Beacon Stories

Sep 30, 2019

The Show Must Go on Despite Vision Loss Due to Stargardts

Emmy Award-Winning Writer and Performer Ellen Gould Weaves her Personal Experience with Stargardts Into Her New Musical, “Seeing Stars”

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By Ellen Gould

We inherit lots of things that affect our lives in unforeseen ways. Growing up, I was definitely the ‘artist type’ and a bit precocious. I sang before I spoke and recited Juliet’s balcony speech to Romeo standing on the sofa at age 7. My parents said I always looked at things differently and was often ahead of my chronological years. But no one expected I would become legally blind from macular degeneration by age 16.

Writer/performer Ellen Gould

I have Stargardts, which is an inherited juvenile form of what most people are familiar with as age-related macular degeneration (AMD). It usually occurs in late childhood/ early adolescence, runs in families and causes varying degrees of central vision loss. It is often progressive and, in its most extreme form, can leave only the peripheral vision intact. I’m one of the lucky ones – my 20/200-vision has remained relatively stable for most of my life. But it did create many challenges for me as a budding singer and actress.

I moved to New York City after college to start my career over 30 years ago. There were no technologies to instantly blow up the font of scripts and little concern for disability issues. If I didn’t hide the fact that I was visually impaired I knew I would hear, “You have a problem? Okay… NEXT!” So I decided to try writing shows that I could perform myself. That way, I figured, I wouldn’t have to audition anymore and could create the kind of roles I wanted to play!

As luck would have it, I had an opportunity to perform my first original piece at an event sponsored by a charity I volunteered for. It took place at The Public Theater in NYC and a producer happened to be in the audience. He opened “Bubbe Meises, Bubbe Stories” Off -Broadway the following year. The show later aired on PBS and I received two Emmy Awards: one for acting, one for writing (the one for writing, strangely, made me the happiest). 

Not every show I’ve written and performed has had that kind of happy ending. But I love the process and, thankfully, enough audiences have enjoyed the results that I’ve managed to make a career of it. And I never would have been motivated to expand my view of what was possible if I had not been visually impaired. Thank you, Stargardts!

Thank you, also, to Foundation Fighting Blindness!  For the past 8 years this important organization has really broadened my horizons with regard to the blindness community. I am hoping my show can be of service to this and other organizations that are raising money and awareness of visually impairments. It’s always the personal stories that help open people’s hearts and dare them to see the world in a different kind of way.

After decades of writing and performing my own solo musicals, I am about to launch the most personal of them all. As I prepare for my first performances of Seeing Stars I feel a mix of trepidation and joy – like the character that introduces herself with, “Just call me THE WRITER because I’m finally writing about the thing I’ve tried so hard to hide…that I don’t see the way most other people see.”

WHAT DO I SEE

WHAT DO I REALLY SEE?

In a constellation of reflecting stories, five women personally affected by Stargardts all ask that question. Their fierce and funny answers prove that whatever limits our sight can lift us to greater vision.

Seeing Stars debuts in New York City this October and November as part of The United Solo Theater Festival. To learn more, visit: http://unitedsolo.org/us/2019-seeingstars