Tracy Patience is the executive director at Dickensfield Amity House, a community support and family resource centre in north Edmonton.
Patience contracted Covid in November of 2020. She said, “I woke up feeling a little weird with a runny nose. It felt like a minor cold.” Patience booked a test—at this point, anyone with symptoms could still get tested at the public health facility—and checked her temperature, which was slightly elevated.
“Because it was Friday, I was supposed to pick up my dad. Usually we go get his lottery tickets; we do a little running around.” Patience called her father and said, “You know, Dad, I just, I don’t know. I’m not going to come today.”
Patience continued, “By Saturday morning, I didn’t feel good. I was tired. I made my coffee and I couldn’t taste it clearly. So I knew I knew that this was it. I didn’t get the text [from Alberta Health Services] till Sunday. But I was positive.”
She explained what it was like to be infected with Covid. “I was tired, but I couldn’t sleep so I just lay in bed. I would get exhausted after the smallest activities. I would try to clean the bathroom, but I couldn’t clean the whole room.” She had to talk herself through the task. “One: wipe the sink. All right, let’s go sit down for a bit. Two: go back in. Sweep the floor. Okay, let’s go lie down for a bit.” She continued, “Exhaustion was the worst part of it all.”
Patience’s major symptom, besides exhaustion, was a severe headache. She said, “They were all over [my head]. Like it would explode.” Her doctor called in a prescription for Tylenol-3, but it didn’t help with the pain. That was the only medication she took. She did not have significant lung or breathing issues, despite having asthma.
Contact tracing and reporting had both fallen apart by November 2020 when Patience acquired Covid. Patience said, “I called my doctor. He was at home with Covid.” She filled out her own form, which only asked which health-care professionals she had been in contact with the previous 48 hours.
Working through a Covid infection
Amity House runs on a very small budget with few staff, so Patience worked from home through her illness. After the 14 day quarantine period, she returned to work in person. She said, “You just go about your business again. Go back to your normal routine.”
Christmas is a busy season at Amity House. The week she returned to the centre, they were handing out and delivering WECAN food baskets and diaper baskets to clients. Patience almost passed out four times while she was working. Finally, one of Patience’s staff members said, “You need to go sit down right now.”
Amity House’s offices are on the second floor, and as Patience was leaving, she said, “It was sort of chaos. And I just fell against the wall.”
She added, “I still didn’t have the energy to move. I would come home, hit the couch, and that would be pretty much it.”
Long-Covid and lingering health effects
For the first few months after getting Covid, Patience would come home from work, sit down on her couch at 6 p.m., and not move much until the next morning. Despite being so exhausted, Patience would wake up a lot during the night.
Then in the mornings, Patience had a hard time getting up. “You know how if you’re awakened in the middle of the night, and how you kind of wake up and you’re so groggy and dizzy, and like you go to walk, and you’re stumbling—that was me every morning.” This disorientation would last for about 30 minutes and still happens.
Six months after her infection, Patience said her health is around 50 per cent of what it was prior to Covid. She gave an example. “We love going hiking. We’ve always gone to the mountains. When we were there in the middle of April [2021], hikes that were really easy to do before were now really hard.”
Patience has headaches three to four times a week.
Phantom smells are one of the hallmark signs of long-Covid. “I can smell bad smells. Oh my God, cigarettes! Cigarette smoking that doesn’t exist.” She explained, “One night I sat up in bed and asked Rick, ‘Do you smell cigarettes?’”
He replied, “No, there’s no cigarettes.”
Patience asked again, “Are you sure? It’s really strong!”
Patience continued, “And if someone is smoking though, I can’t smell anything.”
The taste of food also changed. Patience said, “I still can’t believe everything. Some things are really wonky. Last time we were here, [the interview took place at Moxies, on the patio] my beer tasted like vinegar.” Patience thought perhaps the kegs had gone bad during the previous restaurant closure. She asked her daughter to taste it. “I think there is something wrong with this beer.” Her daughter confirmed the beer tasted normal.
Patience said, “It’s so frustrating.” Six months after she was infected with Covid, the taste and smell symptoms still affected her.
Other symptoms continue to dog Patience. The exhaustion is continuous and is both physical and mental. Patience said, “When I’m mentally tired, things are worse.”
Brain fog has been described by many long-Covid sufferers. Patience said, “I just feel stupid. For a long time, I had a stutter and I still do if I’m mentally tired. Right after [the infection], I couldn’t finish sentences. A word would get stuck in my mouth. I know what I was trying to say, but the first letter would get stuck and would just keep repeating. I would try to say it, but I would be frustrated and just stop and then maybe be able to say it a bit later.”
Other neurological symptoms persist. Patience explained. “It’s just really weird. It kind of feels like [I’m] dizzy, but it’s not. Dizzy was the wrong word. But it was the best word I can think of. But it’s like this, this sort of electrical feeling.” She clarified and described it like the static charge you feel when you put your hand over a Plasma Globe toy. “It feels like that over my brain. Sometimes it would start on my side, at the top of my spine, and will come up into my head.” She placed her hand at the base of her skull and drew her hand over her head, forward to her forehead, widening her fingers as she went.
Other neurological symptoms persist. Patience explained. “It’s just really weird. It kind of feels like [I’m] dizzy, but it’s not. Dizzy was the wrong word. But it was the best word I can think of. But it’s like this, this sort of electrical feeling.” She clarified and described it like the static charge you feel when you put your hand over a Plasma Globe toy. “It feels like that over my brain. Sometimes it would start on my side, at the top of my spine, and will come up into my head.” She placed her hand at the base of her skull and drew her hand over her head, forward to her forehead, widening her fingers as she went.
“It’s so weird,” she emphasized.
Because the symptoms are nebulous and ever changing, long-Covid sufferers begin to wonder if they are real. Patience said, “For the longest time, I’m like, ‘It’s just all in your head.’’ She would tell herself, “You’re scared. You’re probably just doing this yourself.” Despite the self-doubt, she now knows it is real. She reminded herself, “I don’t think I can make myself not breathe. I don’t think I can make myself exhausted….”
Other symptoms of long-Covid are easier to quantify. Like other long-Covid sufferers, Patience lost a significant amount of hair. She said, “It’s a lot thinner than it was.” For many people, auto-immune illnesses appear, reappear, or get significantly worse. Patience held out her hands. “I have super bad eczema—psoriasis. My mum had psoriatic arthritis. And our hands look like this. But since Covid, they were bad. I am sure it was triggered by the Covid.”
Patience’s hands were raw, red, and cracked. “This is a good day. A good day, but they’re really sore. The sanitizer? It’s not my friend,” she said, referring to the ubiquitous alcohol-based hand sanitizer that is at the entrance to every store, medical facility, and public bathroom.
Getting medical attention has been difficult. Between Patience’s work, family (she has two children at home), and caring for her aging father, she has not had time to go to her doctor for her symptoms. She said, “I talked to him on the phone one time, about my dad. And he asked how I was doing and I said, ‘It’s still hard to breathe.’”
He advised her to go to the emergency room to get an X-ray. Because Patience was still coughing, she couldn’t go to a regular clinic to be tested. Patience laughed and said, “I haven’t found any day with that many hours to waste. So I guess we’re just where we are.”
Even if she had gone to get an X-ray, it’s unlikely it would have shown any damage. For the vast majority of long-Covid patients who did not have significant lung involvement during their infection, X-rays do not show any lung damage. For many people, the lack of measurable or visible symptoms means their doctors don’t believe them.
Patience said, “I was so scared. I wasn’t scared of dying. Right? Because the odds were always, always, always in my favour. But I am scared I will have this lingering crap forever.”
Expendable citizens
On Wednesday, May 26, 2021, former premier Jason Kenney announced, “We’re finally getting back to normal, and I think it means the best Alberta summer ever. This is due, in large part, to the miracle of modern medicine—the Covid-19 vaccines.”
While reducing public health restrictions based on vaccination status was sound public health policy, the Alberta government based loosening restrictions on the status of people’s first dose, and also announced that further restrictions would be based on the number of people in hospital with Covid. This essentially acknowledged that people would continue to be infected with Covid, and that some people would be collateral damage.
Patience discussed how the public conversation around “getting back to normal” from the pandemic completely ignored people like her aging father. “It’s just not talked about at all. It’s like they don’t care. Because that’s what it feels like. Right? It feels like they don’t care.”
Patience showed me a photo of her father on her phone. “This is my dad. He’s 84 years old. He’s got pulmonary fibrosis, so he wouldn’t survive this. So he is expendable. I’ve been extremely protective of him.” Many people who minimize the effects of Covid point to how the majority of deaths are among those who were considered medically fragile, or had comorbidities.
She described the emotional impact of knowing that society considered her father’s life collateral damage. “Yeah. Most of us will survive… But my dad. You know, when people say ‘most of us’, they’re not the most. My dad is wonderful. You assholes.” She added.
“I don’t want to sacrifice him.”
He’s fully vaccinated. He got to hold his great-grandson for the first time. That’s so exciting. He was born in January. But he couldn’t see him. Couldn’t see him and hold him and meet him until two weeks after his second dose.”
“It was amazing.” Patience showed me another picture of her father. In this one he is holding her grandson. She said with joy in her voice, “He was so impressed with how strong he was. Dad said, ‘He’s really squeezing my finger.’” Patience paused. “This was not possible without science.”
While Patience said she feels much better now, she still tires easily, is weaker, has brain fog, and her headaches and vision issues persist.
Patience’s father passed away on Feb. 8, 2022. Because of the vaccines, he died from causes other than Covid. She was grateful for the additional two years she was able to spend with him.