I started writing this column on the April day when instead of flying to New York for the Tribeca Film Festival I was laid up in a cast and on crutches — confined to a three-storey house with many outdoor steps and steep indoor staircases. Indeed, for months I was unable to get to my third-floor bedroom.
On a cold March Friday, the 6th (not even the 13th), many kilometres into a fine cross-country ski outing high in the Gatineau Hills, a freak circumstance resulted in a sudden awkward tumble that wrenched my left ankle. A lot changed in a few seconds. Several good Samaritans helped alert the ski patrol but I still had to hobble to a hut over a kilometre away on what turned out to be a broken and dislocated ankle. I managed to drive myself home, crawl on all fours up steps and stairs to get my health card, drive to a hospital, then wait hours in emergency. Needing surgery I was lucky to be admitted after midnight. The operation was delayed till late Sunday night, after some 60 hours with only an IV drip, no food or water. I was discharged early the next morning with no arrangements for getting home, or subsequent care beyond a few sheets of paper listing telephone numbers for private services.
That first week was very stressful because I was anxious still to be able to fly to Saskatoon March 17 for my mother’s 102nd birthday. I would never have managed without the extraordinarily generous assistance of wonderful friends Terry and Ilonca O’Donnell, who have had to deal with their own serious health issues. They gave generously of their time and did many things for me, getting me to and from airports (where wheelchairs got me on and off planes, then family and relatives took over for a memorable Saskatoon visit), to hospital appointments, filling medical and grocery lists and much more. Other friends helped out, watering my collection of plants, fetching things, and getting me out to a couple of movies at my favourite nearby arthouse ByTowne Cinema which mercifully has no steps.
I hadn’t been this physically limited and dependent since I shattered my right ankle in another ski accident 29 years earlier. I hated it, all the activities cancelled, the daily frustrations, but there was something to be learned from being stopped cold and challenged. I’m a great walker but now it was an effort just to get up to my second floor sitting on my backside. Another fall would be disastrous.
We take many things for granted until we lose them. My disability was temporary, but it gave me an appreciation for the simplest things. It made me reflect on what happens when people are confronted with much greater and permanent disabilities.
I doubt I would ever be as brave or creative as Patrick Sean O’Brien. Patrick was a fun-loving and talented young guy of hefty dimensions living in Manhattan’s Lower East Side (where I usually stay during Tribeca). A favourite haunt was eating at a vintage Howard Johnson’s restaurant in Ashbury Park, New Jersey, which has seen better days. Under the nickname “TransFatty” he was making a name for himself as a DJ, filmmaker and online personality. He was having a blast. But clouds appeared on that carefree horizon when his legs started shaking in 2004. In May 2005 he was diagnosed with ALS (Amyotrophic Lateral Sclerosis, commonly known as Lou Gehrig’s disease), a terminal degenerative condition which disconnects the brain from the body. At age 30, facing a devastating physical decline, Patrick was given two to five years to live.
Patrick wasn’t going to give up. He had his camera with him and he decided to turn it on himself, to “make an art project of his existence.” The extraordinary result became the moving self-directed documentary TransFatty Lives (http://transfattylives.com/) which had its world premiere at the Tribeca Film Festival on April 16 and won the documentary audience award after playing to standing ovations.
Technology allowed me the privilege of interviewing Patrick through submitting questions by email. I wondered if he ever doubted such a challenging endeavour, to which he replied: “I knew it was the beginning of a new adventure for me and that my own cameras would not be able to look away. It wasn’t a question of whether it was possible to make a movie documenting my journey — it was impossible not to. The only way I could have given up on the project is if I had given up on myself, which isn’t something that’s in my makeup. I see it as my duty to express myself for those who can’t or just don’t know how.”
And the journey proved to be transformational: “As I progressively became more and more paralyzed I assembled a great group of friends and cameramen and I launched a website to fundraise and keep my documentary film afloat. The messages from others across the country and the world, also facing immense difficulties, helped fuel my mission to make my film.” (The foundation website is: http://www.patrickobrienfoundation.org/.)
The movie is entirely narrated in O’Brien’s voice, both the laboured slur in the earlier stages of ALS and the computer-generated text-to-speech vocalization that will remind viewers of that of British physicist Stephen Hawking, the world’s most famous ALS survivor. What transpires as the disease progresses is shown in an unsparingly intimate and remarkably courageous way. O’Brien is fortunate to be surrounded by a loving family and friends, especially his stalwart sister Wendie. But the camera also captures his daily ordeal in sometimes excruciating detail.
“A lot of people have asked me what it’s like to find out you’re going to die,” says O’Brien. He seems determined to turn this life-changing trial into something positive — becoming a better, nicer person focused on life’s most important things. He asks: “What if my diminishing physical abilities can be inversely proportional to my journey inward?” At one point he attends an evangelical church service with his family in which the pastor lays hands on his forehead and prays for healing. But in dark moments he was so anguished he cursed God for his affliction, maybe even wanted to die. “I was tempting Him to do something. To kill me.” Then he received an instant message from a friend named Angel, and as he told me: “I’ve always felt protected by guardian angels, and in a lot of ways, ALS saved my life. So there, God.”
Patrick never looked for pity or a magical cure. He found love despite the burden of ALS. Childhood friend Laura Silverthorn helped care for him and the relationship that developed resulted in the joyous birth of son Sean Patrick in November 2007. It was a painful yet amicable separation when Laura decided to move to Florida with the baby. Eventually Patrick was able to visit his son in Florida and the little boy also came to visit him. Indeed he believes that the making of the movie and fatherhood is what has prolonged his life and allowed him to leave a legacy. He writes that, “at least I can give him light in the darkness of a movie theatre.”
O’Brien had to move several times as he became increasingly incapacitated — from his sister’s place to a nursing home in Baltimore and then in 2010 to a dedicated ALS facility in Boston, the Leonard Florence Center for Living. Eventually when he could no longer breathe sufficiently on his own he faced the choice of having a tracheotomy and being hooked up to a ventilator. He observes that some ALS patients decide against this, in effect choosing to die. As one can imagine, the costs of medical interventions and care are huge and some do not want to “wipe out” their family’s finances.
What is so inspiring about TransFatty Lives is how O’Brien surmounts the enormous challenges, retaining some of his anarchic youthful spirit, calling himself a “freak on wheels,” and thanking God for still having his mind. When one considers that he completed the movie — which includes striking flashbacks and montages — by typing directions to his editors through the movements of his eyes, its exceptional achievement is nothing short of a miracle.
As for the “ice-bucket challenge” videos that went viral on social media last year, Patrick did one of his own posted to YouTube (https://www.youtube.com/watch?v=vay16_cUjmQ) that’s in the movie. As he says, “anything that captures the imagination of the masses and raises awareness as well as boatloads of money for a cure is a good thing. I think it’s important to have an element of humour in activism because that’s what really opens people’s hearts. This is heavy stuff and anything that allows people to have fun while they help fight for a cure is brilliant as far as I’m concerned.”
There’s a Friends of Patrick O’Brien Association that works to raise awareness and as a filmmaker Patrick is seeking a wide release for TransFatty Lives as well as doing outreach to partner with organizations helping people with ALS such as AL.net.
I’m sure he would agree with Hawking that: “Where there is life there is hope.” At the same time, taking nothing away from Eddie Redmayne’s Oscar-winning performance as Hawking in The Theory of Everything, O’Brien’s lead role in the story of his own life offers us much greater insight into the ravages of ALS, a terrifying incurable condition from which someone dies every 90 minutes.
There’s no great-man celebrity or theory of anything to soften that stark reality. That TransFatty Lives brings it home so powerfully reinforces its motivational resolve.
That’s the thing about real life: it cuts deeper than the most ambitious theories of the universe by touching that which is irreducibly human in our hearts.