“How do you define disability?” I asked.
“Having to make arrangements to be able to function in the way that society calls ‘normal’,” Erna answered.
In April of 2016, Erna had back surgery. She spent about two months in recovery at the hospital; the surgery had alleviated most of the pain that had driven her to surgery, but doctors informed her that she would never again use her legs to the extent she had before. She had managed with a walker for roughly four months, until September found Erna weak and unable to move herself at all.
As her daughter returned home from work one evening, Erna, still lying on the sofa where she’d been left that morning, implored her daughter to bring her to the emergency room. When tests revealed a kidney stone blocking her right kidney, an emergency surgery was arranged for six the following morning; Erna didn’t make it through the night.
“I went into congestive heart failure [and] kidney failure; sepsis had set in and was shutting my organs down,” she recollected. “So, I went pretty much into a coma.” A week later, the family was advised to begin making arrangements for Erna, who would likely not be waking up.
“About three days later, I woke up,” recalled Erna, “completely paralyzed from the neck down; I could not even move a finger.”
After a myriad of doctors and tests, Erna learned she had been suffering the effects of critical illness polyneuropathy. It’s a rare disease that affects the peripheral nerves, occurring as a complication of severe trauma or infection; the only treatment is continual therapy, “which you cannot get here (affordably),” Erna remarked.
The solution was to transfer her into a nursing facility in October of 2016. There, she received intermittent therapy for roughly four months out of her thirteen month stay, though she needed it on a much more regular basis. Supposed to be getting up for three two-hour intervals each day, she instead would be sat in a wheelchair each day for a week, then given therapy each day for the next. After these two weeks, she would remain bedbound for a two- to three-month waiting period. This routine was apparently attributed to the “hassle” of proper care. She was reminded each time she asked about being helped up that the required daily note-taking for her insurance made giving her the necessary therapy too much of a nuisance. If it was not the former, then her insurance simply “wouldn’t cover it this time.” To finally get herself into a wheelchair daily necessitated calling the state’s Department of Community Health. One day after having made the call, Erna was left in her wheelchair for six hours; her daughter came to find her crying in pain and soaked in her own urine.
Erna’s account of her experience at her nursing home portrays the acute neglect of residents that is, regrettably, all too common.