Anthony Ward and Zack Tusing first met over a decade ago at a specialized summer camp for kids interested in learning about aviation. Zack, a teenaged camper, and Anthony, a counselor just a few years older than Zack, quickly bonded over their shared enthusiasm for flight. After that first summer over a decade ago, the two stayed in touch, catching up on social media and cheering each other along as they each began embarking on careers in aviation.
But it was Zack’s diagnosis of a spinal cerebrospinal fluid (CSF) leak that brought their friendship to a new level.
What is a spinal CSF leak?
A spinal CSF leak occurs when there is a hole, tear, or defect along the spine in the dura mater—the tough outer layer of the membranes that surround and protect the brain and spinal cord—allowing CSF to leak out. CSF is a clear, colorless liquid that normally bathes the brain and spinal cord, providing cushioning and protection. CSF also functions as a kind of waste-removal mechanism, clearing the brain of biochemical waste and delivering nutrients to the nervous system. When a person has a spinal CSF leak, this indispensable fluid that keeps the brain nourished and afloat slowly seeps out, leading to a drastic reduction in CSF volume and pressure. The consequences are both physically and mentally agonizing, as individuals grapple with debilitating head pain and an array of neurological symptoms. (Read more about spinal CSF leak symptoms here.)
Symptoms begin and a friendship grows
Zack first began experiencing symptoms of a spinal CSF leak in 2019, when he was working as a flight instructor. At first it was a nagging head pain that defied treatment. And then as time went on, other troubling symptoms followed: terrible fatigue, a startling loss of motor control. Eventually, he had to take a leave of absence from his job.
“It all started right when I should have been starting to live an adult life. Like, I feel like I skipped a healthy young adulthood,” he said.
His journey with spinal CSF leak would ultimately span four years, with many detours along the way that included invasive testing, unsuccessful treatments, and even surgeries, none of which yielded lasting improvement.
Like many people with spinal CSF leak, Zack struggles with brain fog and even memory loss—but he remembers his early friendship with Anthony, and how Anthony was supportive, right from the start.
“When you’re at that stage of first getting a diagnosis, your life kind of gets turned upside down. It’s very jarring, and you feel like you lose grasp of any sense of normalcy,” he said. “So having someone commenting on every post I made online and being encouraging and things like that was really huge to me. It was nice to have someone care that much about showing support and making sure that I had people that that were in my corner the whole time, no matter what was happening.”
Even once Zack finally had a diagnosis, he faced an uphill battle in terms of treatment, and that was challenging, too: “I think one of the hardest things in dealing with a spinal CSF leak is knowing what you’re facing, but not knowing how to fix it.”
Finding a new way to show support
When Anthony saw Zack’s social media posts in 2021 about yet more upcoming medical procedures, he realized he wanted to do something to help his friend beyond the virtual cheerleading he was providing. Though he’d never done anything like it before, he decided to challenge himself to participate in an Ironman competition—a grueling triathlon consisting of a 2.4-mile swim, 112-mile bike ride, and 26.2-mile run, all in one day—and dedicate his race to Zack.
Anthony created fundraiser for the event called “Team Ward for Team Zack” to raise awareness about what Zack was going through.
“My original intent was to raise money to help with Zack’s medical expenses,” he said. “And it says a lot about Zack’s character that he immediately turned around and said, ‘Instead of raising money for me, would you mind raising money for an organization that funds research into spinal CSF leak?’ ”
Zack saw Anthony’s Ironman challenge as an opportunity to bring attention to not just his own particular experience, but to spinal CSF leak in general, to reach the widest possible audience. To him, that meant raising funds for the Spinal CSF Leak Foundation.
“Aside from the research studies the Foundation funds and the education of physicians and patients, I just really love how patient-connected the Foundation is,” he said.
Together, Zack and Anthony designed a t-shirt for the event: the front of the shirt featured “Team Ward” on the left side and “Team Zack” on the right, with a line drawing of an airplane flying in the middle as a nod to the shared interest that first sparked their friendship.
A new appreciation for physical and mental limits
Anthony trained for a year, working out six days a week, fully committing himself to the process. “You’ve got to be there for your friends,” he said. “And I really wanted to express to Zack that he wasn’t alone in this, that he had a team behind him—Team Zack—that was always going to be there supporting him through this journey.”
As Anthony trained, he felt a deeper connection to Zack’s struggles: “I can’t compare myself to Zack, and what he was actually going through with his health. But it helped me understand.”
At some point along the way in his rigorous training regime, Anthony began to feel overwhelmed by what he was trying to attempt and began to lose his motivation. He wrestled with the notion of quitting his training and giving up altogether. But reading Zack’s social media posts about grappling with his health made Anthony realize that the kind of difficult emotional and physical stress that Anthony was experiencing was something Zack had to cope with every day. It not only gave him insight into what Zack’s life was like, it gave him a reason to keep going in his own fight as well.
“Team Ward for Team Zack was as much for me as it was for him,” Anthony says.
For his part, Zack was impressed by his friend’s willingness to persevere. “It really is a testament to mental fortitude—which is so important for people with chronic illnesses because it’s almost like the mental part takes over the physical part at times. So seeing Anthony do that was really inspiring to me.”
Anthony agreed, noting that even though he’d never done a marathon before, let alone an Ironman, it was actually the mental piece of things that was the most challenging for him, not the physical training. “You can’t listen to music while doing the Ironman, so it can be a truly lonely experience. You can get in your head. But for me, what got me through the race was thinking about what and who I was doing this for.”
Anthony on his bike during the Ironman
Racing to the finish line
On race day, under the hot Arizona sun, Anthony battled nerves and overwhelming anxiety. But once he hit the water for the 2.4-mile swim to start the race, he realized he was quite literally all in. The swimmers started out in the Tempe River, which just so happens to snake its way through the desert directly beneath the flight path for the Phoenix Sky Harbor International Airport. Anthony noted, “During my swim, as I was looking up, I would see an airplane every now and then, and it immediately reminded me of Zack, with our shared love of aviation, and made me think, there he is, looking after me.”
Zack followed Anthony’s progress online via an app designed to track the events of the race, and he was also able to get updates from his brother, who had flown out to Arizona to be there in person. As for Anthony, throughout the day-long event, he faced several moments of chaos—spilling a drink bottle filled with precious nutrients that were supposed to last him 100 miles; losing the CO2 pump that could help in the event of a flat tire; screws literally falling off his bike mid-race, making his bike seat precariously wobbly. But each time Anthony found himself confronted with an obstacle or contending with something that forced him to deviate from his careful plans, he thought about Zack and what Zack lived with every day, reminding himself: “You just have to keep going.”
Anthony in the home stretch of the Ironman
Making an impact
Immediately upon crossing the finish line, Anthony was greeted by Zack’s brother, and together they called Zack to tell him the good news. Though Zack had been following Anthony’s progress online, being able to talk to each other right as it was over was a powerful experience.
Anthony’s efforts resulted in Team Ward/Team Zack being the top Ironman fundraising campaign, raising 59% more than the average fundraiser. “I thought that was kind of cool,” Anthony said afterwards. “The shirts, the donations—they all came from people that neither of us knew personally, from as far away as Hawaii to California, Wisconsin, Minnesota, Atlanta, New York… people all over the United States just contributing to this cause, learning about spinal CSF leak, getting Zack’s story out there, and just showing support.”
Anthony and friends, including Zack’s brother, after the race
For Zack, the support Anthony has shown to him during their friendship has been crucial. “It’s really been a blessing to have someone that supportive in my life, because I think a lot of people don’t know what to do when someone has a serious debilitating condition. They almost like to keep their distance. They’ll wish you well, they’ll say some prayers, and, you know, that’s fine, too, if that’s what they’re comfortable with. But I think it takes it takes someone who’s really invested in you and in your care to really take a step forward instead of a step back.”
“I think taking a step back is the natural thing to do,” Zack added, “because it’s confusing. There’s a lot of stuff that people don’t understand when you’re sick. And it’s hard to see someone like that. So to have Anthony step forward and then do all these other things has really been encouraging.”
Anthony acknowledged the difficulties of knowing how to help a friend or loved one who’s suffering: “It’s almost human nature to think, I’m not sure what to do, maybe I’ll step back a little bit. But you know, being there, staying with that uncomfortable feeling—that’s okay. That’s how you learn. That’s how you learn how to care, and you get better at it together.”
Anthony visiting Zack in the hospital after one of his many procedures
The road ahead
Today, Zack is recovering from exploratory surgery to find the source of his leak—and is optimistic about his future. After spending two weeks in the hospital, he’s now back home and reports that while before he had struggled to be upright for any length of time, he’s now spent nearly a month being upright almost all day each day, and feeling “decent,” despite battling some rebound intracranial hypertension (increased intracranial pressure). (For more information, you can view the slides of a talk by Dr. Deborah Friedman about RIH here.)
As for Anthony, his interest in triathlons has only continued to grow. “Admittedly, after I completed the Ironman, I was like, ‘Alright, I’m done, I want to leave my bike in Arizona, and just move on with my life.’ But oddly enough, the bug has bitten me.” In fact, he recently flew to New Zealand to do another Ironman and has since competed in several more triathlons.
And, as a nod to Zack and his continuing support of spinal CSF leak awareness, he has signed up to participate in the Spinal CSF Leak Foundation’s duradash®, an annual activity challenge to drive funds for research and education.
Luckily, the theme of this particular event is “start where you are,” and any activity counts—no triathlons necessary.
Anthony and Zack with their Ironman medals from Anthony’s race