Browsing through an eclectic used bookstore recently, I came upon a copy of Susan Sontag's small but mighty "Illness as Metaphor", published in 1978. Sontag uses her wisdom and literary talent to expose and debunk the myths which blamed the victims of tuberculosis (in the 19th century) and cancer (in the 20th century) for their own conditions, often exacerbating their suffering by propagating myths which have the power to discourage rational thinking and the pursuit of the best treatments for disease. Although I fully embrace the idea of the mind-body connection, certain writers, thinkers, public institutions and media sources have often used fear, ignorance, and outright bigotry to hold sufferers of certain diseases at arm's length, rendered single-handedly responsible for their plight. Fear of death will turn humans away from their suffering brethren, and Sontag points out that TB and cancer were hallmark cases in such treatment and myth-making.
Making my way through the first few chapters, I immediately began to wonder how this idea has been treated by writers and thinkers vis-a-vis the AIDS epidemic. A quick Google search revealed that, lo and behold, Sontag had revisited the ideas of her original book in a follow-up treatise, "AIDS and its Metaphors", published in 2001, which I am now very keen to read.
Although I have yet to finish the former work of Ms. Sontag and am as yet uncertain if I will agree with 100% of her thesis, I can immediately agree that language has been frequently used as a weapon against the sufferers of myriad diseases. I am sure Ms. Sontag will address in her second work the notion that AIDS began in the early 1980's as a "gay" disease, with large numbers of gay men in urban centers falling prey to a strange "gay cancer" erupting on the skin like so many bruises. The long-esgtablished marginalization and social isolation of the gay community allowed mainstream America to ignore its importance, many claiming that AIDS was a punishment by God visited upon the "wicked" homosexuals and their "unnatural"ways. Photographs of early protests even show evangelicals holding signs using the word "gay" as an acronym for "Got AIDS Yet?" or "God Abhors You."
Words are powerful, and even those of us with the best intentions may at times use them to the detriment of others. In my position, it is all too easy to fall into blaming those affected by substance abuse, eschewing the disease model and embracing the notion that these individuals are wholly responsible for their actions and should know better. Life experience alone will convince most thinking individuals that substance abuse and the suffering it engenders goes well beyond a simple "personality flaw" of the sufferer. Similarly, depression---experienced by millions of people around the world---responds quite poorly to admonitions that one should simply "get over it" and "cheer up". Research bears out that substance abuse and mental illness have genetic, physiological, psychological, and chemical components over which we do not have complete control. Exasperation with a recalcitrant substance abuser is one thing---outright blame is another.
AIDS, cancer, substance abuse, disfigurement, disability---any and all of these conditions can cause the uninitiated or ignorant to turn their faces in disgust or denial, the common denominator being fear. Fear of death, fear of mortality, fear of the unknown, fear of the "other"---our fears will often prevent us from looking another in the eye and see their suffering as if it were our own.
Each day is an invitation to open ourselves to the suffering of others, and each time we embrace that opportunity, we further the causes of compassion and love. As Mother Teresa once said in one of my favorite quotes of all time, "I have found the paradox that if I love until it hurts, then there is no hurt, only more love."
Showing posts with label illness. Show all posts
Showing posts with label illness. Show all posts
Sunday, December 10, 2006
Tuesday, October 10, 2006
Illness, Change, and the Spectre of Loss
My step-father begins radiation this morning at 8:30, perhaps at this very moment. He will also take oral chemotherapy for the first six weeks and then perhaps change to intravenous therapy thereafter. The only cure for pancreatic cancer is surgery, and this is not a possibility for him, at least for now, and perhaps never. These are the times when living five hours away from one's aging parents is a painful and isolating experience.
Life-altering illness offers many lessons and will push one to the edge and beyond. Change is the only constant here, and there are so many with which one must cope. It is not only change which holds one in its grip, but the spectre of loss visits in guises both small and large. One might lose one's hair from chemotherapy. The ability to drive, to eat whatever and whenever one wants, the ability to control one's bodily functions may all be lost at any time in this complicated game. For every step forward, there can often be several steps back, a new aspect of loss appearing at any moment.
I would assume that the most devastating losses come in the form of the loss of independence and of dignity. Retaining independence becomes a major challenge as the body gives way, as symptoms preclude even the most basic of daily activities. And with the loss of independence, one may begin to feel a loss of dignity, of the self, of one's place in the world. When the individual becomes weak, incontinent, unable to toilet him- or herself, unable to bathe independently, these are the losses in which the person begins to lose quality of life and a true sense of self, or at least a sense of the self as one has known it.
Anticipatory loss is another aspect of illness. As a form of grieving, this manifests as one faces losses which are only around the corner. Depending on the form of disease, one can anticipate further deprivation and change. In progressive neurological disease, even the most simple function may be on the docket. The powers of speech, swallowing, hearing, touch, sexual function---these too can be taken away and remain but a memory.
The most devastating of all losses may be the knowledge that one will eventually leave one's loved ones behind. The worries and concerns may mount: Will s/he be OK? Will they be financially solvent? Did I do enough to prepare? Are my affairs in order? How much will my illness cost them, both emotionally and economically? Will my loved one be able to continue on without me? Who will care for them when they are sick or needy? Did I accomplish all that I wanted to accomplish?
Finally, beyond loss, one begins to look toward the future, one's future beyond this world. One examines the spiritual questions on the table, reflects on one's life, hopefully makes peace with the choices that have been made, and considers what will happen when the curtain closes on this earthly existence. The beliefs that have grown in the psyche and mind over the decades now come to bear. One's faith---or lack thereof---makes itself known. They say there are no atheists in foxholes, and the existential begins to take on more and more importance as the material world recedes. This is the time when the outer losses lose the crucial impact which they once carried, and the mind turns inwards towards matters of spirit, of faith, of making peace with both life and death.
I have watched a number of individuals enter, travel through, and complete this process. For those who lost function of outward communication and became demented or aphasic, their inner peacemaking was just that---inward---and I have not been privy to their process. For those who retained their mental capacities and ability to communicate until the end, the observer and loved one can glean much more from the experience and in some ways share more in that journey.
When the individual entering this phase of life and letting go is an intimate loved one (like a parent) rather than a patient, that is where the poignancy of this process takes wing, and also where the pain can become more visceral. This is the place where my mind and heart now dwell, and it's now my turn to walk this road as I have watched so many others travel with me as advocate and guide. The loss may be swift, it may be slow, but it is real, it is intimate, and its reality cannot be denied. I feel for my mother as she faces this gradual deneoument of her life as she has known it, and while I fear for her security and stability, I also must care for my own. This is no place for codependence and loss of one's center. This is a time for groundedness, thoughtfulness, spiritual insight, sensitivity, and compassion for myself as well as others.
As a family, we have crossed that threshold of loss and letting go, and the path which we will follow together has been trod for millenia. May we do it well, with grace and humility, and come through the other side stronger and more healed, and may my step-dad's losses and eventual passing be peaceful and as painless as possible, with suffering kept to a minimum. This is my wish for us and for all families who are on any portion of this universal journey of life, love, and death.
So be it.
Life-altering illness offers many lessons and will push one to the edge and beyond. Change is the only constant here, and there are so many with which one must cope. It is not only change which holds one in its grip, but the spectre of loss visits in guises both small and large. One might lose one's hair from chemotherapy. The ability to drive, to eat whatever and whenever one wants, the ability to control one's bodily functions may all be lost at any time in this complicated game. For every step forward, there can often be several steps back, a new aspect of loss appearing at any moment.
I would assume that the most devastating losses come in the form of the loss of independence and of dignity. Retaining independence becomes a major challenge as the body gives way, as symptoms preclude even the most basic of daily activities. And with the loss of independence, one may begin to feel a loss of dignity, of the self, of one's place in the world. When the individual becomes weak, incontinent, unable to toilet him- or herself, unable to bathe independently, these are the losses in which the person begins to lose quality of life and a true sense of self, or at least a sense of the self as one has known it.
Anticipatory loss is another aspect of illness. As a form of grieving, this manifests as one faces losses which are only around the corner. Depending on the form of disease, one can anticipate further deprivation and change. In progressive neurological disease, even the most simple function may be on the docket. The powers of speech, swallowing, hearing, touch, sexual function---these too can be taken away and remain but a memory.
The most devastating of all losses may be the knowledge that one will eventually leave one's loved ones behind. The worries and concerns may mount: Will s/he be OK? Will they be financially solvent? Did I do enough to prepare? Are my affairs in order? How much will my illness cost them, both emotionally and economically? Will my loved one be able to continue on without me? Who will care for them when they are sick or needy? Did I accomplish all that I wanted to accomplish?
Finally, beyond loss, one begins to look toward the future, one's future beyond this world. One examines the spiritual questions on the table, reflects on one's life, hopefully makes peace with the choices that have been made, and considers what will happen when the curtain closes on this earthly existence. The beliefs that have grown in the psyche and mind over the decades now come to bear. One's faith---or lack thereof---makes itself known. They say there are no atheists in foxholes, and the existential begins to take on more and more importance as the material world recedes. This is the time when the outer losses lose the crucial impact which they once carried, and the mind turns inwards towards matters of spirit, of faith, of making peace with both life and death.
I have watched a number of individuals enter, travel through, and complete this process. For those who lost function of outward communication and became demented or aphasic, their inner peacemaking was just that---inward---and I have not been privy to their process. For those who retained their mental capacities and ability to communicate until the end, the observer and loved one can glean much more from the experience and in some ways share more in that journey.
When the individual entering this phase of life and letting go is an intimate loved one (like a parent) rather than a patient, that is where the poignancy of this process takes wing, and also where the pain can become more visceral. This is the place where my mind and heart now dwell, and it's now my turn to walk this road as I have watched so many others travel with me as advocate and guide. The loss may be swift, it may be slow, but it is real, it is intimate, and its reality cannot be denied. I feel for my mother as she faces this gradual deneoument of her life as she has known it, and while I fear for her security and stability, I also must care for my own. This is no place for codependence and loss of one's center. This is a time for groundedness, thoughtfulness, spiritual insight, sensitivity, and compassion for myself as well as others.
As a family, we have crossed that threshold of loss and letting go, and the path which we will follow together has been trod for millenia. May we do it well, with grace and humility, and come through the other side stronger and more healed, and may my step-dad's losses and eventual passing be peaceful and as painless as possible, with suffering kept to a minimum. This is my wish for us and for all families who are on any portion of this universal journey of life, love, and death.
So be it.
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