“When my blood pressure is low during dialysis,” Mihi V. shares, “the nurses put on Taylor Swift. It brings me back up to a normal level.” The college student, majoring in Physical Science and Communication, is a full-on “Swiftie.” She loves Taylor, she believes in Taylor and her music as a form of gospel, of guidance, and a purveyor of hope. No, she can’t pick a favorite song, and she can’t pick a favorite album—please don’t ask her. It’s like picking children. She loves Evermore and Reputation right now, but Reputation has to be “Taylor’s Version,” of course. The music and the singer’s own reputation both help her cope, not only with kidney disease, but with the everyday struggles of being a young woman growing up in America.
Mihi goes between dialysis and college and taking care of herself. Balancing three things can feel impossible at times, but she does it. Most of her schooling is online, but occasionally she’ll go in person when she’s able to. She’s hoping to get a transplant soon—that’s her main life goal at the moment. She shares that once that happens, she’ll take some time off to heal then will hopefully go to a 4-year college. And in the midst of all the craziness? There’s Taylor Swift to help her cope. “I love sports too!” Mihi adds cheerfully. “I’ve always loved watching football, and now…” she alludes to Taylor’s romance with Kansas City Chief’s quarterback Travis Kelce, which has merged the worlds of ESPN and female-led pop stardom in a way nobody thought possible. “I’m focusing on the good things,” says Mihi. “I can’t let the negativity cloud my mind.” Beyond the complications of kidney disease, she also has several other underlying conditions that can make things difficult. Some of them have arisen from the history of her first transplant, which Mihi shares bravely, matter-of-fact.
She first got sick when she was ten and a half. Then, she started dialysis for almost two years. In 2014, she was able to receive a kidney transplant—but was in the hospital for a month following. The kidney came from a deceased donor, and this time around she’s looking for a living donor. “It was a really traumatic experience,” Mihi states. “The kidney didn’t work.” It lasted in full for about a year in a half, then her body started to reject it. When it fully failed, she went on dialysis again. “There were so many hospitalizations, it was really scary. I wasn’t sure if I even wanted to get another transplant.” The biggest frustration for Mihi was the lack of education surrounding all of this. “I didn’t feel educated at all on it.” She started to do her research, and came across RSN and Lori. What was first a source of connection and deep understanding of her disease and other people’s experience became more than a resource—it became community. Mihi began volunteering with RSN, going to group meetings, attending the RSN support group twice a month on Zoom. She lights up when she talks about it. “A lot of people join through the US! I love it.” She just attended the Renal Teen Prom earlier this year. All of the work inspires her to head towards her career, her degree in communications a brick in the plan she’s laying to make the education and understanding even better for transplant patients. Mihi also wants to be a laboratory scientist, studying kidney disease and genetics, also in the path to help organ donors. “I want to educate people on how to prevent kidney disease,” Mihi urges. “I want them to learn what to do if you do get it, and to not be afraid of it.” She slows her voice a bit. “I don’t want anybody to feel what I felt. I don’t want anybody to feel afraid, or that you can’t do anything in life. You can still enjoy life! Sometimes you just look at it from a different perspective, or do things a different way.”
We chat more about the Prom. Mihi shares that she feels she’s become a part of a community through RSN. “It’s given me an energy I didn’t know I needed. So many resources.” Each year she’s gone (she can’t remember the times, she shares gleefully) Mihi brings a friend with her. “When you have a disease like this, you see who the real ones are.” She’s had the same group of best friends since Junior High. They’ve seen each other through everything and have stayed together. With them, Mihi feels she can be her true self, show up even on hard days and be seen, loved, just as who she is. Even if her friends don’t exactly share the same love for Taylor Swift as she does. “One of my friends loves Shawn Mendez. One likes Doja Cat. And the other Billy Joel.” She wisely shares that friends can love different things and sometimes it can serve as a point to understand the others better. They still connect on other things they all love: board games, watching movies, chit-chatting about life. And life can be difficult at times! During the past few years, Mihi has undergone several surgeries and got blood transfusions, as well as deal with the underlying conditions that affect the ease of her getting another transplant. She has to watch her sodium intake, her phosphorus and potassium—she can’t put salt in her food, but she uses a lot of herbs and spices. Her family is another community she leans on, just as much as her loving friends. “My mom helps me out a lot. My sister too.” When Mihi has energy, she cooks—making the food as spicy as she can. Laughing, she quips, “If it’s not spicy, I’m not about that!”
Mental health is another important point in Mihi’s life. “After the transplant, I had really bad Depression and Anxiety.” She started seeking help, and has found the most comfort in her communities (RSN, friends, her family)—and in Taylor Swift, of course. I ask Mihi what exactly is it about Taylor that gives her so much solace on the hard days? Immediately, she responds. “She came back.” For anyone unfamiliar with the lore of miss Taylor Allison Swift, in 2009 Kanye West intercepted her win at the Grammy’s. This started a decade-long feud that brought in the Kardashians (Kim Kardashian was formerly married to West) and at one point “exposed” Taylor via a leaked phone call for “lying,” making her out to be manipulative and untrustworthy on many standpoints. Mihi finds inspiration in Taylor’s comeback, more than anything. “People went against her. Then she took a break…but she came back stronger than ever. I love that. With my previous transplant this helped me, gave me hope,” Mihi shares. “[Taylor] came back no matter what she heard about herself, no matter what the media said about her. She came back.” She then goes into the drama with Taylor’s former manager, Scooter Braun, who sold her masters in 2020. “[Taylor] had to deal with her album being taken from her, and she re-recorded everything…she was dedicated. She took control of her life and her career. She could never let anybody or anything keep her down.” With a smile, Mihi continues: “She stood up for herself.”
Mihi shares that in some ways, she is still learning how to stand up for herself. She’s been through more than most young adults have, and though she has taken it all in stride, sometimes she can feel how it’s affected her confidence. Originally born in Sri Lanka, she moved to California when she was young. The move was difficult in itself, then she got sick. It was hard to navigate her culture and the “whispers” in her extended family about her—Mihi was sick, but she was also seen as a “know-it-all,” called “bossy,” just because she was trying to advocate for her own life, trying to learn as much as she could, and share it. “Taylor is such a great role model,” she explains. “She gives young women, young girls, a point of view that you’re going to have haters, you’re going to have people against you.” And like Taylor, Mihi has learned that she needs to believe in herself above all, no matter what anybody says. She’s also dealt with body image issues, with people telling her she needs to act and be a certain way. When Mihi noticed her doctors weren’t respecting her in the ways she needed, she changed doctors. “As a patient, this is my body. You may be the doctor, but I know my body best.” She’s been called names for putting her health first, for advocating for her future, and yet Mihi knows that at the end of the day, her ability to stand up for herself is what’s going to not only change her life, but help others as she continues on her journey.
The three words that Mihi chooses to describe herself are: talkative, fighter, and assertive. She throws a few more in there as well. Social, resilient. She laughs at herself, then shares how important it is to her to get to know people on a deep level. Adding “social” was necessary. Throughout our conversation, Mihi asks me about myself and I answer as quickly as I can each time, deeply moved and surprised at her insistence to get to know her interviewer as well as her interviewer’s getting to know her. “I’m really close with my nurses, doctors, my CPTs,” she says. Her main CTP (care tech practitioner) at the dialysis clinic doesn’t even like Taylor Swift, but puts the music on for Mihi because he loves her. When Mihi meets new doctors, she always asks them how they are. “There should be a communication here—I know they’re looking at me and they see a 23-year-old, someone young, but I want them to see me. I want them to be direct, be honest.”
Before we end our time, I ask what the last Taylor song Mihi listened to was. She laughs, hating the necessity to choose anything in regards to her muse, then finally shares. “Ready or Not.” Before that? “Delicate.” With a smirk, Mihi quips: “I’m in my Reputation Era right now.” Just like the Queen of Pop herself, Mihi is in her comeback phase, with strength and an unshakeable belief in herself. But unlike Taylor, she never went anywhere.
Maxine Phoenix is a freelance writer and she also volunteers for RSN.
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