“ Find a way to connect with someone else’s story. You will find strength in that. Then share your story. You’ll find that learning how to tell your story gives you control of a situation that is totally out of control.
Hernan Sebastian Barangan is another creative mAss Kicker. He is a film maker that is traveling around the United States and interviewing young adult cancer survivors in all 50 states. He is the “Chief Rebellion Officer” at The Cancer Rebellion. Hernan graduated from UC Santa Cruz with his Bachelor of Arts in Film and Theater. We connected with him at a conference last year and recently reconnected with him. We were fortunate to catch him in some downtime and ask him a few questions.
mK: Thanks for doing this Hernan. You have a very unique name. What is story behind it?
HSB: Haha my name – I’m half Filipino and half Salvadorean. My parents were San Francisco hippies and they seriously pulled the name out of the air. There are no other Hernans in the family and I’ve never met another. Sebastian was the name I was supposed to be given, and then my Dad switched the names the day after I was born because he didn’t want people calling me “Seb”. Which I don’t think they would have anyway… HAHA.
mK: Cool. What was your diagnosis?
HSB: I was 15 – a typical high school teenager into punk music and cars – when I was first diagnosed with Acute Myelogenous Leukemia. I had been getting increasingly tired and covered with bruises. The bruises made me think I was even more punk than I was. But near the end of my sophomore year I was walking between classes and I just needed to lie down. So I did and I slept through class. My mom picked my up from school that day and took me straight to our family doctor, who looked at me and knew what was going on. He took some blood tests and on the way out of the clinic I passed out just walking. They took me off to the hospital and that’s the last thing I remember until I was waking up and they were telling me what was wrong with me.
mK: We noticed that you are really into hand cycling. How did you get involved with that?
HSB: First week of diagnosis my platelets were low and i bled into my spine during a lumbar puncture.
When I was fresh out of treatment it started as just a limp and I thought I just needed more physical therapy. But over the years the lack of control and balance progressed until I finally had to bite the bullet and get a wheelchair. And that suddenly opened up a whole new world for me.
Same thing happened with hand cycles, I didn’t expect I’d be athletic ever. But then my brother found one in a yard sale.
Before I knew it I was all over the place in that thing.
mK: Why did you start The Cancer Rebellion?
HSB: I noticed that isolation remains one of the worst parts of the cancer experience, through treatment and on into survivorship. Too many times, people go through cancer without meeting anyone they can really relate to. And for a teenager you may not want to meet anyone like that because you’re just not prepared it emotionally. Cancer Rebellion is my way to destroy that isolation.
mK: Who is your hero or heroes?
HSB: Werner Herzog is my hero. He is ruthless in his pursuit and depiction of truth.
mK: What motivates you?
HSB: Connecting people through narrative.
mK: When was the first time you felt like yourself after your diagnosis?
HSB: Today. And tomorrow I’ll be even more myself.
Ok seriously, I was 15 when I was diagnosed so I hadn’t completely formed a real view of what ‘myself’ was. The cancer experience taught me that identity is something that changes whether you want it to or not.
mK: That is correct! What makes you laugh, cry, angry?
My brother makes me laugh.
Thinking about the friends I’ve lost to cancer makes me cry.
Cancer makes me angry.
mK: Right. What would you say is the most interesting thing you’ve done?
HSB: I don’t usually drink beer, but when I do it’s dark chocolate. Ok, maybe what I’m doing right now is the most interesting. I’m filming with young cancer fighters in all 50 states!
mK: What was the toughest challenge you faced as a survivor? How did you overcome it?
HSB: The toughest challenge I had was finding the strength to tell people that I had ever had cancer. I didn’t want to be different, I was a teenager and I wanted to be accepted. When I went to college I even invented an alter ego who didn’t have to tell anybody about it. But I could never completely shut it out. It crept into my writing. Into my student films. And before I knew it was telling people about my cancer experience. The more I did it the easier it became. (Which is good because by the time I couldn’t hide my disability anymore I had to be able to tell my story to anyone who asked.)
mK: HAHAHA…OK, here is another question for… If you could learn any language instantly like in “The Matrix”, what would it be any why?
HSB: Esperanto. Wait. Can I have a redo? Can I just learn Karate instead?
mK: Learning karate is acceptable because we’ve never heard of Esperanto. Karate is acceptable because Chuck Norris speaks karate with only his hands and feet. We respect Chuck Norris’s language. We digress… What do you like to do in your spare time?
HSB: Either listen to loud music on repeat or play songs on guitar on repeat. I get seriously fixated on good music.
mK: What are you up to now?
HSB: I’m preparing to get back on the road and finish filming my documentary about the teen and young adult cancer experience across America! Only 15 states to go!
mK: Very cool! Any advice for people or loved ones that get daunting diagnoses?
HSB: Find a way to connect with someone else’s story. You will find strength in that. Then share your story. You’ll find that learning how to tell your story gives you control of a situation that is totally out of control.
mK: Tell us something about yourself that people probably didn’t know… anything.
HSB: This was the hardest question. I’m pretty open about everything. Sheesh I still can’t think of anything.
My favorite pair of underwear is orange. HAHA.
mK: Any parting words for all the mAss Kickers?
HSB: We need to change the way we as a society perceive of cancer. How we think about cancer affects those who are currently going through it. And when you’re first diagnosed you need all the help you can get.
Hernan Sebastian Barangan: Orange “underwearer”, Chuck Norris wannabe, Katy Perry zealot, Taylor Swift fanboy, film maker, Werner Herzog disciple, childhood cancer thriver, and upcoming force in Young Adult Advocacy. Great to connect with you Hernan! We look forward to seeing what you do next! Check out Teen Cancer America.