{"id":2653,"date":"2022-12-16T07:56:06","date_gmt":"2022-12-16T12:56:06","guid":{"rendered":"https:\/\/magazine.alumni.ncsu.edu\/?p=2653"},"modified":"2024-02-01T15:38:54","modified_gmt":"2024-02-01T20:38:54","slug":"the-long-haul","status":"publish","type":"post","link":"https:\/\/magazine.ncsu.edu\/2022\/the-long-haul\/","title":{"rendered":"The Long Haul"},"content":{"rendered":"\n

By Eleanor Spicer Rice \u201903, \u201912 PHD<\/h4>\n\n\n\n

For weeks, I\u2019d been on the receiving end of blaring horns. \u201cThat man just gave us the middle finger!\u201d my 7-year-old reported daily from the back seat. In this \u201cpost-COVID\u201d world, I was pretty sure drivers had lost their minds. <\/p>\n\n\n\n

It wasn\u2019t until I had an adult passenger in the car, my father, that I understood: Something\u2019s not right about my reality. <\/p>\n\n\n\n

As I waited patiently for the light to change green and then drove through the intersection, I heard those horns and noticed my father had adopted the posture he used when I was first learning to drive, right foot on the imaginary passenger side brake, one hand braced on the dashboard, the other grasping for support in the direction of the window. \u201cWhat color do you think that light is, Eleanor?\u201d <\/p>\n\n\n\n

I looked up as we passed under it. It was red. How did it turn red so fast? It was green just a second ago! My father gently explained that I had stopped for the green light, which looked like a normal red light to me. Then, when it changed to red, I drove right on through, to the bewilderment and frustration of the drivers around me. <\/p>\n\n\n\n

This was December 2021, three months into my long COVID journey. This was when I quit driving without an adult in the car. <\/p>\n\n\n\n

\"\"<\/figure>\n\n\n\n

Suppose those inspirational posters are right, and every challenge really is a learning opportunity. I was living in one of the strangest challenges of my life, a great nesting doll of challenges, each with another inside of it. By this point, I\u2019d lost my voice, my memory, my sense of self, my ability to read or thermoregulate or sleep at night, or walk more than a block. I\u2019d lost the ability to get my children ready for school, my breath, my feeling in my right arm and now my ability to drive. I\u2019m 41 years old and otherwise active and healthy. I\u2019ve never experienced long-term illness like this in my life. As someone with a keen interest in science\u2009\u2014\u2009I have a Ph.D. in entomology and work as a science writer\u2009\u2014\u2009I felt eager to find as much information about my condition as I could. As a mother of two children, ages five and seven, I was desperate to return to my former self as quickly as possible. I wanted to walk them to school. I wanted to be able to pick them up to kiss them when they fell. But long COVID remains hazily understood, refusing to operate on any timeframe except its own. <\/p>\n\n\n\n

. . . long COVID remains hazily understood, refusing to operate on any timeframe except its own.<\/p><\/div><\/blockquote>\n\n\n\n

Six months into long COVID, I\u2019ve experienced what it\u2019s like to stare into a chasm, unable to see the other side. Navigating the long COVID abyss, I\u2019ve come to understand that there are lessons nestled in challenges. I\u2019m still making sense of some of them. Others I\u2019ve had time to work through. <\/p>\n\n\n\n

Long COVID is something.<\/strong> When I first experienced symptoms of long COVID, a.k.a. \u201clong-haul COVID,\u201d \u201cpost-acute COVID-19,\u201d \u201clong-term effects of COVID,\u201d \u201cchronic COVID,\u201d or \u201cPost-Acute Coronavirus Disease Syndrome,\u201d I didn\u2019t know it was an actual thing. <\/p>\n\n\n\n

I was fully vaccinated when I got a positive test result back in August 2021. Having COVID wasn\u2019t the best four days of my life, but according to Google, my symptoms fell solidly in the \u201cmild-to-moderate\u201d category. <\/p>\n\n\n\n

However, even after I tested negative, I wasn\u2019t getting better. Walking downstairs from my bedroom was an ordeal. My heart raced. I gasped for breath as if I\u2019d just run a marathon. \u201cDon\u2019t wait on me,\u201d I\u2019d wheeze, with a voice that sounded like Don Corleone from The Godfather<\/em>, except the only offer I\u2019d make that my family couldn\u2019t refuse was to scoop me up off the floor. <\/p>\n\n\n\n

\n
\"\"<\/figure>\n\n\n\n
\n
\"\"<\/figure>\n\n\n\n
\"\"<\/figure>\n<\/section>\n<\/section>\n\n\n\n

I couldn\u2019t walk my son to school in the morning even though the school is a block from our house. A parent called to check on me. \u201cAre you a long-hauler?!\u201d she asked when she heard my voice. \u201cLong-hauler\u201d was a term that had just hit the news cycles that week. Little was known about it. I\u2019d never heard the term before. How dare she! I\u2019m not a one-woman super spreader! <\/p>\n\n\n\n

I couldn\u2019t walk my son to school in the morning even though the school is a block from our house.<\/p><\/div><\/blockquote>\n\n\n\n

\u201cI\u2019M . . . TESTING . . . NEGATIVE!\u201d I wheezed. <\/p>\n\n\n\n

But I was a long-hauler. And so are up to 30 percent of people who test positive for COVID. Even by the most conservative estimates, millions of people in the United States are living with long COVID. We\u2019re not sure why some people get on with their lives while others are left to manage symptoms lasting weeks, months, or longer. Still, it\u2019s real. <\/p>\n\n\n\n

Long COVID offers an assortment of trouble for anyone under its spell.<\/strong> My mother and I pulled into my aunt and uncle\u2019s driveway in my hometown of Goldsboro, N.C., for Thanksgiving supper, a week or two before I realized I was a hazardous driver. My mother switched off the car and offered some advice: \u201cWhen someone asks you how you\u2019re feeling, why not just say, \u2018I\u2019m recovering.\u2019 You don\u2019t have to say every single thing that is wrong with you right now.\u201d <\/p>\n\n\n\n

As with many chronically ill people, I spent so much time with my symptoms that they were one of the only things I wanted to discuss. I would talk\u2009\u2014\u2009and talk\u2009\u2014\u2009about my symptoms, in part because I was hoping someone would tell me what was wrong with me, or tell me I was normal, or at the very least tell me that it all sounded horrible to them, too. <\/p>\n\n\n\n

The answer to, \u201cHow are you feeling these days, Eleanor?\u201d would go something like this: <\/p>\n\n\n\n

\u201cI have these recurring fevers that last a few hours or a few days. Sometimes I can\u2019t really breathe, and I don\u2019t know why. I can\u2019t remember things, like whole days or sometimes weeks, and sometimes it\u2019s stuff that happened recently and sometimes it\u2019s people from my past. I lost a bunch of hair, and sometimes I sit up at night going down these unstoppable doom spirals. My eyeballs changed shape for a couple of weeks, but they\u2019re fine now. My arm is numb. I cry a lot. Do you think I\u2019ll get better?\u201d <\/p>\n\n\n\n

Though I had little social wherewithal when it came to long COVID, I did have enough awareness to see that people would look concerned, then uncomfortable, then in search of an exit. <\/p>\n\n\n\n

Long COVID may be caused by a number of factors.<\/strong> One possible factor is cell damage. The COVID virus kills the cells of infected people, which could result in lingering symptoms wherever those cells were killed. It could cause a rapid heartbeat in people who had heart damage. It could cause cognitive issues in people with brain damage. <\/p>\n\n\n\n

Even if someone has recovered from COVID, the virus may linger in their organ tissue, which could cause a cascade of effects. The immune system, knocked off balance by the virus, could be weakened, resulting in the activation of other viruses sleeping in the body. <\/p>\n\n\n\n

Like many things in life, the truth is probably found in a combination of pathways. COVID recovery clinics are popping up across the country to try to find some answers or at least clues. I am under the care of the one at UNC-Chapel Hill. <\/p>\n\n\n\n

\n
<\/span><\/span>

Long COVID: What We Know and What We Don’t Know<\/h1><\/a>
\n

What We Know<\/strong>
It affects 10\u201330% of COVID patients. Symptoms can last weeks, months, or longer. Some people may never fully recover.<\/p>\n\n\n\n

Symptoms can span across 10 organ systems.<\/p>\n\n\n\n

Long COVID is a type of post-viral syndrome.
Post-viral syndrome can occur after infection with other types of viruses, including the flu.<\/p>\n\n\n\n

What We Don\u2019t Know<\/strong>
We can\u2019t predict which COVID patients will suffer from it. Even mild or asymptomatic COVID patients may suffer from severe long COVID.<\/p>\n\n\n\n

We can\u2019t predict how long each patient will suffer from it.<\/p>\n\n\n\n

We don\u2019t yet understand why some people have some organ systems affected, and others have other systems.<\/p>\n\n\n\n

Long COVID is more common and more often severe than post-viral syndrome from other common viruses. We don\u2019t know why.<\/p>\n<\/div><\/div><\/div>\n<\/div><\/div>\n\n\n\n

We\u2019re not in the short rows yet.<\/strong> More than five dozen COVID recovery clinics have opened in hospitals and universities across the country, including the one at UNC. Some clinics study their patients, while all of them help coordinate and tailor care with experts in the multiple organ systems that could be affected by long COVID. They also help patients understand where their symptoms fall within the spectrum of the condition. The clinic helped me understand that I was suffering from a real condition and had not completely lost my mind. <\/p>\n\n\n\n

As of this summer, I have had three appointments at the clinic and more are on the way. I have seen a long COVID specialist and a neuropsychologist through the clinic. I have had an MRI, X-rays, blood tests, urinalyses, extensive pulmonologist exams and multiple visits with my general practitioner. The clinic and my general practitioner work to fill in the blanks of my illness. They provide prescriptions to help mitigate these symptoms they can\u2019t yet cure. <\/p>\n\n\n\n

People are kind.<\/strong> There was a time in the early part of 2022 when I developed a stutter. I didn\u2019t have a stutter as a child, but maybe you did, or maybe you have a stutter now. Maybe you know what it means to have the words for something in your brain but unable to get those words to come out of your mouth. You can see that it is frustrating for people trying to hear your words, too. You can see them try to fill in for you, or feel sorry for you as you work for two full minutes to say something profound, like, \u201cIt\u2019s hotter today than it was yesterday.\u201d <\/p>\n\n\n\n

If you haven\u2019t, just take it from me: It\u2019s not awesome. My job is communication. I have always taken words for granted. Take this from me, too: People are kind. People are so kind. There was the day at the grocery store when I spent 30 seconds trying to ask the teenager working the checkout for paper bags. I couldn\u2019t say paper bags, but I could say, \u201cI\u2019m sorry\u201d after I realized there was a line behind me. I looked up at her and saw she was smiling at me. Not the pitying smile I\u2019d gotten used to, but a smile of kindness. \u201cWhy are you sorry?\u201d she said. \u201cI\u2019m right here with you.\u201d <\/p>\n\n\n\n

My daily experience has become punctuated by kindnesses. The mug of lilies left at my door by a beloved neighbor. The octogenarian couple who fixes supper for us each week for months. The person experiencing homelessness who checks in on my health when I was able to return to my early morning dog walks, who notices when I haven\u2019t been sleeping or when I seem to be feeling better. <\/p>\n\n\n\n

Whenever I feel out to sea, I am washed home on a river of kindnesses.<\/p>\n\n\n\n

It takes a village, but some of us are on deserted islands.<\/strong> At one point, I struggled to make it from dawn to dusk\u2009\u2014\u2009even with the following help: My parents drove from an hour away to play with my children and take me to places like the grocery store; my friends brought dinner; my business partner helped with my work; my husband took our children to school and managed the basic pieces of living; and a group of doctors probed around to see what is wrong with me. <\/p>\n\n\n\n

I know that I am an exception when it comes to having a village. I live in a happy, walkable neighborhood filled with people I care about who help me. I have a husband, best friend and parents who set their own lives aside so that I may live mine. I have excellent insurance and can afford to bounce from doctor to doctor. <\/p>\n\n\n\n

At my first visit to the long COVID clinic, I learned that my case is \u201cmoderate.\u201d There are people who can\u2019t get out of bed to brush their teeth. There are people who take their children to school or go to the grocery store and then can\u2019t find their way home. <\/p>\n\n\n\n

\"\"<\/figure>\n\n\n\n

You never can tell what another person is going through.<\/strong> Since experiencing long COVID, I understand this saying in a whole new way. I don\u2019t look sick, but sometimes I struggle to remember where I am, or I have a panic spiral because I don\u2019t know where to sit at a restaurant, or I can\u2019t read signs. <\/p>\n\n\n\n

As an entomologist, I\u2019m used to people telling me their secrets, whether they realize it or not. I can tell a lot about you from those roach pictures you send me or the ants you\u2019re finding in your backyard. I can tell what frightens you, what delights you, how tidy your house is, what makes some of your dreams. I love these things about you. <\/p>\n\n\n\n

Since long COVID entered my life, I\u2019ve learned even more about others\u2019 secrets. People call me with their fears and their maladies. Like my urge to share my health status at Thanksgiving, they\u2019re trying to find someone to tell them what to do, or that they\u2019ll be okay, or maybe they\u2019re trying to be kind to me, to tell me it\u2019s not all so bad, see? <\/p>\n\n\n\n

Each of us has a lot going on that nobody can see.<\/p><\/div><\/blockquote>\n\n\n\n

Each of us has a lot going on that nobody can see. Our worries and our dreams are as important as the amount of space they take. The parent who can\u2019t sleep because her child is getting bullied at school is as anguished as I am in my sleepless doom spirals, maybe more so. It takes a lot to be human. <\/p>\n\n\n\n

Memory isn\u2019t everything. I\u2019ve come to see memory as a small bonus to the living experience. It\u2019s nice to have, but it\u2019s not always reliable. Take conversations with my brother about our childhood, for example, where he simply misremembers, replacing my character with our beloved, long-dead dog, Sadie. <\/p>\n\n\n\n

\u201cBut how did Sadie scale the fence to jump the railroad tracks?!\u201d I\u2019ll say. \u201cOnly a person can do that! And where would I have been all these years of your adolescence?! It was me!\u201d <\/p>\n\n\n\n

\u201cShe was a remarkable dog,\u201d he\u2019ll reply, completely serious. <\/p>\n\n\n\n

Now I battle with my own memory. It frightens me when someone I\u2019ve never met approaches me and talks about our conversation last week. A heavy, cold, eerie feeling settles in my stomach when someone mentions people I know I am supposed to know but can\u2019t think how. <\/p>\n\n\n\n

\n
<\/span><\/span>

A Recent Study
<\/h2><\/a>
\n

A recent study found that long COVID sufferers reported more than 200 symptoms. Shortness of breath and racing heart are common, and so is trouble with memory. Other symptoms aren\u2019t as common, but are also not unusual, including numbness and tingling sensations and trouble with speech. Even the eyeball thing is explained by the mystery that is long COVID.<\/em><\/p>\n<\/div><\/div><\/div>\n<\/div><\/div>\n\n\n\n

Though much is lost in terms of memory, fragments of experience, feelings and emotions remain. I can\u2019t tell you everything my husband has done in the last six months, but I won\u2019t forget his form beside me as I reach out in my hours of wakeful darkness because I am tired of being awake, and I\u2019m probably a little bored, and I want someone to let me know that they know I\u2019m there. I\u2019ll poke him just enough to wake him halfway. <\/p>\n\n\n\n

\u201cAm I snoring?\u201d he\u2019ll say. <\/p>\n\n\n\n

\u201cNo.\u201d <\/p>\n\n\n\n

\u201cIs everything okay?\u201d <\/p>\n\n\n\n

\u201cI\u2019m just awake.\u201d <\/p>\n\n\n\n

\u201cI can be awake, too.\u201d<\/p>\n","protected":false,"raw":"\n\n\n\n\n

By Eleanor Spicer Rice \u201903, \u201912 PHD<\/h4>\n\n\n\n

For weeks, I\u2019d been on the receiving end of blaring horns. \u201cThat man just gave us the middle finger!\u201d my 7-year-old reported daily from the back seat. In this \u201cpost-COVID\u201d world, I was pretty sure drivers had lost their minds. <\/p>\n\n\n\n

It wasn\u2019t until I had an adult passenger in the car, my father, that I understood: Something\u2019s not right about my reality. <\/p>\n\n\n\n

As I waited patiently for the light to change green and then drove through the intersection, I heard those horns and noticed my father had adopted the posture he used when I was first learning to drive, right foot on the imaginary passenger side brake, one hand braced on the dashboard, the other grasping for support in the direction of the window. \u201cWhat color do you think that light is, Eleanor?\u201d <\/p>\n\n\n\n

I looked up as we passed under it. It was red. How did it turn red so fast? It was green just a second ago! My father gently explained that I had stopped for the green light, which looked like a normal red light to me. Then, when it changed to red, I drove right on through, to the bewilderment and frustration of the drivers around me. <\/p>\n\n\n\n

This was December 2021, three months into my long COVID journey. This was when I quit driving without an adult in the car. <\/p>\n\n\n\n

\"\"<\/figure>\n\n\n\n

Suppose those inspirational posters are right, and every challenge really is a learning opportunity. I was living in one of the strangest challenges of my life, a great nesting doll of challenges, each with another inside of it. By this point, I\u2019d lost my voice, my memory, my sense of self, my ability to read or thermoregulate or sleep at night, or walk more than a block. I\u2019d lost the ability to get my children ready for school, my breath, my feeling in my right arm and now my ability to drive. I\u2019m 41 years old and otherwise active and healthy. I\u2019ve never experienced long-term illness like this in my life. As someone with a keen interest in science\u2009\u2014\u2009I have a Ph.D. in entomology and work as a science writer\u2009\u2014\u2009I felt eager to find as much information about my condition as I could. As a mother of two children, ages five and seven, I was desperate to return to my former self as quickly as possible. I wanted to walk them to school. I wanted to be able to pick them up to kiss them when they fell. But long COVID remains hazily understood, refusing to operate on any timeframe except its own. <\/p>\n\n\n\n

. . . long COVID remains hazily understood, refusing to operate on any timeframe except its own.<\/p><\/div><\/blockquote>\n\n\n\n

Six months into long COVID, I\u2019ve experienced what it\u2019s like to stare into a chasm, unable to see the other side. Navigating the long COVID abyss, I\u2019ve come to understand that there are lessons nestled in challenges. I\u2019m still making sense of some of them. Others I\u2019ve had time to work through. <\/p>\n\n\n\n

Long COVID is something.<\/strong> When I first experienced symptoms of long COVID, a.k.a. \u201clong-haul COVID,\u201d \u201cpost-acute COVID-19,\u201d \u201clong-term effects of COVID,\u201d \u201cchronic COVID,\u201d or \u201cPost-Acute Coronavirus Disease Syndrome,\u201d I didn\u2019t know it was an actual thing. <\/p>\n\n\n\n

I was fully vaccinated when I got a positive test result back in August 2021. Having COVID wasn\u2019t the best four days of my life, but according to Google, my symptoms fell solidly in the \u201cmild-to-moderate\u201d category. <\/p>\n\n\n\n

However, even after I tested negative, I wasn\u2019t getting better. Walking downstairs from my bedroom was an ordeal. My heart raced. I gasped for breath as if I\u2019d just run a marathon. \u201cDon\u2019t wait on me,\u201d I\u2019d wheeze, with a voice that sounded like Don Corleone from The Godfather<\/em>, except the only offer I\u2019d make that my family couldn\u2019t refuse was to scoop me up off the floor. <\/p>\n\n\n\n

\n
\"\"<\/figure>\n\n\n\n
\n
\"\"<\/figure>\n\n\n\n
\"\"<\/figure>\n<\/section>\n<\/section>\n\n\n\n

I couldn\u2019t walk my son to school in the morning even though the school is a block from our house. A parent called to check on me. \u201cAre you a long-hauler?!\u201d she asked when she heard my voice. \u201cLong-hauler\u201d was a term that had just hit the news cycles that week. Little was known about it. I\u2019d never heard the term before. How dare she! I\u2019m not a one-woman super spreader! <\/p>\n\n\n\n

I couldn\u2019t walk my son to school in the morning even though the school is a block from our house.<\/p><\/div><\/blockquote>\n\n\n\n

\u201cI\u2019M . . . TESTING . . . NEGATIVE!\u201d I wheezed. <\/p>\n\n\n\n

But I was a long-hauler. And so are up to 30 percent of people who test positive for COVID. Even by the most conservative estimates, millions of people in the United States are living with long COVID. We\u2019re not sure why some people get on with their lives while others are left to manage symptoms lasting weeks, months, or longer. Still, it\u2019s real. <\/p>\n\n\n\n

Long COVID offers an assortment of trouble for anyone under its spell.<\/strong> My mother and I pulled into my aunt and uncle\u2019s driveway in my hometown of Goldsboro, N.C., for Thanksgiving supper, a week or two before I realized I was a hazardous driver. My mother switched off the car and offered some advice: \u201cWhen someone asks you how you\u2019re feeling, why not just say, \u2018I\u2019m recovering.\u2019 You don\u2019t have to say every single thing that is wrong with you right now.\u201d <\/p>\n\n\n\n

As with many chronically ill people, I spent so much time with my symptoms that they were one of the only things I wanted to discuss. I would talk\u2009\u2014\u2009and talk\u2009\u2014\u2009about my symptoms, in part because I was hoping someone would tell me what was wrong with me, or tell me I was normal, or at the very least tell me that it all sounded horrible to them, too. <\/p>\n\n\n\n

The answer to, \u201cHow are you feeling these days, Eleanor?\u201d would go something like this: <\/p>\n\n\n\n

\u201cI have these recurring fevers that last a few hours or a few days. Sometimes I can\u2019t really breathe, and I don\u2019t know why. I can\u2019t remember things, like whole days or sometimes weeks, and sometimes it\u2019s stuff that happened recently and sometimes it\u2019s people from my past. I lost a bunch of hair, and sometimes I sit up at night going down these unstoppable doom spirals. My eyeballs changed shape for a couple of weeks, but they\u2019re fine now. My arm is numb. I cry a lot. Do you think I\u2019ll get better?\u201d <\/p>\n\n\n\n

Though I had little social wherewithal when it came to long COVID, I did have enough awareness to see that people would look concerned, then uncomfortable, then in search of an exit. <\/p>\n\n\n\n

Long COVID may be caused by a number of factors.<\/strong> One possible factor is cell damage. The COVID virus kills the cells of infected people, which could result in lingering symptoms wherever those cells were killed. It could cause a rapid heartbeat in people who had heart damage. It could cause cognitive issues in people with brain damage. <\/p>\n\n\n\n

Even if someone has recovered from COVID, the virus may linger in their organ tissue, which could cause a cascade of effects. The immune system, knocked off balance by the virus, could be weakened, resulting in the activation of other viruses sleeping in the body. <\/p>\n\n\n\n

Like many things in life, the truth is probably found in a combination of pathways. COVID recovery clinics are popping up across the country to try to find some answers or at least clues. I am under the care of the one at UNC-Chapel Hill. <\/p>\n\n\n\n

\n
<\/span><\/span>

Long COVID: What We Know and What We Don't Know<\/h1><\/a>
\n

What We Know<\/strong>
It affects 10\u201330% of COVID patients. Symptoms can last weeks, months, or longer. Some people may never fully recover.<\/p>\n\n\n\n

Symptoms can span across 10 organ systems.<\/p>\n\n\n\n

Long COVID is a type of post-viral syndrome.
Post-viral syndrome can occur after infection with other types of viruses, including the flu.<\/p>\n\n\n\n

What We Don\u2019t Know<\/strong>
We can\u2019t predict which COVID patients will suffer from it. Even mild or asymptomatic COVID patients may suffer from severe long COVID.<\/p>\n\n\n\n

We can\u2019t predict how long each patient will suffer from it.<\/p>\n\n\n\n

We don\u2019t yet understand why some people have some organ systems affected, and others have other systems.<\/p>\n\n\n\n

Long COVID is more common and more often severe than post-viral syndrome from other common viruses. We don\u2019t know why.<\/p>\n<\/div><\/div><\/div>\n<\/div><\/div>\n\n\n\n

We\u2019re not in the short rows yet.<\/strong> More than five dozen COVID recovery clinics have opened in hospitals and universities across the country, including the one at UNC. Some clinics study their patients, while all of them help coordinate and tailor care with experts in the multiple organ systems that could be affected by long COVID. They also help patients understand where their symptoms fall within the spectrum of the condition. The clinic helped me understand that I was suffering from a real condition and had not completely lost my mind. <\/p>\n\n\n\n

As of this summer, I have had three appointments at the clinic and more are on the way. I have seen a long COVID specialist and a neuropsychologist through the clinic. I have had an MRI, X-rays, blood tests, urinalyses, extensive pulmonologist exams and multiple visits with my general practitioner. The clinic and my general practitioner work to fill in the blanks of my illness. They provide prescriptions to help mitigate these symptoms they can\u2019t yet cure. <\/p>\n\n\n\n

People are kind.<\/strong> There was a time in the early part of 2022 when I developed a stutter. I didn\u2019t have a stutter as a child, but maybe you did, or maybe you have a stutter now. Maybe you know what it means to have the words for something in your brain but unable to get those words to come out of your mouth. You can see that it is frustrating for people trying to hear your words, too. You can see them try to fill in for you, or feel sorry for you as you work for two full minutes to say something profound, like, \u201cIt\u2019s hotter today than it was yesterday.\u201d <\/p>\n\n\n\n

If you haven\u2019t, just take it from me: It\u2019s not awesome. My job is communication. I have always taken words for granted. Take this from me, too: People are kind. People are so kind. There was the day at the grocery store when I spent 30 seconds trying to ask the teenager working the checkout for paper bags. I couldn\u2019t say paper bags, but I could say, \u201cI\u2019m sorry\u201d after I realized there was a line behind me. I looked up at her and saw she was smiling at me. Not the pitying smile I\u2019d gotten used to, but a smile of kindness. \u201cWhy are you sorry?\u201d she said. \u201cI\u2019m right here with you.\u201d <\/p>\n\n\n\n

My daily experience has become punctuated by kindnesses. The mug of lilies left at my door by a beloved neighbor. The octogenarian couple who fixes supper for us each week for months. The person experiencing homelessness who checks in on my health when I was able to return to my early morning dog walks, who notices when I haven\u2019t been sleeping or when I seem to be feeling better. <\/p>\n\n\n\n

Whenever I feel out to sea, I am washed home on a river of kindnesses.<\/p>\n\n\n\n

It takes a village, but some of us are on deserted islands.<\/strong> At one point, I struggled to make it from dawn to dusk\u2009\u2014\u2009even with the following help: My parents drove from an hour away to play with my children and take me to places like the grocery store; my friends brought dinner; my business partner helped with my work; my husband took our children to school and managed the basic pieces of living; and a group of doctors probed around to see what is wrong with me. <\/p>\n\n\n\n

I know that I am an exception when it comes to having a village. I live in a happy, walkable neighborhood filled with people I care about who help me. I have a husband, best friend and parents who set their own lives aside so that I may live mine. I have excellent insurance and can afford to bounce from doctor to doctor. <\/p>\n\n\n\n

At my first visit to the long COVID clinic, I learned that my case is \u201cmoderate.\u201d There are people who can\u2019t get out of bed to brush their teeth. There are people who take their children to school or go to the grocery store and then can\u2019t find their way home. <\/p>\n\n\n\n

\"\"<\/figure>\n\n\n\n

You never can tell what another person is going through.<\/strong> Since experiencing long COVID, I understand this saying in a whole new way. I don\u2019t look sick, but sometimes I struggle to remember where I am, or I have a panic spiral because I don\u2019t know where to sit at a restaurant, or I can\u2019t read signs. <\/p>\n\n\n\n

As an entomologist, I\u2019m used to people telling me their secrets, whether they realize it or not. I can tell a lot about you from those roach pictures you send me or the ants you\u2019re finding in your backyard. I can tell what frightens you, what delights you, how tidy your house is, what makes some of your dreams. I love these things about you. <\/p>\n\n\n\n

Since long COVID entered my life, I\u2019ve learned even more about others\u2019 secrets. People call me with their fears and their maladies. Like my urge to share my health status at Thanksgiving, they\u2019re trying to find someone to tell them what to do, or that they\u2019ll be okay, or maybe they\u2019re trying to be kind to me, to tell me it\u2019s not all so bad, see? <\/p>\n\n\n\n

Each of us has a lot going on that nobody can see.<\/p><\/div><\/blockquote>\n\n\n\n

Each of us has a lot going on that nobody can see. Our worries and our dreams are as important as the amount of space they take. The parent who can\u2019t sleep because her child is getting bullied at school is as anguished as I am in my sleepless doom spirals, maybe more so. It takes a lot to be human. <\/p>\n\n\n\n

Memory isn\u2019t everything. I\u2019ve come to see memory as a small bonus to the living experience. It\u2019s nice to have, but it\u2019s not always reliable. Take conversations with my brother about our childhood, for example, where he simply misremembers, replacing my character with our beloved, long-dead dog, Sadie. <\/p>\n\n\n\n

\u201cBut how did Sadie scale the fence to jump the railroad tracks?!\u201d I\u2019ll say. \u201cOnly a person can do that! And where would I have been all these years of your adolescence?! It was me!\u201d <\/p>\n\n\n\n

\u201cShe was a remarkable dog,\u201d he\u2019ll reply, completely serious. <\/p>\n\n\n\n

Now I battle with my own memory. It frightens me when someone I\u2019ve never met approaches me and talks about our conversation last week. A heavy, cold, eerie feeling settles in my stomach when someone mentions people I know I am supposed to know but can\u2019t think how. <\/p>\n\n\n\n

\n
<\/span><\/span>

A Recent Study
<\/h2><\/a>
\n

A recent study found that long COVID sufferers reported more than 200 symptoms. Shortness of breath and racing heart are common, and so is trouble with memory. Other symptoms aren\u2019t as common, but are also not unusual, including numbness and tingling sensations and trouble with speech. Even the eyeball thing is explained by the mystery that is long COVID.<\/em><\/p>\n<\/div><\/div><\/div>\n<\/div><\/div>\n\n\n\n

Though much is lost in terms of memory, fragments of experience, feelings and emotions remain. I can\u2019t tell you everything my husband has done in the last six months, but I won\u2019t forget his form beside me as I reach out in my hours of wakeful darkness because I am tired of being awake, and I\u2019m probably a little bored, and I want someone to let me know that they know I\u2019m there. I\u2019ll poke him just enough to wake him halfway. <\/p>\n\n\n\n

\u201cAm I snoring?\u201d he\u2019ll say. <\/p>\n\n\n\n

\u201cNo.\u201d <\/p>\n\n\n\n

\u201cIs everything okay?\u201d <\/p>\n\n\n\n

\u201cI\u2019m just awake.\u201d <\/p>\n\n\n\n

\u201cI can be awake, too.\u201d<\/p>\n"},"excerpt":{"rendered":"

Battling long COVID, a science writer and entomologist tries to understand what is happening to an overlooked specimen\u2009\u2014\u2009herself.<\/p>\n","protected":false},"author":1,"featured_media":2720,"comment_status":"open","ping_status":"open","sticky":false,"template":"views\/single-immersive.blade.php","format":"standard","meta":{"_acf_changed":false,"source":"","ncst_custom_author":"","ncst_show_custom_author":false,"ncst_dynamicHeaderBlockName":"ncst\/default-immersive-post-header","ncst_dynamicHeaderData":"{\"showAuthor\":true,\"showDate\":true,\"showFeaturedVideo\":false,\"backgroundColor\":\"gray_800\",\"subtitle\":\"Battling long COVID, a science writer and entomologist tries to understand what is happening to an overlooked specimen\u2009\u2014\u2009herself. Photography by Joshua Steadman.\",\"displayCategoryID\":5,\"caption\":\"\"}","ncst_content_audit_freq":"","ncst_content_audit_date":"","footnotes":""},"categories":[9],"tags":[395,410,719,1125,1231],"_ncst_magazine_issue":[],"class_list":["post-2653","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-stories","tag-eleanor-spicer-rice","tag-entomologist","tag-long-covid","tag-symptoms","tag-virus"],"displayCategory":{"term_id":5,"name":"Best Bets","slug":"best-bets","term_group":0,"term_taxonomy_id":5,"taxonomy":"category","description":"","parent":0,"count":54,"filter":"raw"},"acf":[],"_links":{"self":[{"href":"https:\/\/magazine.ncsu.edu\/wp-json\/wp\/v2\/posts\/2653"}],"collection":[{"href":"https:\/\/magazine.ncsu.edu\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/magazine.ncsu.edu\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/magazine.ncsu.edu\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/magazine.ncsu.edu\/wp-json\/wp\/v2\/comments?post=2653"}],"version-history":[{"count":1,"href":"https:\/\/magazine.ncsu.edu\/wp-json\/wp\/v2\/posts\/2653\/revisions"}],"predecessor-version":[{"id":5012,"href":"https:\/\/magazine.ncsu.edu\/wp-json\/wp\/v2\/posts\/2653\/revisions\/5012"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/magazine.ncsu.edu\/wp-json\/wp\/v2\/media\/2720"}],"wp:attachment":[{"href":"https:\/\/magazine.ncsu.edu\/wp-json\/wp\/v2\/media?parent=2653"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/magazine.ncsu.edu\/wp-json\/wp\/v2\/categories?post=2653"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/magazine.ncsu.edu\/wp-json\/wp\/v2\/tags?post=2653"},{"taxonomy":"_ncst_magazine_issue","embeddable":true,"href":"https:\/\/magazine.ncsu.edu\/wp-json\/wp\/v2\/_ncst_magazine_issue?post=2653"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}