My name is Shane Burcaw. I’m 21-years-old and I’ve been in a wheelchair since the age of two because of a disease I have called spinal muscular atrophy that causes my muscles to deteriorate as I get older. I have a blog about my life called Laughing At My Nightmare with over 400,000 followers. I also started a nonprofit organization of the same name to spread the idea that adversity is easier to overcome when handled with positivity and a sense of humor. We also raise money for muscular dystrophy research.
During the inaugural speaking tour for my nonprofit organization, Laughing At My Nightmare, I was surprised and honored when someone from Katie reached out to me through email. They had heard about our tour and my blog, and wanted to have me on the show to talk about everything I’ve been doing. Up until that point, I didn’t think the road trip could have been any more awesome, but reading that email sent the awesome meter skyrocketing.
After almost dying from exhaustion on our five-day, 2600 mile speaking tour, my best friend, Shannon, and I returned to my home in Bethlehem, PA where we promptly passed out for 48 hours. Three days later a (super-fancy) handicap van arrived to bring Shannon, my dad, and I to New York City for our Katie Couric adventure. For me, that adventure began almost immediately when I discovered the van had the loosest suspension I had ever felt. Every single tiny crack in the road sent my body sprawling into the air. Okay, maybe that’s a slight exaggeration, but it was scary.
The city never ceases to blow my mind, and it was even cooler this time because Shannon (who lives in Florida) had never been in NYC before. She ogled at the massive buildings like a kid in a candy factory. I probably would have ogled too, had I not been holding on for my dear life.
We got to stay at the beautiful Lucerne hotel. On our first night, the three of us enjoyed a delicious meal in the outside restaurant of our hotel. Shannon took approximately 3000 pictures during this meal.
The next morning we woke up early and got pretty for our big moment on Katie. For my dad and I this meant brushing our teeth a few minutes longer than usual. For Shannon, it meant 14 hours in the bathroom. She’s going to hate me when she reads this. Life felt surreal as we approached the ABC building, made our way into the cozy green room, and helped ourselves to free coffee! We met with the awesome producers and other Katie employees before the hair and makeup crew showed up to make us even more beautiful. Now, I’d like to go on record and say that having my makeup done was way more awesome than I expected it to be. If it wasn’t such a hassle, I’d probably pay someone to do my makeup every day, because (as I’m sure Shannon and my dad will agree) I looked downright dapper with all that powder on.
The surreality intensified as we made our way to the set, and the crowd gave us a huge round of applause when we were introduced. I could tell right away that Katie was very interested in my story, which made talking about it on national television much easier. Before long, it felt like it was just the four of us having a normal conversation, and I began to not notice the hovering camera in front of my face. Before we knew it, the interview was over, and we found ourselves backstage sharing a bunch of “THAT WAS AMAZING’s.”
To top off an already amazing experience, Shannon and I saw Phantom of The Opera on Broadway that night, and our driver took us through Times Square on the way back to the hotel. If you haven’t noticed yet, we had an excellent time on our trip to New York. Thank you to everyone at Katie who made it possible!