The Long Haul
Covid-19 was originally thought to be a quick disease. The virus came, did its damage, and, for those who survived, was gone in a month or so. But new research suggests that it can linger much longer than anyone thought. These seven survivors are living proof
This past July, doctors at the Toronto Rehabilitation Institute following up with their Covid patients noticed a troubling trend. While many patients were recovering just fine, roughly 10 to 15 per cent reported strange symptoms they just couldn’t shake. Some were respiratory, like shortness of breath and a feeling of constriction of the chest. Others were neurological, like tingling in the fingers or unresponsive muscles. There were issues relating to mood, like increased anxiety and depression. And there were reports of cognitive impairment, what patients described as brain fog—a general lack of clarity of thought, inability to pay attention, and forgetfulness. The reports were so consistent that the Toronto Rehab doctors established a dedicated outpatient stream for those sufferers, who have described themselves as Covid “long-haulers.” As for the cause of the long-term effects? So far, no one is sure. Theories include residual scarring, persistent inflammation and exacerbation of existing conditions. But concrete answers are still a ways off. In the meantime, the long-haulers soldier on and hope for a miracle.
Who she is: Amara Possian, 31
What she does: Campaigner, facilitator and educator
Where she lives: Wallace-Emerson
May 25 was the day I first felt symptoms. I had worked 14 hours the day before to finish off a big website launch, so I was expecting to be tired, but I woke up feverish, chilled and exhausted. My head hurt, my body hurt—basically all the symptoms of the flu, except my chest felt constricted and I had this strange sense of dread.
My bedroom is five metres from the bathroom, and by the middle of the day, I couldn’t make the trip without getting winded and having to sit down. It was as if someone were sitting on my chest and I couldn’t get a full breath. I messaged the people I was working with and asked, “What else do you need from me? I feel like I have 30 minutes of energy left.” The next morning, my partner and I went to get tested. While we waited for the results, my symptoms got worse. On the second day, I was lying in bed, feverish, thinking about how I didn’t have a will or a power of attorney. I realized that I might die. I tried to shut out those thoughts and focus on my breathing. A few days later, my results came back negative. Then, 10 minutes after that, I got another call saying I’d tested positive. I called my doctor but she couldn’t find my results and now suspects they were lost.
Over the next few weeks, my symptoms were all over the place. My fever would improve but my breathing would get more laboured. Or the pain would subside but I’d be too exhausted to get out of bed. After three weeks, I was finally able to walk down the stairs. It took another two weeks before I could make it around the block.
“I looked at the clock—I had worked right through lunch. Then I noticed an empty bowl. I’d eaten but had no memory of it”
I returned to work in mid-June, just two or three days a week, and quickly noticed some concerning symptoms. I was unable to come up with ideas or think straight. I’m a pretty good proofreader, but one time, I reviewed an email and thought it was ready to send. Then I reread it 10 minutes later and caught so many glaring mistakes. Sometimes I would read over something I just wrote and there would be an entire chunk of a sentence missing. Or I would message somebody on Slack about something pretty straightforward, and when it became clear they weren’t understanding me, I would read back what I wrote and realize it made no sense. It was really unsettling.
I’ve experienced lapses in my short-term memory. One time, I was working at my computer and saw that it was 4 p.m. I said to myself, Weird, I should have lunch but I’m not hungry. Then I looked across the table and saw an empty bowl, but I couldn’t remember having eaten. Nobody else was home. When I went to the kitchen, I found evidence that I had cooked an entire pasta meal for myself. I had completely forgotten several hours of my day.
Before Covid, I was working full time and taking on client work and teaching at Seneca. Now I have to be careful about my workload. I should be taking on less work, but I’m also anxious about money. My partner works in a restaurant, and most of his income was from tips, which are not a thing right now.
It’s been six months since I technically “recovered” from Covid but I haven’t been able to shake the brain fog and the exhaustion. I’ll sleep anywhere from seven to 10 hours a night but I always wake up tired. I’ve been working with my doctor but she hasn’t been able to find anything to explain it, so I’ve been referred to an internal medicine doctor at Sunnybrook. I’m desperate to get back to the way things were, but I don’t know when that will happen. I know it’s important right now to just be okay with the uncertainty of it all and to pay close attention to my body.
Who he is: Delroy Noble, 30
What he does: General contractor, Pearson Airport
Where he lives: Yorkdale
My mom, older sister, younger brother and I moved from Toronto to Jamaica when I was nine, and I’ve been a provider ever since. I started a side hustle selling phone cards, and I won a scholarship for scoring first in my county in a Grade 6 achievement test. It paid 120,000 Jamaican dollars, which was more than what most Jamaicans bring home in a year. We put some toward a general store my mom owned, some toward fixing up our house and the rest toward my education.
After graduating high school in 2007, I returned to Etobicoke to start a business degree at Humber, but when the recession hit, my mom fell on hard times. I withdrew my application and started pushing luggage carts at Pearson. It’s hardly glamorous—you wouldn’t believe the places people abandon carts—but it’s stable, unionized and keeps me active. I’m what you might call “tall with multiple dimensions.” Obesity, combined with my gender and blood type, A, puts me at a higher risk for severe Covid-19 symptoms. And, of course, being an airport worker makes me a potential superspreader. By April, however, Pearson, with more staff than travellers, felt like the safest place on earth. The emptiness was oddly comforting.
Then I started showing symptoms. At first, I attributed my runny nose and sneezing to allergies. Then I started feeling chest pain and shortness of breath. My mom and aunt had already lost their retail and cleaning service jobs. I knew that if I tested positive, we’d all have to quarantine, and my brother, Chris, would be out of work, too. It was a tough decision to get tested. Then my family members started losing their sense of smell, and my symptoms worsened: I felt feverish, winded, dehydrated. I went to get tested, and the nurse told me to go straight to Humber River Hospital. Fifteen minutes later, I was wheeled into the general ward.
“I used to be the guy my friends would call on moving day. Now I can barely lift my two-year-old niece”
Doctors put me into a medically induced coma, and for seven weeks, I saw and heard nothing clearly—just faint dreamworld discussions of emergency operations and my slim chances of survival. Finally, a voice startled me awake: “Give me your phone password so I can pay your bills.” It was my sister, Monique. I felt like Neo waking up from the Matrix. I had a line running through my veins to my heart, a tracheostomy tube down my throat, a feeding bag connected to my stomach, and catheters on both ends. Monique said I’d survived lung and renal failure and heart complications. She wished me a belated 30th. I couldn’t think of a better gift than having my life back.
All told, I was away from home for five months—three in hospital and two in rehab. Today, even after relearning how to speak, eat, walk and use the bathroom, I’m nowhere near back to normal. In a coma, your body focuses on survival and rations nutrients for the places that need them most, starting with the heart and brain. Meanwhile, the rest of you shrivels.
I used to be the guy my friends called for help on moving day. But my nerves, muscles and bones are now so deteriorated that I can barely lift my two-year-old niece. I feel like a robot with bad wiring. I have ankle braces and a walker with full back support. If I stand too long, I pass out, so I shower sitting on a bench. I’m told it’s all temporary.
In the ICU after I woke up, my brother, Chris, told me that the best thing I can do for the family is to be selfish for a change. “Go back to school, focus on yourself, fix your life up.” The truth is, I’ve been in a rut since I withdrew from business school. My weight ballooned from 300 to 460 pounds. I kept telling myself I’d get my weight and education back on track, and that’s what I’m going to do now. I know I can’t wait any longer.
Who she is: Monica Malta, 48
What she does: Professor of psychiatry at U of T and public health researcher at CAMH
Where she lives: London
I worked for a long time at Johns Hopkins in Baltimore. Then my husband and I moved to Canada to get away from the Trump administration and the craziness of the U.S. We live in London, Ontario, and I commute to U of T and CAMH. In the past, I’ve worked in places without a lot of health infrastructure—Mozambique and Uganda, among others—and I worry about the people there right now. My husband is a lawyer who works online with partners in Brazil. We have three kids together—aged eight, six and two—and my oldest daughter, who is 23, also lives with us.
Before the pandemic, I was active. I would take the train into Toronto and stay for two or three days a week at a hotel or an Airbnb. I worked long hours, sometimes even late at night or on the weekend to deliver a grant or analyze my data. I used to do gymnastics or yoga every day.
In mid-May, my oldest daughter caught what we assumed was the flu and had a mild fever for a few days. It might have been Covid, but we’ll never know for sure. I felt a bit tired, but I figured it was from not enough sleep, or work-related stress. Then the fatigue increased to the point that I couldn’t keep up with the kids or do much of anything. A few days later, I lost my appetite. I used to drink coffee all the time. Suddenly I couldn’t taste it, and didn’t want it. Then I got really, really sick. I was in bed for almost three weeks with chills and sweats and trouble breathing. Even standing up to take a shower was exhausting. I kept in touch with my doctor, who said that if my symptoms got worse I should go to the hospital, but I managed with Tylenol and other over-the-counter medicine.
“I keep having to ask for extensions because I can’t meet deadlines any more”
It took about three weeks for my condition to improve. But not all the symptoms faded away. I was extremely fatigued for about five months. I found it very hard to concentrate—brain fog, as it’s been called, is still a struggle. I’m working full time now, but I’m finding it hard to meet deadlines. I regularly have to ask for extensions because I can’t concentrate for as long as I used to be able to, and I take much longer to read things because I have to reread so much. My short-term memory and concentration are much worse.
Over the months, I have adapted along with the virus. In the beginning, I was anxious about when the symptoms would stop. After a few weeks, I was like, You know what, I can breathe. I decided that at this moment, I don’t need to be as productive as I was before. I need to look after my mental health and take time to heal and adapt. I’m a part of a Covid support group for other scientists who have been sick. There’s a lot of mis- and disinformation on social media, and the support groups really help combat that.
I’m still a bit freaked out about going outside for errands and other day-to-day activities. My husband or my daughter do groceries and pharmacy stuff. I worry about relapsing or getting Covid again. I’m taking my time to feel safe. I’m thankful that I live in a country where I can access the help I need. I worry about those people I’ve met around the world who aren’t as lucky as me.
Who she is: Tracey Thompson, 52
What she does: Chef
Where she lives: Parkdale
Pre-Covid, I had a pretty quiet life. I live in Parkdale with my dog, an eight-year-old greyhound–Great Dane mix named Gordie—after Gordie Howe. I’m a fast walker, and we spent a lot of time outside in High Park or down by the lake.
I worked as a chef at a small Parkdale restaurant with a really good group of regulars. I could try out new dishes on them. They are lovely people. Just before lockdown, I’d started doing a pop-up brunch collaboration with Collective Arts Brewery where everything had a beer pairing. We set up the summer schedule and we were all excited. It was a great patio, and we were like, This is going to be amazing.
On March 15, I woke up with a sore throat, and my stomach didn’t feel great. I wasn’t going to be working again until the 17th, so I was like, Okay, I’m gonna lie low. Then the lockdown came, and we decided to just shut down the restaurant for a while.
Initially I didn’t think I had Covid. What we were hearing was that it was a respiratory illness, and I just had a sore throat. I had no trouble breathing. By the next week, I had diarrhea and a fever—I soaked through my sheets with sweat—and this extreme fatigue, which was like nothing I’d ever experienced in my life. Then I started having shortness of breath. My lungs were going up and down, I was breathing, but I didn’t feel like I was getting oxygen. At that point, I called Telehealth and asked them what I should do. They told me that if I got very faint or my breathing worsened, I should go to the hospital, but otherwise stay home and tough it out. So that’s what I did.
“I still struggle with brain fog. I can’t read anything much longer than a tweet”
The first month is a bit blurry, to be honest. Looking back, I shouldn’t have been alone. I’m lucky enough to have a huge back patio where I could let Gordie out. And a few times her dog walker came by. But it was mostly a bare-bones existence—just giving her food and letting her relieve herself. We got through it.
Once my condition started to improve, I assumed that I’d have a steady recovery. But that hasn’t been the case. I have a few good days, then a few really bad ones. I’ve been extremely fatigued every day. I also still struggle with brain fog: I can’t read anything much longer than a tweet, and my short-term memory is shot. Recently, I’ve developed a heart problem—arrhythmia and tachycardia. Those have been the most frightening symptoms. I think about how I could be alone in my apartment and have a massive heart attack.
I’ve spent most of the last eight months in bed. There’s still no acknowledgment from Canada about Covid long-haulers. I’ve had no success in finding a doctor dedicated to what we’re going through. I’ve been to four different specialists and I have to figure out how to get care when new symptoms appear. I have no idea what’s going to happen next, financially or with my health, and I don’t know how to plan for it other than hoping to get better.
I recently sent Gordie to stay with friends in Loretto, north of the city. She’s on vacation, I’m saying, until things change. I can’t look after her in the way she deserves. It was a brutal choice, but it was for the best. It’s not like everybody on the street is wearing masks, and people want to pet her because she’s beautiful. I’m very alone without her, but I know she deserves better than staying locked down with me all winter.
Who she is: Ashley Comrie, 37
What she does: Social worker
Where she lives: Corso Italia
I have Crohn’s and ankylosing spondylitis, which are both autoimmune disorders, so I go to Toronto Western every five weeks for an IV treatment that blocks my immune system so that it stops attacking itself. When Covid hit, my husband, Kirk, and I decided to self-isolate together. He would go out every couple of weeks for groceries and that would be it. Luckily, we’re both able to work from home. He runs a digital production and design agency, and I’m a social worker with the City of Toronto. I work in housing and homelessness, and the pandemic meant I was busier than ever, working up to 16 hours a day trying to move vulnerable people into permanent housing and giving them support.
Kirk got sick first. On April 25, he went to the Loblaws at Dupont and Christie. A few days later, we got an email saying that our card was used on a day that an employee tested positive. Soon, Kirk was coughing and developed a fever. A day later, I woke up with a dry, deep cough. Two days later, my fever spiked to 104. I felt delirious. I couldn’t concentrate on work.
That afternoon, we went to the Covid testing centre at Toronto Western. I don’t recall much of it. I couldn’t remember my date of birth. They took a scan of my lungs then sent me home. The next morning, we got our results: both positive. The head of tropical diseases called and said my CT scan showed Covid nodules—little spots on my lungs—and I had to be admitted.
Kirk was sick but not as bad as me. He drove me to the hospital so we could spend a few moments together before I was admitted. That was May 4. I was okay for the first four days, but on the fifth, my oxygen levels plummeted. The machines started beeping, and I was transferred to the ICU. I remember being wheeled past people on ventilators. It was terrifying.
I was so, so sick. I lost control of my bowels. I remember the first time that happened—I looked at the nurse and I was like, What fresh hell is this? I developed Covid pneumonia, so I started taking antibiotics for that. I was in and out of consciousness because of the various drugs they put me on. My dry cough became horribly deep and wet. It felt like I was drowning. It was a struggle to breathe. At one point I was coughing up clots of blood.
My oxygen levels fluctuated, but luckily I didn’t need to be intubated. After four days, I got better and they transferred me to a step-down unit. But a few days later my oxygen levels dropped again and I was transferred back to the ICU. My lungs had collapsed. I was afraid to fall asleep because when I’d wake up, I’d be in a coughing fit, gasping for breath.
“I would try to say something to my husband and it was just word salad—total nonsense”
By May 22, I was still testing positive and on oxygen, but I had recovered enough to move to rehab at Bridgepoint. That’s when the neurological symptoms started. The left side of my face fell, as if I’d had a stroke. My left arm and leg became weak. The staff worked with me to help me stand up. I had to use a walker. I had to learn how to use a knife and fork again.
I realized that I had developed some cognitive issues. The occupational therapist asked me basic math questions, and I was unable to do them. I had to count backwards from 100, and I just couldn’t do it. I had trouble communicating in general: I’d say “hat” when I meant “cat.” And it was hard to look at a screen for a long time. I could watch a show for only five minutes before I got overwhelmed.
I took a series of mental tests, and I thought I had done just fine on them. But the staff said I hadn’t, and that I had an acquired brain injury from Covid. It was a total shock. How did I get a lung infection and end up with a brain injury? They think it was brain inflammation, but no one can really explain it.
On June 10, I finally got my second negative Covid test, and on July 2, I was sent home. Initially, I had this idea that I’d just resume my normal life. But I realized very quickly that things were not the same. On my second day back home, I was doing laundry and tidying up with the radio on. I got so overwhelmed that I started crying. It was too much to process.
I was having issues with my short-term memory, too. Once I was on the phone with a friend and they put me on hold. By the time they came back on the line, I had forgotten that we were even on the phone and was like, “Oh, did you call? My phone didn’t ring.” When I started to learn to drive again, I realized I couldn’t hold a conversation at the same time. I’d say something to my husband and it was just word salad. Total nonsense.
It’s been six months since I left Bridgepoint, and I’m still not back to work yet. I struggle with memory and processing issues. My heart rate gets too high and I get tired quickly. There is still weakness on my left side. I’m doing occupational therapy twice a week, speech therapy twice a week and physio once a week, some of it virtually. Therapy has helped. I’ve learned strategies to adapt. For instance, before all this, I was able to keep appointments and meetings in my head. Now I write everything down and need reminders.
I’ve recovered a lot, but I’m still struggling. I would say I’m at about 70 per cent of what I used to be. It’s so strange to have an illness like Covid, which can strike so differently: some people have it for two weeks and recover fully; some people have no symptoms at all. Meanwhile, here I am seven months later and I’m still trying to get my life back. My doctors have told me that the most improvement I’m going to make will come in the first year. So I’m trying to put in the work, but I’m also mindful of not pushing myself too hard. I need to allow my brain and my body time to heal.
Who he is: Bruno Iozzo, 73
What he does: Part-time excavator operator
Where he lives: North York
My birthday was on March 10. I have lots of family around me, but I didn’t want a big party. So I spent the day at home and shared a birthday cake with my daughter Gisella, my girlfriend, and her daughter. Gisella had followed news of the virus closely. All month, she’d told me be careful. Even though I’m a pensioner, I work part time in machine excavation just to keep busy. I live in a large seniors’ apartment complex popular with Italians, and I visit the same sala da biliardo every day and play cards with my three closest friends. I’ve known some of them since 1966, when I was just an 18-year-old immigrant, learning how to landscape.
I take pride in my independence, and I didn’t want to hear this coronavirus nonsense on my birthday. I thought it was overblown, and because of our genes—we recently buried my 104-year-old mother—I felt invincible. Gisella left my birthday frustrated. Truthfully, I was worried for my relatives back home. More than 150 Italians died on my birthday, most of them seniors, and the death toll almost tripled a week later, when I contracted the virus at the biliardo. Or maybe I spread it. All I know is that I was soon in a coma, and when I woke up, almost three months later, two of my three biliardo friends were dead.
I had no idea just how close I’d come to joining them in heaven. I barely recall Gisella pounding on my apartment door on March 28, screaming for help in the hallway. It took me 10 minutes to lift myself out of bed and answer the door. Gisella was shocked at how pale and frail I had become. I was rushed to Humber River Hospital, where I was sedated and ventilated. My kidneys were shutting down, my lungs filling with fluid. My oxygen level was at 80 per cent.
“My nephrologist is unsure if my organs will ever recover”
Gisella and my nephew Nino had joint power of attorney. On April 3, the doctors told them I had 24 to 48 hours to live. They helped my family with an end-of-life plan. Gisella was self-isolating but Nino was allowed to stand outside my room, in full PPE, to let Gisella say goodbye through a video call.
I don’t know how else to explain my recovery than as a miracle. We are traditional, church-going Catholics. I believe the prayers that Gisella collected from family and friends across the world brought me back from death.
I was heavily sedated until the end of May. It took more than a week to muscle out a word and open my eyes, and longer to remember basic things like where I lived. I have almost no recollection of the 104 days I spent in the ICU.
Gisella has barely left my side since bringing me home at the end of August. I lost 50 pounds, almost all of it muscle mass. My kidneys barely function. I have a stomach feed, and every day, Gisella connects a bag of protein formula to my abdomen to help me gain weight and build back muscle. Because the damage is Covid-related, my nephrologist is unsure if my organs will ever recover. I can’t drive any more—doctor’s orders—but I walk up to three kilometres a day with a walker. I can boil pasta and I’m getting stronger, so I can lift pots on my own. A personal support worker drops by twice a week to help me bathe. I rely on Gisella for everything else, but my independence is slowly returning. In November, Gisella drove me to Nino’s. Unannounced, I raked all the leaves and mowed his grass. They could see in my smile what it meant to me to feel useful again.
Who she is: Susan J. Roper, 73
What she does: Coordinator for a wellness company
Where she lives: Scarborough
In early March, an old friend invited me out for lunch. We hadn’t seen each other in months. She sounded terrible. We both jokingly said at the same time, “Let’s hope you don’t have the Covid.” A few days later, I started feeling terrible. My bones ached. Even just getting up off the chesterfield was difficult. My temperature reached 105 degrees and I could get only three words out before I’d start coughing. It was a dry, hacky cough—the kind that makes you feel like you might crack a rib.
Around this time, that friend called me and told me she was going to the hospital because she was having trouble breathing. She tested positive. One of my children phoned and told me to go to the hospital. I barely had the energy to get out of bed, but I managed to drive to Centenary Hospital for a test. Two days later, it came back positive.
I have a high tolerance for pain, but I’ve never been so ill in my life. One of my daughters would bring me food. She said, “Mom, I’ve never seen you look so sick.” I started to develop some strange symptoms. My left eyelid got all crusty, and before long I had full-on conjunctivitis. At that point in time, doctors didn’t think eye infections were one of Covid’s symptoms, but I’ve since gotten another eye infection, and the doctors have told me that other people with Covid have had them, too.
“My hair started falling out. My right knee, which I injured in a car accident as a teenager, has suddenly flared up”
I experienced the loss of taste and smell that a lot of people with Covid get. I also had a lot of hair loss. I would brush my hair and come away with a handful. In the morning, there would be hairs all over my pillow.
By the end of May, about two months after I first developed symptoms, I started feeling close to normal again. I was able to go back to my routine. I work from home full time for a wellness company and volunteer with three different organizations, including the Rotary Club, for a few hours in the evening. Before Covid, I would sometimes work 14 or 15 hours a day. But now I find I can’t take on as much work as I used to. I’ve cut back to just three days a week—Tuesdays, Thursdays and Fridays, since my volunteer meetings are usually on Monday and Wednesday evenings.
I also notice that not getting a full night’s sleep affects me a lot more now. Before, I might have occasionally stayed up until 2 a.m. if I was in the middle of a good book. Now, if I stay up an hour late, the next day I’ll be falling asleep at my computer by noon.
When I was a teenager, I was in a car accident, and my knee hit the door. I recovered quickly, and it hasn’t bothered me for a long time, but now it flares up and gets sore and achy whenever I walk up stairs. I have four steps to my front door, so bringing home the groceries takes a while. I have to walk one step at a time, like a child might do, and take a couple of trips so that I’m not overtaxing my knee.
The cough comes and goes. I feel bad when I start coughing in public. I’ll be in line at the grocery store and everyone will start backing away. I feel like I should be wearing a sign around my neck that says “I’m not infectious.”
I recently took part in an immunology research project at St. Michael’s Hospital. The doctors said that my cough, joint pain and conjunctivitis are common among the Covid patients they’ve met. It’s frustrating not being able to do all the normal things that I used to do. I just have to be more cognizant about getting enough sleep and planning my work schedule. I like to think that I was Superwoman and that I could do anything. I’ve always been the type of person who likes to help people. But now I really have to be more circumspect with my time and decide what I can do and what I can’t.
This story appears in the January 2021 issue of Toronto Life magazine. To subscribe, for just $29.95 a year, click here.