Chronic Illness, Information, Writing

Writer/Director Doesn’t Let ALS Stop Him #WATWB


Welcome to the “We are the World Blogfest” (#WATWB ). The #WATWB was inspired by a simple conversation about how all the negativity on social media was weighing on us. Wanting to make a difference we decided to try to do our part to infuse social media with all the good stories that are out there. We hope to share the stories that show kindness, compassion, hope, overcoming challenges and in general, the impressive resilience of the human spirit. For every dark, negative story out there, there is a positive, heartwarming story that will add some light and lift the human spirit. The last Friday of every month bloggers will share their stories led by five co-hosts, this month’s co-hosts are Lynn Hallbrooks, Michelle Wallace, Sylvia Stein, Sylvia McGrath, and myself. We are also looking for bloggers to help co-host. If you are interested in joining our team please contact me here!

Those who know me can tell you how passionate I am about living a creative life.  I believe any creative art form has the power to heal, motivate and empower us.  Having the power to lose ourselves in our creative world and to have the ability to make meaning is a gift that so many overlook.  When my husband shared an interview about Simon Fitzmaurice, I was so inspired.  Many of us make excuses for not following our passions, our lives get in the way, we don’t have the time, money, ability etc.,  and we push it to the back of our minds.   Simon despite his challenges decided he needed to pursue his passions and is not letting anything stop him from reaching his dreams.

In 2008, writer and director Simon Fitzmaurice had a perfect life; a wonderful wife, supportive family and was rising star in a promising career his film premiering at Sundance.  The same day Simon and his wife found out they would be expecting their third child they received devastating news about Simon’s health. Simon was diagnosed with Motor Neuron Disease (ALS/Lou Gehrig’s) and was told he would probably only have four years to live.

Simon could have done what so many of us might have done…given up, accepted our fate, surrendered, but he wouldn’t. Simon loved life too much to just let go and it was important for him to share with his children the importance of never giving up.  Simon lost so much but he chose to take something back, to follow his creativity and live his life to the fullest.  Simon with the support of his family decided to keep pursuing his passion for writing and filmmaking.  Simon lost his mobility, speech and ability to breathe without a respirator but he refused to surrender his creative dream. Simon wrote and directed his movie  “My Name is Emily” which has won worldwide acclaim.

Trailer for My Name Is Emily

In addition to the film, he has written numerous short stories and penned a memoir called “It’s Not Yet Dark” which was made into a documentary, narrated by Colin Farrell and shown at Sundance this year.  With passion, determination and using a Tobii eye gaze software which allowed him to use his eye movements to communicate via voice and writing.

Although life is a constant challenge for Simon he has not let anything stop him from living and loving his life.

Trailer for It’s Not Yet Dark

“Although the world is full of suffering, it also full of overcoming it” ~ Helen Keller