My disability Q&A: On overcoming obstacles

**Welcome to Part II of this week’s special disability Q&A. Here’s Part I in case you missed it…

Can you give us a brief description of what Freeman-Sheldon Syndrome is?
My parents didn’t know anything was wrong with me until I was born — no 3-D ultrasounds back then! It took the doctors (and even my parents looking in a medical book) a few days to diagnose me with Freeman-Sheldon Syndrome. It’s basically a genetic bone and muscular disorder, and I’ve had more than 26 surgeries, including surgeries on my knees, hands, hips and spine. When I was born, though, my main problem was my joints, like my hands, feet and knees, which were either contracted or dislocated.

How long have you wanted to be a blogger/writer?
Writing has always been one of my favorite things. Growing up, writing was always a way for me to express myself and explore my world beyond the confines of my disability. I studied journalism in college, where I worked on my school’s newspaper in every position from staff reporter to editor-in-chief. After graduating with a journalism degree in 2005. I began my career as a freelance writer. I wrote a weekly newspaper column for nearly five years; my slice-of-life column covered family, holidays, love and pop culture. I was also a blogger for Psychology Today, where I wrote about living a full life with a physical disability, and also blogged about my search for love with a disability for Online Dating magazine. I’ve also written for Redbook, Glamour, The Frisky, the Chicago Tribune, Chicago Parent, Pregnancy and xoJane.

What obstacles have you faced while being a blogger/writer due to Freeman-Sheldon Syndrome?
Actually, I think the opposite has been true in my case. A couple years ago, when my newspaper adviser position was eliminated, I decided to focus on my blog full-time. It was one of the most exciting things I’ve ever done. Blogging and writing, especially where my disability is concerned, is really the perfect job for me. I can work from home and set up a schedule that works for me. It’s flexible, so if I want to stay home one day to work and then head to the library the next day to work, I can do that. It’s nice being able to work wherever I want and set my own hours.

Have there ever been any dreams or goals that you feel were not obtainable due to being born with Freeman-Sheldon Syndrome?
I’ve always wanted to live in NYC and live the classic life of a magazine editor, but due to logistic — and of course money! — that goal just isn’t realistic right now. Luckily, my field is changing so much with technology, so nowadays, you don’t necessarily have to be in the Big Apple to get published! I’ve made some great connections through my blog and social media, which is another thing I couldn’t even imagine when I started blogging!

Have you ever been in a situation where someone belittle you?
I think we’ve all met that one person who zeroes in on our Achilles heel and can sometimes just shatter our confidence. In the early days of blogging, I’d get some not-so-nice anonymous comments — you wouldn’t believe some of the things people will say when they can hide behind their computer screens. Some people are just bullies to get a rise out of you, so I learned to just ignore those comments. At first, it was hard to ignore and my confidence was shaken a bit — I’d wondered if what they were saying was true — but you get to a point where you just don’t care anymore.

As always, friends, I’d love to hear your thoughts!! Love you!! xoxo

[Photos via We Heart It]

On The Frisky: 5 lessons about life after college

Exciting news, friends: I’ve written a new essay for The Frisky today! I can’t believe it’s been almost an entire decade since I graduated college — I know what you’re thinking, “She doesn’t look a day over 22…” But it’s true. I’m an older and wiser lady these days. Still, it would have been nice to have a little life advice to go along with my diploma. So in the name of continuing education, here’s an excerpt of the 5 Things I Wish Someone Had Told Me About Life After College…

1. You haven’t really figured out life yet: No, no, stop shaking your head at me. I know you think you’ve got it all figured out, but you really don’t. So you took intro to philosophy and wrote investigative articles for your college newspaper? That’s all well and good, but let me be the first of many to break it to you: You’ve still got a heck of a lot to learn. About life. About love. About the ins and outs of your checking account. I’d even be willing to bet that life is something you never truly figure out because it’s always changing. Instead, I’ve found, it’s all about learning to roll with the punches. 

2. You have to laugh as much as you can along the way: Be clear: Life can get incredibly messy. It can explode and feel overwhelming. Just when you find yourself sobbing on your best friend’s shoulder, try something a little radical: Laugh. I know it sounds crazy, but as I’ve been saying a lot lately, “if you don’t laugh, you cry.” And who wants to go through life crying?

You can read the rest of the essay here. What do you think? I’d love to hear your thoughts! xoxo

P.S. Read my other pieces on The Frisky here, here, here, here, here and here. Enjoy! :)

On The Frisky: 4 ways The Fault In Our Stars got it right…

Remember when I instagrammed the above photo with the caption “Here we gooo,” and warned you to brace yourself for lots of talk and reflection about a little book (and movie!) called The Fault In Our Stars? Well, it all starts now! I wrote about four ways I can identify with Hazel for The Frisky yesterday. Hazel’s story was my story: As I was reading the book, I kept identifying with Hazel and her story, especially when it came to her cancer and how her medical past has affected her life – both as a child and as a young woman. Here’s an excerpt…

“She seemed to be mostly a professional sick person, like me, which made me worry that when I died they’d have nothing to say about me except that I fought heroically, as if the only thing I’d ever done was Have Cancer.” 

Translation: I am not disabled. I am a person with a disability. There’s a huge difference, and it’s something I’ve been trying to reconcile even more as I get older. It’s a very fine line to walk (no pun intended), but I am more than my disability; it’s part of me, but it’s not all of me. Growing up, I never wanted to be known as The Girl In The Hospital Bed With Messy Hair And A Bunch of IV Chords Sticking Out of Her Arm. I’m so much more than that. Plus, it just wasn’t a good look for me. It’s still not.

You can read the rest of the essay here. What do you think? I’d love to hear your thoughts! xoxo

P.S. Read my other pieces on The Frisky here, here, here, here and here. Enjoy! :)