Healing through Grief & the Normalization of Structural Violence (Another Long COVID)

“I can breathe!!!!”

The text from my little sister on May 14th, 2021 came with a picture of her bright smile and a joy and peace that belied how much the previous 14 months had upended her life.

When I was a 4th year medical student I diagnosed my sister with Type 1 diabetes because, as a 19 year old in the pre-Obamacare years, she wasn’t eligible for health insurance under our parents. Thankfully the clinic I was rotating at that summer could see her free of charge, for that visit at least. She would go on to have numerous hospitalizations related to the challenges of navigating her diabetes without health insurance in those first couple years. This was further complicated by her journey and struggle with substance abuse disorder and mental health conditions. I struggled with how to best support her through it all, at times being a 3rd parent more than she, or I, wanted or needed. We therefore fell into an unfortunate pattern in our adult lives, we’d move in and out of relationship. In and out of sharing in each other’s celebrations and heart aches.

By early 2020 though, she had found her footing in so many ways. She was the healthiest I’d seen her in years, she had stability in her relationships and finances. Much of this was attributable to a job working in hospitality where she had found not only a steady income but a group of people that saw her brilliance and understood the struggles she had overcome and continued to face. She had stable health insurance as well through our state and as a result was getting more consistent care.

Then a novel virus, SARS-CoV-2, started popping up in the U.S. By March the number of cases of COVID-19 began climbing to the point that federal and state public health emergencies were announced. Hospitality workers were among those hit hardest by public health measures to contain the spread of the virus, with the National Restaurant Association finding that two-thirds of U.S. restaurant workers lost their jobs by April of 2020. My sister lost her job, her routine, her consistent connection to others. She was able to maintain for some time through economic stimulus aid and rental support. Her health insurance thankfully stayed steady thanks to the Families First Coronavirus Response Act. Her level of resilience throughout the pandemic was significantly impacted by unprecedented flexibility in health and social policy and funding. The pandemic was not easy on her, but it could have been so much worse.

That text in May 2021 came a day after officials in the Biden administration relaxed guidance around face masks with then CDC director Dr. Rachel Walensky declaring, “Anyone who is fully vaccinated can participate in indoor and outdoor activities, large or small, without wearing a mask or physical distancing.” The push to fully open up the economy and return to “normal” was in full swing with a vaccine becoming more widely available. I worried what meant for the infectious risk of my sister and those in her line of work. I also worried about how quickly politicians and decision makers wanted to disregard the lessons learned in our COVID-19 response, to abandon what was working for my sister and so many others.

The 2021 Presidential COVID-19 Health Equity Task Force was charged with “Ensuring an Equitable Pandemic Response and Recovery.” In the task force’s final report, its chair, Dr. Marcella Nunez-Smith, ended her remarks with, “To a new and better normal.”

Five years since it was launched it is hard to say our normal is new or better. Unemployment is growing (with Black women having one of the most dramatic declines in employment ever recorded) and wages are decreasing. Our uninsured rate is increasing and while recent data showed some improvement in our overall lifespans (although racial disparities still persist), we still have an abysmal ranking of 38 out of 41 wealthy countries when it comes to child physical health.

However, I don’t need data to know that promises of a new and better normal have fallen tragically short.

Last year my sister died unexpectedly. She was a casualty of the political violence of “normal.” Caught in a cycle where she lost her health insurance, would eventually be hospitalized, lose opportunities to work, receive large hospital bills, disregard her health in order to work to try and get out of debt, and get hospitalized again. Her trust in our health care system almost completely eroded. She eventually knew which clinics, emergency departments and hospitals she could expect to be treated with dignity, and those where she would be treated with disdain by health care workers who only saw her through the lens of her diagnoses, and failed to see how much she overcame each time to go back and ask for their help.

My sister created wood burning pieces as part of her art for her own healing and to help inspire others.

I recently learned that August 30th is National Grief Awareness Day. Intended to create space to recognize the experience of loss and grief, to provide a communal day of remembering those we have lost, no matter the reason. But for many of us the reason still matters. It will likely always matter. It is what makes that grief sting every time we let it surface. For me I continue to struggle with the fact that although under cause of death my sister’s death certificate may read complications of diabetes, the fact she is not here today is because of a sustained act of political violence. Her unexpected death won't officially be counted as related to the COVID pandemic, but it should. It was our retreat from those brief moments of collective connection, when 100,000 deaths were considered an incalculable loss, and the policies that recognized our health was intertwined with that of our neighbors', that contributed to my sister’s life being cut short.

That loss of connection, those ideas that we can get by while others struggle, led to a human toll 12 times that once incalculable figure. Our inability to collectively grieve the loss of time, of potential, of life that COVID-19 stole from our families and communities has had a lingering impact on our ability to fully heal.

Early on in the pandemic reports emerged of people who survived their encounter with the virus but were struggling to fully heal. Many would go on to have significant, persistent, symptoms. Those who never had a headache a day in their life were experiencing them constantly, people who routinely ran marathons had debilitating shortness of breath and fatigue. There was initially much skepticism, however these patients’ reality quickly led to a new term: Long COVID. Today there are clinical criteria and therapeutic approaches to diagnose and support those with Long COVID or Post-acute sequela of COVID-19 (PASC).

But how do we address our society’s “Long COVID,” the mounting sequela of a seismic shift in our trust in our government, in our health care institutions, in each other? I fear much of the lack of trust and our health care nihilism is baked into the myth we all live with, that things can’t change. That it is always best to return to “normal.” This myth that things can’t, or shouldn’t change is a pre-existing condition. One that keeps us from facing our wounds and realizing health.

"But how do we address our society’s “Long COVID,” the mounting sequela of a seismic shift in our trust in our government, in our health care institutions, in each other?"

I have found a path to healing but it has required time, reflection and embracing radical honesty. I believe that is what will help us collectively combat our societal “Long COVID”. My sister thought rapper Lil Wayne was a lyrical genius and so I think she’d quote him here and say, “I just went shopping and talk is still cheap.” How we talk about what helps us heal needs to be backed up by actions, and policies, that demonstrate care.

Leaders can’t talk about wanting to protect Medicaid and our safety net from fraud, waste and abuse, while at the same time adding underfunded mandates that have proven to make it harder for people to access care while worsening outcomes and costing more money.

Nor can they pledge to champion universal and single-payer health care for all, then fail to deliver even when they have the political power.

This combination of feigned interest and intentional indifference can be seen as yet another form of political violence. As Dr. Paul Farmer noted, “Those whose lives are rarely touched by structural violence are uniquely prone to recommend resignation as a response to it.” In 2026 we find ourselves in the midst of defining yet another “new normal.” The not so radical truth is that in order to heal we can not rely on those whose imagination for what is possible only extends to what has been. What is needed are leaders who are not tethered to “normal” but are invested in a change anchored by equal parts action and hope.

"we can not rely on those whose imagination for what is possible only extends to what has been"

This August 30th, the day before my sister would've celebrated her 38th birthday, I will take time to remember her, to sit with the grief and anger that flows from our collective failure to care for each other, and to look towards those providing hope that we can heal from our shared loss.

"I can breathe!!" accompanied this photo from my sister in May 2021

We used that photo she sent me, in May 2021, at her memorial. She felt like she could breathe again. Something I still struggle to feel when things, big and little, remind me of her. A sequela of my enduring love for her and, also, another form of Long COVID.

An unfinished wood burning piece my sister was working on of her on her motorcycle.