So Much, So Fast
This was the first documentary about ALS that I watched. An inspirational and heartbreaking story about architect/builder Stephen Heywood, diagnosed with ALS at age 29, and his brilliant brother Jamie, who became obsessively driven to find a cure. I fell in love with the Heywoods. I wanted to be part of their family and Jamie’s renegade quest.
Jamie founded ALS Therapy Development Institute (ALS TDI), the world’s first non-profit biotechnology company, a place I came to know well while writing EVERY NOTE PLAYED. I met with Jamie and Stephen’s other brother, Ben, in doing the research for my book. They shared the brutality and intimacy, the reality and the hope in loving someone with ALS. If, like me, you can’t get enough of these brothers, Jonathan Weiner pens their story in His Brother’s Keeper. Stephen died in 2006.
Imber’s Left Hand
I LOVED this documentary about artist Jon Imber. As ALS paralyzes his right hand, he learns to paint with his left, and then with both hands held together at his waist. He painted more than 100 portraits in 4 months like this. His determination to keep painting, to keep seeing, to keep loving and growing in the presence of crippling physical demise is awe-inspiring and heroic. His wife Jill said, “What you do at the end of your life is an interesting doorway.” Wow.
The Theory of Everything
I saw this movie about theoretical physicist Stephen Hawking about a week before the Golden Globes in 2015. I was mesmerized by Eddie Redmayne’s portrayal of Hawking with ALS, how he embodied the changes in physicality that accompany increasing paralysis with such authenticity and believability. A few days later and the night before the Golden Globes, I attended a swanky party for Still Alice in Beverly Hills. Before walking through the front door, I told myself to be cool. But the first person I met was Eddie, and cool laughed at me as it flew right out the window. I gushed all over him. I was horrified with myself as I was gushing but couldn’t stop. When I was done vomiting compliments, Eddie very graciously thanked me and asked, “Who are you?” I unassumingly answered, “Lisa Genova. I wrote Still Alice.” And then, Eddie Redmayne gushed all over me. :-) PS. The next day, Eddie won Best Actor. #truestory #mindblown
Patrick O’Brien (not Katie’s older brother in Inside the O’Briens) was DJ Transfatty and a filmmaker, 30 years old and living in NYC when he was diagnosed with ALS. He turned the camera on himself, making this extraordinary, darkly humorous, thought-provoking, and spiritually inspiring documentary about his journey. “What if my diminishing physical abilities can be inversely proportional to my journey inward? And, more importantly, will there be bacon and unicorns once I get there?” I met Patrick at the Leonard Florence Center for Living in Chelsea, MA where he now lives--unable to walk, talk, or breathe, his creative mind still alive and well, typing with his pupils.
This documentary about former New Orleans Saints safety Steve Gleason stirred many big emotions in me. Shot with handheld cameras, this film gets up close and personal, yanking back the curtain, exposing an extremely intimate view of the realities of living with ALS. Both Steve and his wife Michel are amazing, beautiful human beings, determined to live and love with courage and purpose. While Steve is portrayed as a “no white flags” heroic public figure, and he is, I found Michel to be the real hero of their story. My heart broke hard and in many places for her, and I have wondered and worried about her often since seeing this film. Caregivers will definitely identify with her. With his eyes, Steve wrote, “I cannot move or talk or breathe on my own, but because of evolving eye-tracking technology, which I use in conjunction with a tablet, I can do anything an ordinary person can do: text, talk, play music, watch movies, conduct online meetings…” And he can do these things because Michel and other caregivers devote their time, energy, and love to washing, dressing, toileting, and feeding him.
It’s Not Yet Dark
I didn't see this film until after I finished the final draft of EVERY NOTE PLAYED. Narrated by Colin Farrell, IT'S NOT YET DARK reveals the story of Irish filmmaker Simon Fitzmaurice who was diagnosed with ALS at the age of 34. It’s an intimate portrayal of a young family hurled into the unthinkable and unexpected crisis of ALS. Simon’s steadfast and optimistic determination to live, to not give up on love or his dreams is inspiring and uplifting. Because ALS never happens to just one person, this is also the story of Simon’s wife, Ruth. As I watched her take care of him and their five young children, I kept wondering what she wanted, what her dreams were. We don’t see either of them ask or answer those questions. Arms, legs, breath, and voice paralyzed, Simon amazingly continues to live a productive and meaningful life, writing the book upon which this film is based and directing his first feature film through eye-gaze technology.
Lisa with Patrick O'Brien from Transfatty Lives