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Will I Ever Write Again? “My brother is under the seat,” is a phase my daddy used to indicate he had his pistol in the car for protection. When Dora, my partner of 23 years, died of Amyotrophic lateral sclerosis (ALS), my brother was in the dresser drawer – top row, third to the right. In the early morning hours of February 2, 2020 Dora’s pale, lifeless body lay on the sofa. Peace washed over her face like a sunrise over paradise. I wondered what it felt like to be as peaceful as she looked. I made the necessary calls – her cousin answered on the third ring, my mother on the first, her brother on the second. Then there was silence. Just me and the white body in a small house in central Mississippi. “Can we do this together?” I asked earlier when Dora slipped into the active phase of death. She grunted “no” and made the labored effort to move her head from side to side. An ALS diagnosis seventy- six days earlier launched her body’s rapid decline. Her swallowing muscle paralyzed, her breathing labored, and she could no longer walk safely on her own. ALS is one hundred percent fatal. She accepted the diagnosis. I accepted it. Her family did not. With no marriage certificate, no money and no equipment, we faced the unrelenting disease together. ALS led us to that cold February morning. Dora was at peace. No more muscle cramps. No more struggling to communicate. No more overproduction of saliva. No more worries about how to pay bills. No more worries about race. Alone with the devastating result of ALS and fear of the future, the quiet pressed against my ears as the cold reality set in. In a state that formally abolished slavery in 2013, a dead white woman lay in my living room. My heart pounded. Her brother’s angry voice rang in my ear. The police were on their way. Would the police think I killed her? Would they kill me? Would that be a bad thing? I had two choices, go to my top drawer and use the pistol to end my life, or call Leslie. I called Leslie. Weeks later, on the phone with my former thesis adviser, Dr. Kendall Dunkelberg, I asked, “ Will I ever write again?” “Yes,” he said without missing a beat. I didn’t believe him. Day after day, I stared at a blank computer screen. I could barely write my name. How would I ever write an essay, a short story or a play? Each day, I walked the dog, worked in the yard, drank tea and confronted that damned blank screen and blinking cursor. “You have a gift for dialogue,” Dora said when I met her twenty-three years earlier. Would I ever work through the trauma ALS brought? No decent ALS care, no money, no equipment. Standing by helplessly watching the woman I love rapidly die. Frustration wrapped me like the honeysuckle vine wrapped Dora’s rose bushes in the front yard. Her brother’s Facebook rant appeared on my timeline a month after her death. He accused me of killing her, not taking her to the bathroom and forcing her to refuse medical treatment. How could he be so cruel? What had I done wrong? Then COVID hit. Everything shut down. I quarantined in the house we shared for twenty years. Her clothes still in the closet, her toothbrush on the bathroom sink, her purse hung on the bench near my writing spot. Too traumatized to write, I asked for help from Glynis Murray, a friend from ALS Patient and Caregivers Support Group. With her help, I joined I AM ALS, a patient-led organization, which advocates, educates and creates ALS awareness. I AM ALS provided love, support and the opportunity to tell my story to people directly impacted by ALS. It did not give me back my ability to write. Talking to family and friends helped, but, I still wasn’t able to write. Six months after Dora’s death, I realized I was mad as hell. How could her brother be so cruel? I wanted to whoop his ass like he stole something. I couldn’t write and it was his fault, or was it? “You have to find a way to forgive him,” Juan Reyes, Veteran living with ALS, said. I thought I had already forgiven him. I changed my phone number, mailing address and cleared her entre family from my social media pages. I hadn’t spoken to him since Dora’s funeral. “The ALS community needs you,” Shelly Hoover said in one of our “Good morning Gorgeous” texts. Shelly is a Veteran living with ALS. What could I do for the ALS community? Dora only lived seventy-six days after diagnosis. I couldn’t take care of myself. I lost interest in eating, personal hygiene and social interaction. All I could do was sit with the pain. ALS took Dora. Her family was mad at me. I did something wrong. Blank screen. Blinking cursor. One day I decided to sit with the truth. ALS took Dora’s body, not her spirit. Her family was mad at themselves for not participating in her care. I honored my vow to Dora. After accepting the truth, I wrote each day. My writing was horrible. It was unfocussed gibberish unfit to line my bunny cage, but I was writing. With the understanding that anger is a secondary emotion, I took a long look at what I feared. I was afraid of life without Dora. Afraid of more harassment from her family. Afraid I was inadequate as an ALS advocate and as a human being. Admitting my fears released the anger. With an open heart, I now receive the love and joy that surrounds me as I rebuild my writing practice one word at a time.
-Katrina Byrd
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