Here are the notes from my talk on cancer and family systems. Rough draft and needs help, but it got me through.
Family Systems and Cancer
a. Contemplating the impact of cancer on a family is a complex endeavor. A family is a social system of two or more people that are inter-related and is itself a unit of analysis that behaves differently than an assortment of random people. A family is different than a random assortment of people in that it has developed its own pattern of interactions, its own set of rules, each person in a family is nominated to fill particular roles. A family both inherits and constructs its own forms of homeostasis and seems to know instinctively how to maintain its own patterns of functioning and seems to know instinctively how much change it can tolerate through a complex set of mostly unwritten rules that are somehow both invisible to the family and at the same time followed with a fierce allegiance.
b. But each individual in the family is herself or himself a complex psychological system comprised of thoughts, feelings, behaviors, and spiritual impulses comprising what some call a personality. These complex cognitive, emotional, behavioral, and spiritual subsystems are at times unified and whole within a person while at other times are in deep conflict. And while each individual human has their own psychological complexity, these become even more complex when one person’s psychological complexity interacts with another person’s psychological complexity to form relationships, construct shared meaning, and reside situated within the larger social contexts such as family, church, neighborhood, and workplace.
c. Focusing in even further, these complex psychological systems are contained within a complex physical system called a body, an amazing assortment of interrelated subsystems: respiratory system, digestive system, skeletal system. These systems are meant to work in an amazing harmony in order to grow and sustain this miracle we call life.
d. But these bodily systems do not always function as intended. One of these dysfunctions comes at a cellular level: cancer. When cancer develops in the bodily system, the effect of that bodily dysfunction does not simply reside only in the body. There is not just a physical effect of cancer on the body, but there is also the psychological effect of cancer on the individual. It touches the thoughts, feelings, behaviors, and spirituality of the person. Panning out further still, when cancer touches the body of a person and the psychology of a person, it also touches the social systems in which each individual resides. Marriage, family, family of origin, church, workplace, neighborhood – this abnormal cell activity, that for the most part cannot be seen by the naked eye, has a powerful and often fierce impact on the many systems in which it is contained. Cancer is biological of course, but is also psychological and social. It is biopsychosocial.
e. For each of these levels, there are tasks that must be accomplished.
i. At the level of the body, the task at hand is to stop the cancerous growth with surgery, radiation, chemotherapy, hormone therapy, special diets and a whole array of physical interventions. If the body is not taken care of, the cancer is likely to kill the body.
ii. At the psychological level, there are many tasks of belief, emotion, behavior, and spirituality. Beliefs about health, the medical community, the course of cancer, how much to accept or not accept the diagnosis and many others touch the cognitive part of the individual. Fear, sadness, depression, anxiety, anger, guilt, and all manner of emotion must be engaged or suppressed – there is no way not to manage these emotions, some of which can be all-consuming. There are decisions to make, hundreds and hundreds of decisions. The extent of one’s faith in God are challenged. Bad faith systems and bad theology are exposed, if the person is fortunate, but also not easily replaced with better ones.
iii. At the relational system level, the social context must reorganize in order to heal. The rules, roles, patterns of interactions, relational boundaries, and homeostasis in general must all be renegotiated because cancer has imposed so much that the system cannot remain the same. Even if the social system is determined to remain the same, to keep all the same patterns and rules and roles, it shifts from supportive to unsupportive, from honest to dishonest, from responsive to non-responsive. If the social system does not reorganize, then the system itself has become a threat to the health of the individual.
f. Within each systemic level comes along with it a level of abstraction.
i. On the physical level there is actually a thing, or so it is perceived, that is the cancer itself. It is the collection of cells that are driven to behave in an abnormal and threatening way. They are something that can be seen using medical and scientific procedures.
ii. On the psychological level, there is more abstraction, but the experience is no less real. Fear is real, but much harder to see. Denial is a real thing and can be threatening to health, but again is not easily grasped. These psychological abstractions are hard to detect, but even more so are hard to evaluate. What is the wrong emotion or right emotion to have in response to cancer?
iii. On the social system level the abstractions can be even more abstract. There is no way to put a family rule under a microscope, but a family rule that is followed might be the difference between life and death. The meaning a social system constructs in response to cancer and assigns to cancer and each other is not simple to detect or comprehend while at the same time it cannot not happen.
g. The more abstract the unit of analysis, the more it may be subject to metaphor, comparison, and social construction.
h. For example:
i. Cancer, the Systemic Bully. When the diagnosis of cancer is given to an individual, it is also given to a set of social systems. Cancer barges in and, in a moment, assigns everyone a new identity like a bully gives a really lousy nickname that just happens to stick and now that is how everyone knows you. It changes your name and how people understand you. It intrudes and renames every relationship you have. Cancer can turn a marriage into a cancer marriage. Cancer can turn a family into a cancer family. A small group at church could become a cancer small group. A workplace may become, at least in part, a cancer workplace. When knowledge of this cellular abnormality seeps into the awareness of a social context, it leaves its mark like a bruise, or perhaos like a drop of red food color into a clear glass of water – you can’t uncolor it. Identities change. Relationships change. Priorities change. You can add more color to the mix, but you can’t uncolor the water once it is colored. What must be highlighted and what must be obscured are reorganized in such a profound and urgent manner that whatever was once considered normal appears no longer accessible. The Bully, Cancer, is located inside a person, but it is by definition also located inside every social system containing that person.
Another Example of metaphor to help understand the biopsychosocial reality of cancer:
j. Cancer, the Dark Inquisitor. Cancer is the Dark Inquisitor that comes without invitation to interrogate the essence of your life: your body, your mind and your social context. Under interrogation, everything must be renegotiated and re-ordered. The Dark Inqusitor comes to interrogate the mental toughness, interrogate the emotional stability, and interrogate the spiritual sustainability of a person. And this interrogation is not in isolation. No. It is a socially situated interrogation within a marriage and within a family and within a collection of social systems. But further still, the interrogation is not just for the individual, but also it is for everyone connected to the person with the diagnosis. The social system is diagnosed with cancer and therefore the social system is also interrogated.
What questions does this Dark Inquisitor of cancer ask? What is the interrogation like? It might go something like this?
Questions of Diagnosis and Acceptance:
1. How long will it take to accept this diagnosis?
2. Will you ever accept this diagnosis?
3. How many different strategies will you use to deny the reality of this diagnosis?
4. Will you change in order to comply with treatment?
Questions of Meaning Making:
1. What meaning will you make of this diagnosis?
2. What does it mean to be a cancer family? A cancer marriage? A cancer church?
3. What does it mean to carry death with you everywhere you go?
Questions of Relationship Durability:
1. Will cancer heal or further exacerbate the existing relational fissures that already exist in your family system?
2. What communication strengths will be accessed?
3. What communication weaknesses will be exploited?
4. How will the family reorganize in response to this diagnosis?
5. Who are you going to tell and when? How?
6. How will you tolerate it when word of your cancer is new to someone, but painfully old to you?
7. How will your identity change in your social contexts? Friends? Church? Work?
8. Who no longer knows how to relate to you?
Questions of Self-differentiation:
1. How emotionally mature are the individuals of your family?
2. How emotionally mature is the family as a system?
3. How will your assumptions about medical professionals be given voice?
4. Will you have the courage and clarity to advocate for your own healing?
5. How does hope and despair ride on the relationships in the family?
6. How will existing family roles deepen?
7. How will relational pathologies be exposed?
8. How will you manage other people’s empathy failures?
9. Are you ready to be more gracious than the people trying to comfort you?
10. How will you tally the losses?
11. How will you manage the griefs?
12. Where is your courage while staring fear in the eye?
13. How will you process the guilt of everyone else having to take care of you and everything costing too much?
Existential and Spiritual Questions:
1. Can you make friends with uncertainty, ambiguity, and powerlessness?
2. Will you let them be your teachers?
3. What will you have to say when cancer threatens to take it all from you against your will?
4. Are you able to drill for hope in a desert of despair?
5. Do you have anything worth saying?
6. How much do you love?
7. How much are you prepared to lose?
8. What do you really value?
9. What is your life truly about?
10. What is your theological fortitude?
11. Are you ready to relearn everything you ever thought you knew?
12. Are you ready to relearn it all with no promise of ever getting to use any of that new learning?
13. Who are you when you are perpetually, completely, and totally exhausted?
Are you tired?
Are you tired, yet?
The interrogation of the Dark inquisitor is relentless.
How could a relatively small cluster of cells cause so much struggle – and make us so tired?
And yet there are stories of life that emerge from this sickness of death. From the millions who rally and run and wear pink to find a cure to the raw and honest comedy of cancer survivor Tig Notaro. Yes, cancer humor is a thing – if we can laugh we are alive. As individuals embedded within social systems, we respond to cancer. We rally each other. We rally the medical community. We rally technology, researchers, hospitals, philanthropists, and devise all manner of ways to push back against this monster. Cancer and the death it wields against humans and human systems gets a response and that response is an indicator that life matters. Cancer does not seem to be giving up too easily, but neither are we. We have taken on many casualties in this brawl with the bully, we have been buried in questions by this Dark Inquisitor, but we keep on trying to live. In response to cancer, we seek life at the cellular level. We seek life at the psychological level. We seek life in our relationships.
I also experience moments when I feel triumphant: "Cancer---You. Are. Not. Going. To. Win....ANYTHING." And I have moments when I feel so defeated: "You have taken everything." Most of the time though, I dwell somewhere in between, and this "Dark Inquisitor" forces the question perhaps we ALL should really be asking often and that is, "However long or short it may be, how do we live this Life well?" Not such a bad question to ponder I suppose. ---Kathy