Resilience Is Everything
- Shane Burcaw is a viral YouTuber and nonprofit founder living with spinal muscular atrophy, or SMA – a disorder affecting the motor neurons which control voluntary muscle movement.
- He and his wife, who is his caregiver, have amassed quite the following sharing stories about navigating life with resilience and humor.
- Shane recently celebrated the fact that his story about exclusionary parking rules in West Hollywood, California, resulted in new regulations that made the city more accessible.
- One of our cancer experts says he’s seen positivity play a role in role in survival rates for his patients.
- If you’re a survivor of any kind in need of some inspiration, check out SurvivorNetTV’s films “Resilient” and “Charged – The Eduardo Garcia Story.”
Shane Burcaw and his wife Hannah are known as “Squirmy and Grubs” on their YouTube channel and other social media platforms. They have amassed quite an online following with the resilience and humor they’ve displayed in the face of adversity, something survivors of all kinds can find inspiration in.
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Shane has spinal muscular atrophy. According to Johns Hopkins Medicine, spinal muscular atrophy, or SMA, is a disorder affecting the motor neurons – nerve cells located in the spinal cord that control voluntary muscle movement.
Because the muscles cannot respond to signals from the nerves, they atrophy – or weaken and shrink – from inactivity. This can lead to a variety of symptoms that involve a weakness of the muscles that control movement. They can range from mild to disabling.
After “[starting] a humorous blog to tell his life story of living with a disease that made his muscles waste away as he grew older,” Shane gained many followers. Now, he’s the founder of Laughing At My Nightmare – a nonprofit working to ensure that disabled people get equitable resources – and a viral online presence.
Caregiving: An Opportunity for Healing
In recent episodes of the couple’s podcast “Junkyard Mayhem,” the couple talked about their experience out and about in West Hollywood, California. Because of the way Shane’s wheelchair needed to exit the van, Hannah could only back into the designated parking space. However, a parking lot rule said cars could only park head-first.
“If you’re familiar with West Hollywood, there’s nowhere to park,” Shane said in a video from the end of March.
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They did see the sign that said “head in parking only,” but they chose to ignore it because they had no other option.
“I was like, well, first of all, why? Give me a good reason why because that doesn’t make any sense,” Hannah said. “Second of all, if we don’t park this way, we are not going to lunch because there is literally no other accessible parking spot for us to use.”
Sadly, Shane and Hannah returned to their parking spot with a $60 fine.
“It was the only accessible parking spot in a mile radius,” Shane said. “It’s not fair.”
They appealed the fine but were denied, and the couple felt defeated. But, surprisingly, one of their followers emailed a city council member who decided to change the rule.
“Every public parking lot in West Hollywood is now front in or back in parking,” Shane said in a more recent video. “And I think that’s amazing. What a big win for accessibility.”
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In a comment to SurvivorNet, Coby Wagman, parking operations supervisor for West Hollywood, confirmed the new change to parking rules.
“The City of West Hollywood first implemented head-in parking requirements in certain parking lots and structures to facilitate the City’s license plate recognition system used for parking enforcement,” Wagman explained. “These requirements had unintentional impacts for people requiring an additional level of vehicle access and for people in certain EVs (electric vehicles).
“The City of West Hollywood is appreciative about the constructive feedback it received regarding these impacts. As a result, the City has responded by removing head-in parking requirements and related signage from parking lots in West Hollywood.”
Shane and Hannah’s openness about what they experienced and why a rule should be different clearly helped make the city more accessible for others. And this example of resilience and positivity is something SurvviorNet loves to see.
The Resilience of Survivors
Shane Burcaw has inspired millions of people with his positive outlook on life and dedication to helping others with disabilities. He might not be facing cancer, but he is a survivor through and through.
Dr. Zuri Murrell, an oncologist at Cedars-Sinai Medical Center, says positivity plays a role in role in survival rates when it comes to cancer patients.
“I’m pretty good at telling what kind of patient are going to still have this attitude and probably going to live the longest, even with bad, bad disease. And those are patients who, they have gratitude in life,” he told SurvivorNet.
So whether you’re faced with cancer, some other disease, a disability or any other type of adversity, remember that while you can’t control the obstacles and uncertainties of life, you can control how you respond to them.
If you’re in need of more inspiring stories like that of Shane’s, check out SurvivorNetTV’s film “Resilient.”
It follows Jerad Fischer, Lindsey Runkel and Dan Soller – three dedicated mountain bike riders who refused to let serious injuries get in the ways of their passions. The inspiring trio is proof that adaptability is key to resilience.
SurvivorNetTV Presents: Resilient — Learning to Overcome
“You always have to be learning,” says one of the bikers in Resilient. “Otherwise, life gets stagnant.”
Chef Eduardo Garcia is another survivor who knows a thing or two about resilience. He was on a backcountry trip through beautiful Montana in 2011 when he stumbled upon what he thought were the remains of a bear in a tin can.
When he tried to remove its claw with a knife, he discovered the tin can was really an old electrical junction box that sent 2400 volts of electricity through his body. He lost an arm and nearly his life.
Once he made it to the hospital, doctors found out Garcia had testicular cancer. He needed to begin chemotherapy immediately before reconstructive surgeries could commence.
SurvivorNetTV Presents: ‘Charged’ — Setbacks Help Chef Discover Meaning and Connection
Nevertheless, he persisted. He’s now cheffing up delectable eats with a prosthetic arm. To learn more about his story, check out the award-winning SurvivorNetTV documentary “Charged – The Eduardo Garcia Story.”
“Everyone that has encouraged me, and supported me, and forgiven me, and held me accountable has brought me to today and how I make my life moving forward,” Garcia told SurvivorNet.
Learn more about SurvivorNet's rigorous medical review process.