Dayna Stephens

At first glance, Dayna Stephens and I don’t have much in common. At 42, he is already a legendary saxophonist, and I can’t follow along to the Cupid Shuffle. He is a Black man, and I’m a White woman. He received a full ride to Berklee College of Music in Boston, and I went to my safety school. Stephens later attended the Thelonious Monk Institute of Jazz in Los Angeles, while I scored so dismally on my LSAT that I was lucky to make it into a second-tier law school. However, Stephens and I share one unfortunate trait: we are part of the 1% of Americans that suffer from focal segmental glomerulosclerosis (FSGS).

FSGS is a genetic and/or autoimmune and/or random disease that scars the kidneys. As scarring becomes more prevalent, the kidneys can no longer filter waste. 50% of FSGS patients will experience kidney failure, and 13 Americans die every day while waiting for a kidney transplant. FSGS is 5 times more likely to strike in African Americans compared to the general population.

I first learned about Dayna Stephens while researching potential keynote speakers for an FSGS fundraising gala in Chicago. Stephens’ journey from talented young musician to dialysis patient is captivating, but his story is also achingly familiar to anyone who suffers from chronic illness. Stephens is inspiring not only because he persevered over FSGS, but also because he was able to use the fear, uncertainty, and drudgery of kidney failure to create stunning albums.

Stephens was diagnosed with FSGS in college after routine lab work revealed he had elevated protein levels in his urine causing foamy urine. Stephens was fortunate to be diagnosed so quickly. Many FSGS patients are often misdiagnosed with allergies, thyroid problems, or, in my case, lupus.

Stephens battled FSGS for 10 years before his kidneys failed. During this time, he released his debut album as leader, The Timeless Now, when he was only 28. The album received a 4-star review in DownBeat magazine, and the song “Beginning of an Endless Happy Monday” was featured in NPR’s Top Ten Jazz Jewels for 2007. He also performed with Stevie Wonder and Carlos Santana. However, in 2009 Stephens' kidneys finally gave out, and he was forced to start dialysis just as I was setting foot in my first jazz club.

Stephens released the triumphant Today is Tomorrow in 2012 despite juggling multiple challenges, such as undergoing dialysis in his car or dragging his dialysis gear to far-flung locations like Alaska. Given Stephens’ health, I expected Today to be a dark album of mournful jazz, but instead it bubbles with hope, optimism, and joy. Taylor Eigsti, a top jazz pianist and Stephens’ colleague stated, “[Stephens] … doesn’t wear that stuff on his sleeve. He wears his positivity on his sleeve.” Critics eagerly anticipated Stephens' next accomplishment, although Jazzwise ominously noted that Stephens could prove himself an important saxophonist "if he succeeds in obtaining a new kidney.” (Emphasis mine).

By 2013 Stephens' difficulties continued to accumulate. He was kicked off the transplant list because of the weight he gained from at-home dialysis. Furthermore, his medical expenses were staggering. As a musician, Stephens didn’t have health insurance, so he needed to find a way to cover the $3,000 a week for dialysis plus the $4,000 a month for anti-rejection drugs if he succeeded in getting a kidney.

Cracks started to appear in Stephens’ relentless positivity. In an interview to promote 2013’s That Nepenthetic Place, Stephens discussed the cover art to his album, which featured him listening to the bell of his saxophone. When the interviewer asked what the saxophone was saying, an exhausted Stephens replied, “Keep doin’ it. Keep goin’ till the end. Until you can’t no more.”

Stephens also feared his FSGS would overshadow his music, but he also seemed to embrace the disease as a Muse. Nepenthetic is more restrained and subdued compared to Stephens' earlier work, particularly the haunting “But Beautiful.” It is easy to imagine Stephens had his prognosis in mind as Gretchen Parlato warbles:

Beautiful to take a chance

And if you fall you fall

And I'm thinking I wouldn't mind at all

In addition, Nepenthetic’s title track encapsulates Stephens’ journey up to 2013. The song is soft and dark in the beginning but escalates to Stephens’ well-known upbeat style before ending on quiet, hopeful notes. I wasn’t surprised to learn that “nepenthe” is a fictional drug used to chase away sorrow.

In 2014, Stephens had been waiting 5 years for a kidney. The 5-year survival rate for a patient on long-terms dialysis is 35%. This is the year he releases Peace, one of his best albums to date. “There is something different about this one,” writes Jeff Tamarkin in JazzTimes. “Whereas Stephens often pursued rhythmically intricate, edgy postbop on his previous releases, Peace, as its title suggests, is a calmer, more introspective session.” The album is, quite simply, a memoir of a young man who is at peace with his life at the age of 36.

Stephens himself had changed by 2014. He was still optimistic about receiving a kidney, but he also spent more time dwelling on mortality. Stephens admitted that such thoughts were stressful, but he also acknowledged they added depth to his music.

To be clear, Peace is not a morbid record. However, the opening languid notes warn the listener to prepare for deep thoughts and big emotions. Melancholy appears throughout the album, particularly in “The Good Life” and “Oblivion,” but Stephens never dwells there for long. Instead, Peace is more grounded and more centered. Stephens seems to suggest that confronting mortality isn’t an exercise in morose pondering, but rather an opportunity to meaningfully reflect on the end of one’s life.

Perhaps it would be easier to write about Stephens if his music never wavered from the relentless enthusiasm of his earlier work, but as someone who suffers from FSGS, I am grateful for Peace. The album is a reminder that anyone can transform frustration and sorrow into something beautiful. Peace is composed by a man who knows he is on borrowed time, who is approaching his own possible death with thoughtfulness and heart. What could be more inspiring than that?

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We didn’t hire a keynote speaker for the FSGS gala due to budgetary constraints, but as America has slowly and justifiably attempted to highlight Black Excellence, I once again thought of Dayna Stephens. I was thrilled to learn that Stephens received a kidney in 2015, and he continued his meteoric rise to fame. In addition to releasing several highly acclaimed albums, Stephens won first place in the 2019 DownBeat Critics Poll in the category Rising Star—Tenor Saxophone and started his own record label.

In 2019, Stephens fulfilled one of his lifelong dreams and led his own group at the legendary Village Vanguard club in New York. Stephens described the performance as one of the biggest, and scariest, moments of his life. His latest album is a collection of the live songs he played that night. The album is, naturally, a success, with JazzTimes calling it “a triumph.” DownBeat declared the album Stephens’ “crowning achievement.”

Stephens has achieved another life-long dream: his kidney disease no longer takes center-stage in his interviews and reviews. His FSGS is reduced to a blurb, a quick obstacle to note before moving on to the important issues at hand. There is no longer any story, no morbid turmoil worth exploring.

But those of us who suffer from FSGS know the journey never really ends. Our kidneys are permanently scarred, but so too is our sense of well-being. Even those of us who “get better” can never go to the bathroom without checking for foamy urine because FSGS returns in 30-50% of all kidney transplants.

As I listened to Liberty, Stephens’ 2019 album, I found myself once again inspired by Stephens, but this time for a different reason. Stephens is celebrating freedom, including freedom from dialysis. However, once again, Stephens doesn't completely let loose, and he never "lets it rip." I imagine I know why. Stephens has learned the hard way, via endless prescription refills and pounds of fluid, that there is beauty in restraint.