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Health & Fitness

The Skater Kid Finds His Tribe

Born with spina bifida, Josh Bridgewater never felt like he belonged until he stepped on a skateboard for the first time.

It’s not uncommon to hear Josh Bridgewater say: “Tell me what I can’t do, and I’ll tell you when I’m done doing it.” But by that time, you’ll already know it’s true.

His radiant personality is what captures all the attention, so it’s not evident just by looking at him, but Josh came into the world not expected to live, let alone live well. Yet today, he’s the oldest skater with spina bifida in the world

Kathy Bridgewater, Josh’s mother, was just sixteen years old when she got pregnant, which was challenge enough. But worse news was to come. “They told her my life was not going to be good,” says Josh. “My spinal cord was sticking out of my body. I would not walk. Would not get married. Would not amount to a whole lot. ”

Josh had myelomeningocele, the most serious form of spina bifida in which the backbone and spinal cord do not close before birth. It affects 1 in 4000 children yearly.

Josh Bridgewater.

Against her doctors’ recommendations, Kathy gave birth when she was 17. Immediately after, Josh had his first surgery, which successfully put his spinal cord back in his body. “My earliest memories were hospital appointments: testing, poking, prodding, having my gait analyzed,” says Josh. He spent time and out of the spina bifida clinic with other kids who got around in wheelchairs or walkers, but had a hard time relating. “I didn’t see the similarity, but maybe I didn’t want to,” he remembers.

Yet the similarity was real. Because of his condition, Josh was skinny and weak, with bowed legs and partial paralysis from the waist down. He could easily get cuts on his extremities, and start bleeding without feeling it. A lack of bowel and bladder control required diaper-wearing and an external urine bag, and contributed to significant insecurities and challenges for an adolescent boy. Very visible accidents were common. He became a target for bullies. “I don’t hold grudges – these were adolescent kids,” Josh asserts. But things were not good. He was a kid without a tribe.

He was a kid without a tribe.

Everything changed at age nine, when Josh got on his stepfather’s skateboard for the first time. He had to sit on it to move, but it set into motion a positive avenue for both physical and emotional healing. He learned how to ride standing up. “The doctors were amazed,” he recalls, “though some of them wished I wasn’t doing it!” Through skateboarding discovered a small like-minded crew, and found something that could transcended the negativity.  

The next “life-changer” surgery was at seventeen. No more external urine bag; he got an artificial urinary sphincter. Roughhousing wouldn’t be as much of a concern now, and skateboarding could get more assertive.

He was now a young man with a future he wasn’t supposed to have.

Josh admits to a couple of suicide attempts, a lot of bad decisions, and substantial mental disrupt during those years. He had deep emotional wounds. He hadn’t dated. His social life was insecure. 

Josh tries to inspire other kids who have spina bifida to live bigger than their diagnosis.

He had been watching other people with disabilities (“no one in particular, but as a group”). They were doing things and getting by. So one day, tired of the emotional rollercoaster, Josh resolved to start “rocking at living.”

Skateboarding was the key. He focused on being as good as possible: progress, but not perfection. Given his catalog of physical issues–“balance issues, no real calf muscles, crooked feet, bowed legs, lack of feeling, curled and missing toes,” Josh nonchalantly lists–it might take him ten times longer to get a move right. but he persevered. Josh’s determination got the attention of pro skaters like Mike Vallely, Lance Mountain, Ray Barbee who became mentors and friends. 

Josh and his wife, Shawna.

His greatest support, though, comes from his wife, Shawna. They met via email through a business connection. Because of his spina bifida, he “dumped everything on her and gave her a million outs” during their online relationship, but after two years, he moved to Long Beach, California to marry her in 2010. 

Living in the beach community of southern California gave Josh access to many skateboarding opportunities. He earned a spot on the Adaptive Action Sports Skate Team, a team of athletes with birth defects or missing limbs. Through them, Josh then earned his first sponsorship at the age of 41 through Half Dead Skateboard, which has since grown into an entire network of supporters.

Today, skateboarding serves as both a means of physical and emotional therapy for Josh. He has to be hyper-focused, especially on 12-foot concrete  “Even with my attitude there are somethings I just can’t do,” he admits. “But I get creative, and customize my skating to my abilities.” 

Do rad things and rad things will happen to you.

Skateboarding isn’t the only thing Josh does: he’s also an accomplished snowboarder, surfer, and mountain biker. Pretty much any adaptive action sport Josh can find, he does. A prolific sharer on social media, he has also started a line of t-shirts and hoodies emblazoned with the motto PMA (“Positive Mental Attitude”) as a way to cover his medical bills. Through this, the #pmaalltheway hashtag has become a a Josh-generated movement for  folks and families refusing to let physical and emotional challenges get the best of them.

“Do rad things and rad things will happen to you,” is how Josh sums up his life. After decades of “ridicule, failure, bullying, abuses, depression,” he says, “it’s about getting through it and standing on your own.”

Essays

How Do You Talk To Your Kids When You Have Cancer?

My diagnosis is teaching me about fatherhood, and how to prepare my kids for the day when I'm not around anymore

Weeks before my son was born, I had my first seizure.

It exploded in epic grand mal fashion, turning the evening sky into the brightest rainbow I had ever seen. For a minute or two, the corner of Austin’s 3rd and Congress turned into a dance of brilliant color.

When I opened my eyes, less than a second later, I was strapped to a gurney, covered with blood.

The author and his son, Soren.

This traumatic turn of events was what led to me being diagnosed with oligoastrocytoma, a type of terminal brain cancer. But before I could even think about what this meant for me, I needed to think about what it meant for my pregnant wife–then in her third trimester– and the child that was soon to come.

I didn’t have long to think about it, though. Six weeks later, and only hours after my second brain surgery, my son Soren was born. The surgeons had only just finished closing the hole in my head with 140 staples, having just extracted the last visible traces of my tumor.

Ever since that moment, almost four years ago, I’ve been two things: a cancer survivor, and a father. I’m technically living on borrowed time, but my wife, Erin, and I do our best to keep moving forward. After Soren, we added a brand new set of twins to our already cacophonous lives, and I joined the ranks of stay-at-home dad to give myself more time to heal.

Each day brings new challenges — not as traumatic as chemo and radiation, but interesting in their own way, because beginning a family while dealing with cancer isn’t something most people have to go through.

Beginning a family while dealing with cancer isn’t something most people have to go through.

The moment my son was born, I was catapulted into the always moving, always changing world of fatherhood. Having a new child would have been difficult enough to manage in simpler “normal” circumstances, but adding the layer of this major health challenge caused the experience to go screaming past the sound barrier.

Before I had it, cancer was always a strange, black magic sort of topic to me. Until it was in my life, it was as mysterious as the stars in the sky. But every time I heard the pulsing of an MRI, smelled a radiation machine burn my skin, or felt the spark of an oncoming seizure, I had to learn a little more about how to speak about cancer–not just with adults, but to my children.

Soren at his first baseball game.

Soren and the twins aren’t quite old enough yet to fully understand the significance of my illness. They will someday soon, though. The other day, my one-year-old, Mira, looked me in the eyes and said “Hi!” I was delighted to hear her first word, but in the back of my head, I asked myself: how long until she’s asking me about my sickness?

At night, I think about what I will tell them when they start to ask about my cancer. Or maybe they never will, and it’ll always be just a normal part of their life. “My dad has brain cancer,” they’ll say to their schoolmates, as if-you-please as if I were a postman or fire fighter.

There’s a darker possibility, too. Will they be saying “my dad had brain cancer, but he’s not here anymore?” These are the thoughts that keep me up at night.

Will they be saying “my dad had brain cancer, but he’s not here anymore?” These are the thoughts that keep me up at night.

Right now, I’m just trying to share my love for them as openly and honestly as possible. I also want to show them that their dad isn’t afraid, even though there are private moments when I am, and think desperately about how much I want to live through this. 

And more than ever, I do want to live through this. The mere fact that I’m still alive–let alone feeling healthy now–amazes me. Yet I hold on to the deepest knowledge that, short of a major new medical advance, I am going to die of my disease someday. And yes, I am afraid of that, not just for myself, but for what this terminal diagnosis means to me and my wife and children.  

Mark, Soren, and the twins on a day out.

I work hard on my fear, and try to keep my voice level so that my wife and kids can’t hear it. Yes, my wife and I are scared shitless at times. But I don’t want my kids to sense that fear. Instead, I want them to understand: to be able to talk to them about what is going on inside of my body without focusing on the fear. 

So I talk to them about my cancer in a roundabout way. I try to teach all my kids as much about science and medicine as they are capable of understanding. New medical breakthroughs are happening all the time that could potentially cure me, so to my oldest, I’ll talk about neuroscience, so those breakthroughs will one day be grounded in something he understands, whether I’m here to talk to him about them anymore or not.  (Yes, you can talk about neuroscience with a toddler!) 

Whether I’m cured, or whether I eventually succumb, I want my kids to truly understand what their dad went through…

Whether I’m cured, or whether I eventually succumb, I want my kids to truly understand what their dad went through physically as well as emotionally. That’s why I write about cancer elsewhere, and why I’m writing this. There’s no easy way to talk to your kids about having terminal cancer. But while I’m still here, I’ll do it as best I can: with integrity, and without fear.

Because even if I die, I want my kids to one day know that because of them, I won my battle with cancer. Their presence in this universe would have been impossible without me; to have survived long enough to help give them life has already made my life valuable. This strange experience of having a body, a somewhat mis-calibrated one, a mis-created one, was a part of their life story. And  because of that, to understand themselves, they’ll need to understand cancer too.