On March 8, 2020, 32-year-old Jon Custodio was enjoying a normal Sunday at his home in Barnstable, Massachusetts on Cape Cod. Until, out of nowhere, he began to lose sensation in the lower half of his body. Within 45 minutes, he became completely paralyzed below the diaphragm.
Custodio had suffered a spontaneous spinal epidural hematoma. A sudden hemorrhage in his spine began to bleed aggressively, leading the resulting blood clot to compress three-quarters of his spinal cord.
He was rushed to the local hospital on Cape Cod, condition worsening by the second. When he arrived, the doctors couldn’t figure out what was wrong, so they performed an MRI and found a mass in his spine.
At the time, they weren’t sure exactly if it was a tumor, a blood clot, or something else entirely. Regardless, it was a ticking time bomb, and Custodio’s life depended on quick treatment. He checked into the hospital a little after midnight, and it was getting towards late morning.
“Neurons [in your brain] can only really sustain a lack of oxygen and blood flow for about five to 10 minutes before they die off,” Custodio told Runner’s World. With every minute that passed, Custodio’s chances of survival diminished.
Spinal aneurysms of Custodio’s kind are incredibly rare. According to Custodio, only 350 cases occur in the United States in any given year. In almost all cases, they occur in people who have multiple medical conditions at once—such as high blood pressure, hypertension, cholesterol problems, or bleeding disorders—or in people that use aspirins and non-steroidal anti-inflammatory drugs (NSAIDs). They typically don’t occur in healthy 32-year-olds.
His care team flew him via helicopter to the ICU at Brigham and Women’s Hospital in Boston, where the doctors were more equipped to handle his situation. They diagnosed that it was a blood clot and performed emergency surgery. Unfortunately, the outlook was bleak.
“At the 12-hour mark your neurons are consistently dying,” said Custodio. “After 12 hours, there’s no chance of recovery. So, the fact that I was in that state for as long as I was, was not good. ... I was told that they weren’t sure if I’d ever walk again and that my internal organs would probably not function properly again. They really prepared me for the worst-case scenario.”
After the doctors left for the night and Custodio was all alone in his room, it started to hit him: “You start thinking, ‘I’m never going to be able to go up a flight of stairs again.’ You can’t go to the beach; you can’t go on grass with a wheelchair. You can’t call an Uber. You’re never going to be able to go to your friend’s house if they don’t have handicap ramps. You’re not going to be able to go to places without elevators. You realize this is going to be a really lonely experience.”
But Custodio had an amazing medical team, including a doctor with a background in neuroscience, that helped him understand his best chances for survival.
“I knew that it was super important to get blood and oxygen to the neurons as fast as possible for my spinal cord,” Custodio said. “It was also really important to try as best as I could to get up and walk as fast as I could, and even if you can’t walk, try to move the muscle, visualizing [walking].”
Custodio resigned himself to his fate. But by doing so, it made it easier for him to set goals; instead of worrying about his life five years from now, he focused on what he could accomplish each day.
Yet one goal stuck out in Custodio’s mind. On his second day in the ICU, he told his sister over the phone that if he got better, he would run the Boston Marathon. He’d never run a marathon before. He wasn’t even a runner and didn't understand why people ran marathons at all. But one of his nurses mentioned that she ran on the hospital’s Stepping Strong Marathon Team—which raises money for the Gillian Reny Stepping Strong Center for Trauma Innovation, founded by the family of Gillian Reny, who was nearly killed in the Boston Marathon bombing in 2013. Custodio was inspired to help.
Custodio said that during his third day in the ICU, his doctor noticed that he regained two millimeters of movement in his left foot’s pinky toe. “I remember thinking, if [my doctor is] excited about two millimeters of movement, then it’s going to be a long road,” he said.
Once they had successfully stopped the bleeding in his spine, he was transferred to the Spaulding Rehabilitation Hospital in Charlestown, Massachusetts to start rehab and physical therapy.
The recovery process was incremental. First, the goal was to sit up in bed. Then, to try sitting on the edge of the bed. After that, standing with two nurses pulling him up. From there, it continued to progress, from shuffling a foot, to taking a step, to taking two steps with a walker. He rehabbed between three and five hours a day with the help of physical, recreational, and occupational therapists, as well as psychologists.
Custodio was so determined that he figured out his nurses’ schedules, so that when they were off-duty, he would lock himself in his bathroom and work on squats and ankle flexions in secret.
“I was totally breaking every rule,” he said, laughing. “But I did because I wanted to attack it as hard as I could.”
After a month, Custodio was able to walk 300 feet, though afterwards he would be so exhausted he’d need to rest for hours. He moved from Spaulding to Cape Cod Rehab, which was closer to home, where he worked on bending over, touching his toes, and building leg strength. Eventually, he was able to stay at home and work on the exercises, only needing to go into the rehab center for three hours per week.
During rehab, all he could think about was being able to run. “It’s such a far stretch that you don’t want to set yourself up for failure,” he said. “But I figured out that I wished I could have just one day of being healthy again, and all I would do that day would be to run everywhere.”
By August 2020, Custodio realized he would be able to jog again, but running a marathon was still a long shot away. Undeterred, Custodio called up Brigham and Women’s Hospital and told them he wanted to run the Boston Marathon. At that point, he wasn’t medically allowed to get his heart rate over 170 beats per minute.
But finally, after 15 months of intense rehab, he was given the okay to race and offered a spot on the Brigham and Women’s Stepping Strong Marathon Team in July.
Training didn’t come without challenges. Custodio couldn’t feel his left leg very well. His right leg was extremely weak, especially in the hip flexors, and would shake violently when it got tired. But he managed to string along long training sessions, including a difficult 17-mile long run. In the meantime, he was featured in a local Boston news story and raised $23,679 for Stepping Strong.
As the race day approached, Custodio became more and more nervous: “I raised all this money, they made a freakin’ news story on me. I have to finish it!”
When he reached the starting line on Marathon Monday, on October 11 this year instead of the traditional Patriots’ Day, his nerves vanished. He stepped off the line and started running.
In his words:
“Every single person on that route is in a lawn chair, cheering you on, their six-year-olds handing you orange slices. I got up to five miles and I was like, man, I feel great. This is incredible. I was really grateful to be alive.
I was running super slow, just making sure I could pace myself and finish. I was taking pictures with people and high-fiving everybody I could.
And then you start to get a little deeper in the race. I still have that doubt in my mind, I'm still 18 miles out. Then you're coming up on 13—already a half marathon in the bag—and I'm feeling really good. I'm making sure I'm drinking tons of water, probably too much water and stopped at the bathroom way too many times, but that's okay.
The deeper and deeper I went to the race I realize I’m definitely going to finish. At mile 17 or 18, so just before Heartbreak Hill, the Stepping Strong Foundation had a little cheering section. My whole family was out there, and I could tell I had a lot of energy. That's when it really turned into a celebration. There’s no way I was going to quit now.
I had heard so much about ‘Heartbreak Hill,’ this awful thing. It's got this terrible name, it's scary. So I ran through those sections, just to say I did it. That was really important to me.
Then you hit Boston College. There are all these college kids, they've been drinking since God knows when. So, they're all fired up, they're going bananas. I had my name on the singlet and they were screaming my name. You just feed off the energy. It was definitely one of the most memorable moments of my entire life.
You finally feel the momentum building and the crowds getting bigger and louder and more raucous the closer you get to Boston. And then you take that famous turn and you pop out on Boylston Street. It just feels like every single person in the city of Boston’s cheering your name, and it’s absolutely unreal, just an incredible feeling to finally get down there and do it.
I was crying as I crossed the finish line [in 4:48:06]. It was such an emotional release of a year and a half, almost two years of build up to that moment. I’m so grateful for having had the opportunity to do it, not only for myself, but for my medical team, the hospital, and the Stepping Strong Foundation.”
Custodio doesn’t think his journey from paralyzed to running a marathon was a miracle. Instead, he frames it as the product of the dedication of his medical team and the hard work he put in to get better. He credits the Brigham Stepping Strong Marathon Team for giving him the courage to chase such a lofty goal. Including his contribution, they raised $987,132 at this year’s Boston Marathon to change the lives of civilian and military trauma patients.
Custodio is ready for some well-deserved rest: “I think I’ll take some time to enjoy this one and let the body heal up.” But he’s got his eyes on the calendar for the next Marathon Monday; April’s right around the corner.