‘It feels like it could hit you any minute from a different angle’: Diocese of Montreal’s Lee-Ann Matthews on living with—and beating—COVID-19

By Tali Folkins

 

In recent weeks, many Canadian Anglicans have been working hard trying to find ways of doing church while minimizing the spread of COVID-19. But at least one has experienced the disease in a more immediate way. In mid-March, Lee-Ann Matthews, youth project coordinator/web and social media coordinator for the diocese of Montreal, began to feel unwell. A test for the coronavirus came back positive, and Matthews would end up spending weeks grappling with a disease that has killed roughly 1,500 Canadians. On April 15, the Anglican Journal spoke with her about her experience.

This interview has been edited for length.

How are you feeling now?

I’m better, but it’s weird—I’ve had a couple of relapses. It hasn’t been a nice, clean recovery. Normally you get the flu, and you take a few days and get better. With this one, it’s like, “Oh, I’m better.” “I’m worse.” “Now I’m better.” “Now I’m worse.” And I keep Googling it, but of course Google doesn’t know, because nobody knows—because nobody’s six months out from this thing. Anyway, I go on YouTube and listen to other people’s stories and I’ve heard other people describing a similar kind of recovery, so that’s comforting.

How did your experience with COVID-19 start?

I was on holiday, my first holiday with my partner since our little dog died—she was 18 and we had never been able to travel together because of her special needs and everything. It opened up this opportunity for us to travel, since we were both free. We did a lovely cruise; we went to New York City and we went to Florida—every single place, basically, that’s considered a hotbed of COVID, we visited. We left March 6, and at that time some people who were more intelligent and cautious were saying, “You shouldn’t go.” And I was like, “I am healthy as an ox and we live a very healthy lifestyle. I’m not really worried, plus I’ve already paid in full.” So anyway. Totally cocky, we went on this vacation.

We are super nerds—in bed by 8 every night, washing the hands like maniacs, vegan diet, don’t drink alcohol—we’re insanely healthy and insanely careful, and did all those things, because of course they were amping up those measures. Disney didn’t have any sanitizer—we were sanitizing our own hands. Anyway, we did all the stuff that you would do even pre-pandemic and started to feel a little bit ill on the cruise ship, but nothing weird—nothing to make you think you’re in trouble, because we didn’t have a fever, we didn’t have a cough. But my partner started to have some really weird feelings, like a sensation of heaviness in her body that she’s never had before. And that was very alarming. At first she actually thought it was anxiety. And so we were just trying to calm her down. As the pandemic stuff was amping up on the ship, people were starting to talk more about it, and we were of course following social media, so it was in our consciousness and then she started to feel ill. We didn’t know what it was, but I said, “I’m sure you’re fine—you have no fever, you have no cough really.” She said, “I have a bit of allergies.” Anyway, we got off the ship thinking we were relatively well.

We were very fortunate to get off the ship, because the person in front of us was sidelined. They check you for fever, and if you have a temperature, they don’t let you off, which is also terrifying. Got off the ship, got in our car, thankfully. Weren’t told to self-quarantine or anything by the ship—they basically just said “Good luck,” which was terrifying. We knew that there were some provisions in Canada that were being made around self-quarantining for 14 days. We were going to go home and self-quarantine, so we did a quick pop-in at a grocery shop in Albany, New York, washed our hands before and after that and got home and self-quarantined.

You got off the boat in New York City?

Which was a blessing—we didn’t have to infect anybody on the plane, thanks be to God on that one. Drove home, didn’t infect anybody. That day I started to feel as if I was really, really dizzy and, like, it must be from the ship. I didn’t have seasickness from the ship, but I had really big sea legs. This is when I actually got home. I was kind of OK on the way home, my partner was OK on the way home—we were really just excited to get home, because we were scared like everybody was scared. The border [officials] didn’t give us any documentation. They just said, “Are you ill?” And we were like, “No, we’re not ill.” And, “Where have you been?” “OK, bye.” I expected a pamphlet thrown in my window or something. I guess they’re doing that at borders now. Anyway, at that time we were kind of alarmed at how loose they were around letting us back into Canada, but relieved because they let us back into Canada.

By that time would it have been mid-March?

We returned on the 15th. So things were just about to hit the fan at that point. Schools and everything had been shut, but they’d done church, I believe, that Sunday in my diocese. They were just about to stop church—they stopped it that afternoon. Everything changed, I think, the 15th.  So we got home and started to feel a little unwell, but, again, I didn’t have a fever and I wasn’t coughing. The next day I still didn’t have a fever, and I wasn’t coughing, but I wasn’t great. I started getting a fever and started coughing I think Tuesday. I do a live show on Facebook every Tuesday morning for my work, called Live with Lee-Ann, and after that show I was not feeling well at all. But I still didn’t think anything of it, because I think denial happened, or I don’t know what. But it really wasn’t until the weekend that we decided to get tested.

I was very conflicted about getting tested because it means you have to go out of your house—you have to break your quarantine. Also, I was having fever and I was totally unwell, so the idea of being in a hospital for several hours was so incredibly anxiety-ridden. But people were saying to me, “You have to get tested,” and I wanted to do my civic duty. So I got tested. Ultimately the only thing, I think, it changes is that we can be a statistic that might be helpful for people in the future in terms of [whether] I did expose other people by going out, even though we were in our car. We went to a hospital that was jammed with people—that experience was horrible. And they put us in an elevator with other sick people—that was shocking. I probably made other people sick in that elevator even though they gave us masks. That was really scary. They crammed us in.

It was several hours in the hospital, and then the next day I found out that I tested positive. I was really shocked just because I think denial happens. I was like, “What?” And I stopped working at that point. Up until then I was like, “I’m going to just keep working,” and all of a sudden I was like, “I’m actually in danger here. I’m out.” And I didn’t work for the rest of that week. I just slept and slept and drank tons and tons of water. Luckily I was hungry the whole time, so I was able to keep eating healthy food and nourishing my body. But I was just sleeping and feeling like absolute garbage, and coughing. I have asthma and was having to take all my asthma medication, so I was terr-if-ied. Terrified. But I never had to go to hospital. I just stayed home and eventually started feeling better—and then feeling worse and feeling better. I’m still kind of in that cycle now, and some days I still have to take a nap. I’m normally a very athletic person. I’m not the person I was, but I think I will be again—I just think it takes time, you know?

When you say you felt poorly, do you mean exhausted?

There were so many weird symptoms. I had this lost-sense-of-smell one, which people sort of didn’t know about at the beginning. I was on the phone with my brother, and I’m like, “I don’t smell anything.” I thought it was just the flu, and then when they diagnosed me—“Yup, lost sense of smell is totally now known as a symptom.” So loss of sense of smell, extreme sense of fatigue, body aches and pains and a strange sensation in my chest, unlike a chest cold—”sponges in my lungs” is how I would describe it. Shortness of breath, of course. A cough. I still have a desire to clear my throat, and a feeling like something is there, which is new, especially when I’m tired.

Was there any time that seemed like a turning point in your bout of COVID-19?

Technically—legally—we were clear of COVID as of last Saturday. I got the email on a Saturday two weeks after we were tested—they just sent us an email saying “Follow this protocol.” If you’re symptom-free for 24 hours and fever-free for 48 hours, you can go back out into the world, which is terrifying, because I got symptoms again after, so does that mean…? I do go for a walk every day now, but the morning of that Saturday I remember waking up and saying, “I think I want to do some yoga today,” which I hadn’t, and “I want to resume my meditation practice.” I had had no desire. So I would say that Saturday, which was almost two weeks after I got tested, my body said, “Today you might want to resume your breathing and yoga.” That was a great feeling, and I’d say since then—even though it’s gone back a little bit—I still wake up with a sense of being more myself now.

What would you say was the main symptom?

For me it was the [difficulty] breathing, just because of what we know of people having to be admitted into hospital for breathing difficulties. So any kind of breathing issue would trigger a lot of negative thoughts, which would trigger anxiety—“What’s going on there?” and then, “Oh, am I going to be OK?” But luckily the breathing, for all intents and purposes, was OK. My partner would be like, “I’m going to count your breaths. Your lips aren’t blue.” They told us what to look for. My lips weren’t blue, my fingers weren’t blue. It was just a scary feeling. I don’t think I was ever in danger, thank God.

It manifested differently in your partner, didn’t it?

Yes. As I said she had that very extreme reaction on the ship where she had this sense of weakness in her arms and legs, and she’s never been somebody who’s had an anxiety attack, but she’s like, “Is that what that is?” And I’m like, “Quite possibly,” because so many people have described [feeling] like they’re going to die. She’s like, “I feel like I’m going to die.” And we read afterwards that people felt like they’d been drugged. She said that’s how it felt.

I’ve heard there’s a vast range of symptoms associated with this disease.

Right, neurological symptoms. And you get a headache. I had lots of pain and pressure behind my eyes. But her sense of it was like it was neurological, because she wasn’t controlling her limbs properly. I don’t know—I’m not a doctor. It is very mysterious, and that’s the scary part—if you just don’t know where your symptoms are coming from and it feels like it could hit you any minute from a different angle. But I feel like getting further from diagnosis and contracting it makes you feel a little safer each day, because most people, I think, fall gravely ill within the first 14 days.

Was her bout less severe than yours?

Well, it was more severe, because when she had it, it was really intense—it was a ten on ten that particular day. And there was another kind of relapse when we got back—she was making some cookies and her arms got really weak. And her cough persisted but she never had fever, she never lost her sense of smell and because she doesn’t have asthma she wasn’t as irritated in her breathing. But she did have a big, big difficult onset that resolved faster, and I feel like she’s gotten a bit healthier than me, faster.

How did your experience of COVID-19 compare to any experiences you’ve had of the flu?

It’s so hard to say, because of the psychological aspect of it, because there’s so much fear. Any time you fall ill, you’re a little nervous, but you’re like, “Oh yeah, this is just that.” But because there’s no “This is just that,” I was really on high alert, and everybody dying every five minutes, and somebody’s 30 and they’re dead—people keep telling you these things. It was really hard to measure what part of it was just my fear, and what part of it was the physical part. I was flat on my back for three weeks. Even if you get a really bad thing you’re better in four days or whatever—who takes three weeks off for work? Thank God I was able to work from bed or whatever. If I’d had to go to work I don’t think I could have done it. I’d say the duration of it was longer and worse than anything I’ve ever had.

You mentioned to your Facebook group being visited by the police. Would you like to share that experience with readers of the Journal?

Sure. I think any kind of crisis brings out the best and the worst in people, and so many people out of their own fear, but also out of concern, have been reaching out to us and have been really, really kind. People wanted to know how things were going and to offer their support and care. I think that’s very important. But there’s probably someone who was a little less kind, and I don’t know what’s going on for them, but somebody did call the police and say I had been out. Because they had my name, and they came to our house at around 20 to 10 [at night]. Maybe it’s because I’m sensitive or maybe it’s because I had COVID, but it was a big deal, and to have the police shining flashlights in your house when you’re sick—

You and your partner were both woken up by this, right?

It’s bedtime. At 20 to 10 when you have COVID, you’ve been sleeping for a few hours. I’m like, “Oh my gosh, I can’t open the door—I have COVID.” They’re like, “We know—that’s why we’re here.” I’m like, “What?” At first I was thinking, “Is everything OK with my mom?” because she lives upstairs. I’m like, “What’s going on? I can’t open the door.” “No, no, no, we’re here for you, your neighbours called the police because you were walking around today.” “No, I wasn’t walking around today, so no.” “OK, but you can’t walk around.” “Got it, but—”

They could have totally de-escalated this by saying “We totally appreciate that, ma’am, and we apologize if there’s been a miscommunication, but we just need to let you know that somebody may have misidentified you.” But no, they continued to persist that I’d been out and my partner’s like, “Well, we put the garbage out, or the compost out—is that OK?” Or, “We collected groceries from the front step—that’s what they may have seen.” “No, you’re allowed to do that—you’re just not allowed to go for a walk.” They may have repeated that five times, about not going for a walk, and they still ended on, “And don’t go for a walk.” We haven’t been for a walk, we’re not well enough to go for a walk and we’re sensible enough to not want to contaminate anybody. It was a really big downer, and I totally got sicker after that. I got back in bed. Every little thing just took the life out of me, so that was really discouraging. I called the police station the next day and I politely just said that I needed to make sure that my human rights were part of this equation. They couldn’t tell us who [the informant was], and I said I realize they’re anonymous, but if this anonymous person or any other person makes another call I need you to have at least some kind of photographic evidence or what time of the day this had happened—“Three o’clock at this corner you were spotted” or something—and they kind of said, “We appreciate that, but good luck.” That was a downer, a complete downer.

What do you make of that?

Somebody may have misidentified me—“Oh, there’s a lady with a black jacket and a black hat.” OK. Fair. But a normal person would not call the police—they would probably call me. People know each other around here. They’d be like, “Lee-Ann, what are you doing?” That’s what I would have hoped for, you know? Call me out. But either somebody was too afraid to call out this person they thought was me or somebody is just crazy. Or both. I don’t know. I had to let it go. I did feel quite paranoid that night. I felt sort of violated. But I did a Facebook post the next day and so many of my neighbours were like, “That’s not the kind of neighbourhood we live in.” I do know that many of my neighbours delivered food to us, they loved us and so, you know. There was definitely a tension there between the kind of neighbourhood I thought I lived in—and how the police made me feel that night.

You also mentioned this experience affected your prayer life. Could you talk a bit more about that?

Sure. I’ve actually been thinking about it because I do a thing called Supper Club, and next Sunday night on Supper Club I’m going to share with the group my personal prayer practice, because I’ve been sharing with that group as well that my prayer life just fell apart. Not [all] kinds of prayers. I usually wake up in the morning and do yoga and pray and meditate. And I  told you that’s how I knew I was getting better—I had the desire to do that again. And I was wondering why it was that it fell apart. I was so depleted. It depends on the kind of prayer. I lie in bed and say thanks to God every night—that’s different. I could still do that, just talk in dialogue with God. But the idea of trying to open up an intentional giving-and-receiving type of relationship with God through yoga or prayer or breath, I didn’t have it in me—I was just flat. I really felt that other people’s prayers were carrying me through. I was so grateful, so whoever was praying, I totally felt that. I wasn’t praying for me, but you all were praying for me. And that totally carried me.

So if anybody feels that praying for somebody doesn’t do any good—

Oh yeah. I totally felt it. And I kept saying, “Thanks, you guys, my prayer life sucks right now, so I really appreciate that you guys are doing this for me.” It really, really helped.

You’ve mentioned feeling fearful several times. Did your faith help you with that?

I think my faith helps me with everything. Even when I don’t feel like I’m having a great prayer life, I know that God is totally carrying me. So of course when I was terrified I was always just saying to God, “Lord be with me.” I just know that God is with us even when things are the worst—especially when things are the worst. That definitely gave me a sense of comfort: “I know I can get through this, with God’s help.” That helped me, but I wasn’t doing anything intentional, like lighting a candle and doing a meditation. It was just knowing that God always has it all. Even through all of this horrible stuff.

Has this experience changed you? And are there any other thoughts you’d like to share?

I think, personally, everything is changed for all of us. We’ll never ever be the same, and I’ll never be the same. Having COVID or not, we’re all changed. And I don’t think that’s always a bad thing. As I was saying yesterday on my Live with Lee-Ann show, especially given what we know about the statistics of decline in the church, we were called to change before we had this crisis. Now God gave us this thing, and we’re forced to change. We’re forced to change the way we connect radically, and that’s a gift. That’s something I’ve believed for a long time. I think, as Christians, these are gifts that God’s given us.

They’re things we’re being asked to grow through?

Yes. We’re being asked to die and be born again in a new way. And I really hope that when we’re allowed to be in face-to-face gatherings again that we won’t forget the ways that we were able to learn and connect through this. I find these are very fruitful spiritual learning opportunities. So I just hope we don’t forget the meaning we got from this.

Again, in terms of how you’re doing, are you now well enough to walk around? How much better are you?

Some days have been 100% better—I’m like, “Oh, this feels like me,” and I get cocky and do a lot of stuff. And then it’s like, “This does not feel like me.” Some days it goes down to 50.

Will you have any sort of follow-up medical appointment?

You know, I never saw a doctor this whole time. I never had an evaluation from a physician other than somebody sticking that [swab] up my nose. There was never any kind of evaluation, which I thought was a little disconcerting. I probably would have taken some comfort in having a doctor or physician say, “This is going to happen.” I had that encounter with that thing up my nose; I had a phone call from a physician, and then I had basically a standard email that just basically gave me the directives of, “Get on with your life, you should be fine.”

We don’t really know what it’s like six months out from this thing, and it’s not really all that linear. They don’t test you again, which is kind of disconcerting—that’s the part that I hate. When I go for a walk, which I’m technically allowed to do, my face is covered, and I’m walking far from people, but still that scares me. I wish I had a negative test.

I heard a doctor say on the radio, explicitly say, the way we assess that a patient is no longer contagious is through two consecutive negative tests—this is a doctor here in Montreal. I feel like calling and saying “Actually, that’s not what we’re doing.” What we’re doing is testing people once and saying, “If you feel well and after 14 days are symptom-free, then you’re fine.”

 

Tali Folkins has worked as a staff reporter for the Law Times and the New Brunswick Telegraph-Journal. His writing has appeared in The Globe and Mail and The United Church Observer.

 

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Anglican Journal, April 24, 2020