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Thank you for making the documentary. I think it is one of the most amazing and beautiful things I've ever seen.
Laura Zinger


 

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Production Notes

Nine months after receiving my ALS diagnosis, life as I had known it was rapidly disappearing. My wife and I had split up and I was living with my sister, Rebeccah. My son John had just turned three. The painting company I owned had no work lined up and acting jobs had vanished. I was unable to type and spent most of my time with my son or recording my thoughts on a miniature tape recorder. After enjoying the first thirty years of my life as a robust, healthy, active man with the world at my fingertips, I suddenly found myself on the slow road to hell. The demands of parenting a toddler kept me from jumping into traffic. My father's feverish search for an effective therapy only added to my discomfort. I knew he wasn't handling my diagnosis well. However, I was excited by BuNaoGao, a Chinese herbal therapy he had found. It seemed promising.

On a May afternoon, I had one of the few true moments of clarity, vision and purpose in my life when I saw the experience I was living needed to be made into a film and I needed to make it. It was as if there was a way to walk the long road ahead with a destination: the completion of a great film. I had wanted to make a feature since my first short films in Paris. I suddenly had total access to an epic battle between life and death; a drama like no other. I found myself at once elated and sickened. Thrilled that I had in my pocket the workings of the project of a lifetime and disturbed at how happy I was, considering I would be filming my own struggle with one of the deadliest and most debilitating diseases in the world of medicine.

Still uncertain if I wanted to really take the plunge, I called Roko Belic, a childhood friend and Oscar-nominated filmmaker for Genghis Blues. I told him what I was thinking, half-hoping he would try and talk me out of it. His enthusiastic response, however, sealed my fate. His total support and passion for the project now made it impossible for me to back away. Roko sent me a camera and microphone that day from his home in California, gave me a few rudimentary lessons on how to work it over the phone and said... "The adventure begins."

Armed with Roko's Sony PD100, I now had a purpose in life. I was no longer a single father dying a slow, lonely death above a bike shop in Chicago. Now I was a filmmaker who would change the world. I would instigate more federal funding, people would ask me to speak at universities, I would be on Oprah! If I could just get the microphone to work right... Ahhh, ALS is nothing if not humbling. I now filled the days of the summer of 2003 talking into Roko’s camera as if it were my therapist. Telling it everything and anything that came to my mind. It became my friend, unafraid of the ALS death sentence. I filmed my son around the house, my family and friends, a trip to Oregon, and more and more of myself, trying in a way to stave off my inevitable future by capturing the present.

At this time I decided to try to keep the focus of the film off of myself. I felt it wasn't enough to make a movie about myself, nor did I want to. I was also convinced, as many patients are, that somehow I would escape the perils of ALS. I thought naively that I would have to find other patients to show the real ALS, as I would obviously fall into another category of miraculous recoveries.

I took a road trip to the East Coast that really summed up where the film was at that point. My father, now a distributor for BuNaoGao, put me in contact with some ALS patients who agreed to be filmed. I drove, by myself, from Chicago to Atlanta to meet one of them. About halfway there, I was buying gas and couldn't get the gas cap off. That's what the disease does. I looked fairly healthy at that point and I was still in shock from my diagnosis. I was afraid to ask for help because I figured someone would just kick my ass and take my car. I had never been vulnerable like that before and was living in an unfamiliar world. It was a hard lesson.

In Atlanta I met and filmed Cary Smith, a thirty-two year-old man with ALS living with his mother, Marsha. His girlfriend also lived with them for the free oxygen therapy that helped her hepatitis. Cary didn't like to talk and seemed annoyed by my interview. Marsha was more open and expressed the serious struggles she was having living with her grown son. It was the first interview I conducted with an ALS patient and to this day the most depressing, possibly because Cary and I are close in age, he looks a bit like me and the interview I conducted would have annoyed me, too. An overwhelming sense of helplessness seemed to dominate their home, understandable considering what they were up against: a fatal disease with no treatment.

After the interview in Atlanta, I picked up my friend Jake at the airport in Durham. I knew Jake from a card game I played in. He was a pretty good actor but knew less about filmmaking than I did. I taught him how to operate Roko’s camera, which he proceeded to trash by mishandling, a fact that Roko has never let me live down. We drove to Vermont the next day to meet Sue Zuckerman, a woman with ALS. Jake flooded the toilet, which I had to plunge. We shot ten hours in one day because at the time I had no idea what the movie was about and I was shooting everything that happened. We shot thirty hours on that trip; about one minute is in the movie.

On the way home, we stopped in New York for a few days. Roko was there working on another film. He interviewed me at length in Central Park. Afterwards, we went out for dinner. Exhausted from the trip, I didn't have the strength to lift the fork to my mouth. Roko fed me for the first of what would be many times on our trips together. Years later, I can still feel the deep shame of not being able to feed myself that first time.

I then headed to Samos, a small island in Greece, home to the Papoulias family, whose mother, Annie, suffered from ALS. Annie was in much worse shape physically than I was, as she had had the disease for five years longer than I did. This made me extremely uncomfortable and I actively tried to engage her to compensate for my fears. My father became fast friends with Annie’s husband, Tony, as the two of them endlessly discussed the mystery of ALS. This made my anxiety even worse. I knew then my father and I would eventually have to work through the major issues of our relationship, long buried, in the midst of the disease. Roko had joined me on this trip to be my cameraman. Spending time with him and John on the desolate streets of Samos proved a welcome respite from the impending doom hovering over me.

Returning home from Greece, I felt an urge to move the film in a new direction. I needed to leave the comfort of my family and the life that I was struggling to retain. China became the obvious choice for several reasons: the therapy I was on seemed promising and I wanted to hear directly from the inventor, Dr. Xia, what I could expect from it. Also, I had always wanted to visit Asia. This seemed like the time to do it. But also, by this point the disease had come to represent the great unknown, a mysterious catalyst for the challenges of life. I thought that perhaps in the ancient traditions of the Far East, I would find some answers. Coordinating permission to film with the Chinese government was challenging to say the least but proved worthwhile when they helped us secure an interview with the controversial Dr. Huang in Beijing.

I scheduled five weeks in China, hired a translator, bought some plane tickets and held a fundraiser that my sister Rebeccah organized. I had been performing regularly as an actor in theatres around Chicago for years. Two years earlier, at the time of my diagnosis, I was in rehearsals for the West End hit "Cooking with Elvis." In what can only be described as bizarre, I was playing a man paralyzed from the neck down. When it became clear I could easily end up that way in a few short years, an odd layer of mystique hung over the production. The show had closed a year earlier after an extended run. I decided to resurrect the role one more time for this benefit. Unfortunately, the mystique had been lost, and was replaced by the uncomfortable expectations of my friends, family and colleagues in attendance. We did however make enough to fund the China venture. More importantly it cemented my working relationship with Rebeccah as my producer. Around the same time, I was transcribing t apes with the help of a steady stream of film students from Columbia College. The most dedicated was Tim Baron, a junior moonlighting from his more regular gig editing teaching videos for a religious cult. Technically savvy and hard working, I kept him in mind as my future editor.

Arriving in Hong Kong was an exciting moment for me. I knew we were embarking on an unknown journey. The possibilities seemed limitless. Maybe I would even find a cure here. As far-fetched as that sounds, there was nothing in the world I wanted more. If it could be willed to happen, I would do it. In Hong Kong we planned, strategized, got acclimated and I fell down a flight of steps, landing on my head. In my excitement, I had nearly forgotten why we came. That fall and the headache that followed was a painful reminder that I was there because of a deadly and unpredictable disease.

After a week in Hong Kong, we boarded a train for Guangzhou, home to Dr. Xia. I knew of Dr. YongChou Xia through his daughter MengQi, who had come to the US to introduce BuNaoGao to the Western patient population. The traditional herbal treatment for brain and nervous system disorders was Dr. Xia's life's work developed over a twenty-five year period in northwest rural China. Though trained in Western medicine, Dr. Xia was sent to the desert town of Lanzhou during China's Cultural Revolution under Mao Tse Tong. In his retirement, he had moved east to live with his second daughter in the industrialized city where we were to meet him.

Entering Mainland China was by far one of the most exciting travel experiences I have had. Simply knowing we were entering territory not that long ago forbidden to us was enough to get my blood pumping. My enthusiasm was helped along by Roko's excitement, who had been there before on his way to Tuva while working on Genghis Blues. After arriving in Guangzhou, we met up with Lan, our CCTV representative assigned to us by the state. An instinctive distrust of all things government probably tainted my view of the bear of a woman assigned to us for the bargain price of 300 dollars per day. However she would later prove to be a major asset in several key instances.

Meeting Dr. Xia was like meeting the Wizard of Oz. After all the hype and mystery, he was just a very nice retired doctor living in the spare room of his daughter's apartment. I had hoped he would provide the answers to the questions keeping me awake at night. However, ALS was as big of a mystery to him as anyone, perhaps more so because he did seem to have found the most effective way to combat the disease, and yet in the end it still won out.

I decided to interview Dr. Xia against a black backdrop with halo light. Roko knew how to make this happen, and together with Lan, the three of us set out after dinner to find the materials. Lan proved her worthiness this day by forcing the manager of a camera shop to open up at 10 pm while we did our late-night shopping. Roko then worked until 5 am to turn our hotel room into a makeshift studio while I slept. The next day I made him a co-producer.

Interviewing Dr. Xia for the next two days was as exhausting as it was eye opening. At once impressive and completely devoid of arrogance, Dr. Xia was the antithesis of what I thought doctors were like. I left the interview with a stark reminder that I was living with an incurable disease and I would likely never recover. The hopes I had placed in BuNaoGao were false. The man himself told me so. He did offer encouragement and was clear in his belief that the treatment could stabilize the disease and help me regain some limited function in my body.

We then took a flight to Kunming, a laid back small city in the southwest. Todd vanBodegom-Smith, a former All-American weightlifter from New Jersey had e-mailed me months before my trip, suggesting I visit him and document the apparent reversal of his symptoms. Todd had moved to Kunming and immersed himself in Chinese medicine and culture, stating it was helping him win the ALS battle. Skeptical but intrigued, I expected Todd to be tall and dark like myself. Instead he was short and fair, but equally committed to beating ALS. We conducted the interview in a park in the center of town amidst ponds, bicycles and checkers. Peace and tranquility permeated the area and I thought seriously about returning for several months to really take it in.

With Todd, I had finally found an ALS patient I could really relate to. Enjoying his company, I invited him and his girlfriend to join us on our trip to a monastery in Xiahe by way of Shouzou, a farm town in the heart of herb country. This was real China, far off the tourist-track, and it was fascinating. Unfortunately it had little to do with our film.

Meeting a Buddhist monk in the mountains was a scene I envisioned to be giving me answers which medicine could not provide. In reality, the monk I found was more like a missionary reciting scripture by rote than any sort of spiritual leader. However the land was amazing: clear, fresh and green. Being in nature was a chance to reflect on my life and the journey we were on.

In Lanzhou - Dr. Xia's home for thirty years - we parted ways with Todd and met up with my father, who had come to see the hospital where BuNaoGao was produced. I invited him, thinking our shared interest in China could provide a unique opportunity for us to bond. About one minute after his arrival, I silently kicked myself for involving him. I was no longer the all-powerful director guiding our ship. Now I was in a power struggle with Darth Vader and the only way out would be to conquer my demons.

After a day in Lanzhou, we flew to Beijing to interview the extremely controversial Dr. Huang, a neurosurgeon trained at Rutgers who was using olfactory-ensheathing glial (OEG) cells from aborted fetuses to treat spinal chord injury and ALS. Patients were reporting miracles and the international press was fueling the frenzy. I wasn't sure if it was snake oil or not, but I was determined to find out. This is where the lines between documentarian and subject definitely got crossed. There were a lot of events happening simultaneously and it became impossible to stay out of the storm that was brewing. Dr. Huang was already getting international press and seemed to enjoy the attention. My father was working with dozens of ALS patients who were desperate to get the operation. Huang was backed up for eight months but he agreed to let my dad schedule more people from the States. While that was going on, my film crew and I started getting some attention of our own. CBS and Time interview ed me. Huang agreed to schedule me right away because he wanted to be in the film and he was working with my father. They were using fetal cells; however the controversy centered on patients’ rights and the ethics of medicine. Nobody had done this on humans, and people were reporting miraculous results. In a nutshell, it was all totally insane. But it made for great drama.

The two weeks prior to and after the operation were some of the worst in my life. I had sent the crew home and spent most of my time watching bootleg DVDs of Hollywood movies. Eight Mile was my favorite, which I saw five times, in part because an actor I knew from Chicago, Michael Shannon, was in it. I was homesick. Due to the overflow of foreign patients, Dr. Huang created a proxy ward in a nearby hotel that was still under construction. This was manned by a pair of nurses who told me they worked 24-7. The dim lighting and disagreeable staff only added to the pseudonym Roko had given it, the "Barton Fink Hotel". But beyond the aesthetic was a steady flow of American and European patients, paralyzed or suffering from ALS, who were betting their lives on Dr. Huang. It felt like a nightmare that kept on going. Everywhere I looked there was someone new, pining their hopes on a shifty doctor with dubious interests. Their limp, degenerating bodies reminded me of my own fragili ty.

When it came time for my operation, the hospital refused to allow a cameraman in the operating room, so I went to one of the surgeons and brought him into the fold. Dr. Li was a jovial man who seemed up for the challenge. I gave him a few quick lessons on the camera and hoped for the best, knowing there would not be a second chance.

Recovering at home was a peaceful time. I was happy to be alive. People had died from the operation and I found out later mine had complications. John and I hung out on our patio while Tim transcribed all 160 tapes from China, a herculean effort that guaranteed him the editor's job.

A few months after the operation, I went to the ALS/MND Association’s annual conference in Philadelphia, where I interviewed many of the world's leading ALS experts. Several of them explained their frustration and criticism of Dr. Huang, citing the obvious downsides to the operation. I knew they were right and began to understand the debate from both sides. I also met and interviewed Dr. Paul Cox, an ethnobotanist from Utah. Dr. Cox was researching the presence of a common neurotoxin, a molecule called BMAA, in ALS patients. Paul was fighting an uphill battle and he knew it. Sensing we were in the same figurative boat we immediately hit it off. Paul put a perspective on my experience that I had not heard before, one that made my suffering have a place in this world. It was a turning point in my acceptance of my life.

Tyler Dallman, a student who was logging tapes for me, shot the family fight. My parents were on their way over to talk with Rebeccah and me (this was in the middle of the Huang saga, so emotions were tense). I asked Tyler to shoot the meeting at the last minute, thinking it might be relevant. My instructions to him were to stay out of the way and under no circumstances stop shooting. He took direction well.

Dr. Oliver Sacks is one of the nicest and most intelligent people I have ever met. Meeting and interviewing him was one of the best moments of my career. At that moment I knew I was on the right path.