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COVID-19: Our Experience

My experience participants
August 10, 2020

We now have over 5 million cases of COVID-19 in the U.S. That number is more than just a grim statistic. Each one of those “cases” is a real person, with a unique experience. And each of their stories has something to teach us – not only about the virus, but also about ourselves.

Below are excerpts from some of these stories – first-person accounts from people who've been impacted by COVID-19, in one way or another: patients who've recovered, and those who are still battling symptoms; loved ones of patients who survived, and loved ones of those who didn't; and people who have seen the virus take a toll on their lives in other ways. 

This is their experience.

Akhink Omer Akhink Omer was the first patient we featured – at a time when it was widely believed that COVID-19 only seriously affected the older population and those with underlying health conditions. At only 31 years old and with no previous health issues, Akhink had to be hospitalized for 8 days: “I’m still surprised I was one of first in my state to have COVID-19 … I’ve always been very healthy, so the fact that I got this was shocking to me and very eye-opening to my extended family. If I can get it, anybody can.”

She has fully recovered, but urges others to take her story to heart: “To anyone out there still not taking this seriously I want to say this: If you aren’t afraid for yourself, then think of someone you love – your partner, parent, child, or friend – sick, in pain, gasping for breath and alone, in a hospital room by themselves. Having been there myself, I can tell you – it’s not something you want anybody to experience.”

Irish PorterIrish Porter's husband, Trent, was in the hospital recovering from a heart and kidney transplant when he first heard about the novel coronavirus: “He told me, ‘I think we need to be concerned about this virus that's spreading in China.’"

Weeks later, Irish, their son, and Trent contracted COVID-19. Trent’s condition worsened. “He was put on a ventilator at UF Health Shands Hospital – the same hospital where he'd had his transplants. Doctors there put him into a medically induced coma. Before Trent went under, we talked on FaceTime. For the first time, I broke down and cried in front of him. He reassured me that he was going to be ok. He said, ‘This isn't it. I'll see you later.’”

After six days on a ventilator, Trent made good on his promise: “The first thing he said to me on FaceTime once the tube came out and he could talk was, ‘I'm still here. Just like I said.’”

Billy RhotonBilly Rhoton had been experiencing severe COVID-19 symptoms for days when, exhausted and struggling for breath, he surveyed his options:I had read so many stories about people being put on ventilators and never coming back. So I asked myself, do I die alone in a cold hospital bed or do I just do it here at home? I picked up my phone. I dialed 911. I never pressed SEND.”

Billy eventually recovered from his physical symptoms, but then started feeling the psychological impact of his experience: “I can't maintain a conversation. I get headaches. I have panic attacks. I'm coming apart. This is the part that no one talks about … I can't get away from thinking about COVID-19.” Once his doctor gave him a diagnosis of PTSD, Billy began to see a path forward. “Just acknowledging and recognizing what's going on with me, talking about it, has helped a lot. Once I could see it for what it is and call it by its name, that made a big difference.”

Linda CassellLinda Cassell shared her story of painful separation.It’s been three months since I’ve been able to hold my husband’s hand or kiss his beautiful, bushy white eyebrows.” Charles, her husband of 37 years, lives in a skilled nursing facility, which was placed on strict lockdown as the virus began to spread. “Neither of us knew during our last visit that this virus was about to keep us apart…. No visitation for the foreseeable future. I will never forget those four words. What does that really mean? How long will this last?”

Linda worried about the toll the separation would take on her husband: “He tells me that he understands why the virus is separating us, but he also tells me that he is lonely and feels isolated. And I know that being separated is also affecting him on a physical level.” But she vowed to stay positive and hopeful: “A friend asked me if I thought I would see my husband before he dies. You bet! I trust and believe that even though I don’t know how or when, the day will come when he and I will be together again. I truly believe this is not how a love story like ours will end.”

Stephanie ScurlockStephanie Scurlock’s Instagram post – meant as a simple tribute to her husband, a doctor on the frontlines – quickly went viral. Her three young children, standing in their father’s scrubs, held a simple sign "Not all heroes wear capes. Some wear scrubs, like our daddy. Stay home." The shot became an important reminder of the danger faced by frontline workers and their families during the COVID-19 pandemic. "I hope it reinforces why we all need to stay home right now – regardless of our age or our own risk factors for COVID-19. It takes all of us working together and doing our part to flatten the curve. If you don’t want to do that for the most vulnerable among us or to help healthcare workers by reducing the impact on hospitals, then maybe you’ll do it for our children.”

Michelle BenvenistiMichelle Benvenisti went through COVID-19 alone in her NYC apartment: “Somewhere in the middle of my battle against COVID-19, I began to think I was going to die. And even worse than that – I thought I was going to die alone. Anyone who lives alone has likely wondered and worried at some point how they would get help if something serious happens to them. COVID-19 turned that fear into a stark and startling potential reality for me.”

She fought severe symptoms and, at some points, could barely breathe. “I felt like I was down to just 10% of my usual self, and I didn’t have the security of knowing someone was on the other side of the door to check on me and ensure I was alive.” Tenacious and industrious, she developed strategies for support and communication that became her lifelines.

Kevin HarrisKevin Harris  describes himself as a "tough guy", strong and active at 55 years old, but he found himself at the brink of death with COVID-19. After symptoms that first seemed like the flu, Kevin’s condition worsened, and he ended up in the hospital for 13 days before finally recovering.

He warns others to take the virus seriously: “This virus is a beast like you’ve never seen. It felt like it had me by the throat, and it attacked with a vengeance. It’s the worst thing I’ve seen or experienced in my life. It is not a joke. It never occurred to me I would survive this, and I remember thinking at one point, ‘I don’t want to die like this - alone, isolated, in terrible pain, and scared.’”

Joe FuscoJoe Fusco comes from a large, close-knit Italian American family; for years, 20-30 of them would gather, twice a week, at his mother’s house for dinner.Those dinners bound us together. But in late February or early March, one of those dinners set off a chain of events that would end up devastating my family. That’s where we believe we unknowingly passed COVID-19 to each other.” In the end, nineteen of his family members were infected, seven were hospitalized (including Joe), and five of them – including Joe’s mother and three of his siblings – died from the virus.

In their grief, Joe and his family are working to make sure that other families don’t have to endure a similar loss. They are donating plasma, working with researchers, and trying to raise awareness of the dangers of the virus: “The next time you hear someone say COVID is a hoax or no more serious than the flu, think of my family or better yet – tell them about us. My sisters, brothers and I were all strong and healthy before this happened, and it still killed two of my siblings and nearly took me.”

Geneva WoodGeneva Wood was 90 years old when she got COVID-19, and it hit her hard. After she refusing a ventilator (“I told them I didn’t want to rely on a machine to keep me alive”), doctors believed she might be approaching death. They brought in her family to say goodbye: “My children say they came to the hospital, suited up in protective gear, and were allowed, one by one, to come into my room to hold my hand and tell me they love me." But miraculously, Geneva hung on.

“My family kept coming to visit but they had to stay in a containment room and could only see me through a window. They said I reached for them and cried and it was brutal for us all, but I don’t remember any of that. The first thing I remember is waking up at some point and feeling hungry for some of my mom’s homemade potato soup. That’s when we all knew I had somehow miraculously turned a corner.”

Valerie Wilson Valerie Joy Wilson’s COVID-19 symptoms were relatively ‘mild’: “I was sick for 16 days in all, but it wasn’t linear. I’d wake up one morning thinking I was doing better, and then I’d slowly decline throughout the day. Then I’d feel better for a day only to worsen the next.”

Though her physical symptoms were not intense, her anxiety was difficult to manage. “You don’t want to overreact, but you also don’t want to miss something and wait until it’s too late to get help. So you stew like a nut case. It’s a terrible mind game, and I didn’t do well mentally with it.”

Allison RosenAllison Rosen is a cancer survivor who is immunosuppressed and at greater risk of developing a severe case of COVID-19. Though isolating is not a new experience for her (she had done it before to protect herself during cancer treatment), “this threat feels very different than cancer. Eight years ago, my doctors and I were a team, and together, we decided how we were going to keep me safe and get me healthy. I felt in control of my fate…This time, I’m not in the driver’s seat.”

Allison urges everyone to take the virus seriously and take steps to protect not only themselves, but others around them, especially those who are vulnerable. “People like me need people like you to help us stay safe. Our lives are in your hands … There are a wide range of chronic illnesses that put people at higher risk for COVID-19, and given how common many of these conditions are (high blood pressure, diabetes, among others), the odds are that someone you care about is at risk.”

Rachel BaumRachel Baum was diagnosed with COVID-10 more than 4 months ago – but she's still experiencing symptoms like debilitating fatigue, breathlessness, extreme nausea, and others, that can keep her bedridden for days. “After 100+ days of dealing with these symptoms that come – off and on like waves, lasting and leaving with no pattern – it finally dawned on me that maybe this is my life now. At this point I’m really not sure this is ever going to go away. It just might be my new normal.”

Rachel is trying to come to terms with the possibility that COVID-19 may have turned into a chronic illness for her. “For my own mental health, at this point I’ve just decided I have to give up the idea that I’m ever going to fully recover. I've got to stop treating it as if I'm going to be back to where I was before because I really don’t know if that will ever happen.”

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