The Experience of Illness
Kingston, February 3, 2008
The Reverend Dr. Linda Anderson and Micky Shorr

"I sing the body electric; The armies of those I love engirth me, and I engirth them; They will not let me off till I go with them, respond to them, And discorrupt them, and charge them full with the charge of the Soul. . . . And if the body does not do as much as the Soul? And if the body were not the Soul, what is the Soul? . . . O my body! I dare not desert the likes of you in other men and women, nor the likes of the parts of you; I believe the likes of you are to stand or fall with the likes of the Soul . . . " Walt Whitman. I sing the body electric. Is the body the soul? Who are we? What is our relationship to our bodies? What are our beliefs about our bodies? What expectations? What assumptions?

Its complicated. We live in our bodies, we experience each other through our bodies. Yet one of the hardest tasks for human beings is to sing the body electric, to love and accept our own bodies, to live with our own changes: ageing, illness, and eventual death. Our culture constantly and obsessively tells us our bodies are not good enough; we must improve them: lose weight, remove the hair, make this smaller, make that bigger, defy ageing, ward off disease. For those at particular risk, not good enough quickly turns into body hatred. I sing the body electric. I sing the body electric and at the same time I recognize that this very vessel, this temple, this body electric falters, gets sick, ages, dies. It is because it does those things that we keep trying to make it perfect and impervious to change. But we cannot, and so, like Dylan Thomas, some of us find ourselves saying "Time held me green and dying, yet I sang in my chains like the sea. So we live in our bodies, but not always easily, not always peacefully, not always lovingly because our bodies call us to face the changes that make up our lives, and ultimately they offer a constant reminder of our mortality.

Thus our bodies challenge us all the time, but they particularly do so when we become ill. Today I want to explore the experience of serious physical illness, whether our own or that of someone we love, and examine how it affects our relationship to our bodies. Illness has a certain path through which it moves and at each fork in the road it poses some questions and offers some choices that both reflect and affect our relationship to life itself. What will we do? What choices open for us? What surprises teach us about ourselves, our deepest beliefs?

Serious physical illness is a journey of not only physical, but also spiritual, intellectual, and emotional import. Some of us have already experienced it in our lives, some have not. Many of us have been present through the serious physical illnesses of those we love: parents, friends, children. Susan Sontag, (Illness As Metaphor), notes that "Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place." Spiritually, the journey of physical illness is one of recovering our sense of trust in ourselves, our bodies, in life, in god, or whatever we name as the expression of the core of life. Emotionally we might experience ourselves on a roller coaster. How do we respond? Some of us feel anger that our bodies have betrayed us; impatience when they get in the way of accomplishing what we want to do; some of us feel despair and sadness at the loss. Some of us are taken by surprise, not expecting that this could happen to us; some of us blame ourselves, or become filled with regret, thinking that if we had only done this or that, had not done this or that, it would be different. Feeling out of control, we seek to control what happens to our bodies through the understanding of physical disease as a psychological phenomenon. Some of us expect to recover; some of us do not. Some of us get ready to fight; some of us look for acceptance; some become resigned. Some of us are afraid; some of us are brave; some of us are brave and afraid at the same time. Intellectually the journey is one of keeping ourselves integrated, of remembering to use our mind, our judgment, to continue to learn how to help ourselves and others through this.

Life is impermanent; change is the constant. We are of the nature to encounter physical illness. Our bodies become sick. Illness comes to the bodies of those we love. May we be present with ourselves and with one another as we navigate these unpredictable waters. May we inspire and teach one another by sharing our stories of the journey.

Micky Shorr is here today to do that. diagnosis day by Micky Shorr

began in the dark.
april earth was waking up. 
she exhausted preparing 
for the day's procedure,
expecting maybe a thing 
wasn't right,
but feeling secure that
it wouldn't be serious
 
familiar with emotional strife,
scars of the early childhood.
but her dear body,
during menses and menopause
in pregnancy, in childbirth
even now with aging, 
never really was a problem
 
he didn't make her have to wait, 
said directly it was cancer. 
she cried for this hardship
in the life she knew
was hard enough already 
dressed in a daze, 
not knowing a way 
to digest such news, 
yet hungry so taken 
to a health food store, 
bought chicken soup
and alphabet noodles,
whole wheat and organic.
 
later baby brother called.
she had to say it to him,
to the world, 
make it true,
I have cancer 
we'll get through this, he said. 
she cried some more, 
then understood 
she'd do as always
her very best

A diagnosis can turn the world upside down. A whirl of emotions: shock, dread, what now? How did this happen to me, to you? There were no risk factors; I eat right, I exercise, I'm not overweight. . . .Some diagnoses feel like a death sentence, whether they are or not, the way a positive HIV test used to. Others seem to promise exhausting treatment and collateral damage, the way some cancers do. Others seem to forecast unceasing deterioration, like Parkinson's. It's a time of fear and uncertainty. Do we trust the people in charge of our care? What are the options? I don't understand. How could this have happened to me? To you?

A sense of numbness, and/or overwhelm often occurs here as we have to deal with our feelings and make choices for treatment and give our lives over to it and to other people. For some of us the world of medicine is a new land, and one we would rather not emigrate to. We lose the physical independence and control we were used to and that can be extremely hard and we don't always do it with grace. Or , unexpectedly, we become caretakers and our lives turn upside down. Family and friends surprise us as they move away in avoidance and fear, or lay their own feelings upon us, or tell us what we should do, as if we didn't have enough to deal with already, while others exhibit a strength and a helpfulness we did not imagine.

We need to give ourselves some time to adjust. To take a breath; to take the hand of a family member, a friend, a person in this community here; to realize that the dread and anger which might have surfaced first are not the only emotions, are not the only qualities of our character. We're standing at a fork in the road of our lives, a turning point we did not seek. Nevertheless.

if an enemy exists by Micky Shorr

imagine them dark inky octopus like
the character of quicksand
trying to feed on my life force
murky sneaky treacherous 
not to be ignored
submerged by the tides but
not one feminine thing about them
what they do to me with me 
even for me 
remains unclear
referred to by others as a kind of gift
I find them useless and cowardly
dim facsimile of my genuine essence
not an opportunity I needed

The question now: What are we going to do with this? It may not look like an opportunity we needed, but it has thrust itself upon us anyway. How are we going to be? Our minds can help us here. If we allow for the possibility, we can learn that serious illness need not render us in-valid; we still have something to give, to teach. We can still be of use, as those of us who give care must remember. We can learn that although we might feel afraid, we also have reserves of courage available for tapping into. We can learn that sickness, even when it renders us dependent and physically suffering, does not take away our dignity if we hold it within. We can learn that even illness that brings deterioration does not do so on an even slope, but that there are times of beauty and clarity still. The people we surround ourselves with have a major role to play here, for good or ill. This can be a precious, healing time with family and friends. We can learn that despite the bad days, we can choose a measure of cheerfulness and optimism more often that we might have guessed and that it will help us. Perhaps most importantly, we can learn that the illness, whatever name it goes by, does not define who we are. We are always more than that.

in the hospital by Micky Shorr

everyone was nice to her
first night through the morphine
heard nurses saying
they would keep her on the surgical floor
refuse to send her to the cancer unit 
knew she was healthy
rich with lifeblood 
so why view the damage 
this disease could do
all so pleased 
when the wound was clean 
in just 2 days 
they talked to her person to person
student who washed and braided her tangled hair 
to help her remember that she was lovely
supervisor so glad the report said
all her margins were clean 
one nurse shared personal stories 
as people often did, 
sensing that she could listen
another told of her young son 
unable to deal with his grandmother's death 
she watched herself from the hospital bed
suggest to mom hospice group for kids,
retaining her own precious healer energy
throughout the week carried the heartache 
of your untimely disappearance
she is dreaming her disappointment 
when an orderly comes to take the vitals
he is standing there in his brown and beautiful body
in the dark she can sense his manhood, 
swooning almost in the fullness of it 
she is not the cancer, she remains alive 
 

The experience of a serious illness carries the spiritual necessity of redefining trust in our lives. Can we trust our bodies? Not if it means expecting them never to break down. Can we trust our bodies? Not if it means assuming that because we do all the right things we will never encounter serious physical illness. Can we trust our bodies? Yes, and it means loving them for the mortal, physical entities they are and still finding a way to sing the body electric. The experience of a serious illness carries the spiritual necessity of redefining trust in our lives. Can we trust our spirits, our souls? Not if we believe that illness only brings fear, dread, despair, powerlessness. Can we trust our spirits, our souls? Not if we believe that illness takes away our inherent dignity as human beings. Can we trust our spirits, our souls? Not if we believe that illness is a punishment from god, or the universe, or life for something we have done wrong, whether by intention or not. Can we trust our spirits, our souls? Yes, and it means believing that we can find within ourselves courage in the midst of fear, strength in the midst of dependence, humor in the midst of uncertainty, happiness in the midst of suffering. I believe we can and I have seen people do so, time and time again. We find it by looking to each other; by listening to each other's stories; by bringing into our lives people who inspire us to re-assert, re-build, re-define trust in life or trust in god if that word has meaning for you, and trust in ourselves: body and spirit. We find it by looking inside ourselves; by praying for it; by saying affirmations; by stating intentions; through study and research; by whatever methods are meaningful to us.

unfinished story by Micky Shorr

it's a big room
huge, cavernous even 
except lots of light from many windows 
I say to people when I'm telling about it
Damon Runyon quality, slice of life 
cross section I mean 
shared experience with strangers 
seen frequent during this course of time
 
the nurses work steady
moving about, checking medicine levels 
the poisons I call them
 
first see physician
not always the same one,
dear Dr A., most human
multi-tasking, hard to focus
such genuine caring
he calls me honey
and I don't mind
 
 
come into this room looking 
nicely dressed, pretty
with having my hair 
and some piece of my energy 
rosy cheeks and my appetite intact
not pale or thin till it's painful to look at 
 
chemo room
people my age or older 
stories about recurrence 
decade or more later 
also of course younger women
the shocking statistics 
for their disease
no one seems angry 
no display of bitterness
people's bravery and spirit 
that they laugh and joke 
with family and friends
might be mistaken for being stoic 
I know it's a testament
to being alive
 
struck each time
with new awareness 
this raging epidemic 
many lives it touches 
how people just won't know
until and if they have to
learning the cancer industry
drugs catastrophic expenses
toxic food water lipstick 
household cleaners on and on 
the government's lack of concern
the absence of outrage among us
can almost be discouraging 
 
mostly decide
to just do what they tell me
surrender to that medical world
generally mistrusted 
say gratefully over & over 
I am not nauseous
get to eat
keep my strength
usually have a good night's sleep
this could be what acceptance means 
 
then good news 
12 sessions will be 10
in the end doc says that
8 will be enough 
blood back okay 
marker described good as can be
released, let loose
freed from the holding pattern
back to a life with plans, desires
 
year goes by, all is well 
time for the test 
anniversary issues 
to remember that morning 
getting the news 
weak in the knees the 
mere notion of feeling 
those feelings again 
realize this truth 
I had cancer 
I have changed

Through symptoms, tests, diagnosis, treatment, the experience of a serious physical illness is an inward, as well as an outward journey. And after treatment? We have changed. No matter what comes next, be it recovery, remission, recurrence, or chronic progression, we have changed in body and spirit. And what now? After the challenges to our sense of security and trust in the world, after a closer look at our own mortality, after a lot of emotions, after encountering the possibility of growth and the development of a stronger and bigger personhood, what now? Here we are, at this time, in this moment. What now? We sing the body electric. Half-heartedly or whole-heartedly, with loud voice or whisper, with doubts or certainty, with love or ambivalence, we sing the body electric. What else could we do?

May it be so.

Closing words by Linda Anderson (with a Chinook adaptation)

Those of us who survive illness--
know what it means 
to feel despair
to feel afraid
to feel pain.
Those of us who survive illness--
know what it means 
to live with uncertainty
vulnerable in ways not known before.
Those of us who survive illness--
are those of us here today.
We are surviving
We are surviving through it all
We are surviving--
Our relationship with time different now
one breath at a time
one moment at a time
one footstep at a time
We are blessed--we are blessed
the source of life itself
which some call love and some call god or something else
blesses us
Blessed--
to be here now
together
in the cool of a beautiful day.
 
And we know it.
And we are thankful-- 
May all things move and be moved in us
and know and be known in us
May all creation
dance for joy within us. (Chinook)
May we walk with peace
and may the light of the universe
shine upon our path.