By Sheana Ochoa.
Anyone who has watched the scene in the trailer of The Theory of Everything when Stephen Hawking’s character pulls himself up a staircase knows the film is a heavy hitter. Atop the stairs a robust, healthy baby curiously stares down at his helpless father in a macabre exchange of roles. For millions of disabled people in the United States, that scene is less a dramatization of a world-famous astrophysicist’s life than a representation of their struggle with everyday acts such as climbing stairs. The Theory of Everything is not the first film to tackle the vicissitudes of chronic illness, but it is one of a rare few that portray illness from the perspective of the afflicted. Anyone could recall a handful of films to disprove such a statement, but I’ll wager the illnesses presented in such films are limited to three categories Hollywood deems palatable (more below). Could The Theory of Everything, along with this year’s assortment of other illness films, mark a sea change in America’s ableist society? More importantly, to what extent could the transformative power of film affect society’s understanding and acceptance of our physically and mentally challenged fellows?
This year’s crop of illness-related films is unique if only for the number of nominations they are collecting during awards season. A look at the Best Actress category at the Golden Globes revealed four out of five of the roles nominated dealt with mental or physical conditions from substance abuse to Alzheimer’s disease. In addition to yet another cancer film in The Fault In Our Stars, illness films this year explore less familiar terrain in You’re Not Alone (amyotrophic lateral sclerosis or ALS), The Theory of Everything (ALS), and Still Alice (Alzheimer’s), while Cake takes an unprecedented step into the widespread epidemic of chronic pain. Could Hollywood be discovering that illness narratives have a critical and relevant role in a society that measures a person’s worth by material means from their profession to their physical appearance?
With the exception of mental illness, substance abuse, and Hollywood’s sweetheart illness – cancer – stories of affliction rarely get made into films, certainly not more than once every few years. (AIDS/HIV films proliferated during the 1980s and 90s when the virus was terminal, becoming “fashionable” for similar reasons discussed below that also make cancer stories amenable to audiences). Hollywood illness films seldom put viewers in the shoes of the stricken. Their sickness is whitewashed and/or depicted through the lens of the healthy – loved ones, caretakers, and doctors as is the case in the life-affirming film Awakenings, which depicts illness from both the patient’s and doctor’s viewpoint. Films acknowledged by Hollywood that portray illness (other than the acceptable narratives mentioned above) specifically through the eyes of the ill are rare. The Elephant Man (1980), My Left Foot (1989), The Diving Bell and the Butterfly (2007) and, as mentioned, The Theory of Everything come to mind.
Among illness films deemed suitable for the screen, mental illness is the most romanticized. A common trope links an artist’s illness to his creativity (Shine, 1996) or a scientist’s to his genius (A Beautiful Mind, 2001). We are fascinated by mental illness because it’s demarcated from our own reality. We feel impervious to contracting it while the genre itself doesn’t assault the senses with deformity, lesions, or other visuals of the body in decline. For similar reasons we easily stomach films on substance abuse, which are invariably sugarcoated as a triumph-over-adversity tale wherein the hero gets clean and sober.
Cancer is the one illness in which the afflicted is not ostracized. We can look at cancer with compassion. Why? Because the patient either dies or recovers. Although in reality cancer patients deal with long battles and recurrences of the disease, cancer is portrayed in black and white, rather than a continuum of illness. Lingering states of dis-ease, suffering and the progression of illness into life-long defeat doesn’t make for a viable American movie. We want our Hollywood endings with bow-tied resolutions.
Unlike films such as Away from Her and Iris that deal with Alzheimer’s effect on the patient’s partner, in this year’s Still Alice played by Julianne Moore as the eponymous Alice, the lens is turned on the experience of the protagonist herself. At one point in the film, Alice tells her husband she wishes she had cancer. People understand it, wear ribbons for a cure, walk marathons for it. You aren’t shunned for getting cancer, accused of malingering or deemed in-valid due to any psychological, ambulatory or cognitive deficits, all of which come into play with most chronic illnesses. Unlike this year’s contenders, however, Still Alice doesn’t offer a detailed depiction of what it’s like to lose grip on the world around you. Instead, we are given short clips as opposed to a narrative in which Alzheimer’s hijacks Alice’s life. There is no gradual depiction of Alice’s decline, or a visible recognition of her dissolution. Instead, without much of a visual emotional struggle, Alice goes from forgetting words to being unable to speak in the span of a year. Although the rate of decline will vary between patients, the disease isn’t nearly so clear-cut. Some days are better than others.
While she still has her full faculties, Alice records a video to herself so that when she can no longer remember self-defining facts such as where she grew up or her eldest daughter’s name, she can swallow a bottle of sleeping pills and die with what is left of her dignity. But suicide is not a socially acceptable way to exercise one’s rights. We can mercifully put our pets out of their misery, but not ourselves. Had Alice successfully fulfilled her last wishes, the film’s title would have been accurate. Instead, the Alice at the end of the film has no resemblance to her former self. By contrast, the French film Amour (2012), which deals with a couple in the aftermath of a stroke, painstakingly depicts the pernicious decline of the victim’s character as well as the decision of the husband to stop the suffering by ending his wife’s life. Although the film won the Oscar for Best Foreign Film, mainstream America is no more accepting of the gritty reality of euthanasia than it is of suicide.
Intimately examining the issue of suicide, Cake opens on a circle of women in a chronic pain support group asked to verbalize how they feel about the recent suicide of one of their members. Most people who know they have a progressive, incurable disease will come to the point where they’ve exhausted their arsenal of doctors, treatments and drugs and simply can’t continue to live in excruciating pain. Can we blame them? We do. We did this past year with Robin Williams. He had been fighting several afflictions most his life and, despite his many resources, life was too unbearable to endure. The Twitter backlash alone summed up America’s view of suicide, judging Williams’ death as cowardly.
Cake approaches the question of suicide ingeniously: Our hero Claire, played by Jennifer Anniston, identifies with the deceased Nina, (who jumped off a freeway to escape her chronic pain) to the extent that Nina becomes Claire’s alter ego. Nina “appears” throughout the film to taunt Claire to follow her lead, which Claire heeds with a few half-hearted attempts. However, as the film unfolds, we discover Claire’s reason for not wanting to live isn’t due to chronic pain, but to loss. I don’t want to issue a spoiler alert so we’ll bypass the exact nature of her loss. What is important to note is that loss of health can be as catastrophic as any other loss. Suicide among those in chronic pain, like those in emotional pain, offers a viable release for the patient who is most often alienated through lack of mobility, resources, a support network, an understanding, competent doctor, as well as through social stigma.
In Western society, and America specifically, one’s worth is directly proportional to one’s ability. Illness is a temporary nuisance. One is expected to get better, to recover. Thus, the illness narrative in Hollywood is loath to represent lifelong or incurable illnesses. The Theory of Everything is an exception, showing the everyday obstacles Hawking faces as his disease progresses from the prosaic act of using his crippled hands to feed himself to the more serious issue of avoiding swallowing his intake through his windpipe and risk choking. The film dares risk these unappetizing details because the story is as much about Hawking’s triumph over the illness as it is about his tragic condition. Still, the filmmakers did not flinch from capturing the frustration and loss caused by ALS. In almost every scene, Hawking traverses or fails to traverse obstacles healthy people take for granted from dressing ourselves to playing with our children. Watching the film himself, Hawking related that he sometimes thought that actor Eddie Redmayne was him. What better endorsement of the accuracy of the experience of his illness could one get?
In the film after Hawking is diagnosed with ALS and given two years to live, he asks the doctor about his most important possession: his brain. Will the illness affect my brain? As devastating as ALS is, it does not attack the brain. And as the patient becomes paralytic, he does not experience pain as is the case with most other illnesses. Imagine the last time you had a really bad flu. The pressure in your head that made you unable to lift it from the pillow, the chill from the fever that you couldn’t soothe with more blankets because that would require getting up from bed, which was impossible with what felt like a blimp-sized skull to say nothing of the ache throughout your entire body as if the flesh were being slowly torn from your bones. Remember how you writhed in pain, struggling to breathe through inflamed sinuses? Forget about sleeping without a really strong sedative to mask the pain. It’s most likely you can’t remember that flu just as a mother forgets the pain of childbirth. But imagine feeling that sick all the time. Imagine this going on for months and years with no treatment, doctors who dismiss you or even insist it’s all in your head, and no end in sight to the physical torture. This is the reality for millions of chronic pain patients suffering from undiagnosed or misdiagnosed conditions from Lyme’s disease to Lupus. To put it into perspective, in 2011 the Institute of Medicine issued a report indicating that more than 100 million Americans suffer from chronic pain.
As someone who has grappled with chronic pain for over a decade and as a storyteller, I know that illness narratives offer a different kind of healing for us. Being acknowledged as human beings whose lives matter by telling our stories offers hope and acceptance. And yet, it isn’t only the stricken who leave the movie theater acutely aware of the simultaneous powerful and vulnerable vessel through which we experience the most ecstatic and devastating states of being: the body. I don’t know of a family who isn’t touched by illness. This is our reality, despite our technological advances and life-prolonging strides. Truth be told, the number of illness narratives at the movies this year doesn’t portend a shift in society’s attitude toward the mentally and physically handicapped. Their presence is mere coincidence rather than a conscious intent to acknowledge otherness in society. The trope of triumph over adversity even in the case of The Theory of Everything remains the formulaic approach to what is acceptably tolerant when looking at illness. But, perhaps after rising from the darkened theater, one or two patrons will reflect on the miracle of their working limbs, the ability to breathe in the open air without hindrance or pain, the energy to walk to their cars or homes with ease and comfort, and notice a lift in their spirit. Perhaps one or two people will even recognize the elevation they feel is not just from having seen an inspirational movie, but rather from a glimmer of gratitude in realization that “there but for the grace of God, go I.”
Sheana Ochoa is the author of Stella! Mother of Modern Acting, the first biography of acting legend Stella Adler. You can read more at her blog Stella Adler: A Life in Art and watch the book trailer here. Ochoa is currently at work on an illness memoir.