In October, Shane Burcaw invited us to laugh at his nightmare: living with a progressive, ultimately fatal disease Spinal Muscular Atrophy (SMA). Now, fellow Tumblr-er John, a 20-year-old music-making blogger with SMA-2, shares his perspective on life, fear and dating Taylor Swift. John's invitation? To Cherish Each Day.
ACT: Your blog is called Cherish Each Day. Do you think that most of us don't do that enough?
JOHN: I see it like this: Everyone has problems, while they may appear to be nothing compared to what someone else is going through, that person feels a struggle, and it could be just as bad. If you're not used to struggle it's a shock. Not to minimize others problems, but it's good to step back sometimes and say to yourself, "Do I really have it that bad?" Appreciate what you have, even the ability to do something as simple as going to the store, or going out to eat. Some people don't have those luxuries.
ACT: In your post The Getaway, you wrote about what would seem to be a terrifying accident, noting that you weren't even afraid. Do you think that having a progressive disease gives you a different perspective on fear?
JOHN: I wouldn't say I have a different perspective because of my disease, I think it's just who I am. I can be just as big of a wimp as the next guy. There are plenty of other situations where I'd be terrified. I'm not easily scared and I like to expose myself to whatever is out there. Building tolerance is key.
ACT: You say you felt "the most genuinely fulfilled and content" in your life when you were in a relationship with your first girlfriend. Having already been through so much, is love really where it's at, over all else?
JOHN: I've always just want to have that balance in my life. People see me as an inspirational happy-go-lucky person, but truthfully I'm not. I find myself often in very dark places. I feel alone, I feel sad, all of that. It happens to everyone. I think a girl brings a sort of "balance to the force," as Yoda would say. They're delicate and sweet and optimistic and nurturing. Those are things everyone deserves.
ACT: Who are your heroes?
JOHN: That's tough because everyone has flaws. There are heroes everywhere — people that put other people first and go out of there way to make sure someone is okay. I do have some favorite people. I absolutely love Stephen Colbert and I watch his show every night. I love a ton of musicians, everyone from Lil Wayne to Lana Del Rey. Oh, and Taylor Swift is my girlfriend, by the way. (Call me, Taylor).
ACT: You're friends with Shane Burcaw (see "Go Ahead and Laugh at His Nightmare"). Has it been helpful to talk to someone who is going through a similar experience?
JOHN: I found Shane's blog the day I signed up for Tumblr on my own personal account. He's a great guy and what he's doing is very impressive and honorable. He's a very positive person and I have a lot to learn from him. I think we all have a lot to learn!
JOHN: Besides funding, people can also help by putting in extra effort to making all people feel equal. A smile or a simple "hello" can change an entire persons day. If half the people who stared at me in public and then looked the other way cared enough to speak to me, I think we could all learn from each other. We're all in this together, lend a helping hand anyway that you can.