Ann Wallace is a writer, poet, and long-haul COVID-19 survivor whose words have touched and inspired many. Her journey through the pandemic, from her daughter's early symptoms to her own intense battle with the virus and its lingering effects, has been a testament to resilience, hope, and the power of storytelling. Through prose and poetry, Ann has not only chronicled her personal experiences but also raised awareness about the struggles faced by countless others. Her new poetry collection, "Days of Grace and Silence: A Chronicle of COVID's Long Haul," captures the raw, visceral reality of living through the pandemic while reminding us of the enduring beauty and strength of the human spirit. In this interview, Ann shares her story, her advocacy work, and her unwavering message of hope for those facing their own health battles.
What inspired you to start writing about your experience with COVID-19, both in prose and poetry?
Well, when I began writing about COVID-19, it was all brand new and there were information I needed to share and experiences I wanted to be make record of, whether through prose or poetry. It was early March 2020 when my 16-year old daughter fell sick with a slight fever and a cough. I was away at a conference, but when I returned home, she looked sicker, more depleted than I’d ever seen her. It was frightening, especially in light of news of the spreading coronavirus. I made an appointment with our pediatrician, who agreed she likely had COVID-19 and should be tested. But the problem was that they didn’t have any COVID tests and, at that point, all administration of tests needed to be approved by the state of New Jersey, where we live. Thus began many, many fruitless phone calls trying to secure a COVID test for my daughter. I was so alarmed with the very serious lack of information and testing that I needed to do something. I needed to make our story public because I knew that other families must be facing roadblocks too and in a similar state of panic. So I wrote an essay and sent it to Huffington Post. It was published the next day. That was March 15, 2020.
When I became sick a couple days later, my condition deteriorated quite rapidly. I wanted to make some kind of record of the visceral experience of my illness and of the pandemic itself, so I began writing poems, one each day. By then, I was too sick to continue write prose--and I did try, but I didn’t have the stamina or mental clarity to write more than a paragraph or two. But poetry felt manageable. I don’t mean poetry is easier, but a poem can be small, even just three or four lines, and a poem doesn’t have to have a linear logic or order. And though most of my poems have multiple stanzas, there were days when three lines were enough, and were all I had in me.
Can you share a bit about your personal journey with COVID-19 and how it impacted you and your family?
I was acutely ill, frighteningly so, for a few months. I was in and out of the emergency room, but that March the hospitals were full so I was sent home and told not to get out of bed, because standing, sitting up, talking, any activity really, made my oxygen levels drop. I could feel myself beginning to black out, like a whoosh of darkness coming over me. Week after week after week, I lay on my couch all day, exhausted and in pain. It hurt to read, or think, or even watch tv. And I had trouble remembering words. At nighttime, I carefully made my way upstairs to bed, but I was unable to sleep for more than two and a half or three hours before I would wake in horrible pain, often from a nightmare, with my head throbbing, lungs burning, limbs tingling because my oxygen levels were dropping while I slept. Finally, five weeks into my illness, my doctor was able to secure home oxygen for me, which I used 24/7 for a full month, and regularly for 18 months. Getting that oxygen was no small feat in April 2020, and it lifted some of the daily terror. But I was still very sick.
I can only imagine what a scary time that spring was for my daughters, who were 13 and 16 years old at the time. The worst feeling was leaving them to go to the emergency room—my second trip to the hospital was on my birthday, and I didn’t know when, or if, I would be returning home. I felt the potential trauma acutely. But each time, by some miracle, I did come home.
In late May, I was cleared to begin pulmonary rehab. I remember meeting with my rehab doctor Noah Greenspan on Zoom; he asked me to walk in place in my kitchen, on oxygen, for four minutes. I was certain that would be impossible. But I did it. I needed to spend the rest of the day recovering, but I did it. And then next day I did it again. Eventually I was able to walk down the block and back, and then farther. My older daughter began walking with me, and we walked up and down our street together nearly every day that summer and fall. But even as I rebuilt my stamina, new Long COVID symptoms appeared and persisted, and I faced many setbacks, and my recovery has taken years.
Yet my journey has been nothing compared to watching my daughters, both of whom developed Long COVID too, struggle to breathe, or be racked with pain, or deal with crushing fatigue, day after day. My youngest, who is now seventeen, has been quite seriously effected for the past year and a half. For all of my knowledge about Long COVID, there’s precious little I can do to help her recover more quickly. The most important things I can do are protect her from medical professionals who don’t understand this disease and its associated conditions and advocate for her, which I do nearly every day.
As a long-hauler, what were some of the biggest challenges you faced during your recovery, both physically and emotionally?
Physically, I experienced more than 90 symptoms, some of which, like frozen shoulder, dental problems, and urinary urgency, didn’t appear until months into my illness. My older daughter and I both developed Postural Orthostatic Tachycardia Syndrome (POTS for short), which is a form of dysautonomia in which the normally-automatic systems of the nervous system that regulate temperature, blood pressure, heart rate, and so on don’t coordinate as they should. People with POTS become short of breath, light headed or even pass out with postural changes like sitting up or walking up stairs. And both of my daughters and I developed ME/CFS, formerly known as chronic fatigue syndrome, which is a form of mental and physical fatigue that is fully debilitating; it is not the result of deconditioning or laziness, and it is not someone a person can just push through. In fact, doing so can be harmful. I know this firsthand, as my recovery was set back by months from one energetic weekend when I was feeling good and pushed myself too hard. My daughters and I have all had to learn to listen carefully to and respect the signals we receive from our bodies—and I’ll tell you, that isn’t always easy!
The biggest challenges though have been mental. Being sick for months turned to years, with no certainty about a timeline and with too many twists and turns, takes a toll on one’s mental health. Add to that, the difficulty of watching my daughters face the same illness, plus the lack of medical care and the very real fact of medical gaslighting and shaming. Well, I feel like we’ve all been through the wringer. But I will say, my family has been lucky in many regards, with good health care and financial stability, which many Long COVID patients don’t have. I know many others who are going through the same thing, some faring better than us, and some worse. While there is comfort and support in the Long COVID community, it is crushing to think about how many people, including children, teens, and young adults, are struggling to recover.
Could you tell us about your new poetry collection, "Days of Grace and Silence: A Chronicle of COVID's Long Haul"? What themes or messages are central to this collection?
Well, let’s go back to spring 2020. I was determined to writing a poem each day that April, during National Poetry Month. I knew we were in uncharted territory, globally as well as individually, and I wanted a record of my experience. I wrote these poems both for myself, so I could almost step outside of my illness to look at it, closely, intimately, and try to write my way through, and for others. The poems didn’t have to be polished. I wrote for the sake of bearing witness. I knew I could go back and revise them later, though there are a few that appear in my book exactly as I originally wrote them.
When the month of April ended, I wasn’t yet recovered and the pandemic was still raging, so I kept writing. Days of Grace and Silence is a collection, written in real time over three years, chronicling my illness, as well as my daughters’, set against the backdrop of the pandemic. Each poem is dated and arranged in chronological order, much like a diary, so readers can follow the journey with me. But I want to note the collection, though it is written amidst a pandemic, also holds hope and life. One of the early recurring images in the book are the birds in my backyard, which I could see and hear from my sickbed couch. Even as death and illness and fear washed over the world, life found a way and the birds sang loudly, boldly. There is always life; we just have to listen for it.
How has your experience influenced your advocacy work for patients with long-term COVID-19 effects?
I always think of writing as my primary form of advocacy, but writing has opened other doors for me to share the longhaul story with others. I wrote a second essay for Huff Post on my 100th day of COVID. Katie Couric shared it on her newsletter the next morning, and Good Morning, America interviewed me, as did other media outlets. Fox News Radio even reached out and aired a lengthy conversation with me about Long COVID! That extension of my work was meaningful to me, because at the time, most people hadn’t heard of Long COVID yet—I mean, it didn’t even have an official name, PASC (Post-Acute Sequelae of COVID-19) until winter 2021! I wanted people to know this was happening to people and could happen to them, that it might already be happening and they didn’t know what was going on. Because I remember being at a loss as to why I wasn’t getting better. It was late May when I spoke to a pulmonologist who said they were bracing for what he referred to as the “walking wounded” who would survive COVID but not recover. Hearing that from him gave me a sense of clarity and understanding that was important for my peace of mind and sense of purpose. I wanted other people to understand that it wasn’t just in their heads and that they weren’t alone. I’ve since done advocacy work, speaking with elected officials about the need for more research, education and support efforts, and I serve on the NIH RECOVER Initiative on Long COVID as a patient representative.
What do you hope readers will take away from your poetry and your story?
My hope is that readers will allow themselves to feel, to remember, even to mourn as they read Days of Grace and Silence. That they will feel the breathless fog of hypoxia, their hands might tingle and numb, they might imagine their head throbbing. That they will feel the despair of a woman whose husband died at home and who could not find a funeral home to come take his body, or the terror of walking into the emergency room in a hospital with a makeshift morgue outside, or the anxiety of reentering the world in spring and summer 2020. I hope my poetry provides space for readers to honor all we have lost, but that it also reminds them that there is always also life and hope and beauty. The birds kept singing and the flowers bloomed through the darkest days of 2020, and we, each of us reading and remembering today, are still here. And I hope that allows us to feel resilient and strong and filled with hope and purpose.
Can you share a memorable moment or realization from your journey that significantly impacted your writing or perspective?
My first trip to the ER with COVID was on March 25, 2020. It was my local hospital, and I knew the layout of the ER, but the entire department had been physically reorganized for processing and treating people with the virus. The first doctor who saw me said that he hadn’t seen his family in two weeks. And staff members had each cobbled together layers of masks, respirators, and face shields. I felt profound empathy for all of them, and for the very sick people, coughing and shivering and moaning, behind their hospital curtains. I didn’t even know for sure that I had COVID yet, and I worried that I was taking up a bed someone else needed. Three days later when I went back to the ER, everything seemed different yet again--the staff was stretched thin and tired, and they remained physically distant, speaking to me from the other side of the curtain. And I was much sicker; my oxygen levels dropped frighteningly low when I stood or spoke, I couldn’t walk unassisted, I could barely speak and was struggling to stay conscious, and the right side of my body had a tremor. I remember asking for help moving from the wheelchair to the bed, because I couldn’t do it on my own, and I saw the fear in the aide’s face because I needed his physical assistance; I needed him to touch me. Yet, as sick as I was, after a few hours, I was sent home with orders to stay on bedrest and return if I got worse. The hospital was full and many, many others were worse off. It was a humbling experience, one that gave me a terrifying inside look at where we were and how very ill people were. It also reinforced for me that I needed to share what I was living through and witnessing.
In what ways do you think storytelling, particularly through poetry, can create awareness and empathy for health-related challenges like long-term COVID-19 effects?
Thank you for this important question! Storytelling is an important and powerful tool—and many medical professionals have been leaning into that fact for a few decades now, building the new field of narrative medicine. When we listen to people’s stories, and I mean really listen, to what is said, to how it is shared, and what remains unspoken, we can learn a great deal and build empathy for others.
Many patients with invisible illnesses like Long COVID and its associated conditions, feel that their stories, their lived realities, have been ignored and dismissed. And that has been very difficult for many long haulers who feel they have been left behind as the rest of the world has moved on from the pandemic. But the truth is that Long COVID is a mass disabling event and millions of people in the U.S. alone are no longer able to work or attend school. Many have lost their savings, their cars, their homes, and they are without hope. Their stories matter and need to be told. Stories have the power to change people’s perceptions and understanding. And that can lead to material support—more research, information, resources, and support services that are so critically needed.
What projects or initiatives are you currently working on, and what are your future plans as a writer and advocate?
I’ve been working on an illness memoir--before COVID, I survived ovarian cancer in my early twenties and was diagnosed with multiple sclerosis in my late thirties, so I have a lifetime of experience navigating illness! I am making good progress on that book and plan to devote much of my summer to it. I’m also compiling a new poetry collection. And I host and produce The WildStory: A Podcast of Poetry and Plants with my friend Kim Correro, which is an exciting project that is getting some really nice attention. People can check it out at https://npsnj.org/the-wildstory-podcast/, and it’s available on iTunes, Spotify and Amazon Music.
How do you use social media platforms like Instagram and Threads to connect with your audience and share your work?
My personal Facebook page was an important outlet for me when I was first sick. I posted regularly about my experience navigating COVID—sharing everything from my day to day illness, to my interactions with my doctors and in hospitals, to what I was learning from reading and conversations. Many people read and shared those posts, so I kept writing them even though each one took a lot of my mental energy.
I now use Instagram (@annwallace409) primarily for my writing-related work—publications, readings, and the like—and I dabble on Threads, which is a wonderful new platform.
What advice would you give to aspiring writers, particularly those who want to use their writing to raise awareness or advocate for important causes?
Remember that your personal story is larger than you. That is, if you are living through an illness like Long COVID, your story, though it is unique in its particulars, represents that of many other people. When I wrote my first essay for HuffPost in mid-March 2020 about not being able to get my daughter tested for COVID, I did so because I knew that if I could not get the medical care and information we needed, then countless other families were in the same situation. The public deserved to know what that reality looked like, so others could be prepared for a frightening reality, but, more importantly, so that reality might change. In that instance, we needed more tests and testing facilities, and we also needed a far better understanding of how COVID impacts kids and teenagers. Did one story make those things happen? No, but many stories together can do that. So tell your story.
Finally, what message would you like to convey to readers who may be facing their own health battles or uncertainties?
Surround yourself with people who believe and support you. One thing the Long COVID experience has reinforced is how easy it is for people—often professionals, but also family and friends—to dismiss people with invisible illnesses or illnesses that aren’t easy to diagnose or treat. If your healthcare provider doesn’t believe you or is pushing you toward treatments that are causing harm, speak up. If that doesn’t work, walk away and find another provider. I know that isn’t easy or fast, and sometimes it is expensive, but this is your life and you deserve a medical team that 1) listens to you, and 2) is willing, when they don’t have the answers, to look for answers on your behalf. And if you feel alone, there are wonderfully supportive communities online—I’ve met amazing people through Long COVID groups, people I may have never met in person but who understand what my family is going through, and some days, that makes all the difference.
