A Wild Year In Raising Awareness For Usher Syndrome

396848_369497676454326_1458477086_nIt’s been a wild year for me in raising awareness for Usher syndrome, most notably through an article featured on Cosmopolitan.com this past December. Being featured in national online publications is an exciting thing for me, though not necessarily in the way you may think it’s exciting.

Of course, to be able to say “I’m featured in Cosmopolitan,” is flattering. But the real excitement comes from literally seeing a dream come true. As a teenager, I remember fantasizing about what it might be like to say to someone, “I’m in Cosmopolitan!” Of course, then I saw myself as the cover girl model, portraying a savvy sense of fashion, wearing edgy outfits, featuring bright red lipstick.

Unfortunately, I don’t have fashion savvy. I never was approached by an agent in a shopping center, never asked if I considered modeling as a career. If so, I would have been delighted to answer, “Why, yes! Yes I have thought about modeling, thank you very much!”

Yet, here I am featured in an online publication of Cosmopolitan, an article being shared by other online publications such as Good Housekeeping. When I think back on how I used to dream of appearing in these magazines, I remember the emotions I would feel – inspiration, love, gratitude. 

What’s amazing is my dream to be in a magazine, something I truly believed would happen for me, has manifested in a way better than I could have never imagined. My story of living with Usher syndrome touched someone enough to profile it in a women’s publication that normally focuses on fashion, pop culture and sex.

People are reading it and hopefully being inspired by it. Not for cosmetic reasons but for something more sincere. The appeal isn’t a style or a trend, it’s a fight, a cause that means so much to myself and so many others. The attraction is a cure for Usher syndrome.

I’m filled to the brim with love. How grateful I am to be able to say to others, “I’m in Cosmo!”

#believingisseeing #ushersyndrome #DBAW2015

Read Megan’s story on “What It’s Like Losing Your Vision And Hearing In Your 20s.”

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