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Karen Hollis shares her experience of living with chronic illness in a pandemic

SARAH MCCAMMON, HOST:

Since March of 2020, we've heard from Americans about how the pandemic has changed their lives, priorities and their perspectives. For Karen Hollis, it's made her appreciate the simple things.

KAREN HOLLIS: What I want to do is walk on the beach.

MCCAMMON: Karen Hollis lives in San Diego, where the ocean is never far away. But she doesn't go there. There are too many people. And to her, a walk feels too risky.

HOLLIS: Not many people understand the extent of the ripple effect of the pandemic. It's people with all kinds of chronic conditions who need care that are having it delayed, changed to the not prime treatment for themselves who are struggling.

MCCAMMON: Karen Hollis has a weakened immune system because of chronic lymphocytic leukemia. She was diagnosed with it about seven years ago. And it makes her especially vulnerable to COVID, which is why she's spent the pandemic mostly confined to home along with her husband and adult daughter. Around the time of the delta surge, her doctor reevaluated how to best treat her. And that meant shelving a therapy that would compromise her immune system even further until a time when community spread of the coronavirus was lower. And then came omicron. Hollis worries about the quality of her life and her family's.

HOLLIS: I struggle with fatigue constantly. I try to cook. I also try to write. I read a lot. I get incredible joy from reading. And it's a way to feel like my world is expanded and not constricted.

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HOLLIS: My biggest goal for every day is to walk a mile with Frankie, our pit bull dog. My daughter says she doesn't think she's heard me laugh as much in the past even 10 years as I have since we got him. It's very hard seeing my daughter making these sacrifices because she's depressed. She's been home for two years. She has this need to interact and to see new things and do new things and not feel confined.

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HOLLIS: In these later stages of leukemia, as I get more and more tired, I'm not able to do as many things with her as I did. And I worry that all the things we did together when she was young won't register as strongly in her memory as my incapacity now to do those things.

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HOLLIS: So I'm very motivated to try my best to think of ways to bond with her that don't require a lot of effort or energy. Sometimes, I don't have it, and that makes me feel really bad.

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HOLLIS: I have felt like abandoning everything I'm doing because I feel, there's no point. I'm going to get sick anyway. And if I do, I know what the statistics are for blood cancer patients. And they're not good. I think I have acceptance that I'm going to try everything I can to protect myself. But I think I have acceptance that I can't control it anymore.

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HOLLIS: The thought of death, perhaps, you know, in the indeterminate future really makes me want to finish my memoir that I'm writing because I started it as a kind of tribute to my daughter. And it's turned into something much more interactive between herself and me. And I see it as kind of a tribute to our relationship now instead of just to her. And so I want that as a memorial. I want that out there. And I know I could never have absolute physical safety as long as COVID circulates in any form. And that's OK. I realize now that I have a lot of inner resources and that I have a pretty full life, even though it's a restricted one and even though there are so many things I wish I could do.

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MCCAMMON: That's Karen Hollis of San Diego, Calif., sharing her story for our series Outbreak Voices. Transcript provided by NPR, Copyright NPR.