Our ALS Journey By Katrina Byrd

Together we navigated the haze of useless words hurled at us by people afraid to come face to face with the disease.

In a hospital room on a cold December night, Dora, my partner of twenty-three years, produced several unproductive coughs. I grabbed the breathing machine mask from the table. The nurse, Michele, stood with her back to us admiring the flower arrangement I ordered from Drake’s Designs. With the padded mask in hand, I lightly tapped Dora’s back to loosen the phlegm. 

Tap. Tap.

“Harder,” Dora said in her ALS speech.

“This is how the respiratory therapist did it earlier,” I said. 

Tap Tap.

Dora took the mask then demonstrated how it was to be done. “Harder!” she said.

CLAP! CLAP! 

Horrified, I said, “I ain’t gonna have these folks arresting me for beatin’ up on a White woman.” Michele laughed. Dora laughed, then she started choking on her own saliva. I learned to tap harder. 

Diagnosed with Amyotrophic Lateral Sclerosis(ALS) November 18, 2019, Dora and I managed the 100% fatal disease with no money, no family support and no clear path on navigating the medical system. With no equipment, no legal ties to each other and with me as her only caregiver, we moved into long days of uncertainty. 

Seven o’clock in the morning. I wake to the ALS reality. I have to pee. Dora has to pee. The dogs have to pee. Who goes first? 

“Good morning, beautiful!” I say entering the living room where she slept. After her feeding tube installation, and with her bulbar systems, lying flat was uncomfortable.

“Hmmmph,” she grunts at my use of the word “beautiful,” then motions for me to plug in the Christmas lights on the mantel. After turning on the lights, I help her into a sitting position. As I bend forward, the dogs watch intently from their cages.

“I hope we aren’t hurting your back,” she says, wrapping her weakening arms around my neck.

“You ready?” I say.

“Yes.” 

I lift her 109 pound body from the sofa. Once in a standing position, I support her as she shuffles to the bathroom, a trek that can take up to thirty minutes.

Each day was different, devastating, sacred. Doctor’s appointments, home health visits and trips outside on unsteady legs and faith. We’d been given a death sentence. Each day I died right alongside her. She saw it. I saw it. God saw it. Together we navigated the haze of useless words hurled at us by people afraid to come face to face with the disease.  “There’s nothing we can do.” “Take her home and keep her comfortable.” “She needs to be in a nursing home.”  “Dora Gail needs to go to the doctor.” “She’s going to fall.” “She’s going to die!” Sweet moments of planting pansies, picking daffodils, petting the animals. Horrific moments of GI discomfort, her screams as staff lay her flat for a CT Scan of her abdomen, and choking while repeated texts from her sister chime in. “Leave me alone. I’m choking,” Dora texts back. She collapses in my arms. I hold her there as her body recovers from the violent episode. 

On the morning of Friday, January 31st,  Dora couldn’t use her legs at all. I called her brother on my way to Walgreens to buy a bedside commode. When  I returned home, he called to inform me that he arranged for cousins to come on Sunday to help us get to the airport. Despite the doctor’s no fly order, Dora’s brother made her an appointment at Mayo Clinic in Rochester, MN. We were scheduled to fly out of Jackson, MS on February 2nd. 

 “Dora Gail, you’re gonna need round the clock care,” he said on speaker phone. “Katrina is (agitated sigh) doin’ the best she can. I guess.” He ended the call by instructing me to pack clothes for myself, pack clothes for Dora and I was to give her a bath.

“Can’t sit up,” Dora said the next morning after I transferred her from the bedside commode to the sofa. She wasn’t able to use her trunk muscles.

“Are you scared?” I asked. 

“Yes.”

“I’m scared too, baby.” I propped her up on the sofa as best I could.

That evening, Dora slipped into the active phase of death. The house was quiet. The cat was outside and both dogs were at the vet. Nothing between us but her labored breath and twenty-three years of love, living and laughter. I held her hand until she sent me to bed. At her request, I shifted her to the other end of the sofa- - laborious for both of us.  She faced a picture of her son, Jonathon, who was shot and killed when he was twelve years old.

“I love you,” I said before going to bed.

“I love you too,” she said.

 At 3:00 am, I stood over her lifeless body. 

“You can’t keep the lights on,” her brother said three days later standing in my home a few feet from where Dora died. Once he finished letting me know that I was poor and inept as a caregiver, he took the $190 left of the $250 cash he’d given her a few months earlier. “Dora Gail said I could have her ashes,” he said, then awaited my reaction. 

“Okay,” I said.

The next day, I sat at the back of Dora’s funeral service at her family’s request. 

In Walden Pond, Henry David Thoreau writes, “I went to the woods because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived.”(69)

Like Thoreau I went into solitude, but not by choice. A few weeks after Dora’s death, the mayor of Jackson issued a shelter in place order due to COVID19. I sheltered in place in the home we shared for 20 years. Her purse hung on the chair in the den. Her toothbrush on the sink. Her flowers bloomed in the yard. I was in solitude because of a pandemic. I wanted to live deliberately and I wanted to find a way to advocate for treatments and cures for this 100% fatal disease.

Four weeks later, I decided to become an advocate for ALS cures and treatments.  I showed up at I AM ALS wh a broken heart, no idea of what an ALS advocate could do and I showed up with the devastating story of how Dora had ALS and I was her only caregiver. 

Four and a half years later, I’ve designed a unique advocacy path for myself. As an ALS advocate and writer,  I realize my story is the most powerful way to raise my voice, show compassion to others, be a resource and to empower other ALS advocates. It is my pleasure to share my story, other’s stories, my caregiving journey, my grief journey and resources for navigating an ALS diagnosis. 

Katrina Byrd, writer and playwright living in Jackson, MS, received her MFA in Creative Writing from Mississippi University for Women. An emerging writer published in several magazines, Byrd is a six time Arts Commussion grantvrecipient. Diagnosed with amyotrophic lateral sclerosis(ALS) - 100% fatal- November 18, 2019, Dora - Katrina Byrd’s partner of 23 years - died on February 2, 2020, 76 days after diagnosis. A few weeks after Dora’s death, Byrd’s advocacy work began. For the past four years, Byrd has become fluent in telling hard and uncomfortable stories. With her business, Daily Flounce, Byrd offers virtual writing courses and coaching services for writers, creatives and advocates. With her Boa Flouncer alter ego, she inspires, motivates and spreads joy.