Chronic Illness, Information, Writing

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

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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

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40 thoughts on “Writer/Director Doesn’t Let ALS Stop Him #WATWB”

  1. Hi Belinda – having seen someone recently suffer with MND and sadly die … this is inspiring. I’m about to go and listen to the clips – thanks for highlighting for us … he obviously deserves to be heard … and to know that his story will be there for others to read and be encouraged to live as well as possible in such or similar circumstances – brilliant – thanks for sharing with us –
    cheers Hilary
    http://positiveletters.blogspot.co.uk/2017/06/we-are-world-blogfest-in-darkness-be.html

    Liked by 2 people

    1. Heartfelt sympathies on your loss Hilary. It is such a horrible disease and to be given the diagnosis so young….I just couldn’t fathom. As Simon says the disease has taken so much from him now this is him taking something back. I love his spirit! Thanks so much for stopping by!

      Liked by 1 person

  2. Well, this is a most extraordinary story, thank you Belinda. I’ll check the trailer links you’ve provided later. You’re right – anything is possible with attitude and passion. Thank you for hosting! Have a great weekend.

    Liked by 1 person

    1. Thank you Susan! Simon’s amazing attitude definitely helps one put things into perspective. I was so inspired by his story, I couldn’t help but share! Hope you have a fantastic weekend too!

      Liked by 1 person

    1. Simon is such a force, he really proves that passion and perseverance can get you to your goals. Thanks so much for stopping by! Wishing you a wonderful week! ☺

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  3. Such an inspiring story. I’ve been doing a bit of research about MND in conjunction with study of Stephen Hawking, and now I really look forward to reading Simon’s memoir. Thanks for sharing this story of committed pursuit of one’s dreams – and thank you for co-hosting this month’s challenge.

    Liked by 1 person

  4. It’s always interesting to see how people react when facing what would seem to be insurmountable challenges. I look forward to seeing Simon’s movie, and learning more about his perspective on his life. Great link for the #WATWB.

    Liked by 1 person

  5. This story hits really close to home. My very vibrant and physical husband was diagnosed with MS about six years ago. The one thing that keeps him going is the creative spark. Right now, he’s converting an electronic wheelchair to an all-terrain vehicle. Long live the creative spark!

    Liked by 2 people

    1. I have dear friends with MS my heart goes out to you and your husband. I’m so glad your husband is embracing his creativity, it can be such a healing and empowering force! Yes, long live the creative spark! 🙂 Thank you so much for stopping by and I hope you’re having a wonderful weekend! 🙂

      Liked by 1 person

  6. What an inspiring spirit Simon has! This story has given me energy to keep moving and pursuing my own creative expression in spite of the adversities of daily living in this world. Thanks for posting about Simon. Cinda

    Liked by 1 person

  7. Thank you Belinda for sharing this inspirational article and video, it is so easy to give up when one is faced with such a diagnosis. Simon definitely an inspiration to us all to try one more time to follow our dreams.

    Liked by 1 person

    1. I agree, I was blown way by his passion, such a shining example. Also so impressed by his family,a lot of love there! 🙂 Thanks so much for stopping by! Wishing you a wonderful week!

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