Untitled Document

The Salem Cinema, located just one mile down High Street from my home, is to be commended for bringing to our small and generally culturally and culinarily challenged town several documentaries which will, in some instances, break through the dense clouds of obscurity and into the glistening sunlight of public recognition in the months ahead. This is the week in which more than a dozen of those documentaries will be shown. I had the opportunity to view these two; I hope to see one or two more as the week progresses. Though each of these films is the study of tremendous loss and even death, each explores the life that remains while loss erodes life. In both instances what remains is a kind of robust faith, a love of life and art which tends to look at the devastating loss as a further discipline to be dealt with in the process of mastery and of living. While most of this review deals with So Much, let's begin with a word about Phoenix.

Phoenix Dance

This 16-minute film by Karina Epperlein portrays the "new career" of dancer Hector Avila after suffering the amputation of one leg due to cancer. We see him as he practices, as he learns to stand on one foot with as much balance as if it was two, as he sees what he can and cannot do. Never one to bemoan the injustice of life or the limitations that he now faces, Avila looks at the loss of leg as another "given" in his life as a dancer. Such hard-headed realism, such love for craft, such willingness to admit significant loss and seek artistic expression after loss inspires as well as tears at us. When we learn at the end of the short film that Avila died at age 48 in 2004, we see that the respite he had from the cancer was only temporary. He danced until the day before he died; certainly he is dancing now.

So Much So Fast

Married filmmakers Steven Ascher and Jeanne Jordan bring us "up close and personal" into the life of the Heywood family of Boston and the five-year struggle of 30 year-old Stephen with the devastating effects of Lou Gehrig's disease ("ALS"). Rather than the straightforward narration of Phoenix Dance, So Much So Fast gives us a nuanced presentation of several family members of the Heywood clan over the five-year period (1999-2004) which this film covers. Stephen is one of three boys. He gets married to his beloved Wendy after he has contracted the disease. His younger brother Jamie, an obsessive, brash, energetic, and by his own admission "insane" young man, quits his job to dedicate his life to setting up a medical foundation which would cure, or at least retard the ALS which Stephen faces. Dad is a professor of engineering at MIT; mom is a smart and supportive presence.

From 1999-2004 Stephen's mobility declines until, finally, he not only is confined to the wheel chair but he becomes unable to communicate orally or even to move his extremities. As Stephen's condition deteriorates, Jamie seems to become more hyper, more committed to using "guerilla science," as it is called, to goad the scientific "establishment" into action on an ALS cure. Life spins along and often is on the brink of spinning out of control. And for Jamie it arguably does, as his cute, articulate and impressive wife finally throws in the towel and moves out. Jamie is seemingly philosophical about it, but his dismissive or, at least, insensitive remarks about his wife show that his obsession with cure has taken over his life. He becomes as imprisoned in his fight against the disease as Stephen is in his submission to the disease. Its relentless march continues, then, claiming the healthy and the infirm in its wake.

Three Things

Three things, however, make this movie/documentary especially powerful. One is its unaffected, though affectionate, portrait of the family realities of a man struggling against ALS. We see moments of true affection and optimism, endearing little exchanges betwen father and son, husband and wife, brother and brother, recognitions that life is not bound by the current physical limitations of Stephen, even though it sometimes seems defined by them.

Second, we get an inside view of the stark realities of trying to deal with the scientific "establishment" when you have a good idea, few scientific credentials and not much time. "Big Science," as I will call it, has a philosophy, an accepted manner of proceeding, a filtering process that is supposed to maximize discoveries and fruitful advances in medicine. But as any who know the course of some devastating or understudied illnesses (such as autism) and Big Science's ("BS") reaction to it, BS is often deaf to the pleas, and the insight of those who might most be able to help--parents and loved ones of the sufferer. Working against BS is like trying to run through the defensive line of the Pittsburgh Steelers without pads or blocking--you simply get creamed and left injured on the field. But you never know the effects of your energy in the long run, and it might take iconoclasts and crazily committed people like Jamie to lead to breakthroughs that the scientific establishment will, eventually, recognize and embrace, even as they continue to celebrate themselves alone.

Finally, we are given a sort of mixed message about hope. On the one hand the film ends in 2004 with Stephen getting a respirator which should extend his life into the near or even distant future (we are never told how life "works" for him after that). On the other hand, we see the toll that Stephen's illness takes on everyone, especially Jamie and his wife. No amount of love, prayer, support, energy, money or talent can seemingly wear away at the irreversible and relentless course of this disease.

Yet Stephen lives, and so must we. Though we don't face ALS every day, we face it "in miniature," as losses come our way and frequently obscure and erode our joy in living. By thinking deeply on Stephen's story, then, we are forced to consider our own lives and embrace the days we are given. May we do it with half the optimism and fidelity as Stephen and his family show(ed).

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