… a Holley resident once told a reporter, at A.G. Holley, “the principal thing is to get well and get out of here.” (‘In Florida, a Lifeline to Patients with TB,’ The New York Times, June 12, 2010)
As someone born after the de-institutionalization of all kinds of patients – those suffering from both mental illnesses and what we like to call plain old illnesses – I have never stopped to consider the environment of the sanitarium. Even as someone who studies the 19th and early 20th centuries, where authors whose works I read more often than not succumbed to early death at the hands of diseases we now cure easily, it doesn’t register with me that as recently as fifty years ago, treatment could consist of anything besides a quick hospital visit and then a solitary regimen of medications taken at home, sick days meaning isolation in the private home.
When I think now about the few forms of institutionalized care that I’m familiar with, the association is purely negative: nursing homes and mental hospitals. They’re frightening, alienating environments, signaling to me the helplessness of the patient and the power of authorities over not just their well-being but over their very lives. Even I assume that I would become someone holding onto their “own” house for dear life, even after no longer being able to care for it, rather than go to someplace where I trade independence for life.
Yet reading about one of the last tuberculosis sanitariums in the United States, I was struck by the idea of community, environment, and disease. Community not in the sense of connections to family and neighbors or friends, but connections to caregivers and to a different kind of neighbor – those who share not your locale but your condition. Your way of life as influenced by what makes you suddenly abnormal. The illness.
With illness comes wellness. But when we think about wellness, what is that? Illness is not such a difficult everyday concept, at least not one that is questioned: it’s a diagnosis, something that we can identify, name, categorize, “treat.” It’s something outside of ourselves. Wellness seems somehow more connected to our self. Some kind of combination of healthy habits, emotional strength, work-life balance. It consists of recipes posted on blogs “for health” that include produce from Whole Foods.
I’m not about to criticize cooking from scratch or buying decent produce. Rather, it seems that wellness is at the same time a more vague, yet more socially-anchored term. It comes up, for me, most often when we are talking about the upper middle class, and a kind of lifestyle.
Back to the sanitarium. I was surprised to read that its approach is – well, wellness, taking the very situation of suffering from TB as the illness itself, in a way. This institution helps patients with alcoholism, dentures, healthy eating. And just as importantly, I think, it gives a safe space to recover. Its very existence challenges the idea that recovery is a physical process done at home, in private, within the family, with medications or other treatment prescribed from the outside.
Of course all of these things are part of a healing process. But I find myself reflecting today on the idea of environment and illness: a separate environment, a protected space removed from the context of daily life. A space in which community changes, in which our regimes and the ways in which we can relate to ourselves and to others are loosened and given room to expand or shift.
I think about confronting serious illness and the disconnect between facing illness – often invisible to others on the surface – and then that “process” of recovery. I think about support groups, of course. But also the aftermath. How can we reconcile such an experience with our suddenly surreal daily lives? How can we experience both this extraordinary state and the ordinary, at the same time and in the same space, and find ways to incorporate these both as a part of “our lives”? As in, a part of the narrative of our lifetime?
These are questions that are of interest to people other than myself. This is a discourse that is so prevalent in the United States, particularly among those with cancer, but I think it applies to illnesses of all kinds. And I wonder, is the removal of oneself to the very center of private life in an attempt to heal somehow counterproductive?
As we can see in this article, the state of Florida is trying desperately to either shut down the facility, privatize it, or “cut costs.” The cost of caring for drug-resistant TB is not cheap, and Medicaid is a major factor here. But I think this view of the state toward the facility is indicative also of our attitude toward illness, space, the relationship of body and mind (and not the influence of healthy mind on body – the influence of illness on the mind, and their mutual relationship), and the temporal surreality of living both ill and within a recognizable private routine.
I am not trying to romanticize institutionalization here. Rather, I am trying to rethink, a little, our approaches to illness, wellness, and caring for ourselves – our collective selves. Ourselves as a nation (and I say this as an American). Ourselves as a different kind of community – a national community, a community linked by situation rather than location or blood ties. A different way of thinking about where we belong and when.
I will end with another quote from the article that reflects this problematic relationship: the healing possibility of the experience of serious illness outside of the everyday, and the resistance to the limits and changes that that very relocation imposes on us.
Patients also leave with more than just stronger lungs. Maintaining old sanitarium ideals, Holley offers care beyond TB, whether dentures and eyeglasses or cultural activities, including outdoor classical music concerts for the noncontagious. Many Holley residents who hated arriving end up leaving profoundly changed.
“It’s not uncommon, as patients get better, for them to see this as a second chance at life,” says Dr. David Ashkin, Holley’s medical director, a Brooklynite with a hard-rock ’80s mullet. “It’s very spiritual and life changing to go from nearly dead to alive.”
Most days in fact are a mix of profound appreciation for life, and gnawing sadness at the limits of institutionalized existence.