A drastically different life: Minneapolis woman shares her continued COVID struggle

CATHY WURZER: Glad you're with us here on Minnesota Now on MPR news. I'm Cathy Wurzer. COVID cases are going up again. New infections are rising just ahead of the holidays. While many people may shrug at that news, the risk of developing long COVID symptoms if you do get infected are real. About 10% to 15% of Americans are living with the brain fog and physical problems brought on by COVID many weeks or months after the infection cleared. It's estimated that more than 3,500 Americans have died from long COVID.

Now, a few months ago, we talked with Minnesota resident Savannah Brooks. She contracted COVID back in April at the age of 30. And she really hasn't been the same since. We wanted to find out how she's doing, so she's on the line right now. Hi, Savannah. Welcome back.

SAVANNAH BROOKS: Hey, Cathy. Thanks for having me again.

CATHY WURZER: For folks who missed the first conversation, how has COVID affected your well-being?

SAVANNAH BROOKS: Well, my life looks pretty drastically different than it did in March before I got COVID. I used to be a pretty elite athlete. I used to be a boxing instructor. And for me, the way that long COVID attacked my body specifically is both my central nervous system and my cardiovascular system. And so I have almost complete exercise intolerance. And when I say intolerance, I don't mean that I just get really weak and dizzy, although I do. I mean, I'll hit a certain point and I'll just pass out.

So the intolerance aspect of it is really quite intolerable. And that has obviously been incredibly hard. I also have really bad lingering brain fog. I specifically have really bad aphasia, which is when you forget words. Which is tough, because I am a literature and publishing lecturer at the University of Minnesota as well as a literary agent. It's just been this huge radical shift in how I think about my life.

Typically when we get sick, we think about being sick for a week, maybe a month. I've had to quit thinking about having long COVID as an illness and start thinking about it as a long term disability that might last years. It might last my whole life. We just don't know.

CATHY WURZER: Oh, that is so difficult. I can't even imagine. Are you getting help with that?

SAVANNAH BROOKS: I am extremely lucky to have a really supportive, really research-minded medical team. I didn't really realize how lucky I was to have that at the very beginning, because I hadn't spoken to a ton of other people with long COVID at that point. Like when we had first talked.

Now having met with more people, I realize just how many people aren't believed by doctors or don't have access to medical care, who live in rural areas. I have two to three doctor's appointments a week, and I see a handful of different specialists for random symptoms, which is a privilege a lot of people don't have. So that has been really amazing. So my immediate family and my really close knit circle of friends and my boyfriend, too, have all been amazing. Have been completely understanding. Have been much more understanding with me than I am with myself, to be totally honest.

CATHY WURZER: So you mentioned that some doctors don't believe patients, right? What do you make of, say, the government help around this? What do you make of society's view of this problem?

SAVANNAH BROOKS: I think the problem really stems from the lack of knowledge we have around long COVID. Because when people say they have long COVID, they can mean so many different things. So when I say I have long COVID, right, it's this really, really serious disability that affects every single part of my life. When other people have long COVID, it might be more irritants like keeping a cough. It might be a mystery disease because it's attacked your immune system and now you have all these random symptoms popping up from nowhere.

It might be a pulmonary issue. And so you feel like you have asthma for the rest of your life. It's so varied. And long COVID itself isn't actually a diagnosis. It's just an umbrella term. And I think just naturally when humans are scared, they opt into thinking about the least scary option. And the least scary option of long COVID is that you have the fatigue and you have exercise intolerance and maybe you have a cough for four to six weeks and that might be it, right?

And so I think that's what people default to thinking is that if they get long COVID, that's what it's going to look like. And honestly, I also just think it's a lack of information. I love that y'all are doing a multiseries interview just to talk about it. Because it's not talked about very much. And I think part of that is the information is changing so often that it can be tough for journalists to really nail down what's going on with long COVID without it being out of date two days later.

But I also think it's something people as individuals don't really know how to talk about being an adult with a disability, it changes your whole life when you develop one. I mean, it changes every single thing about your life. And that's not necessarily a bad thing depending on your mindset of it. But it's challenging and it's isolating. And it's hard to empathize with if you've never gone through it.

Which of course I look back at the way that I would interact with my friends who are disabled, and I'm like, yeah, man, I did not understand.

CATHY WURZER: And you have to almost experience it to truly understand it, sadly.

SAVANNAH BROOKS: I would say so. I have a handful of different diagnoses to try and cover the symptoms that I have. And one of them is chronic fatigue syndrome. And I think that that has just been an incredibly misunderstood disease. Because we really do think that we have the strength and the determination to power through fatigue. I always thought that I would have the energy and the strength and the physical ability to put in that extra amount of effort to get just that little bit more done, whether it be physical or mental or emotional.

And you know how I'm living right now, I'm living at the bottom of the well. If someone asked me for more, I just have to say, I'm so sorry, this is all I have.

CATHY WURZER: Government funding for research, of course, is important for many diseases. Do you think the government should be doing more to look into the causes and treatment for long COVID.

SAVANNAH BROOKS: Absolutely. I am afraid that what is going to happen with long COVID is going to look very similar to what happened with COVID. That we are going to try to implement policy retroactively. And it's not going to be enough. Because what we do know and the more and more we learn, it's pretty scary. And the long term effects of it are still just totally unknown.

But even if you look at the basic information of the way that long COVID can inflame your cardiovascular system, right, that is every single blood vessel in your body inflamed. That's catastrophic injury to you in a way that you can't even see, in a way that we don't totally know how to measure, either. If I didn't have a really supportive team, there is no way that I would be able to keep up with just the pace of what I need to do medically.

Right, and so you think about people who don't have that kind of support, who aren't getting that kind of support from their medical team, who aren't getting that kind of support from the government, you're essentially asking individuals to be their own researcher while they are disabled. And it's impossible. It's impossible to do.

CATHY WURZER: So you have had your entire life turned upside down by long COVID. You're trying to make some sort of a recovery. And yet most people, as I mentioned in the introduction, hear or read news headlines saying, COVID infection rates going up. They're like, yeah, OK, right. And you don't really see a whole lot of mask wearing out there.

When you are out and about, how does that make you feel? Because the rest of the world has just gone on and they're living their lives. And yet your life is forever changed.

SAVANNAH BROOKS: I think there is definitely a bitterness that could exist around that. But I got COVID because I made a mistake like that, right? I went to a large gathering. I went to a '90s themed prom and didn't wear a mask. I understand. I don't like wearing a mask, either. I am sick of it. I am over it. I just got my latest booster. And I probably wouldn't have remembered unless-- except for the fact that I'm so in tune in the medical community and doing so much medical stuff all the time.

I really don't blame individuals or hold that bitterness toward individuals. Because as individuals, of course there is a certain responsibility on us. We are essentially asking individuals to hold on their shoulder the weight of not passing on a disease that has taken over the world for three years. It's just the flip side of that is that that one decision can have radical consequences.

I never ever would have guessed that I would have gotten long COVID to begin with, but that it would have been so bad for me. And now, six months later, the research for that is actually pretty clear that healthy young people are getting long COVID and getting long COVID in a really, really intense way. Right, we know that 10% to 15% of the population is living with long COVID. We know that the majority of people who get long COVID are between 30 and 50. And we know that most of them are healthy. So if you fall into that demographic, right, that's a big mind switch from the early conversations about COVID.

CATHY WURZER: It's a lot to get your head wrapped around. Truly, truly it is. So I want to know-- final question here-- what are your goals for the new year? What are you thinking about?

SAVANNAH BROOKS: When I started physical therapy back in October, we set a goal. And my physical therapist, he was like, make it realistic. Right, don't say that by January, you're going to be walking 30 minutes on a treadmill, because you won't be. My ultimate goal is to be able to walk 30 minutes on a treadmill and not stop. And that might be a slow pace. And realistically, I am months away from that.

But my best friend is getting married in June, and I am in her wedding. And my goal is to be able to walk down the aisle, stand at the front, and dance. And obviously, I'll have to take breaks during that. But to be able to do that for the night. Right, that is my goal. That's what I'm working toward.

And that timeline will be a 15-month timeline from when I first got COVID. 15 months to be able to dance at a wedding. And yeah, hopefully we see some positive improvement.

CATHY WURZER: Well, we definitely are going to cheer you on and make sure that you are going to dance at that wedding.

[CHUCKLES]

SAVANNAH BROOKS: Thank you.

CATHY WURZER: Absolutely. Savannah, I really appreciate your time. I know it's a lot to talk about all this. It can be exhausting. So I'm grateful for your time. And we wish you all the best, really. Thank you so much.

SAVANNAH BROOKS: Thank you, Cathy, and the MPR team. Even for covering it. I think it's so important. And I'm always happy to get on the show and chat.

CATHY WURZER: Thank you. We've been talking to Savannah Brooks. She's a literary agent in Minneapolis. She came down with COVID back in April, and she's still suffering from symptoms related to long haul COVID. You can follow her story on her Twitter feed, @sbliltagent.