Wednesday, April 4th, 2007
Film Review: So Much, So Fast
Imagine you learn that you have only a few years to live.
At age 29, Stephen Heywood discovered he had the paralyzing neural disorder Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrigâ€™s disease. Ninety percent of victims die within 5 years of their diagnosis. You keep your mind, but lose speech and motor control, and the ability to eat and breath unassisted.
“I started having problems with my right hand when I was working. I
went to [Massachusetts General Hospital] for further testing, where
unfortunately I did find damage in my other limbs. â€¦ I started figuring
out what I wanted to do with the rest of my life.” â€“Stephen Heywood
What did Stephen do? What would you do? His life had revolved around carpentry and playing video games. He said he couldn’t live every day as if it was his last because he’d wake up drunk every morning.
Stephen decided to marry his girlfriend and raise a son. “What will people say? Doesn’t matter,” his wife said. “Yes, I would have this man’s baby. I would live any amount of time with this man.” They are a fearless, strong, hopeful family.
The film So Much, So Fast is a compelling journey, following Stephen’s and his family’s choices over a five year period as his condition worsens, his son grows and his family rallies around himâ€”all the while with Stephen keeping his sense of humor.
Stephen’s interactions with his wife (a woman who chose to marry him knowing the challenges that lay ahead) and his growing toddler are what captured my interest and are why this review is on a baby blog.
A poignant point in the documentary (there were so many) was when the filmmaker asked Stephen’s opinion about Jack Kevorkian’s work in assisting with the suicides of ALS sufferers. Speaking in the late stages of his disease, with a neck brace holding his head and communication coming through an assistive computer, he said those individuals must not have children. He would do anything to see his son one more day… and that his own mother fights for time to see him.
And when I say his family rallied around him, they really have. ALS is an “orphan” disease, meaning that not enough people have it to make researching a cure or therapy profitable for pharmaceutical corporations. Many rare diseases go uncured because of the profit barrier. Stephen’s brother Jamie quit his job and began working from his basement to found a research organization. He initially raised funds from such peculiar things as a bellydance show. In a few short years, Jamie built a multi-million dollar nonprofit biotechnology company known as the ALS Therapy Development Institute.
Cures don’t come quick though. Stephen died in November (after the documentary’s release) at the age of 37. Quoting from the family’s parting thoughts:
“Stephen would tell a joke about wanting to die a heroic death. It went something like this. There would be a fire and he would save someone but it would have to be a slow fire with ramps because he would be in a wheelchair. I think he found a way to do that. [â€¦] As Stephen indicated he wanted to, he will donate his organs to others to give them a chance at the amazing years of life that he gave us. So he found his slow fire and it has ramps.”
But that’s not really what the film is about. Instead, I’ll conclude with a quote from a family letter [near bottom of page] that Stephen wrote in February 2005.
“I go out frequently, but winter is hard. Sunday we went to the zoo and as always Alexander rode on my lap. I would worry about exercise except his little boy body is always moving. He and I still watch cartoons on my computer. Much to my disappointment he now likes Scooby Doo. As always he is a source of pure joy to me.”
I infer that many Thinga-readers are in Stephen’s age range when he was diagnosed, give or take 5 years. My having a child, and a brother who died unexpectedly when he was 27, has made me think a lot about the meaning of life and about hope for the future. It’s an important question for us to ask. What would you do if you were told you had only five years to live? I’m still thinking.
Watch the film trailer:
So Much, So Fast is playing on PBS TV stations this week on the Frontline program. I watched the last showing on my local station last night. Unfortunately, the movie cannot be rented anywhere; it is only available for purchase from West City Films. If you’re seriously interested in seeing the film, pay attention to your PBS station’s program schedule.