This story was co-published with the Chicago Reader.
Gary Sams could hardly breathe. He had begun experiencing early symptoms of rapidly progressing amyotrophic lateral sclerosis (ALS), a progressive and fatal neurological disease, in April 2024. By June 2025, ALS had robbed him of his ability to walk or use his hands. Now it was suffocating him.
Sams desperately urged staff at Graham Correctional Center, a medium-security men’s prison in southwestern Illinois, for medical support to help his breathing. He hoped to be transferred to another Illinois Department of Corrections (IDOC) facility with a better capacity for care. Like the repeated requests he’d previously made for medical attention and disability aid, Sams felt stonewalled.
After a month, his breathing problems had developed into a severe case of pneumonia, and Sams was sent to a nearby hospital. He fell unconscious, and when he woke up several days later, he realized just how close he had come to dying behind bars. “When I came to, I was intubated,” he said. “They gave me a choice—get a trach[eostomy] or take out the tube and maybe live a couple days.”
Sams’s hospitalization came after over a year-long battle to receive medical attention in IDOC, which has long been scrutinized for providing inadequate healthcare. Stories of medical neglect and malpractice fill the pages of hundreds of lawsuits, including a high-profile class-action case that ended with a 2019 consent decree, the conditions of which have still not been satisfied seven years out.
In 2022, Illinois became one of the last states to adopt a medical release law—the Joe Coleman Act—which allows certain incarcerated people who are terminally ill or medically incapacitated to be medically released. After spending six months in a hospital, unable to return to Graham as the institution could not support his ventilator needs, Sams became one of only 28 individuals to receive medical release in 2025. It was a shallow win—his condition had progressed to full-body paralysis by the time he was released.
Sams now lives at his home in McKinley Park under the care of his daughters, Diana, 24, and Cynthia, 22. He lies in a hospital bed, his body propped up on a mass of pillows and blankets, while a ventilator sustains a steady breath through the tracheostomy tube in his neck.
He speaks in slow, taxing bursts of a few words at a time, describing the pains of seeking medical attention while at Graham.
“They gave me basic treatment because of my age,” Sams said. After his symptoms appeared in April of 2024, they progressed rapidly. By August, he reported his right hand was almost paralyzed. Though he had made repeated trips to Nurse Sick Call, for which he received Tylenol and was recommended to physical therapy, medical records show he was not able to see a facility physician until October.
Throughout this period, Sams and his family made repeated attempts to set up an appointment with a neurologist, reaching out to IDOC officials and other state agencies, which they said were met with “little or no response.”
“We had to really shake them up in order to get something going,” said Sams’s daughter Cynthia, who called Springfield several times to advocate for her father.
As his condition worsened, Sams’s body became a prison within a prison, and a dangerous one at that. He fell repeatedly, eventually being placed in a wheelchair too small for his 6-foot-2 frame.
After seeing a neurologist and being diagnosed with ALS in April of 2025, Sams was placed in Graham’s infirmary. The move should have protected him against continued mobility-related injuries while under the continuous watch of healthcare staff.
“People with ALS, most of them at some point become completely dependent on caregiver support,” said Dr. John Coleman, an ALS specialist at Northwestern’s Les Turner ALS Center. Little can be done to slow the progression of the disease—which attacks motor neurons, eventually leading to full-body paralysis and, in most cases, death by respiratory failure—and so treatment is critical to provide nutritional, respiratory, mobility, and mental health support.
Yet even in the infirmary, Sams continued to fall.
According to a May 2025 entry in his personal journal, Sams said he fell and hit his head while trying to get into his chair. “When I came to, I was convulsing,” he said. He paused as he described the event, choked up on the painful memory. A tear streaked down his cheek. “They just picked me up and put me in the bed.”
Sams says he did not receive care for his injury while he continued to suffer headaches for two and a half weeks. Visiting him shortly after the incident, his daughters were disturbed to see a large bruise over their father’s head and eye and said he seemed disoriented, like he was “going in and out.”
On another occasion, Sams says he fell in the bathroom and was left there for over an hour. “He was just laying there on the floor unwiped,” his younger daughter reported, “waiting for someone to come help him. Anything could have happened during that time, which was just frustrating and scary.”
According to civil rights attorney Amanda Antholt, neglect like this is common due to insufficient resources in Illinois prisons. “For people with a high level of needs where they need assistance with their daily activities like feeding, toileting, and bathing, the prison system is a real problem because there’s a lack of all types of medical and support staff.”
Antholt works at Equip for Equality, a nonprofit organization that advocates for people with disabilities. Early last year, the organization filed a lawsuit against IDOC after a group of 21 individuals with disabilities had been left in the deteriorating Stateville Correctional Center while the rest of the prison population was transferred. The suit alleges these individuals were placed in solitary confinement–like conditions where their medical needs were neglected by staff to the detriment of their physical and mental health.
Even when procedures are followed, a medical system rooted in the rigid, black-and-white culture of corrections can make seeking help challenging for many. “The system tends to respond to inmate requests in a defensive way, or in a way that tends to assume everybody’s trying to game the system,” Antholt said. “Just the fact that your request for help is called a ‘grievance,’ and that is how it’s approached—you are complaining.”
Sams submitted two grievances asking for greater medical attention, both of which were denied. In one of these, submitted in January of 2025 before his ALS diagnosis, Sams wrote that it had been three months since he had last seen the facility physician. He did not receive a response for ten months afterward, which simply stated, “This office finds the issue was appropriately addressed by the facility Administration.”
Across IDOC, lapses in healthcare mean that support ultimately rests on the labor of other incarcerated individuals. Some of this comes from “porters,” who earn about $1 per day for performing tasks such as bringing meal trays and cleaning units. For people like Sams with severe mobility limitations, help often comes from cellmates or other friends working in no official capacity.
James Degorski, who goes by JD, is incarcerated at Graham and worked there as a janitor during Sams’s incarceration. He regularly helped Sams as he lost bodily function, from writing and making calls to moving him in and out of his chair, cleaning, and feeding him.
JD said he had to step in for the medical staff who were supposed to be helping Sams, calling them “glorified security guards.”
Another incarcerated individual who frequently helped, James McQueen, said staff acted like Sams was “faking it.” Both he and Degorski reported that Graham’s Health Care Unit Administrator had forbidden non-staff from helping Sams with even basic tasks.
“There are privacy implications, where somebody could be violated in different ways where they’re vulnerable to abuse,” Antholt said of relying on incarcerated individuals for caretaking. “But the truth of the matter is there’s no one else to do those things.”
While IDOC could not comment on the specifics of Sams’s case due to medical privacy laws, in an emailed response to the Chicago Reporter, an IDOC spokesperson noted that “there is no standard policy that prohibits individuals assisting with daily activities for another individual in custody.”
Sams believes that without friends like Degorski and McQueen, he may have suffered even more serious injury. “If it wasn’t for other inmates helping me, I don’t know what would have happened.”
On an institutional level, Antholt says that prisons are often ill-equipped to meet patients’ unique needs. “[In the community] there’s a whole range of levels of care, assisted living, memory care, nursing, skilled nursing,” she said. “But in prisons, there’s basically general population and infirmary.”
The absence of specialized care weighs especially heavily on those with conditions like Sams’s. “One of the hardest and biggest challenges with ALS is that it is a disease that affects your strength and your mobility and your body, but it doesn’t usually affect your mind,” said Coleman of Northwestern’s Les Turner ALS Center. “You’re aware that your body is getting weaker, you’re aware that what I could do today I won’t be able to do tomorrow.”
Throughout his journal, Sams expresses a worsening mental state as he struggles to understand his condition. He writes of “hopelessness and embarrassment” and feelings of belittlement from prison staff. In a late May journal entry, almost two months after his diagnosis, Sams writes, “no nurses, no doctors have any answers to why or ALS info except DEATH!”
The humiliation of losing bodily autonomy was a constant stressor. A few days before his hospitalization, Sams fell in the shower. As he often did, JD stepped in to help, hoisting Sams back to his bed “dripping shit all the way and on the bedframe, sheets and blanket,” according to Sams’s journal.
“When he fell over and defecated all over his leg and everything, he was still totally humble,” JD said. “We’re trying to help him up, and he’s just trying to help himself get back up.” It was the last image JD had of his friend at Graham.
Antholt noted that the prison system is often ill-equipped to respond to changing needs over time when someone develops a disability while incarcerated. “It’s hard when there’s a record of not needing care and you have to get past all the bureaucracy, all the wait times, all of that to be really assessed in a meaningful way for what services you need.”
This raises major concerns for an aging prison population that will naturally exacerbate the need for end-of-life care. Due to factors like truth-in-sentencing laws that increase time served in prison, incarcerated populations in Illinois are growing older even as the overall number of incarcerated people is decreasing.
By 2000, only about 2,400 people in Illinois prisons were 50 or older, about 5 percent of the overall prison population, according to an analysis from the Illinois Prison Project, a nonprofit legal organization that fights to end mass incarceration and excessive sentencing in Illinois. By the end of 2025, this number ballooned to over 6,800 people, 23 percent of the prison population.
Some effort has been made to address this growing need for hospice care. Under the 2025 Eddie Thomas Act, IDOC must publish annual reports detailing its hospice programs. The first of these, however, will not be released until the end of this year.
The Joe Coleman Act was intended to reduce the pressures of an aging population on the IDOC’s healthcare system by releasing individuals who are terminally ill, likely to die within 18 months, or medically incapacitated and unable to conduct the activities of daily living.
And yet in the four years since it was enacted, rates of medical release have remained low. An Injustice Watch investigation from 2023 found that two-thirds of those qualified for medical release were denied, and over the three years since then this number has risen to roughly 75 percent.
Sams saw firsthand how difficult the process is. His first request for medical release, made from a hospital bed on a ventilator, was denied.
The fact that Sams’s second request was granted, even as he progressed to full-body paralysis, made him “one of the very lucky few” in Antholt’s eyes.
“We’ve had multiple cases that are absolutely eligible and fit the criteria for medical release and are denied and denied again,” she said. A Chicago Reporter investigation from September found that, as of reporting, 26 people had died in prison after having been denied medical release.
Sams’s lawyer, Maria Burnett, noted that his case was far from the worst she has seen. From his difficulty in accessing healthcare to seeking disability aid and medical release, Burnett said “very sadly, there’s nothing remarkable about Gary’s struggle.”
Burnett works with the Illinois Prison Project, which has represented over half of those who have successfully petitioned for medical release. During her tenure, Burnett has handled cases in which medical neglect has had permanent consequences for conditions that would have been treatable if they had been assessed earlier. “We hear all the time from people who’ve ended up with extremely traumatic and often dire medical realities due to that neglect.”
Antholt says there’s a long list of reforms that could improve the circumstances of those with severe medical needs in IDOC, such as providing different levels of care, offering opportunities for training and employment of incarcerated individuals in healthcare roles, and separating the medical system from the grievance process.
Even then, she notes there are substantial limitations in reshaping policies and procedures in prisons to support those who need an individualized care approach to meet their medical or disability needs.
“As with everything with corrections,” Antholt said, “either you need to put a lot more resources into it, or you need to get a lot of those people out of it.”