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
Introduction:
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