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Living with Chronic Illness:
Why Should I Go On?
by Stephen Schmidt
http://www.religion-online.org/showarticle.asp?title=307
Everyone who lives with a long-term illness thinks about
suicide at some time during that illness. My hunch is that these
emotions usually come early in the disease, during the first
struggles with the reality of chronic illness. The second most
common occurrence of those sentiments comes, I think, at times
of crisis in the disease, at times of reversals.
Though I have rarely seriously considered suicide in the 12
years I have struggled with Crohn’s syndrome, a digestive
disorder, I have flirted with the feelings. During one
particularly bad period of three months, when my symptoms were
acute and seemingly getting worse, I sank into what can only be
called a chronic depression. What joy is there in feeling bad
daily? Each meal was surrounded with the possibility of painful
aftereffects: cramps, diarrhea, chills and pain. Why then eat?
And I ate less and less, losing weight continually until I
reached a new level of thinness that frightened and shocked me
as I saw my body reflected in the mirror. I had no energy, no
zest. I often took naps and retreated into solitude. I rejected
company, thus adding to my depression.
In that period I remember thinking more than I wanted to about
death, thinking that it might not be the worst kind of
experience if life continued as it had for these months. I never
planned suicide, I just entertained the idea more often than at
any time in my life before. What helped me recover? How did the
spiral end? How can we move from such feelings to those more
positive and hopeful? How can we go on when things are very bad?
First of all, the truth finally became apparent to me that I
wanted to live more than to die. Life is filled with lots of
certainties, one has friends, a lover, children, family, a task
and dreams for a better tomorrow. The desire for life is just
plain human and absolutely universal. On the other hand, death
is always filled with mystery; we die alone, we leave all those
earthly pleasures. We will never walk in the sun again, never
taste a chocolate sundae, never smell spring, never talk to a
loved one, never be touched, never make love (that reality
always seemed laden with extra emotion for me!). I think one
goes on because life is stronger than death: it is the most
common universal value of being human.
Not so long ago I visited a dear friend of mine, a former
colleague, a theologian, who was dying of cancer. I wanted to
see Ken before he died, so I journeyed to Connecticut to visit
with him only weeks before he died. I wanted to talk about death
and life, about heaven and hope, about faith and doubt, about my
love for him and my gratitude for wonderful memories. We spent
the entire day remembering, telling stories, laughing and
crying, and holding.
I shall never forget his words about dying and living when I
pressed him about the Christian hope of heaven. He responded:
"Steve, I am far more interested in the geography of earth than
I am of heaven. "Those words said only weeks before he died,
were words spoken after another surgical intervention to extend
his life. He told me he wanted, as much time as possible, to see
the flowers, to smell life, to be with his wife and family, to
listen to music, and read more books. (His book orders continued
to reach his home after he had died.) He knew about the strong
living urge which is, I think, the birthmark of humankind. And
he faced death with absolute certitude about the life to come.
He had no doubts about resurrection, about the hereafter, about
the future hope of a new life and a new being. But for that day,
and each day until he died, life was a stronger desire than
death. I think that is the first reason we go on when we
experience bad times: because we want to live. Period.
Second, we live when things are not worth living for because of
a certain innate courage, a will to live. Something inside us
seems to call us to courage, to a persistent will to live in
impossible situations. I have noted great courage in the midst
of suffering in friends whose days are filled with pain and
heartbreak. But their lives are filled with even more courage.
They bear the primal sign of God in their life, a God who
created and said of that creation, "It is good." Life also is
good enough to be courageous, good enough to call us to valiant
decision and heroic lives. What it means to be human is to have
courage, and that quality of being, I think, is nurtured in
illness, sometimes to a degree that is almost awesome. Courage
faces the misery, faces death, faces despair, and still seeks to
live. I think that is why people turn from suicide to life; they
have courage, courage to hope, even if they never experience the
reality of that hope. Such "nonsense" sounds like primitive
gospel, to hope about a cross, a death, about suffering, and to
find in those dying struggles courage to live yet another day.
There is yet another reason for going on when things become
impossible. It has to do with others. All of us somewhere in
adulthood learn the wonderful lesson of community. We are formed
by others, even before we know our name. We exist because of an
intimate community of two, and we grow in a family, a community
of a small group. All our lives our identity is nurtured by
others. We do not live alone, and somewhere in growing up, in
becoming adult, we learn that others not only make life possible
for us, they rely on us to make life possible for them. We exist
because of our families and friends. And they exist because of
us, even when we are sick. So somewhere in despair, when life
appears not worth living, somewhere we remember others: spouse,
children, those whom we love.
Choosing to die, or dying itself, is never a solitary decision
or event. When one dies, others die too—not completely, but a
little. So the person deciding to end a life ends a whole series
of relationships, relationships that depend on that person. In
the process of hoping and deciding to live, the person who is
ill comes to the awesome insight that his or her decision is not
private. Each death, each suicide, is a communal decision: that
is, it effects all those who rely on our part of the human
equation. We live because of them, and they live because of us.
I suspect that this is a basic, elemental Christian notion, that
we exist for each other. "Love one another." Someone has said
that the smallest Christian community is a community of at least
two, one to love and one to be loved. So the Christian tug of
reliance, the responsibility of connectedness, makes the
decision about giving up, or giving in, a matter of importance
for more than the one dying. We turn away from dying because we
turn to those who have given life to us. We return the life; we
live for others as they have lived for us, even if it means only
a few more days or weeks or months or years.
Finally, there is one more reason why Christian sufferers turn
from suicide, and that has to do with the Christian notion about
what it means to claim something about the lordship of Jesus. A
wonderful colleague of mine, a Hebrew Scripture scholar, once
told me that he thought the most succinct statement of biblical
Christianity was this: "In all things God works for the good of
those who love him" (Rom. 8:28). That kind of faith has nothing
to do with Santa Claus religion, but Christians are those called
to trust the providential care of a compassionate God. It is the
same notion that kept Luther focused on a loving God, on God as
friend and not enemy. It is the same Christian conviction that
we live under grace, gifted, and abundantly surrounded by God’s
care and concern.
Not that the Christian always experiences this feeling, not that
at all; it is often almost the very opposite. The Christian
lives this conviction about God’s care in the midst of
impossible situations. One lives dependently, held in the
everlasting arms, arms that do not crush or smash or smother,
but that hold and comfort. Arms of "Abba," our "Daddy" (Rom.
8:15). Life and death, Christians are convinced, belong to the
creator and preserver of all. To believe that God created is to
believe that God really cares about "the hairs on our heads,"
the "lilies of the field," the "birds of the air." And if God so
cares about those mundane aspects of the cosmos, then God cares
for me. That is the ringing hope of Christian faith, the "for
me" aspect of the conviction. To believe that in all things God
works for the good of those who love him is to live life in
trust and hope, to give up on the perspective of personal
control, and to give in to faithful dependency on God’s intimate
care.
That conviction also conditions how we judge the case for or
against suicide. When I was a child, the church stood firmly
opposed to suicide. I remember the taboo vividly. Whenever
someone would commit suicide, that person did not receive
Christian burial. Suicide victims were judged to be outside the
sphere of God’s care. In fact, such understanding of God’s care
became a rule for not caring. This value was held by most
Christian communities. The church’s ministry for the dead,
"anointing" and burial, were withheld from those who chose to
take their own lives. Such a position made the providential care
of God a qualified care, only for those who met some specific
criterion of faith. Those who vacillated or chose to end their
lives were outside salvation; they died in their sin, like Judas
of old.
My favorite story regarding suicide and Christian conviction
occurred a few months ago in our chronic illness group at my
church. One member, Sophie, was relating her feelings of the
past month. She had once again experienced a recurrence of the
dreaded disease. Remission had ended and the cancer was active
again in her body. (Sophie suffers from cancer, diabetes, heart
disease, and is handicapped by the removal of one of her legs by
amputation.) This particular month Sophie had experienced
reversals which could only be termed "bad times." She had been
hospitalized a couple of times, received chemotherapy again, and
those treatments were followed with the usual discomfort. If any
one in our group deserved sympathy that evening, Sophie did.
Sophie told her story and we listened quietly and anxiously. As
she neared the end—and Sophie is not given to exaggeration—she
spoke of recurrent thoughts of suicide. She was ready to give up
and give in. These symptoms were uncharacteristic for Sophie.
She was usually euphoric, abounding in energy, always
challenging others, and generally happy. We all admired her
courage and style. Suddenly the strong one among us was near
defeat.
Various responses emerged. None gave much solace, and Sophie
seemed unconsoled. We moved on to the person sitting next to
Sophie, Louise, who has the long-term disease of atypical
trigerminal neuralgia. Louise can’t talk much without pain. She
leaned slowly to Sophie and said, "Sophie, don’t you dare commit
suicide; when God wants you to come home, God will come and get
you. Until then, you keep living and believe that God will take
care of you. " We were all caught a little off guard. Louise’s
words were strong and authoritative. Sophie smiled and we felt
the bond of love between the two women. We all relaxed; the only
word that needed to be said had been said, and said by the one
among us who had authority to say it.
What Louise expressed is at the heart of the Christian faith,
that "in all things God works for the good"; just that simple,
and just that profound. Louise understood something of the power
and love of God, and Louise became the sacramental presence of
God that evening among us. She spoke of God’s love, of God’s
time, of God’s choice and God’s prerogative. She expressed the
Christian hope that we are surrounded by God’s care, and that
fact holds us in faith when that conviction is most threatened.
We can’t let go of life, because we are held and needed until
another time when letting go is God’s will for us. Dying is
God’s call, not ours. And Louise’s saying the words had more
power than any of our saying so, because she lived in that
experience daily. She understood the weakness of the heart and
the strength of faith. And she loved as love is spoken about in
Scripture. She did what was needed that evening for Sophie, for
us and for God. God’s presence was never so evident among us as
when that frail woman leaned toward her sister, touched her arm,
and anointed her with the "oil of gladness," with words which
had power and compassion. Another time Sophie could let go—in
God’s time, but not then, not this time.
The events of that evening remind me of an experience in the
last years of my father’s life, a few months before he died,
just after his century birthday. He was living at the time with
my brother in Tucson. One evening Herb heard Dad speaking. As
Herb neared the bedroom to see if anything was wrong, he saw
that Dad was obviously in that twilight zone one experiences
before the final slumber of death. He was agitated and his voice
was powerful and animated: "Mother, my mother Mary, I see your
candle, do you see mine? Yes, I see your light, do you see mine?
No, I can’t come to your candle, you come to mine." Then a brief
pause and the words poured out. "Dad, my father Conrad, I see
your candle, do you see mine?" No, I can’t come to your candle,
can you come to mine?" Again a brief pause and the final words.
"Bertha [my mother, who had died a few years before], I see you,
can you see me? No, I can’t come to you, can you come to me?"
Herb entered the room and roused my father slightly until he
seemed to waken. Dad almost shouted: "Herb, I am Henry T.
Schmidt, am I not? Am I OK? Is that not who I am?" Herb assured
Dad of his identity, and slowly, gently Dad fell asleep into a
deep and wonderful rest.
My father almost wanted to die, but not just then. His words
were about the economy of God’s time, and that time was not yet
God’s time. So my father lived on past that evening, many
months; his time had not yet come.
Why go on when things are very bad? Because we need to, simply
that. There is something within the character of a person that
calls him or her to courage, to relationship, and to others.
Those convictions hold true even in difficult times. And another
time, in God’s time, one will not go on. One will be called
home, called by the compassion and love of others who have gone
before and bid us come. One weighs the duty. For now our
responsibility to our human community calls us to courage and
faith; another time another community, the communion of saints,
will call us, and bid us into mystery, eternity, heaven or, as
Christians sometimes call it, home, that place where indeed the
heart is.
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