SEATTLE — Pain was the first clue. Sharp, jagged streaks of it shooting up the sides of Rahima Jackson’s body.
Jackson’s pain grew worse at night. It hurt to lie down, so she learned to sleep standing up, her back leaned against a wall.
At first, Jackson, a 50-year-old former home health aide with an easy laugh, avoided going to the doctor. No insurance. Then the day came when she couldn’t take it anymore. A searing pain in her right breast had become too overwhelming to ignore, and Jackson pulled on her backpack and asked friends to take her to the emergency room.
Within days, Jackson was transferred to Harborview Medical Center and diagnosed with a metastasizing cancer consuming much of her spinal cord, breast tissue and bones throughout her body. She would need to start chemo right away, go on pain medication. But Jackson’s treatment plan might not mean much if she couldn’t solve a bigger problem.
She had nowhere to live.
That meant Jackson would soon become one of hundreds of people in extreme poverty tumbling into a housing void, where a threadbare cohort of shelters, hospitals, nurses and social workers try to find people safe, stable places to stay while they manage serious illness. Only a fraction of those who need it see that much support.
Here, a crisis level of homeless baby boomers are living with high rates of chronic disease that require intensive care alongside mental health and substance use issues. In 2020, 31% of homeless residents surveyed in King County said they struggled with a chronic health problem, while 44% reported drug or alcohol disorders, 47% said they suffered from post-traumatic stress and 54% said they dealt with a mental health condition like depression or schizophrenia, the highest rates in all four categories in four years.
Of the nearly 20,000 homeless and housing unstable patients seen by Public Health – Seattle & King County’s Healthcare for the Homeless Network in 2020, nearly two-thirds were treated for at least one chronic health condition. People suffering from these diseases are disproportionately Black and Native, from communities that have been deprived of generational wealth over centuries. Their illnesses are often caught late, at younger ages, in advanced and rarely seen stages.
Of the shelter that is available, little, if any, is appropriate for people dealing with serious health problems, and no local residential hospice programs specifically cater to people without housing.
As a result, people are dying on the street or in shelters poorly equipped to care for them, though what can be seen in the official tally of homeless deaths is an undercount. Through November of 2021, King County recorded 21 homeless deaths last year linked to a chronic illness, 14 of them outdoors or in vehicles. Many more people with chronic illness likely died by overdose, the largest single cause of homeless deaths last year.
This was the situation Jackson faced when she landed in the emergency room of St. Francis Hospital in Federal Way. To doctors, she named her worst fear, the one that had lingered in the back of her mind for months.
“My mom died of cancer,” she said. “I don’t want to die like my mom.”
So, quickly, Jackson’s diagnosis, her homelessness — all things that might make others look at her with pity — became part of a mission. To find housing. To start a movement as she received cancer treatment, one meant to spread awareness about cancer symptoms and to reduce stigma against sickness.
It would start with an album.
There was little time, and Jackson didn’t know it yet, but the next year and a half would cycle her through homelessness and health care systems that were never built to care for the growing number of people like her. She started to record songs in her hospital bed with her phone.
I’ve been scared and running, but not anymore, Jackson thought. I will finish what I start.
A long, winding path led Jackson here, to the Seattle area from Zanzibar, where Jackson’s mother died and where Jackson grew up. She moved to the U.S. in 1993, and although she was gay, she entered a relationship with a man to try for another shot at what she thought passed for normalcy.
Eventually she left the relationship and found new family in communities where LGBTQ+ people shunned elsewhere became cousins, aunties and sisters.
Despite the support she found after coming out, bad relationships and financial hardships made housing elusive.
After her diagnosis, Jackson bounced between the hospital and a short-term shelter for people in crisis. While Jackson’s doctors handled her treatment, a social worker named Michael Light worked to find Jackson a longer-term place to stay.
Light is part of a specialized three-person, part-time team at Harborview assigned to help homeless patients manage their stress and symptoms, navigate the medical and homelessness systems and, if needed, plan for the end of their lives. The palliative care model they follow focuses on improving quality of life for their patients, beyond the medical treatment prescribed to them by doctors.
This palliative care program, the first of its kind in the country, sees up to 80 patients a year, but that’s probably 1% of people who need this support, according to Tricia Madden, Harborview Medical Center’s director of downtown programs.
“We know we’re just scratching the tip of the iceberg,” Madden said. “We always have a waiting list. We always have people trying to refer more people than we can take care of.”
The palliative care team started out as a pilot in 2013, when health care workers saw hospitals overwhelmed with people suffering from chronic homelessness and advanced diseases. The diseases that they saw — cancer, kidney disease, chronic obstructive pulmonary disease — bloomed into rarely seen extremes because people were stranded from regular health care.
And, from most housing options. Local homeless shelters already struggle with an aging population, many with complex needs. Several also prohibit the pain medications needed to manage symptoms of diseases like cancer.
Skilled nursing and hospice facilities that might be appropriate for patients like Jackson aren’t much of an option either. They often reject homeless patients because their needs are so high and the rates that Medicaid pays are so low, doctors and social workers say.
Today, the palliative care team costs about $225,000 a year, funded by Public Health’s Healthcare for the Homeless program, Harborview Medical Center, private foundations and patient insurance. Madden and her colleagues would like to expand the program but don’t have the money to, she said.
At the end of February, Light landed Jackson a bed at Harborview’s Medical Respite program, a stopgap shelter next to the hospital doctors use so they don’t have to discharge patients directly to the street. Homeless patients can receive daily nursing care there for up to six weeks, and people living with serious illness can stay there for up to six months.
Finally, Jackson found a place she could breathe.
When Jackson’s time at medical respite ran out in August 2020, she had to move. One of the few places available was a poor fit: a shelter for women in recovery from substance use disorder that had prohibited marijuana and only allowed certain kinds of prescription pain medication.
Jackson didn’t discuss it with many people, but she sometimes used methamphetamine. Some of the people closest to Jackson didn’t even know about this, though it’s common for homeless people, especially women, to use meth to stay alert at night when they’re most vulnerable. Jackson’s doctors and care team were aware of her meth use, but it never caused enough concern to interfere with her treatment or housing plans. Instead, she was placed at the shelter because of space reasons.
At the shelter, it wasn’t Jackson’s meth use that raised alarms, if the shelter was even aware of it. Instead, she was reprimanded at the shelter for having the pain medication and marijuana she used to treat her cancer symptoms. She felt utterly isolated and angry, and intentionally overdosed on sleeping pills.
When Jackson awoke, she was back at Harborview.
She regretted overdosing, she told Light, but there was no way she’d be going back to that shelter.
After her overdose, Jackson moved to the Red Lion hotel in Renton, a building transformed into a shelter during the pandemic. Within her first few weeks, she accidentally locked herself out of her room, leaving her stranded from the pain medication she took every day at 9 a.m.
She asked the front desk for help, she said, and was told someone would come up shortly. For a long time, no one did.
The symptoms worsened. Pain that felt like a buzz saw shearing into her shins, her neck, behind her ear. Jackson said she confronted a supervisor who became angry with her and told her, “This is not a hospital. This is not a hotel. This is a shelter.”
Still, this shelter was better than the other places she had been in the past year.
Shortly after noon on a Friday, Jackson pressed “record” on her phone.
“What’s up, Seeaaaaaaaaaaaaaaaaaaaaa-TUHL?” she howled into the device. “What’s happening, what’s happening, what’s happe-NING?”
She paused before starting to speak again, her tone matter-of-fact.
OK. Let me introduce myself.
Jackson explained she was on the verge of creating something big. But her time to do it was running out.
I’m dying anyway. Just make my dream come true, please.
Softly, Jackson began to cry. Something metallic rattled, maybe the sides of a hospital bed. Four of her songs were ready to be listened to, she said.
It’s about my story, but the way I said it with love, with, you know, with everything.
At the Red Lion, Jackson made her way to the makeshift clinic in a ground-floor room with striped curtains framing a view of the parking lot where she spent most mornings, humming melodies in a camp chair with coffee, tilting her face to let her skin soak in the sun.
As Jackson settled into an exam chair, Dr. Russell Berg, a lanky Harborview doctor, scooted over to his patient’s side. The room, once used for paying guests, now hosted a vitals machine and a cramped desk, just big enough for a scanner, a label-maker and a naked bulb.
Light perched on a bedside table nearby while Berg asked Jackson if she had medical concerns.
Jackson skipped over the question. She wanted to talk about bigger things: how homeless people were dehumanized by society, and sometimes even by shelter staff, and the importance of treating people with kindness. Light mentioned to the doctor that Jackson was working on an album on these themes.
“Mr. Michael’s going to put it together,” Jackson told the doctor, gesturing to Light.
Jackson had trouble sleeping the night before, anxious about meeting her housing case manager in Pioneer Square on time to look at an apartment.
“I had a dream about this,” Jackson told Joshua Torregrossa as they waited for the bus. “I need this place.”
Jackson had never been like this about punctuality before. But her relationship with time had shifted since the diagnosis. Where time had once felt flexible, now Jackson felt the minutes passing, circling her as she moved through the world.
The building, named The Jackson for its intersection at Jackson Street, swept up from the sidewalk, 532 brand new units across two buildings, all metal and glass exteriors. It got a tax break from the city for setting aside affordable units, which in this case meant an apartment that cost either $1,481 or $1,581 a month. Jackson had won a rare federal voucher that could pay her rent.
It felt like fate.
Inside, assistant building manager Abby Herro settled them into the corner of a cavernous lounge, where she pulled out an iPad for a virtual tour.
“I picked out a couple options,” Herro said, her finger tapping the screen.
But first, Torregrossa explained that Jackson’s voucher had strict criteria and only allowed for bedrooms with an egress. Bedrooms without windows wouldn’t cut it.
“I’m so sorry,” Herro said. She only had windowless bedroom units left.
Jackson was quiet for a moment, her expression unreadable behind her mask. Herro asked if she’d still like to see the amenities and showed Jackson a jazz lounge in the building.
Jackson perked up at the mention of music. Softly, she began to sing, her voice carrying up to the high ceilings.
I love this place
Maybe I’m going to make to be my own
Renewals would be up in June or July, Herro said. They could check back in then.
“You have to pinch yourself,” Jackson joked to Torregrossa and Herro, pulling at the skin on her hand, her eyes wide. “I must stay alive, I must stay alive.”
Inside a Pioneer Square coffee shop over a table of patient notes and empty plastic coffee cups, Light and palliative care nurse Joe Hufford tried to make sense of where their clients were coming and going.
The two went through the details on their list quickly, shaking their heads at doctor-ordered treatment plans that would be impossible for their patients to adhere to.
One patient with kidney failure and masses of bacteria clustered around her organs from years of injecting heroin had been set up on a plan to get on methadone. This patient had never once showed up for a prescheduled appointment but was supposed to show up every day at an office in Sodo.
Her antibiotics were also expected to be delivered to a dispensing machine inside the emergency department at night. The next day, the medications were nowhere to be found.
Tracking down and working with the roughly 40 patients assigned to Hufford and Light at any given time who are bouncing among streets, shelters and the hospital is just a portion of their jobs. The rest of the time, the two work at Harborview or in shelters.
But even shelter or supportive housing programs are not set up to handle the medical or emotional needs of people who are dying. Staff are overwhelmed.
Joy Estill, an administrator at the St. Martin de Porres men’s shelter in Sodo, sometimes just closes the door to her office and cries.
She often sees late-stage kidney disease and severe mental illness from a lifetime on the streets. Shelter residents need help doing simple tasks — going to the bathroom, walking up stairs — and sometimes care that goes beyond the training of shelter staff, like administering morphine.
“We care what happens, but we don’t have the actual physical expertise for this,” Estill said. “Right now there’s no place for some of these people.”
Late July 2021
Jackson’s brain and body had begun to feel like they were talking past each other. It was hard to stay focused, and she struggled to choose between anti-depressants or the headaches she believed they caused.
She was hospitalized for a seizure, after which she had trouble controlling her bladder. Cancer pain wouldn’t leave her left side, and she began to walk with a cane.
And she still didn’t have housing.
A close friend was worried. After losing contact with Jackson for several months, Latasha Perkins had just found out Jackson had been hospitalized and had nowhere to live.
In late July, Perkins flew out to Seattle from Chicago and rented a hotel room near the airport. The security gate around the Red Lion shelter where Jackson had been living reminded her of a prison. She took Jackson to the hotel where she was staying, gave her CBD oil for her pain and tried to get her to eat steak and potatoes.
Dr. Leslie Enzian, Jackson’s primary care provider, asked Jackson when she might finally get into an apartment of her own.
“Any day from now,” Jackson said. “Any day from today. Any day.”
Dr. Enzian urged her patient to come up with a backup plan. When Perkins checked out of her hotel, Jackson would have to check out, too.
But Jackson’s doctors were optimistic that she’d show signs of responding to treatment. Enzian asked about Jackson’s appetite — did she feel interested in food?
As Jackson’s answer strayed to other concerns, Perkins leaned in close to her friend, her long blond braids falling onto her forearms folded in her lap. She needed to keep Jackson on track.
“But do you have an appetite?” Perkins asked Jackson, her tone gentle, but firm. “Yes or no?”
Finally, Torregrossa found Jackson a place.
It had been a year and a half since her diagnosis. The one-bedroom apartment in a new low-income building overlooked the neighborhood’s Vietnamese delis and shopping centers. On clear days, Jackson could see Mount Rainier.
The day she moved in, Jackson and Light walked over to the window and high-fived.
“Does it feel real?” Light asked.
“I have to pinch myself,” she said.
Before she left Harborview’s Medical Respite program, Jackson clasped a pile of going-away gifts from her friends — comfy clothes, a $50 scratch-off lottery ticket — as she waited for Light to pick her up and take her to a home that was finally hers. She spoke softly, her voice raspy and tired.
“We made it. We made it,” she murmured. “And it’s going to be so beautiful.”
Nine days after Jackson moved into her apartment, she died.
The news surprised everyone, her doctors included. Jackson had seemed to be doing well. The cancer hadn’t shown signs of progression at her last scan. She had been optimistic about the time she had left, the time she had to launch her album.
The Medical Examiner’s Office determined her death to be an accident, a toxic combination of meth, Jackson’s medications for her cancer symptoms, including prescribed fentanyl, and her anti-depressants. She may have been particularly vulnerable because of her advanced cancer and the length of time she had been using meth.
Now Light and Torregrossa were back at the apartment, slowly and quietly packing up the things they had helped Jackson move in with just two weeks earlier.
Light pulled down a set of pajamas hanging behind the bathroom door, lifted the sheets off Jackson’s mattress and folded them.
He remembered the last time he saw her, standing at that window, cradling a little wooden sign, a new decoration for her new apartment.
It read, “The future is bright.”
HOW TO FIND HELP
If you are experiencing suicidal thoughts or have concerns about someone else who may be, call the National Suicide Prevention Lifeline at 800-273-TALK (8255); you will be routed to a local crisis center where professionals can talk you through a risk assessment and provide resources in your community. More info: suicidepreventionlifeline.org. Or reach out to Crisis Text Line by texting HOME to 741741 for free, 24/7 crisis counseling. More info: crisistextline.org.