• Trusting the Journey

    Trusting the Journey

    I still can’t believe I ended up in New York. When my internship hunt began last fall I wanted to stay in the Boston area, where I am comfortable and where I feel safe. Boston is familiar; it is a constant. It is an anchor in my otherwise change-filled, stormy existence. As a result, I never seriously entertained the thought of moving to another city for a job, especially a city as large as New York. I have nothing against the Big Apple, however it takes a special person to thrive amidst the hustle and bustle. New York is not for the faint of heart – it is big and fast and uncompromising.
  • Suffering

    Suffering

    Someone asked me a really great question recently. She asked me if, when describing my MD, I ever told people I “suffered” from muscular dystrophy (MD). I’ve been asked a lot of things about my MD in my short time on earth and I’ve thought and analyzed many many different aspects of it. This was one thing I’d never been asked or really thought about before though. The short answer is no. I’ve never used that exact word when telling people about my MD. I usually just say I “have” muscular dystrophy. Then I began to think about the idea of suffering.
  • Was I Out of Line?

    Was I Out of Line?

    Soooooooo. I may have just gotten home from the mall. Alright I did. Annnd, I have another mall story for you. Sorry. It's true. What's up with me and that mall? Apparently we have a real love/hate relationship. I LOVE it, but it doesn't always love me back. Yep, that's it. Here goes. I'm in line, ready to try on 2 dresses (chambray, my favorite!) at a popular boutique-style clothing store, right? When the salesperson says to me, "I'm sorry, the large fitting room is already taken.
  • Me What to Do

    Me What to Do

    I had plans last week. I was headed to the beach (my refuge) for my paddle boarding lesson and I was totally stoked about it. I was also scheduled to volunteer at the hospital, have my nails done and meet a friend for coffee... Not all in one day, of course, but on Tuesday and Wednesday... Instead, I barely left my bed. And I liked it. My muscles decided they were calling the shots.
  • Wedded Bliss for a Muscular Dystrophy Girl

    Wedded Bliss for a Muscular Dystrophy Girl

    Here I am two months after my wedding and I find myself reflecting back on the journey from engagement to wedding. And especially thinking about the years after my diagnosis and before I met my now husband. The majority of that time I doubted that I would ever meet anyone to love me and accept me despite my Duchenne’s. My future was incredibly uncertain. Would someone be willing to get on the DMD roller coaster with me? How do you even tell someone you are dating about a chronic illness?