The Slap Not Heard Round The World
In a sunny hospital room in Jackson, Mississippi, Dora, my partner of twenty-three years, coughed violently in the flat hospital bed. Her pale face quickly turned red. She struggled. Unable to use her hands to sit up. Unable to press the call button. Unable to reach out for me. For months her breathing was labored as her speech and swallowing deteriorated. Her gasps for air overshadowed the light beeping of the tube feeding machine as it dispensed formula into her newly installed PEG tube. The electromyography tech, who flattened the bed to administer the EMG test, was confused.
“What’s going on?” he said, looking at Dora struggling for air and choking. His assistant watched in silence. I pressed the nurse’s call button, then lifted Dora into a sitting position. The EMG tech left the room. His assistant followed. Then they returned with several nurses behind them. They watched as I steadied Dora with one hand and gently rubbed her back with the other. She continued coughing, unable to clear her lungs.
“I can’t do nothing,” our assigned nurse said when she realized the phlegm was in the lungs and not in the mouth. “She ate too much pudding.”
“She hasn’t eaten anything today.” I continued rubbing Dora’s back, wondering if my blackness was a problem. Wondering if Dora’s whiteness was a problem. Wondering if our love was a problem. Eight medical staff in the room, and I was the only one tending to the patient. That was the problem.
“The speech therapist said she ate pudding.” The nurse’s voice was loud and unsympathetic.
“She hasn’t eaten anything today,” I repeated.
“Maybe you stepped away.” The blonde woman stared at me with accusing blue eyes.
“I’ve been by her side all day.” I had spent twenty-two hours at the hospital. For one hour in the morning and evening I would go home to check on the dogs. Dora was non-verbal, so without me there to translate, the medical staff didn’t try to communicate with her.
The nurse pulled up Dora’s chart on the computer. “Oh…” She sighed loudly, then said: “I guess she hasn’t had anything to eat today.”
Later that day, during a training on how to use the feeding tube, I learned that it is unsafe for the patient to lay flat while tube feeding because they may aspirate. I wonder why the medical team didn’t know this?
During the 2022 Academy Awards Ceremony, comedian Chris Rock told a joke that actor Will Smith found offensive. What happened next shocked the world. Smith had rushed up on stage, then slapped Rock. “Will Smith slapped the shit out of me,” Rock said. The media described the incident as the slap heard round the world. On a sunny Monday morning, Dora and I were slapped with her death sentence. “You have ALS,” the doctor said to our stunned faces. The doctor sent us home with no paperwork describing ALS, no instructions on how to manage the disease and a prescription for Riluzole. Unlike Smith’s blow to Rock, there was no audience, no stage and no media coverage. Radio silence.
After being diagnosed with ALS on November 18, 2019, Dora passed away seventy-six days later on February 2, 2020. As her sole caregiver, I watched her die daily. Our journey was a circle of disparities. No skilled nursing care. No ALS clinic. No equipment. With no money and no legal ties to one another, we pushed forward on our journey, nothing between us but prayers, tears and wishes. Our life was measured in labored breaths, tube feedings and slow calculated steps to the bathroom. Family chastised us, “Dora, Gail needs to go to the doctor.” We went to the doctor and the doctors said, “There’s nothing we can do. Take her home. Keep her as comfortable as you can.”
After Dora’s death, I joined a community-led advocacy group, I AM ALS. Here, I learned about ALS clinics, and what it would have meant to have those resources. Because we live in a desert of care (no ALS clinic within 90 miles), we didn’t get access to interdisciplinary care. Instead, we were offered a nursing home and hospice. Dora died because ALS is an underfunded disease, and for a same sex, interracial couple living below the poverty line, that means no hope. In the words of Chris Rock, “ALS slapped the shit out of Dora and me.”
For more resources on ALS and I AM ALS, check out: https://iamals.org/