‘I Try to Forget’

Joel Ramirez was paralyzed from the waist down in 2009 when a 900-pound crate fell on him at a warehouse. In June 2014, following the passage of a new workers’ comp law in California, the home health aide he relied on was taken away.

Because Ramirez can’t sense his bodily functions, a nurse comes for two hours in the morning to help him with bowel care. A request from his doctor for additional care related to that treatment was used by the workers’ comp insurer to reassess the entirety of his home health plan.

Without his aide, Ramirez’s wife, Lupita, had to give up her job cleaning houses to care for him. Here, she rushes to the kitchen to stir his breakfast so it doesn’t burn.

Ramirez pushes on his stomach to help relieve bloating and pressure while using the restroom. This morning routine helps him avoid stomach pain and humiliating situations throughout the day.

After his home health aide was taken away, the indignities for Ramirez began almost immediately. He has, at times, been left sitting in his own urine and feces for hours, waiting for his wife or children to come home from work, school, or a trip to the pharmacy.

He has fallen several times trying to transfer from his wheelchair and has had to lie helplessly as his wife and daughter struggled to pick him up. Here, Ramirez showers with the help of his wife, Lupita.

The decision to take away the care he desperately needed, Ramirez said, made him “feel like less than nothing.”

After helping him shower, Lupita dresses her husband. She wipes his feet and puts socks on them.

A liquid breakfast awaits Ramirez, served with part of his daily pill regimen.

Lupita and Joel share a laugh during breakfast. “We were really good at dancing together,” he said during an interview. “Since my accident, I try to forget about music because I just get sad.”

In response to an order by the California Workers’ Compensation Appeals Board, the insurer reinstated Ramirez’s home health aide in late October. Here, Ramirez grimaces as he climbs back into his wheelchair with the help of aide Francisco Guardado. Ramirez’s spinal injury left him without feeling in his legs, but he continues to have severe back pain whenever he moves. “I was one of the lucky ones to end up with chronic pain, I guess,” he said.

Ramirez’s life is now structured around medical appointments. He boards a wheelchair-accessible medical transport to go to a doctor’s visit.

Ramirez winces while using a catheter to urinate as his home health aide Francisco Guardado stands by to assist during a visit to the doctor for an ultrasound.

Ramirez said he now feels vulnerable, knowing how easily his critical support could be taken away.

Ramirez receives an ultrasound on his thyroid.

Lying awake at night, he wonders what will happen when he gets older. “Those moments, they make you think it’s better to die before that happens,” he said. “I don’t want to live like that.”

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