Writer becomes advocate fighting for ALS cure after 76 days of caring for loved one

By Katrina Byrd | Originally published by Mississippi Today

Mississippi Today Ideas is a platform for thoughtful Mississippians to share their ideas about our state’s past, present and future. Opinions expressed in guest essays are the author’s own and do not necessarily represent those of Mississippi Today. You can read more about the section here.. 

On Aug. 9, 2018, I stood in the graduation rehearsal line with fellow, future graduates, who would walk across the stage the next day. 

Visually impaired since birth, I have never had a driver’s license. Dora Robertson, my partner of 23 years, drove me to Painter Hall for the graduation rehearsal. Three years earlier, she encouraged me to apply to the master’s in creative writing program at the Mississippi University for Women. After giving a long list of reasons why I couldn’t –  all were connected to my disability and poverty – Dora said, “I will help you.”

I applied. I was accepted. This warm August evening in 2018 was a celebration of our hard work.

The hallway erupted in excitement as the line disassembled. Some people talked with each other. Some talked on their cell phones. Some stood amazed that they were graduating. I stepped from the noisy line. I dialed Dora’s cell, then stepped from Painter Hall. The door swung closed behind me, muffling the noise inside. Clouds lay haphazardly in a clear darkening sky. A perfect day.

“Hello,” Dora said. Immediately, I noticed her speech was different. It was slower. If I didn’t know better, I would’ve sworn she was drunk. 

“Graduation rehearsal is over,” I said.

“Be right there,” she said.

As I waited for her, I wondered what was going on with her voice. I knew she wasn’t drunk. At most, she drank one beer a night. She had probably been drunk twice in her 70 years. I shrugged it off as temporary. It wasn’t. Sixteen months later, we received the diagnosis.  

“Amyotrophic lateral sclerosis, ALS,” an older doctor with a tired face and slumped shoulders told us. “Life expectancy is two to five years.”

There was no medicine to cure it or slow it down. He prescribed Riluzole, which supposedly might give her a couple extra months. There was nothing else she could try. No way she could contribute to research.

To be eligible for clinical trials, a person must have first symptoms beginning in two years or less. Dora’s first symptoms started two and a half years earlier. Therefore, she wasn’t eligible for a clinical trial. The unspoken message was just go home and die.

We let the words settle. Two to Five years. In an instant, our lives were changed forever. Our holiday season schedule was forever disrupted. No preparing for Thanksgiving and Christmas. No trip to the cemetery on Jonathon’s – Dora’s son who was shot at 12 years old – birthday. No Advent Service. No Christmas parties.

Dora died on Feb. 2, 2020, 76 days after diagnosis. On March 3, 2020, I joined “I AM ALS,” a patient-led movement to end ALS, where I started advocating for treatments and cures for all people living with ALS.

In 2020 I advocated for the Accelerating Access to Critical Therapies for ALS Act or ACT for ALS, introduced in the House of Representatives by Rep. Jeff Fortenberry, a Nebraska Republican, and Mike Quiggley, an Illinois Democrat.

A companion bill was introduced in the Senate by Chris Coons, a Delaware Democrat, and Lisa Murkowski, an Alaska Republican, The bipartisan bill was signed into law by President Joe Biden in December of 2021. 

The law directs $500 million over five years toward research, accelerates drug development and expands access to investigative treatments for people living with ALS who are not eligible for clinical trials.

People like Dora.

The ACT for ALS is scheduled to expire on Sept. 30. The bill was reintroduced for reauthorization in the House of Representatives by Reps. Quiggley and Ken Calvert , a California Republican. They were joined in the Senate by Sens. Murkowski and Coons.

With no legal ties to one another, Dora and I navigated ALS one day at a time with me as her only caregiver. For 76 days, I took care of her. For 76 days, we faced statements like, “Dora Gail needs to go to the hospital,”  or “Take her home and keep her comfortable.”

Seventy-six days of slow calculated steps – with me behind her supporting her for balance – to the bathroom, doctors’ appointments and hospital stays. Seventy-six days of knowing she was going to die, knowing no one was coming to save us, knowing we couldn’t afford Riluzole, the medicine that wouldn’t cure the disease.

And on the night of that 75th day, I knelt beside her as she slipped into the active phase of death. Her last words to me were, “I love you.”

Her words sustained me through the horror of watching her body being removed from our home, and they sustained me as I stood on the front porch listening to the zipper on the body bag. Metal against metal solidifying the end of her life, the end of our life together, but not the end of ALS.

Her words sustained me through the return of medical equipment, through the condolence calls and through the funeral, where I sat at the back at the request of her family. They sustained me through the long days of the pandemic, the empty chair at the kitchen table and the cold reality that if Lou Gehrig were diagnosed today, he’d have the same prognosis.

ACT for ALS gives hope to people living with ALS. With its expanded access programs, it gives people ineligible for clinical trials an opportunity to try new drugs and therapies. An ALS diagnosis is one of exclusion and often leads to a delay in diagnosis that causes clinical trial ineligibility.

This landmark law has already made a measurable difference, addressing numerous gaps in research, infrastructure and access. The ACT has established access to promising therapies for hundreds of people, established grant programs for rare neurodegenerative diseases and built a coordinated national research ecosystem, driving unprecedented progress toward a cure for ALS.

Each year 6,000 Americans are diagnosed with ALS. Veterans are up to two times likelier to receive an ALS diagnosis than their civilian counterparts.

Significant strides have been made in research, yet there is still no cure. People are still dying. When I entered the ALS community, I had only one connection to ALS. Now, I have far too many ALS connections to count.

Nearly six years after Dora’s death, I work with ALS Problem Solvers, ALS Hope Foundation, Everything ALS, ALS Therapy Development Institute, Les Turner ALS Foundation and I AM ALS  for the reauthorization of ACT for ALS. I advocate for continuity in care, more effective therapies, a more efficient diagnosis process and for an end to ALS.

I stood by Dora during her ALS journey. Today, I continue to stand for all people living with and or impacted by ALS. I urge everyone to contact your senators and representatives and ask them to reauthorize ACT for ALS.

Katrina Byrd, a lover of feather boas, is a storyteller living in Jackson. A six time recipient of Mississippi Arts Commission’s grants, Byrd received her master’s in creative writing from Mississippi University for Women. Byrd is also an ALS advocate who serves on the ALS Hope Foundations Veterans Action Committee. She will speak this week at the Living WellThoreau, Health and Flourishing 2026 Annual Gathering hosted by the Henry David Thoreau Alliance in Concord, Massachusetts. 

This article was originally published by Mississippi Today and is republished here under a Creative Commons license.

Source: Original Article