Inhale. There’s a lot to take in – too much, even – when every breath – every lame, rackety, strained breath you’ve ever taken – could be your last. When you can’t breathe without your nightly “tappies,” your parents thumping your sides like a ketchup bottle. When your two-week-long tuneups at the hospital go from three times last year to seven times this year. When, as you follow the progression of the older children like you – the airway-clearance vests, the feeding tubes, the oxygen machines – you realize how many of them are not coming back. When you’re told you won’t make it to age 18. When this is your normal –
Exhale. You’re going to see the world differently. You’re going to have your own take on things – on the realities, fears and values of life and your position within it. It’s how you express that perspective – how you process it and what you do with it – that gives your struggle purpose. That’s the gift you offer – and it’s that honesty, that insight, that draws people in and makes them want to listen. That’s when you’ve found your voice – and, as Brennen Reeves ’14 has learned, that’s when you can finally breathe it all in.
by Alicia Lutz ’98
photography by Diana Deaver
Everybody knew Brennen Reeves ’14 had cystic fibrosis. He didn’t have to write a one-man show to tell people he’d had a double lung transplant. People knew. He’s from Hilton Head Island, S.C. Everyone knows everything there.
Even when he was five weeks old, they knew something was up. The doctors called it “failure to thrive” until the blood work came back from California. Then they called it: cystic fibrosis, or CF – an incurable genetic disorder that affects the lungs, making it difficult to breathe, and hobbling patients with frequent lung infections, among other problems. The only person who didn’t know was Brennen. And maybe his older brother Michael.
These brothers were different. And they knew that. They knew Brennen had to do stuff that Michael didn’t. All that medicine, the therapy, the “tappies,” the tubes, tanks – Michael didn’t have to do that. His body was never completely arrested by spasms caused by a cough, caused by a laugh.
Don’t make Brennen laugh. He’s having a hard day.
Michael didn’t have to go to Atlanta for tuneups, either. So he didn’t know what Brennen knew: He was just like all the other kids on the CF wing of the Egleston Children’s Hospital. They, too, were there for tuneups – those two- to three-week stays where they pump you up with antibiotics, deal with whatever havoc the CF is currently wreaking on your body and try to cheer you up with celebrities and clowns.
Brennen knew a lot of things that Michael didn’t know. He knew that children die. Friends die. They’re there one day, and, the next, their bed is empty. Their name is wiped off the white board. They don’t exist.
Brennen knew, too, that kids don’t always have parents. Or, they do, but their parents just drop them off on the CF wing and don’t come back until it’s time to pick them up. They just sit there alone for two weeks. Alone with their disease. For two weeks.
And then, sometimes, there were kids who did have parents, but then one parent would leave. The family would break. It was too much for them. Cystic fibrosis isn’t easy on families. It can rip them apart. It can make people leave. Brennen knew that. He’d seen it. So, by the time Brennen really knew he had cystic fibrosis, it wasn’t the worst thing he’d figured out. And it certainly wasn’t a surprise. It was normal. It didn’t get in his way. Mostly because it was his way.
Sure, it sucked when he had to take a break from playing with his friends in the middle of a game, or when he had to leave his buddies in the middle of the school year. Or when he couldn’t for the life of him catch his breath. But it was normal. And he was normal.
“He was never insecure about himself or his abilities,” says Ann Reeves, Brennen’s mom. “If he wants something, he doesn’t hesitate. He’s never been shy.”
“There was nothing Brennen didn’t think he could do,” agrees his dad, Mike Reeves. “He thought he could do everything, every sport, whatever. And he did.”
He could do everything the “normal” kids did. Except breathe.
But that’s how things were: Normal, with exception.
Normal: Went to summer camp. Kissed a girl.
Except: Was a camp for kids dying from terminal diseases. She died two years later.
Normal: Went kayaking with his brother in the creek behind the house.
Except: Always brought along a rope so that, when Brennen got tired, Michael could tow him back to the house.
Normal: Went on weeklong family vacations to the beach.
Except: Never actually left town.
“We just rented an oceanfront house in Hilton Head and spent a week at the beach. The kids never knew where we were,” laughs Mike. “You just didn’t plan getaways or long vacations. You just never knew when Brennen would get sick.”
And that’s just it: Brennen was sick. He had CF. You can’t get rid of CF. Everybody knows that. So what do you do? Stop? Give up? Let it fill your life with that vicious, sticky gunk? Well, no. Of course not. You just do what you’ve got to do. CF isn’t an excuse. It’s not a license to give up or not to finish what you’ve started. It doesn’t permit families to abandon each other or to fall apart.
There’s no option for walking away in the Reeves family. They’ve started something here. And so, when Ann and Brennen get back from a two-week-long tuneup, you better believe things will pick up right where they were left.
Brennen will take off like it never happened, like he’s forgotten what he’s just left behind, and the rest of the family will get right back into the groove, too: playing baseball at the Crossings Park, worshipping at St. Luke’s Episcopal Church and – at least six nights a week – sitting down together for the family dinner, complete with all the typical sibling squabbling.
Michael: “Chew with your mouth closed, man!”
Ann [looking at Michael sharply]: “Michael, he can’t. He’s having a hard time breathing.”
Michael: “The kid’s killing me! I’ve got to go eat somewhere else! I’m going crazy! Come on, dude, you’re going to have to help me out a little bit!”
Brennen [rattling through an inhale]: “Pass the potatoes.”
PROTECTED BY THE MOSS-DRAPED OAKS ON THE BANKS OF POINT COMFORT CREEK, THE REEVES’ HOME IS LIKE A COMFORTABLE EMBRACE – THE KIND THAT RESPECTS YOUR SPACE. If you lived there, you might never want to leave. But Brennen has to leave every now and then. It’s what people do.
In that house, though, Brennen is normal. In that family, everything is OK, everything is normal – Brennen never had to question that. He might be the only one with CF. He might be the only one not going anywhere on a sports scholarship. He might never grow past everyone else’s shoulder. He might be the answer to “One of These Things Is Not Like the Others.” But – contrary to that song’s lyrics – he belongs there. He fits into the normal.
Hilton Head isn’t a big place. In the mid-’90s, it was even smaller. If you lived there year round, people recognized you. The kids had all seen each other before; the parents had all seen the kids before – they knew which tanned, freckled face with Hi-C–stained mouth belonged to whom. Brennen, the parents knew, had CF; the kids just knew he coughed a lot. He was part of the normal.
Sometimes, though, his normal didn’t add up.
Like that early summer evening after his kid-pitch baseball game at the Crossings Park, when the adults were all milling around talking about boring adult stuff, and he decided to run the bases.
It’ll be so cool if I dive into home head first! he thought as he crossed third. And, like any other impulsive 10-year-old kid, he didn’t consider what might actually happen until it was too late.
The feeding tube in his stomach had ripped open and blood was gushing out, soaking his shirt.
As heads turned and breaths gasped, Brennen realized: No one else on this field gets fed through a tube while they sleep. I’m the only one.
These things are going to happen. You just have to learn your limits. Or not.
A thing about Brennen: He likes to start trouble.
Maybe that’s because – with the protection of his brother and his best friend – he knows he can get away with it. Everyone on the island knew you’d have hell to pay if you messed with Brennen – and if he messed with you, well, best not respond.
Here’s why: 1. One punch, and you’ll send him to the hospital. And he’ll probably die. And that’s hard to live with – knowing you’ve killed a tiny kid with cystic fibrosis. 2. Ian Anderson, who is 6’7”, 320 pounds and ferociously protective of Brennen.
There weren’t any two kids more physically different than Brennen and Ian. If you’re of their fathers’ generation, imagine Mutt and Jeff. If you’re of their generation, think Rob and Big. The point is, together, their presence is alarming.
And, growing up through high school, the two were always together. Every day after school, they drove around the island in Ian’s black Dodge Ram. Sometimes they’d end up having long conversations down at the power lines – their hangout spot at the end of some dirt road – sometimes they’d be upstairs playing video games at Brennen’s house or outside on the dock, just talking. In a language no one else could understand. Stuff like this: “I betttttttt, do you? werdddddddd. Peace Presh, SREEEEEEEEEEE.” Yeah, who knows. Not important. It’s what’s behind the language that matters.
“Ian is probably the best thing to happen to Brennen,” says Michael. “When Brennen was around Ian, he was happy. I don’t think there was one time that those two weren’t having the time of their life together. If Brennen’s sick at home and Ian happens to come over, it’s like the kid’s not sick anymore: They can sit there and die laughing together.”
Case in point: Ian’s note while Brennen was preparing for his double lung transplant: “People say friendship is one mind in two bodies. Most who know us would agree … but we still have that one mind aspect. People go crazy trying to understand the gibberish we say 24/7, but somehow we get it? I don’t know, maybe we are that off. How lucky I am to be considered your best friend, and these people calling showed me how lucky I really am, as well as how many people care about you. You touch so many lives every day and I’m always next to you along for the ride.”
It’s true: Brennen has a ton of people who care about him. A ton. There were the prayers, well wishes and phone calls – all that, you can’t even quantify. But let’s just look at the numbers from the online journal that Ann’s sister, Mary Watson, kept while he was preparing for and recovering from his double lung transplant in 2011. There were 28,823 page visits. If you print out the book of guests’ entries, it is 682 pages.
“The journal and guestbook helped Anne, Mike and Michael connect with others in a way that demonstrated they were not alone in this battle for Brennen’s life and breath,” says Brennen’s Aunt Mary, who, he says, was a “real warrior” in taking on the challenge of guiding 25,000 people through his daily struggle – and of keeping their faith alive. “Oh, boy, if I missed writing a post a few days, people asked about it – it was then I realized how important this was for not just the family, but for those who love and care about Brennen.”
Back on Hilton Head Island, Brennen was a bit of a celebrity. Everybody knew him. But Ian knew him, knew him. Ian knew that, if he asked Brennen how his doctor’s appointment went, all he’d get was, “Good.”
He knew Brennen didn’t want him to bring it up. Brennen didn’t talk about CF. And if he did – if he threw out something like, “So, I went to this party after my lung collapsed …” – Ian knew it was serious.
And sometimes it was serious.
It was December 2010. Brennen had just returned from his first semester at the College. And things had deteriorated. Big time.
The doctors had told him at age 15 that he’d need a double lung transplant by age 18. Here he was at 19; he didn’t have much longer. He was on oxygen 24/7 and couldn’t walk more than 5 feet. Mike had to carry him up stairs. Brennen couldn’t even think, really. It was his last run. His last stretch. He knew that.
He knew that he wouldn’t make it without a transplant. And he knew the risks. What he didn’t know was how he’d be when he emerged from surgery – if he emerged from surgery. But he had to take a chance. He didn’t want to let his family down.
The Reeves finish what they start. Quitting isn’t an option.
Brennen was going to be the poster boy for a double lung transplant. He was going to sail right through it. That’s what the doctors said. Here’s how that panned out: The day after the initial surgery, there was internal bleeding, and they had to perform a second surgery on his already-spent body. During the second intubation, the surgeon severed Brennen’s vagus nerve, leaving his vocal cord paralyzed.
Worse: He wasn’t learning to breathe, learning how to re-breathe. His brain wasn’t connecting to his new lungs to tell them what to do. He was breathing the opposite way he was supposed to. His brain was abandoning his body.
“His brain didn’t catch on to the fact that he had new lungs so he could now breathe normally. Brennen always took short fast breaths: that was his normal. When he got his new lungs, he was still taking short, fast breaths. He was not breathing deep enough to expel the carbon dioxide,” says Mike. “Also, his diaphragm muscles were weak, as they had not been used in the past for Brennen’s short, fast breaths, so he had to train them to assist in his deep breathing.”
For several weeks, it was touch and go – in and out of ICU.
“Oh, it was just horrible,” says Ann. Brennen’s veins in his arms eventually gave out from all the sticking and poking they were doing to test his blood levels. That’s when they moved to his groin. “It was just downright pure suffering for Brennen.”
Just relearning how to breathe took well over a month. But then there were the five weeks he went without solid food because his paralyzed vocal cord wouldn’t let him swallow. He was just so hungry. “What’d you eat for lunch today? What’d you eat today?” He was always asking, trying to taste through others.
“Oh, we didn’t have a chance to eat today,” his family would say.
He knew they were lying.
“You could tell he was just so demoralized by this whole thing, just emotionally drained,” says Mike. “Watching that was just crushing. We had to get him out of there. He wasn’t getting better. Brennen had reached the point that he had been in the hospital too long and mentally he just couldn’t …”
But he did. Brennen did.
“Brennen, what’s the matter?” Ann asked.
He looked at her, panicked. “I’m not breathing.”
“No, you are breathing.”
“No, I’m not.”
“Yeah, Brennen. These are your new lungs. That’s how you’re breathing!” Ann cried.
“No, really, I’m not,” he said, clearly freaking out.
“Let’s keep walking,” she said, tears streaming down her face.
“You’re breathing, Brennen!”
It may not have been in the grand, sweeping gesture his family had wanted, but, in true Brennen form, the victories came in small, subtle moments.
Like when Ann taught him that he could breathe and talk at the same time: You can do that? People do that?! It kind of blew his mind.
Or when Michael taught him that he could lie all the way back – flat – and still breathe.
Or when he turned around from the hospital mirror and said, “Mom, what do you notice?”
You need to brush your teeth? Ann mused. “I don’t know, Brennen, what?”
“Look how pink my cheeks are!”
For the first time in his life, he was getting the oxygen he needed. He was looking alive.
“The kid can’t go anywhere without five nurses trailing behind him, and the first thing he says to me is that I look bad?” Ian shakes his head. “It was still Brennen!”
It was still Brennen. Sure, there were someone else’s lungs inside him, but everything else was the same. He came out the same kid who went in. Except now he can ride a bike. Go kayaking. Go up stairs. Breathe.
“Now he can laugh,” says Ann, “which is nice to see because Brennen loves to laugh. And laugh often. And make other people laugh.”
Laughter. Humor. Brennen wouldn’t have gotten far without it. He knows that. His family knows that. His friends know that. It’s his voice. It’s something he can share with others. Maybe make him feel a little less alone.
When he returned to the College in the fall of 2011, Brennen reached out to classmate Young Stowe ’14. It turns out, they were living right across Bull Street from one another.
“Come over,” Brennen said. And, from then on out, Young never really left.
“His house was hilarious,” says Young. “It was kind of like a carriage house, but it was a weird, dinky stupid little house. I just thought it was funny, because it was Brennen in house form: small and funny and weird.”
They spent a lot of time in there. Watching TV. Laughing. Accidentally napping.
“It was a weird time for us,” says Young. “We both needed someone else in our lives. He was the healthiest he’d been in a really long time, but he was also fragile from the surgery. There were a couple of times when he was just too sick to do anything. Recovering from a lung transplant is really hardcore, and it doesn’t really end – there’s constant upkeep, so a lot of our memories are just random Tuesday nights at the hospital. I’ve been in the hospital with this kid I don’t know how many times.”
“I’ve got to go to the hospital,” Brennen would say.
“I’ve got to go home,” Young would reply.
“Take me to the damn hospital!”
“Fine. Can we be in the same room as last time?”
That’s how they work. Brennen always seems to find the friend who willingly doubles as a protective caregiver. Maybe he just finds what he needs. Maybe his needs elicit that kind of role in people. Either way, spring break at Duke University Hospital for Brennen’s maintenance? It just seemed like the natural thing to do. Nothing was off limits, nothing too absurd.
“We have this shared sense of humor. To us, the conversation is a riff on the same joke over and over: about how dumb and useless he is,” laughs Young, who – like most of Brennen’s college friends – is living in New York City. “The thing I worry about with Brennen isn’t his health or his career, but how he’s going to do without all of us around. His friends are really important to him, and I hope he doesn’t feel left behind. We’re a tight group, and he’s a central part of that.
“It’s hard for Brennen, because he’s tied down by the medical thing,” continues Young. “That’s the nightmarish thing about all of this – he can’t get away from it.”
Friends, Brennen has learned, do leave. He’s watched them go his whole life. The friends he made during his tuneups, the girl he kissed at camp, the friends he made at the hospital in Atlanta, and the ones at Duke. Gone.
They all leave him here alone with his disease. But the disease is always right there with him. He can’t ignore it. He can’t leave it out. It remains.
“Why not?” David Lee Nelson ’00 implored Brennen after class. Brennen, then a senior double major in theatre and philosophy, was taking David’s solo performance theatre class. It seemed too compelling of a story not to tell.
And so, for the first time, Brennen faced his story: all the god-awful injustices, all the absurdities, all the fears. All the stuff he’d deflated with humor his entire life. He coughed all that crap up. And once he started, Brennen couldn’t stop. He just kept hacking away. He needed to keep going. He needed this.
“I want to take this further,” he told David when he’d presented his 10-minute project at the end of the semester. “I want to make it into a show.”
David sent Brennen away to write. To be by himself. To work on it alone.
“Being alone is a great way to slip into a creative shell,” notes Brennen.
When he returned, his story scrawled out for David to review, the two worked Brennen’s story into what ultimately became Breathe. A True Story, which premiered at Theater 99 in November 2014. It was his gift.
The show came completely out of the blue for the Reeves family, who received a mass email inviting them along with some 40 other people to the premier. It was the first they’d heard that he was writing a play. And, when they heard it was a solo show, they weren’t sure what to think.
So, he’s going to be on stage dancing by himself?
“In my head, I had it pictured, like, he’s up there in a skirt and dancing around and singing and stuff,” says Michael. “I had no idea what I was walking into. No idea what I was in for.”
Ann and Mike had asked a few questions, knew the gist of the show – and, quite frankly, were a little surprised, Brennen typically being so quick to deflect attention away from himself. Still they were proud.
“I was amazed that he was able to tell his story in front of an audience,’” Ann says.
“Because he does have a story to tell. So I was proud sitting there watching it. But it was tough.”
For the first time ever, Brennen had the voice, the breath, to tell the truth – the parts that are hard to hear. His support crew – his family, Ian, Young: They’d never heard this stuff. They’d been kept in the dark. They’d never heard him say he was scared.
“Brennen doesn’t say that kind of stuff – he just glosses over those things,” says Ian, “so to hear those things really had an impact on me.”
“Well, yeah, I was scared! But it’d just be so weird if I were just, like, riding in the car and was like, ‘Yeah, damn! I’m scared to die!’” shrugs Brennen. “I just felt like, I need to grow up and deal with things some myself.”
And he did. He dealt with a lot by himself. But he knew audiences wouldn’t buy his story if he left out the emotions, the fears. It wouldn’t be real without those things.
What was he thinking? They were going to want to know. How did it make him feel?
He tells his audience all that stuff. He tells them, “Death is the only thing that really scares me.”
But that’s just not true. There are other things. His biggest fear in life is being left alone.
“I would rather have lived my life over 100 times than grow up without a mom, dad, brother or best friends,” he says. “Hands down. Hands down. Hands down.”
He’d seen people sitting alone in hospitals. He’d seen families dissipate. He’d seen things fall apart. He couldn’t imagine.
“So, yeah, I was scared of my parents maybe getting a divorce during that time. I feared a lot of things. I feared my brother getting in trouble. My brother dying. Things like that. And I’m scared to die. Yeah, I’m a person! I’m a human! I feel these things.”
Now that it’s out there, though, it’s a relief. He’s happy. And he’s grateful, especially for David, who encouraged him in the first place to tell this story. And who has become more than a teacher or a coach – he’s risen to the ranks of Ian and Young: He’s a friend.
“I think that’s a really cool, neat relationship,” says Mike. “I think they’ve grown together, and that they feed off of each other a little bit, too.”
“It’s so funny: I thought I came back to Charleston to play Hamlet a couple years ago, but now I really think that, without even knowing it, I came back to help create this show,” says David. “It’s some of the most gripping theater I’ve been a part of creating.”
Since opening, the show was featured in last spring’s Piccolo Spoleto Festival, is the keynote at the South Carolina Theater Association Conference this fall and is headed to the University of Florida in January. But it doesn’t stop there. Brennen and David have big plans.
“I think it could absolutely be a book, I think it could be a 10-person play, I think it could be a musical, I think it could be a movie, a TV series,” says David. “I think it could be literally whatever Brennen wants it to be. I’m just excited about being part of the process.”
It’s given David something unexpected, too: a sense of value, which is translating into “a really exciting stretch of creativity. … I think a lot of it is because, for the first time in my life, I feel like I know what I’m doing a little bit. And the only reason for that is because this tiny, hysterical guy came along and was like, ‘Will you help me do this?’ and I was like, ‘I guess.’”
Together, they’re finding their voices – breathing it all in. Breathing their art to life.
“Brennen lives his life in the way you do when you think you might not have a whole lot of life left. I know that sounds cliché, but when you see it, it’s just who he is. That’s just how his brain is wired. I think that’s unbelievably admirable,” says Young. “Live in the moment. Life is short. Live in the now. Live your life and spend time with your friends and family: Nothing else matters. It sounds cliché, but Brennen lives it so vibrantly, that it’s not cliché at all.”
“He just has so much tenacity: He just puts his head down and gets it done. His engine is unmatched. He’s as hard a worker and determined person as any on the planet,” says Ian. “It sounds cliché, but when you see it in person, it’s a special thing. This kid is genuine from the top of his head to his toes.”
And he’s starting to have a genuine appreciation of the power of his story, too.
“What I find great about Brennen’s perspective is just the self-awareness of it. He’s like, ‘Yeah, I’ve got this thing, and I take it seriously, but I can’t take it too seriously,’” says David. “But even though he has this great perspective, at some level, he’s just a dude. He’s just a dude. He has all the problems a kid his age has: ‘Ugh, I want to meet a girl,’ ‘Ugh, my team lost.’ He’s got this beautiful mixture of cynicism and optimism that I just find so funny.”
“I feel like Brennen is always teaching somebody something, whether he’s coming out as trying to teach them or not. There’s meaning to everything he says,” says Michael.
“I hope that Brennen feels as successful as I feel that he already is. I just want him to feel the same way about himself that I feel about him. I feel he’s already as perfect as you can be.”
“MOM! See if you can hit this with the club!” Brennen calls out, pitching a golf ball to Ann. She hits the ball across the shaded backyard lawn, and Brennen – his blond hair catching the late afternoon sunlight – runs after it, laughing as he dives onto the ground to catch it. “Can you believe I did that?” he calls back to his incredulous mother, who, no, cannot believe her little boy – the same one who’d ruptured a feeding tube when he’d tried it all those years ago at Crossings Park – did that. He’d always wanted to dive for a ball.
“You can’t be scared. If you’re always scared of what’s out there, why would you even get out of bed? And then what’s the point? Don’t forget the big picture. You have to look at quality of life and just live,” says Brennen. “Just because I have to think about exhaling and inhaling isn’t an excuse for checking out. Every breath could be my last. That’s the reality. I’m not going to live forever. I’m just going to enjoy this while I can.”
Brennen can’t escape his disease. It goes wherever he goes. It’s in his pancreas, in his sinuses, in his digestive tract. And – even though his lungs are healthy – his body doesn’t know that. His body is still on the attack.
The risk of rejection never goes away. He can never really breathe easy.
And then there are the drugs – all that medicine he’s been taking since he was eight weeks old, the pounding that his kidneys and his liver have taken over the years: At some point, all those meds are going to catch up.
“The bottom line is, though, if Brennen did not have the lung transplant, he would not be alive today. He wouldn’t be with us,” says Ann. “We don’t know what tomorrow’s going to bring. We’re just grateful that we’ve had these four years with him, and we pray for many more.”
“I know this is all going to end at some point, but right now, I’m happy. I’m living the dream, so come on! Come with me! Be my friend. You know, that’s what I’m about,” says Brennen. “I’ve had all this crap happen to me, but look at me! I’m fine! I’m laughing! I’m beautiful! This is beautiful! Everything is great! I laugh, I have fun. Enjoy it for what it is. Enjoy life. Smile. Hug, kiss, be a part of each other.
“Be here, with me, in the moment,” he continues. “Everyone has their ‘double lung transplant’ in life. But you have to pick up and go. Be a part of this beautiful life. But, mostly, look at me and know I’m OK.
“I want to teach people that everything is all right – you’re going to be OK,” he says. “I’m here now, and when I die, it’s going to be OK. It’s all going to be OK. Life’s going to be OK.”
You just have to learn how to breathe. Just breathe.