife—who would visit him from time to time—contacted the Capitol Ombudsman Program director in Atlanta to allege that he was not actually in a vegetative state but that he only appeared to be in one. In public legal filings, she claimed that Vinit could watch television and communicate with others by blinking, smiling, and laughing. (Slate has reached out to Vinit’s ex-wife and her lawyer for comment, and has not received a response.)

The ombudsman set up time to observe Vinit, after which she determined that removing his feeding tube was not in his best interests. Several nonmedical staff at the home also expressed in a letter that they were “distressed” about Vinit’s move into hospice, because “they believe [he] responds to them with smiling and that he also smiles while watching TV.”

In depositions with two of his doctors, conservatorship lawyers for his ex-wife presented the theory that there could have been a chance, however infinitesimal, that he would be satisfied in a consciousness that involved blinking his desires. She sought out to prove that not only was Vinit conscious but that his condition could be improved. Later, she filed a petition in the Fulton County Probate Court, seeking to remove Vinit’s brother as his guardian and conservator, and requesting that she be appointed the successor. With his ex-wife emboldened by the support from nonmedical experts at the home and the ombudsman, a fight over Vinit’s life and medical treatment—and the conservatorship of his nearly $1 million estate—ensued.

Even though both Vinit’s family and ex-wife may have his best interests at heart and want to make the right decisions for him, they’re still left with a set of decisions that have no right answer. What is in the best interest for someone you love who can no longer care for or make these choices for themselves? Can you let them go if there’s a chance—however slim—that they can get better? These decisions underscore the complexity behind the guardianship system at large. While this may not be the case with Vinit, the system as a whole has long come under scrutiny amid allegations of abuse, neglect, and even corruption throughout the country.

While individual family members or friends may have a myriad of desires and opinions on how to handle care for an incapacitated loved one, the financial and legal structures of the guardianship system can be ripe for evading accountability and concentrating power among one or a few stakeholders. For example, in Georgia, one 2020 investigation uncovered apparent conflicts of interest in Fulton County’s guardianship system, including a case where a court-appointed independent lawyer donated to the judge overseeing the case. In New York, a ProPublica investigation found rampant neglect and abuse, revealing that examiners tasked with care “tend to focus almost exclusively on financial paperwork” rather than the care and condition of wards. As a result, in August, the state announced a task force to overhaul the program, with some pushing for new legislation.

Other states are taking notice: Pennsylvania now requires professional guardians to pass certification exams, while Illinois lawmakers are pushing to make it harder for private guardians to profit off of vulnerable people who have no one else to look after them—after reports that a private guardianship company and law firms representing hospitals appeared to be colluding to run up costly bills at the expense of the people under guardianship.

Georgia’s policies around life and death were recently thrust into the spotlight in the case of Adriana Smith, a 30-year-old mother and nurse who was kept alive, brain-dead, as a vessel to give birth to a baby without her consent. Smith was caught in the crosshairs of the Supreme Court’s Dobbs decision, validating a Georgia state law that considered her fetus a person if it had a heartbeat. And the public at-large became familiar with the concept of conservatorship because of Britney Spears, whose finances were tied up and controlled by her family after the system deemed her mentally unstable.

Then there’s Terri Schiavo’s case in the early 2000s. Schiavo was considered by doctors to be in a persistent vegetative state after her brain was deprived of oxygen. While her husband conveyed what he thought her wishes would be—to have life support withdrawn—her parents believed that she smiled and expressed emotion. After life support was withdrawn, autopsies confirmed that she was indeed in a “persistent vegetative state.”

More recently, there has been a rise in what legislators are calling “death with dignity” legislation. In several states, including Colorado, Maine, Montana, and Nevada, legislation has passed or is being considered to allow for people to choose physician-assisted death when they decide that life is unbearable. But in these cases, many people still have the agency and critical thinking skills to make that decision for themselves.

For example, one man in Maine chose physician-assisted death last November after a long battle in ALS. His wife—now an advocate for others to do the same—reported that he had lost the ability to speak and swallow, and that his claustrophobia made him feel like he was “drowning and suffocating” at the same time. Opponents or those with more nuanced approaches to “death with dignity” believe that lines should be drawn around depression or certain disabilities—that choosing death while depressed is more about abandonment than autonomy.

But what about people like Vinit, who could never have predicted a sudden brain bleed rendering him with no autonomy? Who gets to choose for them? Both Vinit’s family and his ex-wife may want the best for him—but even they can’t know what exactly he would choose if he could right now. It’s a case that’s emblematic of the core problem: These are impossible decisions, and there’s no “right” choice with an impossible decision.

Several years ago, Vinit was barely spending time in bed unless he was sleeping. With no kids or pets and recently divorced, he had very few grounding commitments beyond his job as an IT architect and a condo he owned in Atlanta. According to friends and family, Vinit was a gregarious person who liked to explore the world and had many friends. His ex-girlfriend Sarah told Slate that he “knew no stranger,” was “witty and funny,” and “everyone’s best friend.” One of his best friends told Slate over text that “Vinit was vibrant, highly intelligent, popular, and positive. Simply put, he was a pleasure to be around.” His brother described him as a “kind, generous and very social person.”

On Jan. 27, 2018, Vinit’s 45^th birthday, he didn’t show up to work. Two days later, his employer alerted his family. His family also had wondered if something was wrong, as they hadn’t heard from him on his birthday either. Vinit’s best friend, his best friend’s wife, and his ex-wife went to check on him at his apartment. He was discovered by his best friend collapsed on the floor, awake but incoherent.

Doctors found that he had suffered a subarachnoid hemorrhage resulting from a ruptured brain aneurysm. While they were able to coil the rupture and keep his heart beating, he was extremely impaired—unable to swallow, communicate, move his body, or control his bowel movements.

Vinit’s brother recalls a neurosurgeon at the time saying that Vinit’s brain was so damaged that the most he could ever do was “move his neck from one place to another, or utter a few words,” he told Slate. In November 2018, around nine months after the aneurysm, another neurologist  echoed this analysis, telling the family that Vinit did not qualify for any treatment options or experimental treatments because there was no improvement in his condition.

Yet Vinit’s family felt he was too young to let go. They moved him to a brain injury rehabilitation center, but doctors there also concluded that his brain condition was irreversible. It was around this time that Vinit’s brother was appointed his conservator and guardian in Georgia. He was moved to a nursing home, where physicians initially urged the deescalation of life-sustaining care due to his negative prognosis and poor quality of life. Vinit’s family was paying out of pocket for his treatment, and they also crowdfunded among friends and family to pay for some of his rising medical costs, hoping that some progress could be made to improve his cognitive functioning and quality of life.

But two years after the aneurysm, Vinit was not showing any signs of cognitive improvement. In a deposition, one of his doctors said he was technically “demented,” but that his cognition was far worse than someone who has dementia. A medical social worker also acknowledged that Vinit was on a percutaneous endoscopic gastrostomy tube through which all medication and nutrition were administered, and that he had “no awareness of his surroundings and no purposeful movements.” A note reviewed from his care center to a Georgia ombudsman referred to him as “essentially brain-dead.”

His brother told Slate that he imagined that the Vinit who was single, enjoying his local bars, drinking beer, and traveling the world would not have wanted to live in a bed covered in sores, unable to communicate, and without the ability to feed, clothe, or bathe himself unless fully assisted.

He also reflected upon a conversation that the brothers had in 2017 at their mother’s funeral, where they agreed that neither brother would want a long or painful death like that of their father, who died of a prolonged battle with cancer.

While difficult to accept, Vinit’s brother and two doctors—the attending physician at his home and the medical director of the hospice—signed the POLST agreement, recommending discontinuation of care and designating the three of them as the people who would make the end-of-life decisions on his behalf.

In January 2021, Vinit was referred to hospice, which the ethics committee of the health care facility had no objections to. It was a heart-wrenching decision for the family, but in a final letter written to Vinit’s attending physician at the assisted-living home, his family wrote: “[We] would talk to [Vinit] about settling down with a family and buying a house. However, that was not his plan. He wanted to live freely on his own terms.”

What further complicates this answer about what is right or wrong for Vinit is that researchers are giving pause to the idea that all people in vegetative states have no consciousness—or that all people who become nonverbal and paralyzed would rather choose death. These factors are large parts of the reason why Vinit’s family and his ex-wife may try all options—no matter how small the chance of success—of keeping him alive.

In August 2024, neurologists published a study into the potential for consciousness among vegetative or minimally conscious patients. They found that 25 percent of the patients studied, who were asked to spend several minutes completing cognitive tasks like imagining themselves playing tennis or swimming, responded with the same patterns of brain activity seen in people with healthy brains.

Following the 2024 study that found potential consciousness in certain vegetative patients, it was noted in the New York Times that “it is possible that people with disorders of consciousness may one day take advantage of brain implants that have been developed to help people with other conditions to communicate.”

But since many of these vegetative states are brought about by a sudden event like an aneurysm—meaning many previously healthy people may not have had time to prepare a will or directive—the question of what they would have wanted can be a tricky one to decipher. What also complicates who lives or dies is the court systems, and the many people involved in a family member’s life or death who might have competing interests—many of which might be valid and well-intentioned, depending on the perspective.

At the end of the day, the decision for Vinit’s guardianship came down to money. A judge ruled that Vinit’s brother had not received the proper court approval to sell about $20,000 of Vinit’s stock in order to pay for certain bills piling up—and that he should have sold their deceased mother’s home in India instead.

In a Fulton County Probate Court presentation reviewed by Slate—called “Playing God: The Ethical Conflicts in End-of-Life Decisions”—Vinit’s story is used as a case study to demonstrate the need for the court to intervene and keep him alive. They even use Bollywood actors in one of the slides about Vinit.

While the Georgia probate court likely does not have jurisdiction over a family home in India, the court was still able to claim that Vinit’s brother was not acting as a proper fiduciary in the stock sale. As a result, he was removed as guardian and conservator. Vinit’s ex-wife was appointed as guardian to oversee his medical affairs, while a county conservator was appointed to oversee his finances.

His brother appealed the decision, but the court-appointed attorney for Vinit agreed with the court’s decision to strip him of his guardianship over his brother. The attorney’s statement to the Georgia Court of Appeals said that fiduciary considerations were more important than the POLST agreement or end-of-life considerations.

Today, Vinit’s family FaceTimes him weekly from Boston to see his face, and they travel from their home in Boston to Atlanta when they can. He seems vacant and incomprehensible to them.

But now, the family feels mostly in the dark about Vinit’s current and future medical plans. Medical records reviewed by Slate show that Vinit has been in and out of Emory University Hospital over the past few years since his ex-wife became guardian. One document from 2023 states that his insurance did not cover “post-transplant immunosuppressive drugs when [he] got this service.” The family does not know what “this service” refers to, but Vinit’s family and friends have observed an increasing amount of “blinking” in their recent interactions with Vinit—as well as the blurting of unrelated words and letters.

This ambiguity is obviously frustrating to his family. Vinit’s sister-in-law describes the perpetuation of his life, especially if his bodily autonomy is indeed being transferred to his ex-wife’s decision-making, as “cruel.” His brother adds: “As Vinit’s only living relative, I have not been consulted or informed about ongoing medical treatment, raising serious ethical concerns. Why are we excluded from medical decisions about his care?”

In April 2023, the Shinde family received an amicus brief in support of their case from end-of-life care nonprofit Compassion & Choices, which wrote that: The “court’s primary focus should be on uncovering what the incapacitated person would have wanted and that the process followed by the Georgia probate court in this case did not allow for that to happen.” A spokesperson for Compassion & Choices shared with Slate that they “weighed in with the amicus brief to ensure that the court was prioritizing what Mr. Shinde would have wanted when determining what treatment decisions were or were not appropriate.”

With various medical advancements over the years that allow for brain injury patients like Vinit to be kept alive in care homes, the decision about whether to withdraw life support and care—or not—can feel unthinkable. There are open medical and scientific questions around the presence of covert consciousness—and ethical and sometimes religious questions around whether someone’s body should remain preserved, even if the person who they once were feels all but gone. Then, there’s the optimism around future medical developments for brain injury patients, the notion that there is even the slightest chance that someone could improve, especially when their faces may exhibit expressions we classify with consciousness, like smiling. Although there may be no meaning behind those reflexes in patients with severe brain injuries, the presence of those seemingly human expressions may make it even more difficult to let someone go.

Beyond Vinit and his brother’s conversation at their mother’s funeral, there is no documented information about whether he would have desired to be kept alive in such a condition. (Vinit’s ex-wife and lawyers did not respond to Slate’s request for comment.) Sarah, the ex-girlfriend who perhaps knew him most intimately closest to his aneurysm, told Slate she never spoke to him about whether he would want to stay alive in a vegetative state. But she did say that “I 100 percent think that he would not want to be sitting in a bed for seven years.”

When asked about the family’s decision, Sarah said: “I would have supported their decision. There are two avenues of thought: First, I don’t think anyone should live this way, he wouldn’t want that. But it’s also not my decision. It’s the family’s.” 

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Conscious Decisions 

San Carlos Apache leader 'horrified' by incapacitated tribal member's pregnancy at facility

The chairman of the San Carlos Apache Tribe in southeastern Arizona says he is horrified and wants justice served for the incapacitated tribal member who became pregnant while a resident at a Phoenix nursing facility.

The tribe says the patient is a 29-year-old woman. She gave birth to a baby boy while still in the Hacienda HealthCare facility on Dec. 29.

"On behalf of the tribe, I am deeply shocked and horrified at the treatment of one of our members," San Carlos Apache Chairman Terry Rambler said in a statement. 

"When you have a loved one committed to palliative care, when they are most vulnerable and dependent on others, you trust their caretakers. Sadly, one of her caretakers was not to be trusted and took advantage of her. It is my hope that justice will be served."

Officials with the San Carlos Apache Police Department say they will assist the Phoenix Police Department in any way possible to find the perpetrator.

Phoenix police first became aware of the situation when they responded to a report of an infant who had coded at Hacienda de Los Angeles, 1402 E. South Mountain Ave.  at 3:42 p.m. on Dec. 29.

When officers arrived, they found an incapacitated woman who had delivered a baby. Both were then transported to a local hospital, a police report says. A sexual assault investigation is ongoing, police say.

The woman's family released a statement through Phoenix lawyer John Micheaels this week, saying the baby boy was born into a loving family and will be well cared for.

In its statement, the family said they are "outraged, traumatized and in shock" and not emotionally ready to make a public statement.

Phoenix police on Tuesday served a search warrant on the facility to get DNA samples of male employees.

Authorities say the woman who gave birth had been a resident at the facility for many years. AzFamily.com, the CBS affiliate that broke the story, has reported that the woman has been in the facility since a near-drowning more than 10 years ago.

William Timmons, a longtime top executive with Hacienda HealthCare, resigned Monday.

Detectives are appealing to the community for assistance in identifying the perpetrator. Anyone with information can contact the department's violent crimes bureau at 602-262-6141. To remain anonymous, contact Silent Witness at 480-WITNESS (480-948-6377) or 480-TESTIGO (480-837-8446) for Spanish.

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San Carlos Apache leader 'horrified' by incapacitated tribal member's pregnancy at facility

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Facility CEO resigns after woman in vegetative state gives birth; new allegations emerge

Patient in vegetative state gives birth, sex abuse investigation underway: report

Facility CEO resigns after woman in vegetative state gives birth; new allegations emerge

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The chief executive officer of Hacienda HealthCare resigned Monday, just days after a vegetative patient at a Hacienda nursing facility in Phoenix gave birth. Bill Timmons' resignation, which was unanimously accepted by Hacienda's board of directors, came as new allegations of past abuses emerged.

CBS Phoenix affiliate KPHO-TV was first to report on the birth.

Hacienda has been under intense scrutiny since the 29-year-old Native American woman had the healthy baby boy December 29, the station said. The patient has been in a vegetative state for 14 years, since a near-drowning incident, KPHO noted.

In a statement, Hacienda said Board Executive Vice President Gary Orman vowed that Hacienda "will accept nothing less than a full accounting of this absolutely horrifying situation, an unprecedented case that has devastated everyone involved, from the victim and her family to Hacienda staff at every level of our organization."

Orman said in the statement that Hacienda "will continue to cooperate with Phoenix Police and the investigating agencies at all levels in every way possible."

The station said it's learned that she was raped several times.

KPHO also spoke with a former Hacienda manager who said Timmons insisted that a 1988 incident of abuse of a different patient be covered up.

The manager said female nurses were standing around a nonverbal male patient's bed, talking inappropriately about his genitalia. The ex-manager said when that was addressed at a subsequent manager's meeting, Timmons slammed his fist on a table and said, 'No! No one is going to report this,"' even though the law required that state health officials be notified.

"I was scared," the ex-manager recalled. "Bill Timmons has a temper. And we knew not to mess with that temper because people got fired."

She said no one reported that incident solely out of fear, and she believes there's been other abuse throughout the years.

Parents of patients began coming forward, saying they had concerns about the facility's ability to keep their children safe.

Meanwhile, a state lawmaker is considering legislation to protect patients living at long-term healthcare facilities from abuse.

Rep. Jeff Weninger told KPHO one idea would be to allow families to install cameras in the rooms of their loved ones so they could be monitored remotely.

Louisiana passed a bill last year forbidding healthcare facilities from rejecting requests for cameras.

"You can hook these up through an Internet signal in nursing homes," Weninger said.

Weninger said he was in the early stages of looking at the issue.

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Facility CEO resigns after woman in vegetative state gives birth; new allegations emerge

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Patient in vegetative state gives birth, sex abuse investigation underway: report

Patient in vegetative state gives birth, sex abuse investigation underway: report

A woman who has been in a vegetative state since she nearly drowned 10 years ago has reportedly given birth to a baby last month, prompting a sex abuse investigation at the Phoenix-area nursing facility, AZ Family reported.

The baby was born on Dec. 29 and is doing well, according to the report. The woman is reportedly a patient at Hacienda HealthCare in Phoenix. A source familiar with the situation told AZ Family that "none of the staff were aware that she was pregnant until she was pretty much giving birth."

"From what I’ve been told she was moaning. And they didn’t know what was wrong with her," the source said.

The source told AZ Family that the patient required constant care and that many people had access to her room.

The facility has reportedly changed protocol after the Dec. 29 birth. Male staff needing to enter a female room are required to bring a female employee with them, the source said.

A Hacienda HealthCare nurse declined Fox News' request for comment because it would be a HIPPA violation and referred questions to the CEO of the nursing facility. Phoenix Police Department did not immediately respond to Fox News' request for comment.

Hacienda issued a statement to AZ Family and said it has been in business in the valley for over 50 years and "has an outstanding reputation providing high quality specialized care for our patients."

"As a Healthcare provider, we cannot comment on any patient due to Federal and State privacy laws. Additionally, we cannot comment on any ongoing investigations. We can say that our patients and clients health and safety is our #1 priority and that we always cooperate, when asked by any agency, in an open and transparent way."

Authorities are investigating the facility for possible sex abuse, AZ Family reported. No further details were released.

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Patient in vegetative state gives birth, sex abuse investigation underway: report

What it's like be 'locked in' your own body: Victoria Arlen on her miraculous journey from vegetative state to the Paralympics and 'DWTS'

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Victoria Arlen is a fighter.

The on-air personality for ESPN, gold-medal Paralympian swimmer, and author of the new book Locked In, has overcome seemingly impossible odds after a health scare that could have ended her life.

At 11 years old, Arlen, an active kid full of personality, was suddenly struck by two rare neurological conditions, transverse myelitis and acute disseminated encephalomyelitis, which caused inflammation in her brain and spinal cord and left her unable to speak or walk. “I was in a vegetative state for four years,” she tells Yahoo Lifestyle.

“I was locked in,” she says. “So I could hear and see. I just had no way of moving or communicating or letting anyone know that I was in there.”

From her hospital bed, Arlen could hear her own doctors speaking with her family and being written off as a “lost cause,” she says. “I had to become pretty stubborn to prove them wrong.”

But her situation was grave enough that she also realized she might not make it. “I wrestled with the thought of dying every day, and so I had to make a conscious decision to be grateful for the day I’ve been given, for the moment I’ve been given,” she says. “I just need to be grateful for the fact that I’m alive right now.”

She says her faith in there being a bigger plan for her and having hope kept her going. “I realized very early on that I hadn’t really fully lived yet,” she says. “So I was not going to let my story end like this when I really never even got a chance for it to get started.”

Having her family’s unwavering support was also critical to Arlen’s recovery. “They were being told to kind of give up and move on with their lives, and they refused to do so,” she says. “And so their fight and their willingness to keep believing and supporting me and loving me was the wind beneath my wings.”

Although Arlen couldn’t move on her own, she desperately wanted to give her family a sign that she was aware of her surroundings. When she was 15 — after 4 years of living in a vegetative state — she somehow managed to get control of her eye movements.

When Arlen’s mom walked into her hospital room one day, Arlen tracked her mom with her eyes as she moved, which surprised her mom and made her realize that her daughter may have been alert the entire time.

Like a scene out of a movie, Arlen’s mom asked her daughter to blink if she could hear, and Arlen was able to. “It’s single-handedly the most powerful moment I have ever shared with anyone,” Arlen says.

The simple act of blinking let Arlen’s family know she was there, and she was fighting.

From there, Arlen progressed, going from blinking as a way of communicating to eventually signing when she developed hand control and then using communication boards.

While in her vegetative state, Arlen didn’t have a clear concept that four years had actually passed. When she was told, she says she felt a sense of “panic [from] missing all these years of my life.” She adds, “I really tried to not focus on how much time had passed because I could drive myself crazy with that.”

Arlen, who sustained severe permanent damage to her spinal cord that left her paralyzed from the waist down, had to relearn how to speak, eat, and move again. As her strength increased, her family encouraged her to do more and push herself. Although Arlen had been an avid swimmer and “water baby” before getting sick, she was now petrified of the water. “The thought of going in a pool where my legs didn’t work and I didn’t have full trunk support terrified me.”

But her brothers, William and Cameron, decided they would take her swimming, strapping a life jacket on her and jumping into the water with her to help Arlen get over that fear. They did this daily, and eventually, she became strong enough in the pool that she decided to get into competitive swimming.

It was humbling at first, as the teenage Arlen was beaten by 8-year-olds. But she didn’t give up. She says that when she was in the pool, no one knew the wheelchair off to the side belonged to her. It was a motivating factor for the athlete.

Arlen kept swimming, found a coach, and realized she had an opportunity to use her swimming competitions as a platform to inspire others. She eventually made it to the 2012 Summer Paralympics in London and won three silver medals for Team USA. Then, on the last night of the competition, she thought, “I have nothing to lose and everything to gain.” So she swam for herself, singing One Republic’s “Good Life” in her head — her go-to song whenever she does anything that scares her — and she won gold in the 100-meter freestyle.  (Continue)

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What it's like be 'locked in' your own body: Victoria Arlen on her miraculous journey from vegetative state to the Paralympics and 'DWTS'

Brain Injury and the Civil Right We Don’t Think About

The last time I saw Margaret Worthen was in November 2012. She was in New York participating in a study of patients with severe brain injury. As soon as I walked into her room, I knew something had changed. She was still immobile, but she noticed my presence, was more attentive and engaged. And there was something else: She at times was able to use her left eye to answer simple yes or no questions. That morning, she seemed to relish her new found fluency. She responded with verve, as if the determined downward swoop of her eye could signal an exclamation point.

Communicating with one eye may not seem like much, but it was something to behold. Maggie, as she was known, had suffered a complex stroke six years earlier, during her senior year at Smith College, that involved areas deep in her brain. She had been thought to be in the “vegetative state” — the term commonly used to define the unconscious brain state most of us associate with the right to die movement and the legacies of Karen Ann Quinlan, Nancy Cruzan and Terri Schiavo.

Later, Maggie was found to be in the “minimally conscious state” — a term medically formalized in 2002. Unlike vegetative patients, those in MCS are conscious. They demonstrate intention, attention and memory. They may reach for a cup, say their name and notice you when you walk into their room. The problem is that these actions may be rare and intermittent, so when family members who witnessed them share their observations with staff members, they are often attributed to a family’s wishful thinking.

This may be true in individual cases. But often it is just part and parcel of the biology of MCS.

Indeed, at least one study indicated an alarming rate of misdiagnosis: it found that 41 percent of patients with traumatic brain injury who were in chronic care and thought to be in the vegetative state were in fact in MCS.

If not for the astute observations of her Boston neurologist, Maggie, too, would have been misdiagnosed in perpetuity. But instead, she was expressing herself one blink at a time. For a young woman who had been thought permanently unconscious, this was truly a heroic accomplishment.

Maggie’s mother, Nancy, who gave me permission to tell her family’s story in my book, “Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness,” never thought this would be how her daughter’s life would turn out. She had other expectations for her beautiful daughter, who studied Spanish, played Frisbee and aspired to be a veterinarian.

Still, Nancy and Maggie made a life together after the stroke. And it was O.K. Nancy was grateful that Maggie had learned to communicate, while wishing she could do more than move that one eye. Still, she told me, it seemed like it was “enough to have a life, even a small life.” Maggie had things that many people didn’t have, she said — relationships, friends and family who loved her.

In the end, Nancy arrived at a sort of acceptance: “So, I don’t know. But I think a small life is O.K.”

We cannot know whether it was O.K. for Maggie. But the rudimentary communication channel established with her left eye was the start of a way to know what she might have thought. That we cannot yet know for sure did not mean that she had no preferences or wishes. Indeed the goal of those of us who do this work is to find out and try to provide these patients with the chance to again express their agency.

Maggie’s case — her “small life” — became very consequential when my colleagues at Weill Cornell Medicine published a paper last December in the journal Science Translational Medicine revealing what had happened within her brain following her injury. During the recovery of her ability to communicate, Maggie’s brain essentially rewired over a period of years.

Using magnetic resonance imaging, Daniel J. Thengone, a graduate student, and colleagues in the Laboratory of Cognitive Neuromodulation, led by Dr. Nicholas D. Schiff, were able to demonstrate a strengthening of structural and functional reconnections across the two hemispheres emanating from Broca’s area, the region in the frontal lobe responsible for speech. It showed, remarkably, that even a grievously injured brain could heal itself. It appeared to do so by a process bearing a strong resemblance to typical brain development. The ongoing reorganization of connections among neurons is a reprise of how the developing brain gets its start.

As notable as these findings were, they did not stem from a high tech or costly intervention. Instead, they were the byproduct of a mother’s love, speech therapy and a simple eye-tracking device that cost about $30. It was Freud’s “talking cure” in a modern guise, and no less significant for our understanding of resilience and the importance of interpersonal engagement.

Yet, access to care is strained for this population. Utilization reviewers, and insurance benefit companies will deny access to rehabilitation to many individuals when they leave the hospital because they are deemed not yet ready for rehabilitation. But when nearly half of those who could participate are misdiagnosed as vegetative when they are actually minimally conscious, this vulnerable group is further marginalized. Organizations like the American College of Rehabilitation Medicine have been calling for a comprehensive evaluation of patients after hospital discharge so that misdiagnosis can be prevented and those who might be helped can get the rehabilitation they need.

Even those lucky few who do get rehabilitation and are not shunted off to what is euphemistically called “custodial care” get too little time. Most rehab stays are six weeks or less. But if the brain recovers through a slow process similar to development, why do we provide — and only to those lucky enough to receive it — just a few hours of rehabilitation a week for six weeks? It would be akin to sending your third grader to school for half-days of classes for a month or two and telling them that they are now on their own. Now that we know that it takes years for the developing brain to learn and mature, a similar commitment to the recovering injured brain now seems indicated.

If we reconceived rehabilitation as education, no one would graduate after a six-week course of care. Instead, we would promote lifelong learning as a means to achieve a recovered life. If there is a legal obligation to educate the developing brain, should there not be a correlative responsibility to those whose brain are in a process of redevelopment and recovery?

These are radical propositions at a time of fiscal scarcity and serious debate about the fate of Obamacare and health care reform. Understood this way, one might see the surrounding politics as untenable and reasonably seek to spend resources elsewhere. But it would be a mistake to view our responsibilities so narrowly. What is at stake here is more than a simple insurance question or access to care. It is a more fundamental question of basic civil rights, leaving conscious individuals isolated and abandoned.

Tragically, the most fundamental rights have been have been denied patients in the minimally conscious state.

Take pain control, for example. When a minimally conscious patient is mistakenly diagnosed as vegetative and thus thought insensate, they may not receive analgesic pain management or anesthesia for medical procedures. If this occurs, they are incredibly vulnerable — unable to communicate, and thus unable to cry out in pain. This error of omission constitutes a disrespect for personhood that should be beyond the pale in any civilized society.

Of course, we can address this by better diagnostic assessments of a patient’s brain state, to differentiate the minimally conscious from the permanently unconscious patient. But we can do something more. We can work to restore the patients’ own voices, so that they can tell us whether they are in pain, and remind us that they are in the room. They remain members of the human community even though society has segregated them in chronic care.

I use the verb “segregated” deliberately, to invoke a time when separate but equal was the law. In the wake of legal advances like the Americans with Disabilities Act and the United Nations Convention on the Rights of the Disabled, which call for the integration of people with disabilities into civil society, how is the pervasive segregation of this population justified?

Part of the problem is that when these laws were written, the notion of reintegration was focused on physical mobility — the ramp on the side walk and the accessible workplace. It wasn’t about people whose means of integration required something more than a ramp. For minimally conscious patients, the ramp is the restoration of functional communication, which makes reintegration into its cognate — community — possible. When we restore voice to these patients we bring them back into the room and the conversation.

To accomplish this we must consider the basic relationship between these individuals and the state, and their civil rights as citizens. Legal protections have eluded this population precisely because they have been disenfranchised by their injury. They have fallen outside the scope of legal protections and been subject to abuse and neglect.

This is the civil rights issue most of us never thought about. But the long arc of justice is sometimes refracted through scientific discovery and medical advances.

I often speak to university students brought up in the era of L.G.B.T.Q. rights who can’t understand how my generation did not appreciate that people could love those they chose to love. They find it incomprehensible that this almost self-evident right had eluded earlier generations. I caution against smugness, suggesting that their own children may well ask them how they allowed society to ignore conscious individuals and deprive them of their rights.

We now can anticipate that there are large numbers of people like Maggie, who have the potential to communicate but are sequestered — indeed, segregated — in chronic care, isolated and abandoned by society. Some could be identified with proper screening and coaxed back through rehabilitation and emerging treatments. Now that we know this, we can’t look away.

Sadly, it is too late for Maggie, who died on Aug. 2, 2015. But it’s not for others who linger in the isolation of their own heads waiting for a chance to talk with you and exercise their newly found rights. No doubt, it will be an interesting conversation.

Full Article & Source:
Brain Injury and the Civil Right We Don’t Think About

Man Trapped Inside His Own Body For 12 Years Reveals HORRIFYING Abuse

Martin and his wife, Joanne

A man who was in a comatose state, but still fully aware, has come forward with absolutely horrifying revelations about the people who cared for him while he was in the vulnerable state.

At the age of 12, Martin Pistorius came down with an illness that left him in a vegetative state, unable to speak or move on his own. But after several years, he fully regained his consciousness, yet still had his motor skills impaired, and what happened to him is nothing short of sickening, unable to communicate that he was aware of his condition and surroundings.

Labeled as “Ghost Boy,” MailOnline reports that Pistorius didn’t even talk about the unspeakable atrocities in his memoirs due to their nature, but now he’s speaking up for the first time about the years of sexual and physical abuse he endured when his parents left him in the care of others at a home for the disabled. His treatment was so horrible, that Pistoius only rarely visits his native South Africa, where it all happened, because of the flashbacks he gets while there.

“I would dread it whenever my parents told me they were taking me to the care home,” Pistorius told MailOnaline. “Because I knew what would happen, and I had no way of letting them know the agonies I’d suffer.”

Those agonies, he said, included pulling his hair until his eyes watered, smashing a metal spoon into his teeth while they fed him, and screaming at him when his caretakers were angry, but that’s not the worst of it.

“I would be forced to drink scalding tea or fed until I was sick,” the web designer living in Essex said. “Then I’d be slapped, shouted at, made to feel worthless, then would come the sexual attacks from women who were supposed to be looking after me.”

“One woman would come into the room and straddle me and simulate sex with me and touch me inappropriately,” he recalled. “Nothing made me feel more powerless, I longed to run away.”

You may also be able to remember Pistoius from a story that ran a few weeks back, where he said he was forced to watch reruns of the children’s hit cartoon Barney the Dinosaur. Those alone were torture to the man in his state, he said.

Making matters worse, Pistorius was never given justice for what happened to him. When his father tried to take action, the workers at the care facility denied everything, and since nothing was caught on film, the allegations never stuck.

When Pistorius was just 12, he developed a sore throat that soon developed into much more. As time passed, his mind, then body, eventually became nothing but a shell in which his conscious was retained.

Doctors would at some point diagnose it as a degenerative nerve disorder, but there was nothing they could do. At the age of 16, the boy regained his consciousness, and for the next nine years, he would remain fully aware but unable to speak or move.

“You have no idea how frightening it was,” Pistorius said. “The stark reality that I was going to spend the rest of my life like that, totally alone,” he said. “I couldn’t make a sign or a sound to let anyone know I’d become aware again. I was invisible, a ghost boy.”

At the age of 25 he regained full consciousness and the ability to communicate, but that was only after years of horrific abuse.

“Each day I’d count down the minutes until it was over and I was 24 hours closer to going home,” he said.

He did have a happy ending to his story, however. Shortly after he was back to himself, he met his wife Joanne on the Internet. The two married in 2009 and have since bought a home together in Harlow.

His book has also become a best-seller, and he has gotten a degree in the IT field. He also has numerous Hollywood film producers trying to buy the rights to his story. So, needless to say, he’s doing just fine.

It’s sad that people would ever consider abusing someone so helpless in such a manner. What’s worse is that they’ll never be brought to justice over it.

Full Article & Source: 
Man Trapped Inside His Own Body For 12 Years Reveals HORRIFYING Abuse