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FROM PART
I - GIVING THE MESS SOME MEANING,
The Introduction
Living
with illness is definitely full of surprises, punctuated,
sometimes, by setbacks. It is also an ongoing lesson in
flexibility, resilience, and perseverance. From the vantage
point of my midfifties, it seems to me that living with
illness offers an intensive course in the rule of life.
Illness clarifies what really matters, what is worth spending
time on, what is essential. Mid-life offers that course
to almost everyone over forty; living with illness focuses
and concentrates that instruction. In some ways living
with
illness reminds me of taking an intensive Italian class in
college. Class met every day, and only by showing up for
class could we learn the language. Living with illness
puts you into the same kind of intensive learning situation.
When you “show
up” by paying attention and becoming more aware of
the shape of your life with illness, you begin to learn the
new “language.” At
this point in my life, I live with a pancreas that has
healed to a certain extent. I am still taking medication,
still following
a particular dietary regimen, and am still afflicted from
time to time by pancreatic pain. I have also been working
with some groups of people who live with illness. Several
years ago in a class I taught at St. Mark’s, my Episcopal
parish in San Antonio, I suggested that we begin to look
at the limitations and diminishments of illness as the
beginnings of a new rule of life. At first, the participants
were jarred by the idea. How could illness be a rule of
life?
How could these various indignities and limitations have
anything to do with vitality, with liveliness, with choosing
life? How
could God be at the center of living with the diminishments
of illness? Together
we began to “re-frame” living with
illness. We named our various limitations. We listed the “givens” that
each of us lived with. These varied from person to person,
from illness to illness. The person whose diabetes required
regular insulin injections and checks of blood sugar had
different limitations than the person whose five years of
coexistence with a lymphoma had resulted in yet another experimental
protocol of chemotherapy. Each “given” traced
the outline of life with a particular illness. For example,
the dietary routine of an insulin dependent diabetic gave
her the frame from which her rule began. The man recovering
from a stroke discovered that his regular physical therapy
was the foundation for his rule. These “givens” that
come from living with the illness were the building blocks
for a rule of life. Each
“
given” also proved to be the starting point for reflecting
anew, for finding a rule of life in the midst of the ongoing
rounds of tests, exams, hospitalizations. After
the class had met for several weeks, one participant
remarked,“This is beginning to give all this mess
some meaning.” Redefining the illness led to looking
for ways to choose life in the midst of daily physical
distress. We were not trying to deny the fact of illness,
nor to paint the experience with Pollyanna-pink tones.
But we learned that even within the “givens” of
living with illness, there was a lot of rich variety.
One woman confined to a
wheel chair said, “When I started paying attention, I realized that people
talk to me now about their own difficulties. I don’t necessarily go looking
for them. They see me and I’m not so threatening. I’m less lonely
now than I was as a healthy person.” A man with a progressive illness realized
that the illness had helped him see the extent to which his work had become a
very controlling
idol. As he let go of the demands of work because of the greater demands of his
body, he realized the illness had been a kind of salvation. It led him to let
go of work as an idol and helped him examine other values he held in his life. If
you are living with illness, this book offers some suggestions
for transforming the way you perceive the limits that
your illness may place on you. While acknowledging the
hard losses that many face when illness overtakes their
lives, this text is also written with the conviction
that living with illness offers an opportunity to begin
anew. That does not mean it is easy. Nor does it
mean that living with illness is a happy experience. It does mean that out
of the wreckage, piece by piece, with companions along the way, we can begin
to discern life that is rich, vital, and real. It may not look at all like
the life that we lost. Yet it does have its own singular meaning and character—even
beauty—if we allow ourselves the time and patience for discovery. Copyright ©2004
Mary C. Earle. Excerpt used with permission from Morehouse
Publishing.
To
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