Caridad’s Journey, Part 1: Reconnecting
The dissolution of Caridad’s life began just as things were beginning to come together. After struggling in foster care and to find stability in New York City, she moved to Florida, then Louisiana, before settling in Seattle. With her 3-year-old daughter in tow, Caridad pursued a college degree, rebuilt her relationship with the man she’d come to marry, and obtained the teaching job of her dreams. For the first time in her life she began to thrive. But in late 2015, after about a year in Seattle, and just as Caridad was about to turn 30, the life she’d fought so hard to create began to crumble—slowly at first.
In the beginning, as the leaves were starting to turn, she noticed muscle cramps in her arms and legs. A few months later, working at her computer for long stretches and playing video games became difficult—her hands exhausted. By Christmas, her hands began to tighten and flatten. She usually crocheted blankets to donate during the holidays. That holiday, her hands were cramping so much she couldn’t complete the tradition. Although she worried privately, she didn’t seek out a doctor, assuming her cramps were the result of carpal tunnel. She tried to give her hands a break until January, but her condition continued to deteriorate. Even though the symptoms were making life increasingly difficult, Caridad soldiered on, continuing her college classes, working long hours at her job, and parenting her daughter, Tate. It was a lot to handle, but Caridad—tenacious, hardworking—was the kind of person who handled things. She had no choice. For her entire life, the cards had been stacked against her.
She’s a queer person of color who has experienced the stressors of physical and emotional abuse, rejection, neglect, generational poverty, biphobia, and racism. So, when her symptoms began to show, she worried privately about how they would impede her progress to meet her goals. Maybe she couldn’t keep up with her peers at school; maybe she wouldn’t succeed in providing Tate the life she wanted or being a supportive spouse to Bryce. Regardless of her worries she pressed on. She’d always known her resilience to be a source of strength.
By the time I visited her in Seattle a little over a year later, she had been diagnosed with ALS, and the symptoms were progressing to a devastating degree. I was in Seattle on tour for No House to Call My Home: Love, Family and Other Transgressions, my book about my time working in the early 2000s with LGBTQ youth in a foster care group home in New York City. I wrote about Caridad and her housemates, chronicling the trauma and resiliency experienced by this subset of youth overrepresented in the system and in homeless youth counts. Caridad and I kept in touch after I left the position, checking in with each other online occasionally over the years.
A Commanding Presence
While writing my book, Caridad was one character I wanted to expand upon, to share with readers, but because she was absent most of my time there our interactions were brief. Regardless, she was someone to whom I was instantly drawn. She was engaging, curious, and clearly intelligent, a stalwart advocate for other youth in the program. In the group home, she had a commanding presence. She walked with a forceful gait and engaged both staff and youth with confidence. And although her personality could loom large, becoming bombastic and sometimes overwhelming when triggered, her baseline was always kind and thoughtful. She was among the most enthusiastic residents to participate in the writing groups I held; she intuitively seemed to understand that capturing her own story might, in part, lift her out of the chaos and pain. Indeed, part of my hesitation in centering her story in my book was due to my belief that one day she could look back and write her own.
I took a cab from my hotel in downtown Seattle to Caridad’s apartment just north of the city. There, I was greeted by Bryce, Caridad’s husband, a gentle, lumbering giant of a man. He escorted me along the wooden walkways outside their suburban apartment building, a labyrinth of stairs and planks and completely inaccessible to anyone with the limited mobility Caridad now experienced. We entered their garden-level apartment, moving past an entryway cluttered with toys and filled boxes and bags; the smell of food cooking filled the room. Near the back wall, I saw Caridad slouched in a chair at the end of the kitchen table.
I was not prepared for the ravaging effects already evident on her body. Her face looked sallow, her limbs, frail but rigid, and her skin sagged and gathered as if her body was much older. Seeing her so depleted shook me, but I tried to hide my surprise and offered up a smile as I walked across the room, arms extended, to hug her.
For most of our visit I listened as Caridad filled me in on her years following foster care and how she ended up in Seattle. After “aging out” of the system her life was filled with much of the same chaos, abuse, and instability that she’d grown up with and had originally brought her into the system. With nowhere else to go, she moved in with her boyfriend. His family was hostile toward Caridad and the relationship proved toxic, so she spent most of her time online. She met Bryce, who lived in Louisiana, on an online messaging board and started to fall for him.
Eventually Caridad moved on to a rapid rehousing program for youth who recently aged out of foster care. She told me the program manager there propositioned her for sex and attempted to steal from her. Not long into her stay in the apartment program she found out she was pregnant: a surprise to her and the father. “Total accident but I was happy about it,” Caridad said. The program, like most youth-specific housing programs across the country, wouldn’t house a parenting youth. She was sent instead to the Prevention Assistance and Temporary Housing intake center.
“Because I was pregnant and had diabetes and was a high-risk pregnancy they bumped me to the top of the list as a medical necessity.” She was sent to live in a shelter in Queens out by the airport. The place was chaotic, in disarray, and infested with cockroaches. Members of the maintenance team often sexually harassed the young mothers, who stayed silent about it, fearing their housing would be put at risk if they spoke up. Caridad stayed there after Tate was born, working my old job at the group home where I met her just a few years before when she was a resident. She offered to get her baby’s father a job there too but he always found an excuse to remain unemployed. She finally became fed up with what she saw as his laziness and broke up with him.
At first Caridad shared custody of Tate with the father, but one day she came to pick up her daughter and discovered her crying and shivering. “She had old yeasty milk in her neck creases, she had on the same diaper. I had to call CPS on him so I could get full custody of the baby.”
A Struggling Single Mom
She struggled as a single mother, working double shifts with scarce outside support. When she lost her job, she did what she had to do to survive. “I found a guy online, made him fall in love with me and moved in with him.” Unfortunately, he lived in Florida. She packed up Tate and left New York City without looking back. Secretly she continued to talk with Bryce every night online.
Caridad left the man when he hit her in front of Tate. Desperate to find any type of shelter for herself and her child, Caridad tried to rent a room online but when the property owner discovered she wasn’t white he threatened her, claiming she’d bring drugs and filth into his home. She had no money and no place to go. Caridad decided to send Tate to New York to live with an ex-coworker while she sorted out her options.
All this time Bryce followed Caridad’s Facebook updates and saw everything she was going through. He offered for Caridad and Tate to live with him, even though they’d only met in person once on a weekend visit.
They struggled at first, but for the most part they worked through the growing pains of living together. But after a year of cohabitating, Bryce’s family convinced him that Caridad wasn’t worth all the struggle. He broke up with her and asked them to leave. “I was heartbroken,” Caridad said. “I knew I had to buck up and do what I do to survive. I gave up a bunch of shit and sold everything I could and made about a grand and got a ticket to Seattle and packed a suitcase and brought the baby with me.” She did some networking online and found someone on couchsurfing.com. She stayed there for about a month. Caridad said she chose Seattle because she felt the city valued education just as much as she did. She found a daycare job and found a rich man who helped find her an apartment. “I paid the rent. I got a job and was in school.” She thrived in college, and was even honored at some school function highlighting students overcoming great adversity. After a year, Bryce and Caridad started talking again, and he moved to Seattle to be with her. Eventually they married, and he legally adopted Tate. “I’m a sucker. He was the only man I truly loved and didn’t want to use him for anything. It was really that I wanted him.”
I watched Caridad as she recounted her story. She had difficulty grasping the fork in front of her. Bryce intuitively leaned in and spoon-fed Caridad as we talked. The more Caridad spoke the more her speech became strained and slurred, her breathing, labored; she’d tell me later about her severe muscle cramps and how her mobility was limited to the confines of their apartment.
The conversation circled back to her current condition and how frustrating she found it when posting about her struggles online. Her friends on Facebook seemed to be oblivious about the severity of her ALS diagnosis and offered platitudes like “get better soon.”
“They don’t get it,” she said. “There’s no getting better. I’m dying.”
Ryan Berg is an author, activist, and longtime youth worker. This is the first in a series about a young woman whose name has been changed to protect her privacy. The next blog post in the series will explain the complexities of ALS along with Adverse Childhood Experiences, also known as ACEs. Read more about the series and its author here.