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Disability Profiles

Inseparable

When his wife needed a kidney, blind Paralympian Jason Dunkerley didn't think twice.

How do you play soccer if you can’t see the ball?

Jason Dunkerley and his brothers, who are all blind, had to get inventive.

As boys growing up in Northern Ireland, they would adapt games so that they could participate. Jason remembers, for example, tying a plastic bag around their soccer ball so that they could hear where it would fall.

It’s this flexible persistence that saw Jason succeed in a range of sports, with the encouragement of his parents who–uniquely among parents of vision-impaired children–encouraged him to take part in physically active sports.Once the family moved to Canada in 1991, he was enrolled in a school for the blind that prioritized sports achievement.

Jason Dunkerley and his guide runner representing Canada at the Paralympic Games.

It was here that he first caught the bug for running. There, Jason’s favorite teacher acted as a guide runner. Guide runners assist visually impaired runners, sometimes with a tether, and are recognized as a partner in any running Paralympic success. By the time of his final year in high school, he made an 18-second improvement to his 1500 m time, from 4:52 to 4:34.

Since then, Jason’s passion for running has driven him to become a successful athlete, representing Canada at the Paralympic Games. Having most recently competed in Rio de Janeiro, he’s a five-time medalist in middle distance track, having won both the silver and the bronze.  

But the most strenuous challenge of Jason’s life hasn’t been sports. It’s donating a kidney to his wife, Colleen, who is also visually impaired.

Colleen lost her sight as an adult and Jason says she faced her new reality with a courage and strength that were some of the qualities that first attracted him. They were introduced as students, by mutual friends and began a slow burning relationship that led to their engagement at the Paralympics in Athens. Jason calls Colleen his “#1 fan” and says she has always been totally immersed in his sport even though she is not a runner herself. They combine their love for travel with Jason’s competitions and have travelled all over the world together. It was on one of these trips that life suddenly became complicated.

The chain of events that led to the couple’s life changing surgery began in 2008 when Jason was competing at the Beijing Paralympics. Colleen was traveling to join him, but became very ill during the flight. Upon landing, she was admitted to a hospital in China, where after a few days, she was diagnosed with renal failure. Despite her ill health she wasn’t about to miss his big moment.

Treated by doctors, Colleen was released in time to see Jason and his guide compete in the 1500 m final. But the pervasive nature of kidney disease meant that the couple knew it was just a matter of time before she would require a transplant. And in 2012, when Colleen began dialysis, the transplant became urgent.

I had always had the idea of offering my own kidney for donation in the back of my mind…

“I had always had the idea of offering my own kidney for donation in the back of my mind, but when Colleen’s kidney function deteriorated I looked seriously into being tested to see if I would be eligible,” says Jason. “Ultimately we were a match on two out of the three criteria, which was enough given today’s anti-rejection medication. It really was a no-brainer from there.”

Although Jason was resolute in his decision, there were risks they needed to confront:

“The medical team prepares you for every possible scenario. You know the odds of success are heavily in your favor but surgery is surgery and anything can happen,” he says.

Despite the couple’s fears, the operation was a success: as Jason came out of anesthesia after the operation, his surgeon told him that the kidney started working right away.

 

Jason and Colleen on vacation in Barbados.

Yet recovery was ahead of them. Strenuous exercise was vetoed, but the pair walked together daily, during which Jason didn’t run. Instead, the couple fundraised for ‘Alive to Strive” a charity that works to raise awareness of kidney disease and educates the public about kidney health, by completing 5K races.

Today, Colleen has regained much of the energy she was lacking during the years of her kidney failure. However, she still loves to nap, curled up with their beloved cat, Gracie. Jason jokes that sleeping, is in fact, one of Colleen’s  favorite hobbies.

Jason says that his connection with Colleen has been strengthened through their donation experience. 

It’s actually quite rare for spouses to donate kidneys to one another, says The National Kidney Foundation. In fact, only 13% of kidney recipients are married to their donor, making it in many ways the ultimate romantic gesture. In addition to literally giving your life to your love, there’s something supportive about healing together, and jointly shouldering the burden of recovery. That’s a burden that Jason refers to in a surprisingly positive way: “It was a privilege to be able to take this journey together with Colleen” he says.

Despite the threat to her quality of life, Colleen was the more relaxed of the pair in the run up to the transplant, she gave strength to Jason, who shares that he was feeling very nervous about the surgery.

“Going through something like this inevitably brings you closer,” he says.

Going through something like this inevitably brings you closer…

Following the operation, the disciplined runner took just 6 weeks off to recover. Apart from some post training fatigue, he returned to full form and was back competing in the Rio games in 2016, running within less than a second of his 1500 m personal best.

Runners hate slowing down, of course. But they also know how to pace themselves. While many people would have considered  an  organ transplant as a setback in life, Jason feels that for he and his wife, it was a necessary pause.

“Together, we looked at it as taking a step back to take multiple steps forward and I think that is what has happened. We feel incredibly fortunate to be in good health four years later.”

Colleen and Jason enjoy full and rich lives, including successful careers in marketing and government, an active social circle as well as their commitment to health and fitness.

They still enjoy traveling, most recently vacationing in Barbados, and love to spend quality downtime together. A typical weekend sees the pair taking walks around their city neighborhood, grabbing a coffee and sharing Sunday dinner with family.

Even though Jason is officially retired from competitive running he can’t quite shake the habit. He admits that he still runs 6 days a week, sometimes twice a day.

Colleen knows how important running is to Jason and the role it has played through most of his life. She has always been his greatest champion, ensuring he is well fed and rested for competition and has attended most of his races. When her kidney function deteriorated and she needed him the most, he was prepared to potentially jeopardize his health and his ability to compete in a sport he excels at on the world stage.

The challenge they faced together unites them. As Jason states, “it is part of our history and something which will forever link us.”

 

Immune & Autoimmune Diseases Profiles

Saxophone Colossus

Kidney failure, dialysis, and an autoimmune disorder didn't stop Dayna Stephens from becoming a jazz hero.

Kidney failure, dialysis, and an autoimmune disorder didn’t stop Dayna Stephens from becoming a jazz hero.

One of the best jazz musicians in the country doesn’t listen to music when he’s driving. Instead, he listens to conservative talk radio… despite the fact that he, himself, is not conservative. “My shitty car speakers are better for talk than music,” he laughs, before admitting that he likes learning about the other side’s points. “I like being challenged,” he says. “I enjoy when you think you’ve seen the world in a certain way and then some evidence flips that on its head.”

That experience of having your world flipped on its head? Of being constantly challenged? That’s something Dayna Stephens knows all too well.

Ask around in the NYC or Bay Area jazz scenes about Dayna Stephens, and you’ll get descriptions like “one of the greatest musicians on the planet,” “a staple in the jazz community,” and “literally one of the best in the world at saxophone improvisation.” Then in the next breath, they’ll tell you all about his superlative kindness, generosity, sweetness, openness, and honesty.

 

Dayna Stephens is a jazz saxophonist, EWI-ist, and composer. Born in Brooklyn and raised in the Bay, Dayna picked up the sax at age 12, studied on a full scholarship at Berklee College of Music, and was chosen by Herbie Hancock, Wayne Shorter, and Terence Blanchard to also study at the Thelonious Monk Institute of Jazz at USC. He has performed with Stevie Wonder, Carlos Santana, Roy Hargrove, and lot of other huge names.

In the last decade, he has written and released what fellow jazz musicians admire as a huge body of music. Almost all of it has been critically acclaimed. The New York Times once called him a “must see.”

So why haven’t you heard of Dayna?  Because for six years, he couldn’t tour. So his dizzying catalogue of music hasn’t gotten the exposure it probably deserves.

Upon entering college, a routine medical exam led Dayna to be diagnosed with Focal Segmental Glomerulosclerosis, a rare autoimmune disease in which the body doesn’t recognize the kidneys as part of itself and begins to attack them. “I was nineteen when I found out and I was 31 when it came to its conclusion,” says Dayna. “Conclusion” meant full kidney failure. After that, Dayna went on dialysis which made touring nationally extremely complicated and internationally almost impossible for “six years and two weeks.” That brings us up to October of last year when he finally got a new kidney, as part of an implausibly complicated donor chain: his aunt donated a kidney to someone in Dallas, whose donor’s kidney went to NYC, and that person’s donor “sent their kidney across the river to New Jersey,” to Dayna.

But illness is never the first thing people talk about when they talk about Dayna.

Rio Sakairi, director of the Jazz Gallery in New York, says that “he’s honest in everything he does, for better or for worse, music or politics.” Dayna operates this way without making enemies because, as Rio puts it, “Dayna knows that it’s OK to disagree, and he’s one of those people that knows how to disagree respectfully.”

Dayna says conservative talk-radio listening can get depressing because of the negativity aimed at the Left. “What I really love is having two smart people on either side actually talking and expressing their ideas without losing their cool.” (He cites The Rubin Report, a YouTube channel, as an outlet of this type that he follows “religiously.”)

Not losing one’s cool. It’s a theme that comes up repeatedly when you talk about Dayna.

When he was young he realized that “there are approaches to life that work better than others and being a demon doesn’t work that well.”  Laughing, he adds: “I admire people who in the face of craziness keep their cool. That’s what I strive for.”

I admire people who in the face of craziness keep their cool.

According to his longtime student and fellow Bay-bred, NYC-located jazz musician Samora Pinderhughes, even in a state of full-blown kidney failure Dayna remained positive and calm. “I only ever saw him express frustration about the broken the health care system. Never about his own horrible experience being on the waiting list for a kidney.”

Understanding Dayna’s life-attitude genius may be the key to understanding his musical genius. His propensity for respectful discord and willingness to have his mind changed define the way he approaches playing improvisational music. “It’s a vulnerable feeling,” he says.

 

Vulnerability is another recurring theme when discussing Dayna’s character, physical condition, and music. “Dayna’s so comfortable being vulnerable,” says pianist and composer Pascal Le Boeuf. “He wears his heart openly, which is hard to do in New York in particular and especially in the jazz scene. He’s obviously had a lot of challenges with his kidney transplant, but he’s never shy about telling people where he’s at… It invites people to share themselves in a way that’s more human, more close. It helps other people be more authentic.”

Openness and its resulting vulnerability become a musical technique. In life, as in jazz, as Dayna says, “you can’t know what’s coming. You never know when the group is going to change direction.”

Some faculties can help though, mainly and especially listening. “I strive to be a blank slate, just completely aware of what’s happening,” he says. Dayna tries to teach his students to think of the group more than they think of themselves.

Le Boeuf says,Dayna is somebody that people look to to learn what is possible, because as an improvising musician he’s able to communicate and connect deeply with other musicians. And that’s really important in jazz.”

When Dayna plans a performance, he first designs the set lists around what music will bring out the best quality of the musicians playing.  After establishing a chart and time signature to give structure, he’s against pickiness. “Like in any conversation that we have as adults in language,” he says, “you don’t want to control what the other person is going to say.” He believes this produces an “organic and earthy” sound.

“There’s a different formula for every performance,” Dayna explains, then self-corrected; “well there’s two important elements—drums and bass.” He thinks about “making those the best canvas for a song, and from there it’s easy.” Easy for Dayna, maybe, because he’s drawing on almost two decades of writing music.

And in writing his music, his relationship to harmony in dissonance comes into play again. He loves classical music and his jazz compositions are infused with many of its elements. For example, he explains, “classical harmonies are simpler than jazz harmonies and have a lot less dissonance,” so he likes to “mix them into the more-complicated jazz.” So essentially, he’s using harmony to create discord—or the other way around—or both.

There’s about a 30 percent chance that Dayna’s body could start to attack his new kidney. But that hasn’t stopped him from teaching and touring internationally, and recording a new album, Gratitude, dedicated to the people who helped him through the waitlist and transplant process. And that gratitude is real: the jazz community raised tens of thousands of dollars through crowdfunding and multiple benefit shows to help cover Dayna’s medical expenses.

Also, he just got his heart checked and it’s perfect: “I couldn’t ask for a stronger heart than the one I have now.” The jazz world agrees.