Running for Joseph

News feature about a local inspiration (originally written for The Eagle Times)

Only minutes after Joseph Cornelius crossed the finish line at the San Luis Obispo half marathon, a woman ran up to him and took hold of the jogger in which he sat. With certainty and sweat sparkling on her brow she told him: “You’re the reason I ran this today. I’ve heard about you; I’ve seen what you do.”

     “You don’t have any excuses. I don’t have any excuses,” she said.

     John Cornelius, Joseph’s father, reflected on this moment with a special softness in his voice and the beginnings of tears in his eyes.  

     “You could just see the empowerment in her,” John said. “Joseph can’t walk, can’t talk. How does he bring people together like this? There’s really something in him. I love when somebody else sees that.”

     Races, and moments like these in particular, are the main source of motivation for John and Joseph. The Cornelius household seems a physical manifestation of empowerment-- walls are collaged with framed race pictures and chunky marathon medals; old bib numbers are clipped to even the refrigerator door.  Yet as abundant as it all appears, only about five years ago the same walls were bare.

     When Joseph was born in 1994, he was diagnosed with severe cerebral palsy and spastic quadriplegia, meaning he would be perpetually nonverbal and lack control over his arms and legs almost entirely. Unlike general cerebral palsy, spastic quadriplegia involves near constant painful jerking and lurching of the muscles. Further, though, is the individual’s inability to make use of words as a psychological buffer to the physical pain. The distress in someone like Joseph is intensified in that coherent language is inaccessible; within him is a suffering that may only be expressed through cries.

    Because of this, caring for Joseph’s needs is an extraordinarily difficult job for a parent to have. It is brought back to John that Joseph’s earlier developmental stages were the most frightening and exhausting.

    “It was so hard to know what he needed,” John recalled. “I would try everything until I could calm him down.”

     Near any disturbance--including phones ringing and sneezes--could trigger great distress and often a seizure.

     “Life was ushered into a housebound state for those years,” John said.  

     Along with suffering from 75-100 seizures per day, young Joseph had an exceptionally sensitive nervous system that inhibited him from nursing properly and lowered his chances of survival.

     “Just trying to feed and medicate Joseph could take hours. He would struggle and struggle, but I obviously couldn’t quit,” John said.

     As John experienced it, he reached a point as the caretaker in which an undeniable swell of exhaustion, sickness, and sun-starved misery undertook him. Although these sacrifices were ones he would regretlessly continue to make, John began to realize that even Joseph would suffer if his caretaker continued to deteriorate.

John called it a “fork-in-the-road moment,” which looked much like a “lose-lose scenario.” Either he accept living every day on eggshells to protect Joseph from the immense danger of the outside world, or he relax his approach and jeopardize as much as his son’s life.

Neither seemed acceptable to John. So rather than choosing a path in the fork, he chose to forage one down the middle.

     “I decided that I wanted him to live life,” John said, “to be out and experience everything: movement and wind and sun and rain--everything that the rest of us take for granted. I would do whatever it took to make that happen.”

     It was much to wish for his son, a boy who then could scarcely swallow, but he began with small steps.

     The beginning step was to have a gastric tube surgically installed in Joseph’s stomach through which he could be nourished and medicated. After this procedure, John did notice some progress in his son’s strength.

     “Something in his nervous system improved with the feeding tube,” John said. “He was able to handle wind and noise without discomfort.”

     What made the greatest improvement in Joseph’s ease, though--and what few could have predicted-- was simply being in motion.

     John began what would become a lifelong routine of morning walks with Joseph. At four A.M. his alarm would sound, and after a glass of orange juice and a bowl of oatmeal, he’d buckle Joseph into his jogger and push him from the kitchen to the living room to the yard and back until relaxation was reached.

     “Joseph needs to start moving early because that’s when he wakes and is in the most agony,” John explained.

     John found himself needing to hold onto his own hope in order to maintain this ritual in the beginning.

     “The doctors thought it was a long shot in terms of improving his wellbeing. They thought I was doing all this work for nothing,” he said.

      John’s work was for more than something. Gradually, he was able to push Joseph in places outside of the house-- into the noises and movement of the outside world which were historically intolerable for Joseph.

     “He could handle being pushed on walks around the neighborhood, then walks to the park, then finally jogs,” John said with bright eyes. “When I run him, he’s somehow at peace.”

     Joseph has continued to experience the therapeutic qualities of simple motion that most of us grow to ignore. Now, at 24 years old, Joseph wheels through dozens of marathons and fun runs a year with the help of the loyal Team Joseph.

     “I met most of the team [Michael Lara, Jesse Perez, Paul Sands, William Walters] in the beginning through Team in Training, which was a running group raising money for kids with cancer,” John said. “It was mine and Michael’s idea at first. Eventually we all banded together to form what we have going on here.”

     The group of Team Joseph runners race as one force in motion. They stay in a tight pack of matching red and yellow t-shirts and a new color of water bottle every race, but with Joseph always in the center. They alternate turns pushing Joseph in his jogger until he crosses the finish line (which has been successfully done every race).

     “I love running Joseph by myself,” John said. “But it’s pretty awesome to see someone else running him too. You see them get that connection. Because you don’t really know until you do it.”

     John considers the connection between Joseph and the runner pushing him to be almost indescribably profound.

     “My buddy Michael was running Joseph up on Orcutt, and it’s a pretty long climb up there,” he remembered with glassy eyes. “And he was just flying. I asked him after, ‘Michael, how did you do that?’ And he said to me, ‘Joseph was pulling me.’ And I laughed, but he was serious. Joseph’s heart was pulling him up that hill.”   

     Throughout the years, John has witnessed these feelings of camaraderie and support to be infectious in the running community.

     “Students at Cal Poly even built an ‘Aquabullet’ for Joseph so we can pull him in triathlons,” he said.

     Joseph enjoys all movement; biking and even surfing equipment have been built for him by the same students. But running is his absolute favorite.

     “When we’re running him, he’s just at rest,” John said. “With all the medical things he’s got going on, for awhile he just gets to look around and enjoy moving through nature. He’s so happy,”

     John added with a grin, “--that is, until you stop. I was running in Fresno with him and hadn’t stopped for a whole 22 miles, so I decided to take a quick water break. As soon as I stopped at the water station, Joseph started throwing a fit.”

      “I thought, ‘Really?’” he said with a smile. “On mile 22 I can’t take a twenty-second break? And the second I started running again, he’s as happy as could be.”

     “They call him my running coach,” John laughed.

     In all seriousness, he recalled how moving with Joseph has truly “coached” him into transforming his own relationship with running.

     “I used to be so competitive that I never really saw the course or enjoyed it,” John said. “But right now, there’s a whole different way to it. You really see the beauty of everything and you talk to people more”.

     Not only has Team Joseph connected John to some of his closest friends, but it has also allowed for a richness in his son’s life that he once didn’t believe was possible.

     “I don’t honestly know how much of life he understands. Most things, I think, he doesn’t understand. Swallowing he doesn’t understand. But I do know he understands this.”