“Is it okay if I go get the rest of the groceries on Thursday instead of tomorrow?”
My husband Chris had been tossing and turning all night, sweating with chills and a fever. I assured him that was fine and we both tried to go back to sleep. It was March 24, and we had already been voluntarily self-isolating for over a week. Talk of a citywide lockdown had sent everyone into a toilet paper hoarding pandemonium, and Chris had done a stressful grocery trip earlier that week to stock up on canned chickpeas and other essentials. I figured the crowded grocery trip had made him anxious. I figured wrong.
The next morning he woke up feverish and incredibly sick.
Symptoms started piling up. Within a week he’d gotten a presumed positive telephone diagnosis for COVID-19 and been encouraged to stay out of the hospital and not bother being tested unless he had intense difficulty breathing, so he will never be counted as an official positive case.
The rotating carousel of symptoms included a cough, fever and chills, chest tightness, aches, dizziness, exhaustion, and a “brain fog” confusion that was incredibly disorienting. He kept reiterating that this was like no sickness he’d ever had before, worse than mono had been. He would shake and shiver; the entire upper portion of his body ice cold, then be immediately hot and feverish. He was cold a lot — a bone-chilling cold we couldn’t seem to conquer — and incredibly weak, had no appetite, and even less energy. We were both really scared.
I immediately moved out of our bedroom and into the living room, and sanitized our tiny basement apartment in an attempt to control an uncontrollable situation. I would disinfect the sole bathroom and kitchen after every use. Chris could barely sleep, which intensified his symptoms. As did stress. Even a short argument or too much negativity could spike his temperature and bring in a flood of physical symptoms. I’m an anxious screenwriter and actor; prone to pessimism and self-deprecation, cheeriness does not come naturally to me. Until he’s better, I’ve become a damn Pollyanna.
In the first few weeks we settled into a routine — I would wake up as early as possible to bring him a hot water bottle, and a space heater hastily borrowed from friends ran in his room night and day. I would make him smoothies, healthy plant-based meals packed with as many nutrients as possible, and I took on all of the household chores which we usually split quite equitably. My life became that of a full-time caregiver overnight. I organized grocery drop offs with our loving and generous friends, signed up for a produce delivery service, and googled the latest information on treating coronavirus. We found some solace — and advice — in support groups with other “long-haulers” on Facebook and Reddit. Symptoms from one person to the next could be so different, though, we had to figure out some of it for ourselves.
I decided to avoid going anywhere in case I was contagious and could pass the virus on, so our best friends brought us groceries and took care of us. We also tried really hard to stay separate from each other so Chris wouldn’t potentially infect me, but it was challenging for him to be secluded in our windowless bedroom all day every day. The internet advises caregivers for COVID-19 patients to not share bathrooms but that’s impossible for us.
After two months we figured I was either asymptomatic or immune in some way, but let me reiterate that I work in the entertainment industry and haven’t taken a biology class in 15 years.
We assumed the illness would last a few weeks, but the weeks went on and so did the symptoms. At one point we found out the feature screenplay Chris and I wrote together had been selected for a pitch showcase at Cannes. I laughed at the dichotomy of this wonderful news with our current situation. No one would be flying to France — we’d be lucky if Chris could make it down the street without getting winded. When we started self-isolating I had been so excited to finish a bunch of writing projects, and Chris was TA-ing a course and finishing his PhD. Suddenly our lives’ top priorities were zinc pills and ginger tea.
Over two months in, a doctor and naturopath both told us that Chris had probably recovered from the actual virus and was now dealing with post-virus inflammation. They recommended he get tested to test this theory and make sure he wasn’t still contagious. The test came back negative. He’s taking a number of supplements and vitamins to help fight the post-viral symptoms, eating a daily avocado and grapefruit and the healthiest, most boring diet imaginable.
Slowly the symptoms have lessened and become less frequent, but they also return out of nowhere. Chris has been able to sit outside behind our apartment in the mini parking lot we’ve taken to setting our camping chairs up in to read and get some sunshine. His appetite is back to normal, and he’s started having the energy to make his own smoothies again. I’ve resumed grocery shopping on my own but still keep to our apartment for the most part. But Chris is still incredibly unwell. We tried to take a walk around our block to test out our shiny new masks, and he was wiped for the next couple days. Even a Zoom call with friends can deplete his energy. There’s no way he could be working right now, and my own workload has been significantly downsized so I can continue caregiving.
We still don’t know when Chris caught the virus. Was it that crowded grocery store? Two weeks before that on public transit, the university he teaches at, or the last time we ate at a restaurant? But more importantly we also don’t have any idea how much longer Chris will be dealing with this. As soon as we can access antibody tests we would both like to be tested, to make sure we have them.
It’s been over three months — today is day 100. Three months of symptoms, anxiety, and an unnerving lack of information. Three months of me sleeping on an Ikea couch (1 out of 10, would not recommend). Three months of putting our lives on pause, hoping that the good days become more frequent and stretches between bad days get longer and longer.
Toronto has relaxed quarantine rules and with summer in full swing, I worry that many more people will get sick. There are more active cases in Ontario today than there were when Chris got sick. Not everyone who gets sick will have an experience as bad as Chris’s, but his case was considered mild — he hasn’t been hospitalized and his breathing has been manageable. Some people will have an experience far worse.
I worry about people who don’t have the health-care access we do, who live alone or are parents or sole caregivers. I worry about customer service employees whose lives you’re endangering by going for a pint, or hanging out at the mall. So please be mindful of the risks as patios and salons are opening, as people are finding masks too annoying. You may get sick, or you may unknowingly infect someone whose life has to be put on hold as they battle this terrible virus for months on end. This has been the most harrowing experience in our 12 years as a couple and I wouldn’t wish it on anyone.