A stethoscope lay on the bed upstairs in case someone asked Shae Brown to listen to her triumphant heartbeat.
Shae placed the medical instrument there, anticipating an opportunity to share the joyous sound with new friends. The Millers from Glencoe, Illinois, had traveled to Shiner, Texas — a small town of 2,069 people — to meet Shae, whose heart once pumped inside their beloved daughter and sister. Shae’s successful heart transplant occurred May 20, 2013, in Houston after her donor, Alyssa Miller, died at 24 after a long illness, leaving behind a twin sister, Eva, and parents Fred and Barbara.
This is the extraordinary story of Shae and Fred, of strength and courage, grieving and living, perspective and perseverance. This will help explain why Fred plans to run every step of the Chicago Marathon on Sunday alongside Brown, who reflected on that memorable June 2016 weekend as the time the families began to share more than medical history.
On the second day of the Millers’ visit to Texas, Eva worked up the nerve to ask Shae something she expected.
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“Eva said, ‘This is probably a really strange question, but is there any way we could listen to Alyssa’s heart beating inside of you?’” recalled Shae, 49, a dental hygienist. “I said, ‘That’s not a strange question, and yes, you can.’ So I went up the stairs and got my stethoscope.”
Eva pressed the device against Shae’s chest and listened, emotionally. Then Barbara Miller leaned in close and heard the beating that once had provided the rhythm for so much joy in her life. When it was Fred’s turn, he wanted to hear, too, but hesitated. A father still struggling to cope found the timing too soon, the pain surprisingly fresh.
“I think I was more shocked by my own reaction that day than I was that Eva brought it up to Shae,” said Fred, 62, a psychiatrist in Evanston, Illinois. “But, no, I just … couldn’t do it. I couldn’t listen. It’s a very surreal experience knowing that there is a part of my daughter that is still here. To be clear, this is Shae’s heart. This is Shae’s life. We get that and don’t want to put any burdens on her. We want her to be herself. That said, it is kind of a weird thing.”
Fred paused, looking for the right thing to say, like good psychiatrists do.
“In a way,” he said, “I’ll be running a marathon with a part of my daughter.”
Medical professionals encourage heart-transplant recipients to wait a minimum of one year to contact the donor’s family, and Shae was counting the days. But as the anniversary arrived, reality hit her.
“I was like, ‘You can’t write that letter now, on the one-year mark, when it’s going to be all new and fresh to them,’” Shae said. “I couldn’t have them relive that. So I clammed up.”
Another year of doubt and curiosity passed until Shae received some good advice: Instead of sending what amounts to a thank-you card, tell the Millers her story.
At 16, doctors diagnosed Shae with rhabdomyosarcoma — a cancer of cells that normally develop into skeletal muscles. At Stage 4, the scared teenager faced long odds of survival. Shae recalled one doctor giving her three months. The chemotherapy drug, doxorubicin, damaged Shae’s heart, but her cancer required the most aggressive treatment possible to stop the tumors from spreading.
One Sunday, hours after Shae remembers the local pastor visiting, nurses noticed a difference in the color of fluid in the bag connected to her catheter. Shae’s abdomen softened. Unbelievably, her prognosis changed by the time she went to bed.
“I’ll never forget my doctor saying before he walked out of my room that night, ‘It looks like the man above is doing some work here,’” Shae said. “They were shocked my tumor started shrinking. Most people who had that kind of cancer didn’t make it, but here I am.”
There she was, almost a lifetime later, hitting the highlights of her incredible journey in a letter to the Miller family. Shae included how the chemo drug weakened her heart enough to need a pacemaker installed at the age of 35. How in 2012, at 43 years old, Shae was placed on a transplant list, where she remained for 14 months of uncertainty. How after the transplant, doctors told Shae her heart had been functioning at 1 percent of its capacity.
“I didn’t realize how close to death I was,” Shae said. “I learned at 16 you don’t take life for granted. You’re never guaranteed tomorrow. Each day since then I’ve lived with an extreme thankfulness that you get to wake up every day.”
This was the type of truth she shared with strangers in the letter she finally sent the Millers, a handwritten note that still sits on a desk in Fred’s basement. Those were some of the words that provided a glimmer of light during a dark period for a family still trying to comprehend its incomprehensible loss.
“What really rang true about Shae’s letter was how grateful she was and her empathically understanding that we were grieving and this might help us,” Fred said. “That the heart went to somebody who wouldn’t let us down. … I’m never going to lose that letter.”
As Shae lay in the hospital imagining all the possibilities of life a new heart allowed her, someone asked if there was anything specific she wanted to accomplish. Shae’s immediate answer surprised even her.
“I said, ‘One of these days, I’m going to run a marathon,’” Shae said.
That recollection came up in conversation the weekend Shae met Fred, a lifelong runner who had endured 10 marathons but ran his last in 2010. Shae had no idea of Fred’s running background when she related her goal of going 26.2 miles. The bucket-list item was mentioned casually as the two families got to know each other better.
The next morning, after having time to process everything back home in Illinois, Fred sent Shae an email in which he made a pledge.
“He let me know he had run 10 marathons and if and when I ever got to the day I wanted to do it to let him know and he’d run right there with me,” Shae said.
First, Shae had to receive medical clearance from her cardiologist, Reynolds Delgado. Delgado has been caring for Shae since the days when her heart began failing badly enough to be put on the transplant list. It was Delgado who officially accepted the donor May 20, 2013, when Alyssa’s heart was a match. So as somebody who has been through it all with Shae, he knew better than to try to talk her out of wanting to run a marathon. To ease his mind, Delgado gave Shae the name of a cardiologist friend in Chicago in case she experiences any discomfort.
“It surprised the heck out of me she wanted to run a marathon, but I told her theoretically, potentially, yeah, she could do it — yes, medically, she is up to it,” said Delgado, of the Texas Heart Institute at St. Luke’s Episcopal Hospital in Houston. “This is very uncommon. It is possible, though you’d expect it more in younger patients. I think she will be fine. I told her very carefully not to overdo it.”
The doctor laughed.
“I don’t know that she will,” Delgado said. “The circumstances of this make it beautiful, amazing.”
Looking back, Fred admits the promise to run with Shae was a bit impulsive. But something greater than the concern over his sore knees and back compelled him, something stronger than self-preservation.
“I think there was a desire to be close to Shae and to her family,” Fred said. “I can’t put it exactly into words. It was a feeling that, if this person who had just had a heart transplant was willing to put herself through that, then the least I can do is go with her. I’m not sure it was the most thought-through thing, but I’m happy to be doing it with her.”
Everybody needs everybody. Shae needed a heart, obviously. But we need her to help us.
Fred Miller, on how this helped restore his faith in humanity
Training for a marathon seven years after his last one has pushed Fred’s physical limits. But he wonders less about the race’s potential impact on his body than on his spirit.
“How it will affect me in terms of emotions, I’m sure it’s going to stir up a lot of things as it already has, but that’s part of the grieving process,” Fred said. “I really don’t know what to expect.”
He only knows it gives him a platform to pay tribute to the daughter affectionately called “Lissy,” a creative soul who loved to laugh, and write, and act and take pictures. A play Alyssa wrote as a kid once was performed at a local theater. A photograph she took of a grandfather and a granddaughter staring into each other’s eyes still makes Fred brag. The illness the Millers wish not to discuss robbed Alyssa of so much so soon, but seeing Shae live life with such passion has provided some solace.
“There are elements of the marathon that are consistent with Lissy’s personality; she was a real determined person,” Fred said. “There is part of me that wants to let the world know it. I’m not a person that seeks the limelight, so it’s a little awkward for me to be in this position. But in a very cerebral way, I’m really gratified to be doing it. It gives me a chance to really honor my daughter.”
‘Everybody needs one another’
Fred and Shae stay in touch via regular text messages full of jokes or inspiration, which have increased as their big moment nears. The Millers will pick up Shae and her husband, Joe, on Friday at the airport and spend Saturday catching up before race day arrives. Chicago’s recent heat wave concerns Shae less than the chance for rain. But, at this point, Shae believes she can weather any adversity. Her doctors agreed and, after some initial shock, approved running the marathon, which Shae will do on behalf of Team One Step, a charity that helps kids afflicted with cancer. The odyssey begins at 7:30 a.m. Sunday at Grant Park at Wave 1, Corral E and will end sometime around noon, but who’s counting?
“I have no idea how long it will take me,” Shae said.
Nor does Shae have any clue how she will feel when she finally finishes, fueled by determination from a heart that forever connects her with the runner by her side. Fred has spent his life’s work devoted to making sense of things for patients looking to him for direction, of simplifying complexity. Yet he, too, still searches for ways to adequately articulate his feelings about running alongside Shae that continue to surface.
They are powerful. They are plentiful.
“One of the striking things for me about this is that there’s also another message that everybody needs one another,” Fred said. “We’re in this time that’s incredibly divisive. We’d have never have met these people in Shiner, Texas. And I think I can say most likely they’d never have come to Glencoe, Illinois. But there’s something that transcends all that, that there isn’t really an us and them. It’s really kind of just us. Everybody needs everybody. Shae needed a heart, obviously. But we need her to help us. She really gets that.”
Unspeakable tragedy brought Fred and Shae together. Immeasurable triumph awaits them Sunday.
“This has helped me in terms of my general faith in humanity,” Fred said. “People will step up. Shae has stepped up in her efforts to comfort us, and I hope that Oct. 8, I can step up and help her cross the finish line.”