My disability Q&A: On following your dreams

What advice would you give to high school students with various about following their dreams?
The most important advice I’d give them is to find something that they’re passionate about. Whether it’s sports or painting or volunteering, find what you’re good at and do it. You’d be surprised what you can do when you put your mind to it. Plus, if you’re going after something you love doing, it doesn’t feel like work at all. Also, don’t be afraid to ask for help. No one can do everything by themselves and there’s no shame in asking for help. I credit much of my independence to my parents, who taught me never to let my disability define me. It may have been a factor, yes, but it was only one piece of the puzzle.

Have you had to adapt or make any accommodations to reach your goals?
I couldn’t go away to college, but at the same time, I never really wanted to. I’m sure accommodations could have been made, but I felt more comfortable staying close to home.

What would you say to students who feel there are impassable roadblocks to their dreams?
Everyone — disabled or not — has something that they feel is an impassable obstacle when it comes to their dreams. And sure, there are just some things I’ll never do, like become a ballerina or an MVP basketball player, but so what? I’ve found something I love to do, and that’s the key to it. Everyone has a passion, so find yours and be determined to make it happen. It takes work, but you’d be amazed what you can do when you put your mind to it.

Some students may feel like they can’t be independent or have any personal responsibility especially if they require assistance in daily living tasks. What is your opinion on this?
Oh, I’ve definitely struggled with this in the past. Whether I like it or not, there are just some things I’ll always need help with — bathing, getting dresses, meal prep, etc. I used to look at my friends and think they were “so farther along” than I was was and that they were so much more independent than I was. But it’s something that I can’t change, so I can either obsess over it or realize that it’s just something I need help with. Everyone has things they need help with, and those are my things.

What type of personal goals do you set for yourself relating to your blog or to your life in general?
Well, one of my big on-going goals is to continue to be as independent as possible; I’m a lot more independent than, say, 10 years ago. Also relating to life in general, I continue to work through my grief following my father’s suicide in 2003. That’s taught me so much, like the fragility of everything and the importance of love, family and happiness. As for my blog/writing, I’d love to start pitching to magazines again — I haven’t done that in a few years and would love to be published again. I’d love to see my blog continue to grow and perhaps introduce some new columns into the mix.

Catch up on Parts I and II, and look for the last installment next week, friends. And as always, if you ever have any questions or if there’s something you’d like to see on So About What I Said, feel free to email me ANY TIME!!! I LOVE hearing from you!!! xoxo

[Photos via We Heart It]

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]

My Dream For 2015: Monica from hola! design

Hey 2015. It’s me, Monica. I was still celebrating Christmas and you showed up, I wasn’t ready for you!

I had to sit down and think hard: What do I want to accomplish this year? Do I want to travel around the world? Do I want to (finally!) take a sabbatical? Do I want to start a business?

Well, all of that would be nice. But there’s something else I want to achieve. Not only for 2015, but for the rest of my life, starting now.

And that is being kinder to myself.

I have to admit that for the longest time, I was my own worst critic. In every aspect of my life. I was judgmental and way too harsh with myself. I decided to stop that. I’ve reading a ton about the subject and here are two things I’m already doing…

*I do something I love every day: Could be a long shower, going to my favorite coffee shop, getting a manicure or buying fancy cheese. I treat myself with my favorite things and I allow myself to enjoy them.

*I talk to myself like I would do to a kid: We are all kids at heart, in many ways. You don’t say to a kid, “You made another mistake, idiot!” You say, “It’s OK, buddy. Try one more time.“

There are many other ways of being kind to ourselves, but I find that’s is easier to stick to a change if we take one small step at a time. That way, it is not so overwhelming.

How are you kind to yourself? Share any ideas you may have! Wishing you an excellent year!

–Monica from hola! design

[Photos via We Heart It]

On finding yourself…

Speaking of guest posts, I had the pleasure of being featured on Kate’s wonderful blog Clear The Way. I wrote for her One Word Inspiration series. My word?

Self.

How serendipitous! Something tells me the fates were conspiring here since a big part of my own blog journey over the last six years has been discovering myself and coming to terms with my disability. It’s almost as if Kate was reading my mind. Anyway, you can read my thoughts on self, and here is an excerpt…

I certainly went through a period of looking around and thinking, “Wow, everyone else has it all figured out. What are they doing that I’m not? What’s their secret?” Looking back now, I can see that a lot of my own self doubts and insecurities had to do with my disability. I was too different. I stood out too much. Truthfully, I was just too afraid to look at myself in the mirror…But blogging? It forced me to hold up that mirror and look — really look — at myself. Writing forced me to be vulnerable, and being vulnerable helped me discover my true self.

You can read the rest here, and I’d love to know your thoughts, friends! How does one find a sense of self? Do you think your sense of self can change through the years? Are you a different person now than you were, say, 10 years ago? Let’s chat! xoxo

[Photos via We Heart It]

Tip: 10 Things You Don’t Owe Anyone

Let’s face it: We live in a “yes” culture. A “should” culture, if you will. “No” is a horrible word, something we must never, ever utter — we must never say it to people for fear of a heavy dose of side-eye and possible whispers or gossip.

But that sort of life can end up being exhausting, can’t it? Before you know it, you’re saying “yes” so often that you feel like you’re living life on auto-pilot — or at the very least, you feel like the Energizer bunny who is merely going through the motions. In a word: It’s most definitely not fun. And in no way is it any sort of way to live. Because in trying to be everything to everyone, you’ve neglected the person who’s most important…

YOU.

You’re putting yourself last in everything, and honestly, it’s not fair — to you or anyone. Now, this isn’t to say that you should neglect your obligations or the people around you. I’ll be the first to say that there are just some things you have to do in life — paying bills is one that comes to mind, for examples — but other things? Well, there are some things you just don’t owe anyone. Period. Here are 10 of my favorites…

1. How close you are with your family: There’s nothing better than being surrounded by the ones you love, so why should that be something you have to apologize for or explain?

2. Where you are in your career: Now, assuming you’re not involved in any sort of illegal activity or job, if you love your job, embrace it. Life is too short to be doing something you hate for eight hours a day.

3. Why you’re single, divorced, don’t have kids, etc.: You know the awkward question — the one that inevitably comes up at every family get together and makes you blush about a million shades of red. Well, STOP blushing! Hold your head high and be proud of where you are because that’s all that really matters in the end.

4. Your choice of music: Case in point — I’ve been on a country kick for the last few years. My mom and sister constantly tease me about it. Do I care? Heck no — I just turn up the music!! :)

5. Your priorities in life: So maybe some of your friends have aspirations of moving to Europe and go on grand adventures. But your biggest goal right now is just to enjoy each day and be happy. Don’t ever give anyone the power to make you feel like your dream matters any less.

6. Your introvert personality: I’ve never been the type who loves to go out on a Friday night; I’d much rather enjoy a quiet night in. And that’s OK. I simply like a lot of alone time, while others I know would much rather spend their time around people.

7. Your scars: These could be both literal and metaphorical. I have a constellation of surgical scars and I’ve learned to embrace them; they’re nothing to be ashamed of and have helped me become the person I am today.

8. An apology for your singing voice: Enter that karaoke contest, even if it’s just for fun, and sing loud and proud!

9. Saying “It’s OK” when it’s really not: If someone hurt your feelings, it’s OK to say so and not back peddle. I can be easy to just brush things off to avoid conflict, but that doesn’t really solve anything in the long run, does it?

10. Having the second piece of pie: Everyone should be able to experience the wonderful goodness that is pie. Fully and without judgment.

Anything you’d add to this list, friends? Have you ever had that “Ah-ha!” moment when you realize you don’t owe anyone an explanation? How did it make you feel? Freeing? I’d love to hear! xoxo

P.S. 10 (fun!) things it’s OK to obsess over, 10 reasons your thirties is your breakout decade and 10 upsides of the common cold. :)

[Photos via We Heart It]