By Jami Edwards, Jai Edwards and Ernestine Edwards
I was sitting in the break room at work enjoying a late lunch when a phone call from “Mom” interrupted me scrolling down the timeline of my social media account. “I’m on my way to the emergency room. Your dad isn’t feeling well,” she said. It was Friday, March 6, the day after the first major coronavirus outbreak in Washington state. I was not worried my dad had contracted COVID-19, but I was concerned about the progression of an illness he was diagnosed with in November 2018; he was approaching 1.5 years of living with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, and most famously associated with the ice bucket challenge that crazed the internet in 2014.
I work in downtown Atlanta and traffic was budding with people ready to kick-off their weekend early. An hour later, I walked through the sliding doors of the emergency room and everything was operating as normal. There were no restrictions on the number of visitors and visiting hours, and we were not required to wear gloves or masks. However, all of that changed after one night in the emergency room, four days in an intensive care unit, and three days in an acute facility in Athens. The week of March 8, brought on an unprecedented set of challenges for the American people, families, businesses, and my dad’s health.
On Friday, March 13, I pulled up to the parking lot of my dad’s facility at the same time as my cousin. I entered the building before her and was greeted by staff members screening a line of visitors for fevers and asking a series of health questions and travel history. I passed the test, and received hand sanitizer as a consolation prize. My cousin was next. “Your temperature is 99.1,” the nurse stated, “Unfortunately, we cannot let you visit. The coronavirus outbreak is getting serious, and we want to ensure the safety of our patients.” She understood. This was not her first required screening to visit my dad. His ALS condition prohibited him from being around anyone who was sick. My mom, brother, and I vetted everyone who stopped by the house to see him. We were accustomed to having the authority to limit visitors at our discretion, and witnessing my cousin being sent away demonstrated how we were now at the mercy of the hospital staff.
The growing buzz about the coronavirus meant truncated visitation schedules. Nonetheless, the announcement to ban overnight visitors was still heartbreaking to accept. Up until this point, my mom, brother, and I rotated shifts to ensure that at least one of us was always by his side. I wrote my name and number on the white board in his room before I was required to leave. I knew our information was logged in his records to contact in case of an emergency, but having my name in big red letters on display for him to see felt comforting. In addition, my brother phoned the facility’s headquarters to request an exception for my dad’s visitation due to the stage of his ALS. The hospital staff were friendly, but we were not confident that they had the capacity to provide the appropriate care for an ALS patient with only one technician assigned to his floor. Plus, we often served as translators for the nurses who had difficulty communicating with him, and we were pressing the call button when he needed assistance. My mind played out worst-case scenarios that all ended with him not having the strength to call for help. Unfortunately, the hospital’s decision offered little reprieve. Our request was denied, but we were promised access to an online portal that would provide updates on his health status.
My brother arrived at the facility on Sunday morning and by the afternoon Athens-Clarke County experienced its first confirmed case of COVID-19. He Facetimed our family group chat to inform us on the curtailed visiting hours, and provided us with the opportunity to check-in virtually. Before the phone call ended, my mom determined technology to be insufficient to express her love; she wanted to do it the old-fashioned way. She instructed my brother to lift the blinds, and place my father in a position to see out of the window. She then drove to the facility and spent the remaining daylight hours waving to him through the glass as rain fell from the sky. Unbeknownst to us all, it would be the last time we exchanged “I love you” with him.
The following morning, March 16, my mom arrived at the facility a few minutes before the scheduled visiting hours, and was promptly dismissed “until further notice.” She fully understood the precautions, but was upset that the hospital staff waited until visitors arrived to let them know about the new policy. A simple phone call would have saved a 30-mile trip and the disappointment of not seeing her husband. She returned home emotionally exhausted and anxiously awaited the login information and instructions on how to access the online portal, but the staff never reached out. Therefore, she decided to initiate contact and after several attempts, managed to obtain vague news: “He slept alright last night.” We received no updates on his oxygen levels and no updates on the progression of his post-surgery recovery. My family brainstormed ways to gather more information about the status of my dad’s health with growing trepidation. I remembered I had the personal cell number of his daytime technician and set an alarm to call her in the morning. Unfortunately, I never got the opportunity to make the call. Later in the night, the hospital finally reached out with a relevant update, “Mr. Edwards is experiencing respiratory issues. Please come.” Upon arrival, I was ushered into the hospital through a back door. I rushed into my dad’s room, and he appeared to be sleeping peacefully. My mom sat in the chair beside him and with tears in her eyes whispered, “He passed.” As her words sunk in, one thought consumed me – my father transitioned without the presence of family. We were devastated.
In the news, social distancing was increasingly trending across the U.S. with varying degrees of regulation. We were now burdened by the vexing dilemma of how to appropriately make funeral arrangements for a husband of 33 years, father of two, and one of Morgan County’s most devoted civic and religious leaders during a pandemic. What do we do? Some places had already enacted mandatory curfews and others offered recommendations to stand six feet apart. An intense discussion between my family and the funeral home company led to a decision to call the county’s coroner and confirm the recommended number of guests before finalizing plans. On top of being a public figure, my dad came from a large family. We knew a public funeral meant hundreds of hugs, tears, and handshakes crammed in the pews of a church for a few hours, and that felt like a recipe for an outbreak. The coroner’s response was a maximum of 10 attendees. Sometimes what is good for you does not always feel good; the recommendation was a layer of protection for physical health, but an injury to mental health. My dad had more than 10 siblings; he had well over 10 nieces and nephews; he has more than 10 classmates and friends; and he used to pile at least 10 kids in his van and take them to church on Sundays. Now, none of them would be allowed to attend his home-going service.
For the most part, people welcomed our decision to follow the recommendation of the local coroner, but a few others pressured us to reconsider. We did not take offense to the small pushback. After all, many of my family members survived Jim Crow South and grew up during the time when there was no such thing as a “sick day.” Plus, the administration delivered conflicting information about the virus, and it was unsurprising some people misjudged the severity of it. Fortunately, we were able to host a public viewing; we provided hand sanitizers and limited the viewing to 10 people at a time. It went smoothly with the exception of having to resist the natural inclination to receive loved-ones with open arms. There is nothing more comforting than a warm embrace during a time of grieving, and it took a great deal of effort to abandon Southern etiquette by greeting everyone with only nods and the occasional elbow rub.
Nevertheless, the COVID-19 pandemic made an indelible mark on my family. Losing a parent is tough, but planning a funeral during a public health crisis is insufferable. COVID-19 prevented family from being with my father when he transitioned, and it prevented family from being at his home-going services. Yet, the painful inconveniences were not in vain. One cardinal principle my father stressed was the importance of community.
“It’s not about your individual interest,” he would say, “We are one body in Christ. Oftentimes it requires us to put aside our personal desires for the good of the whole.” COVID-19 is a harsh but necessary reminder that we are all inextricably connected. A daughter in China is linked to a grandfather in Italy, who is akin to a family in a small Georgia town in the U.S.
The only way out of the pandemic is anchoring ourselves in the pillars of community. We are all in this together, and we must do our part to support one another.