When The Stakes Are Life Or Death Monica Brown Learns To Ask For Help

To become an organ donor visit HRSA or to learn more about how organ donation works visit UNOS.

OPENING: Monica Brown grew up Catholic but had deep Jewish roots. Monica’s great grandparents died in the holocaust, but her grandfather escaped by boat to Peru becoming  part of the Jewish diaspora there. Monica’s Peruvian grandmother was Catholic, so though her father was Jewish, Monica’s mom attended Catholic school.

MONICA: She was haunted by nuns who would pinch her and tell her that her father had horns that she would go to hell if she wasn't baptized so one time when her mother and father were out of town she borrowed a cousin’s communion dress and got baptized so she would be saved.

Monica’s parents didn’t want their children to have that conflict, so they raised Monica and her siblings Catholic with a virgin Mary in every room of the house. 

As a child Monica was very imaginative and impressionable.

MONICA: So when the nuns taught me we are born with original sin I took that very seriously. It was in some ways the basis for my belief I needed to be good but I certainly wasn’t and that was certainly born out at my catholic school.

As a first grader, she got in trouble for splashing through puddles and extorting popsicle money from a classmate. She had such a deep sense of guilt. But at confession she was too ashamed to share her sins with the priest. So at night she would pray. 

MONICA: I would pray and pray and pray I thought in my young mind that if I could talk to    the devil the fallen angel if I could convince him to be good and return to heaven. I had some form of OCD, I remember making the sign of the cross again and again so I could go to sleep and I wouldn't have nightmares.

She was preoccupied with ideas of good and bad, sin and suffering. 

MONICA: So often I never felt good or worthy enough. I wanted to understand what it meant to be a good person and not a bad person. On one hand I grew up feeling like I had to earn love by being good. On the other hand my upbringing made me tough so I do not like to feel vulnerable or weak.

So when it came time to ask for help, the very idea felt ridiculous to Monica. This is a story about how we resist help, even when the stakes are life or death.

This is 2 Lives. I’m Laurel Morales.

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Monica’s mother Isabel and her wild and creative spirit  had a profound influence on her. She embraced her Peruvian culture as well as her parents' religions. Around her neck she wore a cross, a star of David and Tumi, representing her mother’s indigenous Peruvian heritage. From their home in northern California they would travel to Peru for months at a time. Isabel loved to paint large abstract figurative pieces that reminded her of home. 

MONICA: So I grew up surrounded by the colors of her canvases and images, shapes…So they were paintings that invited you in to explore, but sometimes disturbed that delighted me. They're just part of my imaginative landscape as well in my dreams. 

Monica remembers her mother as joyful, vibrant, and fun. Isabel loved to dance and perform. 

When Monica’s mother was pregnant with her, they discovered she had kidney disease. Eleven years later,  when she was pregnant with Monica’s younger brother, Isabel was hospitalized for high blood pressure due to complications from her disease. Monica’s grandmother died of that same disease when she was only 41, a couple years  before dialysis was invented. It’s called Autosomal Dominant Polycystic Kidney Disease, or ADPKD. It causes fluid-filled cysts to grow in your kidneys. ADPKD is a progressive disease. It typically doesn’t affect a person until they’re older Then it gets worse with time. 

MONICA: It was terrifying to have a mother who was sick and so young and vibrant to have an awareness of mortality and danger.

Isabel shared stories of her own mother…

MONICA: My grandmother died when my mother was 11 years old. She would tell me stories of her mother being so sick all of her memories were laying in bed with her mother. So of course when my energized mother started to spend more and more time on the couch and be more and more tired I was very worried.

Isabel’s kidney disease progressed rapidly in her late 30s and soon she started going to dialysis, which did for her what her kidneys could no longer do, essentially cleaned her blood. For several years her mom was on a list for a kidney transplant. In the meantime she went to dialysis three times a week.

MONICA:  And dialysis saves people's lives. But for her, it was a really difficult thing. Um, because it was very hard for her to be tied to a machine. Mm. Um, she had a very free spirit and mind. And so it took up a lot of space to go through that and to be in the space of having your blood removed and cleaned and put back for so many hours a day and to feel tethered to a machine. And yet it was a life giving machine. And I know she, and I am very grateful for it, but I knew early on that this was something she endured so she could live. And it was also hard on the body. She would be exhausted from dialysis and it would take time to recover and then she'd have more energy the following day and then go through the cycle all over again. 

Monica went to college at the University of California Santa Barbara, a couple hours from her family. When she came home she’d sit with her mother while she was on dialysis and try to distract her.

MONICA: She always was desperate to have company. It made the hours go faster when she was tied to the machine. 

When Monica graduated from college she got a job reporting for a newspaper in Guadalajara. It was then that her mom finally received the news she was going to have a kidney transplant. 

MONICA: And she called me and it was a challenge to call. I think she called me at work at the newspaper, cuz I didn't have a phone where I was staying. And she said, Monica, I am, I'm so nervous. I'm scared. I'm gonna do this. Will you be there when I wake up? And I said, I will. I promise, I love you. It's going to be okay.

So Monica flew home to be with her for the surgery. She knew the process could be a long one as sometimes  the body rejects the new kidney at first. 

MONICA: Once my mom got her kidney transplant she lived wild and she lived boldly when she got over her rejection, she went back to school. She painted even more. She ended up getting a BFA and an MFA in painting. She traveled very often back to Peru.

Monica went back to school to get her PHD in English at Ohio State University. That’s where she met Jeff Berglund. They met at a picnic. Monica brought the salsa.

JEFF: She had very red eyes. She had rubbed her eyes with her serrano pepper filled hands. I was attracted to her sense of humor about it. I thought she was beautiful. I also thought she was interesting and creative and she was someone I wanted to get to know.

And so they did get to know each other and fell in love. As she was imagining a future with Jeff she knew she should get tested for ADPKD. Her grandmother had it. Her mother had it. The suspicion that she had it had lurked in Monica’s head since she was a child. 

She went to her doctor and the tech did an ultrasound of her kidneys. And Monica could see right away the cysts.

MONICA: Even on an ultrasound an untrained eye could see that there is something wrong. I knew to my bones that I had it. So it felt like a confirmation rather than a revelation. 

JEFF: I got a phone call from her after she had met wi her doc it was heartbreaking on one hand but it was something she deeply felt…she was part of this bigger destiny of her mother and grandmother. I learned very quickly meeting with her doctors they were incredibly hopeful. The science behind transplants the likelihood people would live many years beyond a transplant was increasing.

Knowing it was a progressive disease Monica and Jeff didn’t waste any time. They got married right after graduation.

MONICA: So Jeff turned 30, finished his PhD and married me all in the same week. What a week? And by then I knew that I had let's see by right before, it's hard to even say it. Um, right before we got married, I had confirmed the diagnosis of A D P K D like my mother. 

Monica knew she wanted to have a family so they tried to get pregnant right away.

MONICA: Because of my mother's experience with challenging pregnancies, I knew it would be important to know. So when I went to a nephrologist the message was to have children early while my kidneys were in good shape.  We got married in September. And I believe by January, I was pregnant with my first child.

She had her first daughter when she was 27 and her second when she was 29. Both Monica and Jeff landed tenure track teaching jobs at Northern Arizona University so moved to Flagstaff to start their lives. 

MONICA: We were a whirlwind. We were both professors trying to get tenure. We had two little kids. We were writing books and teaching and very involved in our jobs and our community.

Monica says she was going full speed ahead parenting, teaching LatinX Literature and African American Literature, and when she wasn’t teaching she was writing children’s LatinX books. Her books about Celia Cruz and Pele and a little girl named Marisol from a mixed race family had become so popular a production company was even considering making Marisol into a TV show. On top of all this Monica was making tenure. So she compartmentalized the ticking time bomb that was her kidney disease – went to doctors appointments but had no time to dwell on it.

At the same time she received this amazing news about her promotion, Monica learned her mother’s health was declining. Isobel had cancer, a heart condition, and now after 15 years her body was rejecting her transplant kidney. But nothing would stop her from celebrating Monica.

MONICA: She came with my Tia Ruthi from Peru and they yelled and whistled and did all sorts of things when I got my promotion.

Within a few months Monica got a call from her dad in northern California.

MONICA: He just said, if you wanna see mom, you gotta come now cuz we lived 12 hours away and I remember we drove like through a snowstorm and made it…I remember how remarkable it was she had her beautiful hands unchanged even though the rest of her was hooked up to machines in the ICU, but her beautiful painted red fingernails and hands I could stroke I could tell her I loved her, it was ok and she could stop fighting.

Monica’s mom died at 63. 

It was around this time that Monica decided to convert to Judaism for a few different reasons. 

MONICA: In my experience of Judaism and exploration of reform there’s no emphasis on heaven or hell but rather the world we are in…and it held such great appeal to me because of the emphasis of ticum calam the idea of healing the world and I wanted to give my children community especially with this idea that I may not be there for them. 

Not long after her mother’s death Monica, now in her 40s, started to feel more and more fatigued. If she could squeeze in a nap, she wouldn’t feel energized afterwards.

MONICA: I didn't have a great awareness of what was happening in my body. I didn't get enough sleep. I had a lot of stress. I took on too much. … my body started to register the progression of my ADPKD and my kidney function was lessening and lessening. 

One night she was in such severe pain she had Jeff drive her to the emergency room. The doctor on call told her one of her cysts probably ruptured. But Monica knew enough about the disease to disagree. . She asked for a kidney consult, but they sent her home. She called her internist, who also downplayed her pain, and suggested she wait it out.

MONICA: If 10 is passing out, I am a nine. Uh, it is agonizing. And again, I was told that it feel worse before it feels better. I was, you know, at that point moaning and I've consulted with two different doctors...And finally my sister actually told me, if you don't go to the doctor, you are going to die. If you don't go to a hospital, you're going to die... I told my sister, I'm not going back to the ER, cuz they told me to go home. And I stupidly was a, was afraid of feeling shamed like you don’t need to be here.

Some of those critical voices and feelings of unworthiness had crept in. Her sister urged her to get a third opinion. Finally Monica talked to her  nephrologist and he told her to go to the emergency room. Since she did not want to go back to her small town hospital, her husband drove her to the next closest hospital two and a half hours away. By the time they arrived she couldn’t walk. 

Her enlarged kidneys made it difficult to see the appendix. But she wound up having a ruptured appendix and could have died. 

The appendectomy was the first of 12 surgeries Monica would have in three years.

MONICA: I had these very large football sized kidneys and they were unwieldy and putting pressure on my internal organs and also on the wound where I had appendicitis. So I developed a hernia… And then in early 2018, they discover a tumor in my neck, in my parathyroid. And I have a few days of worrying about whether or not I have cancer waiting for a biopsy. 

Turned out she didn’t have cancer, but while all of this was happening her kidneys were losing function. Her doctor put her on the long wait list for a deceased kidney donation. Monica’s brother-in-law Brent, who had first positively tested as a potential kidney donor, was no longer a match. Monica had to prepare for dialysis, but that turned out to be a challenge. 

MONICA: My surgeon attempted to put an AV fistula, which is when they join an artery in a vein. So you can do dialysis and it failed in my wrist. And so then I had a second surgery, um, in an attempt on my upper arm to create a workable AV fistula. And then we found out that it worked, but it was too low in my arm. So they sort of had to open me up from the elbow to the shoulder to lift the whole vein. And then on top of that, there was a little bit of a blockage. So then we had a minor vascular surgery to do an angioplasty…on top of that, I had been waiting for years now for a deceased kidney donation. But part of my challenge was that I had antibodies to a lot of people. 

She thought of her mother when she was terribly sick in the hospital. She remembered a  late night conversation about what happens after you die – what she believed, what Monica believed.

MONICA: She said, ‘Monica, and she had this beautiful accent. Monica, when you have been through what I have been through. It is not, whether you believe in God, you see the face of God.’ I only now understand what she meant by that. It was about the nature of God, yes, but also love, life, transcendence and what gets us through pain and lets us survive any number of things because there is a beautiful connection to something divine or magical that gets us through or what got me through so excruciatingly painful moments. MUSIC

It was November of 2018, two years since she’d been put on the waitlist for a deceased kidney. Thirteen people die each day waiting for a kidney transplant, according to the U.S. Department of Health and Human Services. And it was getting to the point where Monica could be one of those people. She was sick, she still didn’t have a working fistula, and she kept developing hernia’s along her incision sites due to her enlarged cystic kidneys. With so little kidney function, it was hard for her body to heal.

MONICA: And I was hanging on with very impossibly low kidney function, which meant I was slowly being poisoned in my body. My husband and my therapist and one of my very best friends staged a sort of intervention because my husband, Jeff wanted to put out a call asking for a living donor for me…

The three of them pleaded with Monica on the phone, by email, and in person asking her to post on Facebook an appeal to her friends for a living kidney donation.

MONICA: They wanted to put a call out. And I did not, I felt ashamed somehow that it would be a shameful thing to do. I certainly did not feel worthy of asking for such a thing. I still don't. They felt that I was worthy. They finally in a weak moment, um, got me to agree to let them decide what to do and take it out of my hands. And I was so sick that it couldn't stay in my hands. I was kind of just surviving day by day. And then Jeff wrote, a letter about me, about my work as a teacher and as a children's author. And I think my friend Annette edited it. I still didn't want them to post it. 

Monica resisted because at her core Monica did not believe she was good enough. She says it felt unspeakably selfish.

JEFF: AND I said what is the worst case scenario the worst case scenario is you’ve educated a lot of people about one where you’re at and people like you hundreds of thousands of people who are on the waitlist where they’re at and that’s a good thing the bad outcome would be if on a psychological and emotional level this sets you back. But that’s a risk I’m willing to take because I don’t think that will be born out.

MONICA: Jeff and I met with my therapist. I think it was Florence who said do you give us permission to act? I think I still said no. But then she said, will you let us take care of you, Jeff and I, and I said, yes. And I think they were still on and, and I couldn't even take it. And my husband posted the call in that moment on Facebook. 

So on May 9, 2018, Jeff posted a letter…

JEFF READING POST: Dear friends and family of Monica…

Monica couldn’t bring herself to look at the post. She felt embarrassed and ashamed but within minutes responses came pouring in … dozens of people offered help and prayers and a total of 27 got tested to see if they were a match.

MONICA: The response was unbelievable. It was probably one of the most overwhelming, blessed moments of my life because the response was instantaneous by text, by message, by email to Jeff. Because of course I couldn't even I just did not wanna be on Facebook or anything. I just felt very unworthy. PAUSE And yet there was like a storm of love from people that I cared about from strangers, from people who knew my work, and it was beautiful. PAUSE

They all coordinated appointments to test for compatibility. But unfortunately none of them, not one, was a match. 

MONICA: So I was starting to feel a little hopeless because I also did not have a working fistula.  I was feeling a little on the edge of life because I was so sick from barely having kidney function. My blood wasn't being clean. I still did not have a working AV fistula. And soon it would be a sort of emergency dialysis situation… And what was interesting to me is when I was the most vulnerable and the most literally near death in terms of my body not working and an organ I needed to live failing, I felt so worthy of love. And like I could contain it all without qualification. And that was a new experience to me.

Monica says she was unprepared for the bounty of love and hope and acceptance she felt from people and what kind of impact that would have on her own sense of goodness.

I don't want to think I need to be suffering to be able to receive. I don't like that. So yet if there's a lesson to be learned about that, it's one that I have to learn every day. PAUSE

Her surgeon told Monica to hang on, she should have a working fistula for dialysis by December first. On December first she got a call. But it wasn’t about dialysis. It was a new kidney. A young person who had agreed to be an organ donor had died. Because she was recovering from yet another emergency hernia surgery, the doctors wanted to examine her to make sure she was strong enough for the major operation.

MONICA: And we drive down to the Mayo clinic and I'm still not sure. And I won't know, because I won't know for hours upon hours, And they wanted to see if I was okay, enough and strong enough to receive the kidney transplant. Oh my gosh. So I go down, I put on makeup and I'm like, I am healthy. I am strong, you know? Right.

So they examined Monica and decided she was cleared for surgery.

MONICA: I got the kidney the morning of December 2nd, which is the morning of the first night of Hanukah, the festival of miracles. ​​I would've danced into the surgical room if they had let me. So I finally got this beautiful, beautiful kidney, and I was so excited and it's not, you know, it's not that it was an easy surgery or recovery, but I was fueled by joy and hope. So I was feeling very, very positive.

After the surgery Monica had to go in everyday for tests. On the fifth day she got some bad news from her doctor.

MONICA: I was already attacking and rejecting my beautiful kidney that had started working, but my antibodies were already revved up . And the instructions were to check into the hospital. It was really devastating. Yeah. Because my body was rebelling against me against this beautiful gift. And my first thought was, Ugh, what will I tell the donors family?

Her health file was reviewed by the complex case committee at Mayo.

MONICA: I went through, I, I think seven rounds of plasma farisis where they remove, uh, the blood from your body, separate the blood cells from the plasma and the liquid and replace it with donor plasma to get rid of those antibodies…intense steroid treatments and infusions that… I had a horrible allergic reaction to the plasma.

She had an allergic reaction to the plasma that caused her to break out in welts and her skin to burn and itch.  The medicine they used to treat her reaction, caused her to hallucinate.

MONICA: And I remember quoting Gabriel Garcia Marquez because the end of 100 years of solitudes is refers to the oldest, the first of the line being tied to a tree and the last being eaten by ants. 

 By some miracle she got to keep her kidney. As soon as the kidney was working she wrote a letter to the donor’s family.

LETTER FROM MONICA: Dear family and loved ones of my donor, I have thought of you each day since I received my kidney. I am filled with sadness and loss… I want you to know what this choice needs to me and my family and I intend to honor you all…I can dream of seeing my children and perhaps even theirs grow up. 

On the second anniversary of her transplant surgery Monica received a letter from the family.

MONICA:  I had a really profound experience that evening, that night, very often since my transplant, I will in the quiet moments of the night, put my hand over the incision, my happy scar, where the kidney rests, …I felt such a pouring of grief through my body. I felt like through my hand, I was touching the hands of my donor's parents and it was so profound and I felt a type of grief that I had never felt in my life.

It’s been three years since her transplant. Monica is now 52 and she just walked her first 5K. 

It’s still really hard for Monica to surrender to help but because such a great act of selfless good has been given to her she’s doing more mitzvahs or good deeds. And she’s trying to give back in small and big ways volunteering, teaching, mentoring, writing. And the more she does, the better she feels about herself. And still, she questions.

MONICA: I just can’t think about what the world would be like if we treated each other like we all are dying… I received so much goodness and love that. I try to pass that on. It's really hard. But if we stop and think about how ephemeral life is, it makes it easier.

This is 2 Lives. I’m Laurel Morales.