The Koan of Illness:

How to Use Illness as a Springboard to Spiritual Transformation

“The path of development is a path of growing up.

The path of meditative development towards
emptiness is a path of waking up.” —Ken Wilber Dr. Lynn Royster Fuentes
THE KOAN OF ILLNESS: HOW TO USE ILLNESS AS A SPRINGBOARD TO SPIRITUAL TRANSFORMATION

Table Of Contents
Introduction 3
Five Stages of Grief 7
Denial 10
Anger 12
Bargaining 14
Depression 16
Grief 17
Acceptance 18
Transcendence 20
Table 22

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THE KOAN OF ILLNESS: HOW TO USE ILLNESS AS A SPRINGBOARD TO SPIRITUAL TRANSFORMATION

D
ue to the fact that most of the people in my life whom I have dearly loved
have had serious chronic illnesses, chronic illness has been a central focus of
my life. As a result, I have been moved to do many things in addition to being
a caregiver, including to create and administer a program for students with chronic
illness at DePaul University and to serve on the boards of organizations that exist to
help people with these conditions.

My latest effort is to create a course series called The Koan of Illness, a term used by
my dear friend, spiritual teacher Francis Bennett. The course is intended to help people
to both manage their illness and to see it as a way to go deeper into the mystery of
existence.

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THE KOAN OF ILLNESS: HOW TO USE ILLNESS AS A SPRINGBOARD TO SPIRITUAL TRANSFORMATION
Francis tells a story of his visits with a
beautiful woman who was dying of a
particularly terrible kind of cancer. Unable
to speak because the cancer had taken away
much of her lower jaw and tongue, she was
bitter and angry. She frequently wrote some
variant of the same question to him, “Why
is God allowing this to happen to me?”
He writes, “… that question was a bit
like one of those formal Zen koans I had
“Why is God worked on with my Zen teachers. The
koan is an enigmatic question that, on a
logical/rational level, really has no answer
allowing this to at all. One sits with the koan until there is
a breakthrough with it. One answers the
question by transcending it as a question.
happen to me?” The answer to a koan is that there is no
answer in any sense that is satisfying to
the rational mind. My Zen teacher used
to say, “You must become the question…
[Mary] was wrestling with her koan as
intensely and passionately as any serious
Zen student could ever hope to.”
We all face the deep existential questions
of life, but many of us are adept at
dodging them. People with chronic illness
cannot do that so easily. That fact may
produce a lot of suffering, or, as Mary’s
story shows, it can be seen as a route
to spiritual growth. People who have
been visited with this kind of painful
experience can use it to see their own
koan clearly and to solve it in a deeply
transformative way.
After several visits, Francis took a chance
and said, “Mary, the only way I know
of to get beyond the kind of pain you
are experiencing right now, is the way of
absolute surrender.”
And that is what she did. “Mary …
seemed to be a different person. All
the bitterness disappeared and an
unconditional joy appeared in its place.
… There was a presence of peace and
joy that surrounded Mary from that day
forward that was palpable. … She was
transfigured, radiating a living light and
peace and serenity.”
How did Mary come to let go and
transform on that particular day? Perhaps
it was grace. But perhaps it was due to the
deep wrestling she had already done with
her koan. I expect it was. Francis called
her his “Zen master.” It takes a master to
wrestle with such a foe.
Dr. Lynn Royster Fuentes | 4
As I wrote in a poem about my own son’s suffering from ME/CFS

“Is there justice somewhere in your Against this dark cloud

agony?
If so, it must play out on a much
vaster scale
Than my heart can encompass.
This is not a child’s game you are
engaged in.
(Some mistake must have been made.) Asking no handicap for age or
Your opponent should long ago have
been called for cheating.
Had there been a rule against it.
Had there been a referee.
There are no trophies given out for How you faced the fully armored foe
your kind of courage,
No reporter has been present
To record your days and nights of
effort
You are nameless, faceless to the
world.
But I want someone to know
How many times you have overcome a
beating,
Stumbled on, soul-wounded,
inexperience,
Giving your all to a game you never
asked to play.
I want someone to know
With nothing but your hands to shield
yourself,
And no replacements in the wings.
Even David had a slingshot.”
THE KOAN OF ILLNESS: HOW TO USE ILLNESS AS A SPRINGBOARD TO SPIRITUAL TRANSFORMATION

People with chronic illness have a unique opportunity to get past the traps of ego and dive
deeper into the reality beneath them. Unlike the dying person, they do not need to solve
their koan immediately - their illness is chronic, so they will have many opportunities
to go deeper and deeper. At the same time, the sooner they engage with it and gain
understanding, the better the life they have will be.

The koan is also somewhat different. Terminal illness is about living with an understanding
that your life will end shortly. With chronic illness, the question is more about, “How can I
find a way to live with this?” Chronic illness carries its own species of pain simply because of
its endlessness. As people have said about ME/CFS, “You don’t die but you wish you had.”

Regardless of how many days or years one will live with whatever tragedy has befallen them,
along the way, many people with illness have shown us that it is possible to grow into greater
peace and joy. Whether it comes with the suddenness that Mary achieved, or whether
gradually one grows into a deeper knowing of reality, investigating this central event, this
tragedy, can bring us closer to what is really important – not personal attractiveness, not
business success, not any of the conventional recipes for happiness in life, but to the most
profound sources of happiness: peace, goodwill, forgiveness, kindness, and love.

People who struggle daily with chronic illness are not heralded in this life, but I see them
as unsung heroes. I joke to my son that people in heaven will give him a ticker tape parade
when he arrives in heaven to celebrate all the battles he has fought. But dealing with chronic
illness is no joke.

Dr. Lynn Royster Fuentes | 6

Five stages of grief

E
lisabeth Kubler-Ross writes of the five stages of grief ex-
perienced by terminally ill patients prior to death: denial,
anger, bargaining, depression, acceptance. Those stages ex-
ist for people with non-fatal illnesses as well. They are just spread
out over a longer period of time. And not only do people with
illness have to go through these stages, but so do those who love
them. My own experience has been as a caregiver, so I write both
for people who are ill and for caregivers. As a daughter, wife, and
particularly as a mother, I have had to work through my own pain
in the face of long term major illnesses of those I loved the most.
I have learned enough in that role to know that you can’t give
advice to someone in whose shoes you have not walked, so what I
offer here should be understood as ideas only and not a prescrip-
tion for people whose situations I do not know.

Each of these steps in the adaptation to trauma contains many as-

pects each of which can create an entire extra burden of suffering
on top of illness. However, each of them also contains the seeds
for deep and transformative growth and change. Each one can be
mined for the treasures it offers.

I want to note that progress through these stages is not usually

completely linear – people can move back and forth among these
steps as a new issue arises or as they revisit a pattern at a deeper
level, but the overall pattern is of evolutionary growth. People do
THE KOAN OF ILLNESS: HOW TO USE ILLNESS AS A SPRINGBOARD TO SPIRITUAL TRANSFORMATION
come to acceptance, and even, as we saw
with Mary, to transcendence.
Before diving into each of the steps, I
want to note that I am completely at odds
with the view that people who are ill have
somehow fallen behind in the race to per-
sonal and spiritual excellence or else they
wouldn’t have an illness. It is a cruel atti-
tude, unfortunately prevalent in our society,
which uses psychology and spirituality as a
club against its most suffering members. “If
you would just deal with your anger against
your father, if you would meditate more, if
you hadn’t gotten so stressed over your son’s
leaving home - or whatever - you would
not be sick.”
Whatever validity there is to the phrase “you
create your own reality,” most of the time
when someone is suffering, it is not because
they have somehow not handled life correct-
ly. Illness is a physical fact: it makes people
tired, it causes them to feel pain, it prevents
them from moving in the same way that
others can. It can produce chemical changes
in the body that result in depression and
neuronal pathways that lead to panic attacks.
In addition, treatments often create an addi-
tional assault on the body.
“If you would just deal with
your anger against your
father, if you would meditate
more, if you hadn’t gotten so
stressed over your son’s leaving
home - or whatever - you
would not be sick.”
Even if ill people do have various psychologi-
cal and spiritual ills, they are just like the rest
of the population which holds incorrect inter-
pretations or attitudes that are not conscious,
and, even if they are conscious of them, can-
not eliminate them easily, despite their inten-
tions. Why single out one group and attack
their inabilities in this regard? And regardless
of the purity of one’s psychological or spiritual
self, suffering in the sense of pain remains.
Who has not seen a dog or cat suffer when
it is in pain or has lost a mate? It is doubtful
from what we know of animal psychology
that it is assigning interpretations or failing to
change its attitude when it could. And almost
always, those who blithely admonish others
to change psychologically or spiritually have
never experienced the depth of suffering that
their targets are experiencing.
The kind of spiritual attainment that is
necessary to totally remove suffering from
our lives is not one that most people achieve,
if it is even possible. The most spiritually
advanced people I know, including Ken Wil-
ber and Adyashanti, both suffer from severe
physical illnesses.
So perhaps the truth is the opposite – people
who take on a major illness have decided to
wash clean a large part of karma. But since
I’m also opposed to the concept of the “he-
roic disabled” (the idea that because some
people who are ill do amazing things, all ill
people are supposed to do that, too, and, if
they don’t, they can be made to feel guilty
with the comparison), that explanation
could be equally false.
However, the fact that one has not created
illness by some psychological or spiritual
“fault” does not mean that illness cannot be
used to propel psychological and spiritual
change that can be beneficial. All our difficult
life situations – “disorienting dilemmas” – are
diamond mines if we use them that way.
Dr. Lynn Royster Fuentes | 8
The Guest House
This being human is a guest house. He may be clearing you out
Every morning a new arrival. for some new delight.

A joy, a depression, a meanness, The dark thought, the shame,

some momentary awareness the malice,
comes meet them at the door laughing,
As an unexpected visitor. and invite them in.

Welcome and entertain them all! Be grateful for whoever comes,

Even if they’re a crowd of sorrows, because each has been sent
who violently sweep your house as a guide from beyond.
empty of its furniture,
still treat each guest honorably. Rumi
 THE KOAN OF ILLNESS: HOW TO USE ILLNESS AS A SPRINGBOARD TO SPIRITUAL TRANSFORMATION

Denial

T
he first reaction to illness is often denial. The person does not
want to be ill. The caregiver does not want the person he/she
loves to be ill. The person and those around them are now in
the midst of a new trauma. Just as with any trauma, the first response is
often to try to push it away. It can’t be happening. It isn’t happening. It
will go away tomorrow. It isn’t really as bad as they say. And so on.

It takes time to adjust to new life circumstances, especially unpleasant ones

like losing a job, having a loved one die, or getting divorced. While ultimately
it is important to accept what is so that we can have the most able response to
it, often we need to numb ourselves at first just to cope. There are many ways
we do this, some more healthy than others. Some approaches include outright
refusal to accept the situation. Continuing to work at a frenetic pace, pushing
oneself beyond one’s capacity, is one common response. Refusing medical
treatment, brushing off offers of help, refusing to talk about it is another.
When denial becomes chronic, it can turn into an additional source of illness
itself as the body, which needs all its resources to improve, is driven beyond its
capacity, and the mind, which should be examining the situation and making
decisions, is not allowed to pursue its role.

Denial can take other forms: one can put bandaids over the wound - if I
just take this pill I’ll be fine; I don’t need to change my diet. One can over
intellectualize as a way of distancing from the actual problem. One way I
dealt with my son’s illness was to research it excessively, determined to find
an answer when no one else had could. I ended up knowing a lot of things
and having plenty of ammunition with which to fight the doctors (who
were also getting in the way of my denial), but not much knowledge about

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THE KOAN OF ILLNESS: HOW TO USE ILLNESS AS A SPRINGBOARD TO SPIRITUAL TRANSFORMATION

how to make him more comfortable. Family present in the midst of pain and suffering. Often facing denial is something you need
members engage in denial as well: “It’s all in to do with someone else - a caring friend
your head.” “There, there, you’ll be better So, what can you do? Ask yourself if de- or family member, a therapist, a spiritual
soon.” All of these comments and attitudes nial is an aspect of your life. Most often, advisor. Remember that denial can be
keep people from recognizing their own suf- whether sick or healthy, it is. Most often, protective and if that protection is re-
fering but only adds even if most of you has moved, additional support may be needed.
to the suffering of the moved on, there some
ill person.
“Acceptance of one’s life part of you that is still Look, too, at practices for creating
has nothing to do with clinging to the belief presence in your life. Change is not
Denial can contin- that it just isn’t so. only about ridding ourselves of unnec-
ue for years in one
resignation; it does not mean What are you denying? essary baggage; it is also about bring-
way or another. But, running away from the What is so painful that ing on board a delight in being. Take
while it can be a struggle. On the contrary, you don’t want to face time to notice what is around you – a
short-term tool, in it? If you are healthy, spider, the sky, the wind in the trees.
the long term it gets it means accepting it as it you can just push it Learn to meditate. Find pleasurable
in the way of finding comes, with all the handicaps aside again and go out experiences like listening to music
ways to ameliorate and play tennis or en- where you can be completely present
the situation. And it of heredity, of suffering, of gage in a social activity, without pain.
gets in the way of our psychological complexes and but if you are ill, those
psychological and avenues are cut off. Take a moment now and consider what
spiritual growth. One injustices.” That can actually be a beliefs or assumptions might need to be
of the central qual- gift. revisited. Be specific. Vagueness is the ene-
ities of awakening my of change. Perhaps you want to be able
is presence. If we are not present to our Paul Tournier says, “Acceptance of one’s to see your work situation more clearly.
lives, we are not awake. Learning to live a life has nothing to do with resignation; Perhaps you want to be able to examine
conscious life is not easy under the best of it does not mean running away from the your resistance to rest.
times. If that consciousness involves phys- struggle. On the contrary, it means accept-
ical or emotional pain, it is even more dif- ing it as it comes, with all the handicaps Think about who might help you with it.
ficult. But that is the koan that the unsung of heredity, of suffering, of psychological Use the worksheet at the end of this paper
heroes with illness are given: how to be complexes and injustices.” to get clarity.

Dr. Lynn Royster Fuentes | 11

THE KOAN OF ILLNESS: HOW TO USE ILLNESS AS A SPRINGBOARD TO SPIRITUAL TRANSFORMATION
Anger
A
nger shows up once we are forced
to face what we don’t like. Pat
Fennell refers to a stage of crisis in
which we come to know that something is
seriously wrong. Facing that fact is diffi-
cult and we may rail against it. Anger is
a healthy emotion when it is used to get
clarity on what it is we don’t want to have
in our lives. It helps us to understand what
we want to change. However, continued
anger without action can be corrosive, as
many writers on the subject have point-
ed out. Anger can be at the illness itself
and at the people who aren’t helping and
should (doctors, family members) and at
the people who are actually adding to the
suffering (deniers, others who are angry
themselves, employers who expect too
much, and so on).
While anger is useful as a first step – “This is
what I don’t like!” – it can become a problem
in its own right, driving away people who
might help or deflecting blame onto people
and sources that had no intention to harm.
Anger is often turned inward. Now the poor
self who is already ill is subject to constant
Dr. Lynn Royster Fuentes | 12
THE KOAN OF ILLNESS: HOW TO USE ILLNESS AS A SPRINGBOARD TO SPIRITUAL TRANSFORMATION

berating from the very self who ought to be lowing it to help you clarify? Is it leading boundaries.” It was said of a guru, I can’t recall
caring for it. A societal practice of “blame the you to have conversations with people in who, and it has become my watchword. Even
victim” is another way to negate the person’s which you assert your needs? If not, are on a good day, I can’t get close to it, but it’s
suffering or express suppressed anger. you pushing it into your shadow? Are you certainly a guideline for me.
projecting it out against other people?
While there is no space here to go into Shadow work and the taking back of pro- So, look at what is going on in you with
a deep discussion of anger management, jections (in which you reown your anger) regard to anger and boundaries and for-
a subject about which many great books is necessary to achieve lasting and balanced giveness. Find some specific areas you
have been written and many workshops spiritual growth. might want to focus on – a particular hurt,
created, it is worth taking the time to a person you are having trouble with, a so-
examine it now as a way of deciding what What about forgiveness? The truth is that cietal message that upsets you. Write some
resources you might want to investigate. A many people have hurt you. Most peo- thoughts in the table.
book that helped me a lot was the classic ple, especially those who are not in your
When Anger Hurts: Quieting the Storm situation, don’t understand you. Can you Look, too, at spiritual practices that can
Within by Mathew McKay, Peter Rogers, forgive them for their overt actions and help you to manage anger, set boundar-
and Judith McKay. There are many more their insensitivity? If not, are you willing ies, and offer forgiveness. There are many
options – even a video game! to look at the possibility of doing that? books on the subject that have a spiritual
Can you accept that their behavior and focus; forgiveness is the central message
So, start by asking yourself some ques- attitudes are mainly about them and not of the Course in Miracles, for example.
tions. First, are you angry? Even the most you? Remember that forgiveness is not the Meditation is a practice that not only
peaceful of people tend to harbor anger same thing as condoning the behavior. It is brings one closer to the Self but also helps
somewhere. It may not be against a per- possible to be completely aware that some- one to objectify painful circumstances.
son. It may be against a system that doesn’t one has behaved unacceptably and still let When you “have anger” instead of feeling
make a place for people with chronic go of the constant rumination about it. like you “are” anger, your life will not be
illness. It may be against your own body This is about your peace, not about some- dominated by it. Prayer can help you to
which seems to have betrayed you. See if one else’s. turn over resentments and to ask for help
you can identify any sources of anger. in forgiving.
Are you setting boundaries so that new sourc-
Next, ask yourself if you are dealing with es of anger will be less likely to arise? I love Love is the other side of the coin from
this anger in a useful way. Are you al- the phrase, “infinite compassion and ironclad anger. In fact, anger shows us what we

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THE KOAN OF ILLNESS: HOW TO USE ILLNESS AS A SPRINGBOARD TO SPIRITUAL TRANSFORMATION

love; the energy of anger gives us the impetus to act on it. When
we see a child or animal hurt, anger arises, but what that tells us
is that we are feeling love for that child and that animal. Focus-
ing on the love instead of the anger can take us closer to who we
really are. So, add some thoughts about how your anger tells you
what you love. How can you spend more time either internally
or externally with what you love? How can you put the energy of
anger to work in positive way?
1
Pat Fennell is a chronic illness consultant who has developed a very helpful model for adaptation to illness called
the Fennell Four-Phase Treatment (FFPT)™ model for understanding and treating chronic conditions. http://www.
albanyhealthmanagement.com/about_patricia_fennell.shtml

2
http://harvardmagazine.com/2011/01/gaming-the-emotions

Bargaining:

T
he next stage of grief is bargaining, trying to make deals
with life or God so that you can improve your situation.
While this process, too, is necessary and normal, it can
create its own set of problems. Pat Fennell talks of a stage of
adaptation called “stabilization.” Once it is accepted that illness is
here, trying to get control of it becomes a necessary focus.

Making plans, finding areas to improve, getting a full picture of

your situation is important at every stage of illness. Managing your
illness is essential, but it can also lead to a craving for controlling
those things that we cannot control. Illness is a wily adversary. It can
defeat all our efforts to restrain it, reduce it, eliminate it. It can flare
up at the worst moments, it can continue unabated when we feel
we can’t bear it any longer, it can bring us to the edges of life and
death in ways that nothing else can. This is when people try to make

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THE KOAN OF ILLNESS: HOW TO USE ILLNESS AS A SPRINGBOARD TO SPIRITUAL TRANSFORMATION
bargains. If I get well, I’ll devote myself to
saving other people. If I can just get through
work today, I’ll take some time off. If I
could just have a few hours to feel better, I’ll
put up with it for the rest of the day.
But illness isn’t subject to negotiation.
The lessons here are about the limits of our
control. They are about learning that life is
not necessarily fair. A spiritual truth is that we
are not in charge, and, if anyone or anything
is, it is not something that will sit down at the
bargaining table with us. Whatever the inten-
tions of the universe are, our personal wishes
cannot cause it to reverse course.
Whether or not we accept that illness and
how it proceeds is not ours to control, we
can shift the way we look at it. We can
change our perception and thus develop
our capacity for love and wisdom.
As Rumi says,
“If you can’t do this work yourself, don’t worry.
You don’t even have to make a decision one
way or another. The Friend, who knows a lot
more than you do, will bring difficulties, and
grief, and sickness, as medicine, as happiness . .
.” (Barks, 177)
“If you can’t do this work
yourself, don’t worry. You
don’t even have to make a
decision one way or another.
The Friend, who knows a
lot more than you do, will
bring difficulties, and grief,
and sickness, as medicine, as
happiness . . .” (Barks, 177)
The truth is, we don’t know whether illness change? If it does not happen, what can you
is a curse or a blessing, but accepting the
fact that we don’t know can take us off the
hamster wheel of constantly looking for
a way to alter the course of the universe
and allow us to start looking for ways to
harmonize with it.
And, paradoxically, the more we can move
into flow with the universe, the more
everything is smoother, better, more blissful, Use the table at the end to record your
more bearable. Illness may not stop, pain
may not cease, but as Ken Wilber says, “It
hurts more, but bothers you less.” The video take to absorb these truths.
noted below looks at this issue from a more
global perspective. His book, Grace and Grit,
is a more personal account and describes the
story of his wife’s struggle and eventual death
with breast cancer (discovered only days after
they were married) at the same time he was
struggling with his own illness. Adyashanti,
who also has a serious illness, comments,
“Realization is the medicine given to the
disease of suffering -- and it’s the only
medicine there is.”
So, ask yourself about your urge to control.
What kinds of bargaining do you find
yourself doing? What is unacceptable to
you that you think a greater power should
do yourself to adapt to the situation?
And on the other side, what practices can
help you to see with spiritual eyes? Can
you come to believe that your illness has
a reason for being even if you don’t know
what it is? Can you realize that your human
self is limited but your absolute self is not?
thoughts about bargaining and the urge to
control and about some ways you might
Dr. Lynn Royster Fuentes | 15
THE KOAN OF ILLNESS: HOW TO USE ILLNESS AS A SPRINGBOARD TO SPIRITUAL TRANSFORMATION
Depression:
C
oming to the realization that illness
cannot be bargained with seems al-
most automatically to lead to depres-
sion. If we really understand that we are not
in control, then what? There seems to be no
way out. Are we to live in despair forever?
It’s important to note that depression is
also a physical illness of its own, not only a
situational one (though certainly living with
a chronic illness provides many situational
reasons for it to arise). There is considerable
evidence that it is related to parasites, bacte-
ria, or viruses. It’s also clear from the inte-
gral map used in the course that all illnesses
have external and internal correlates.
But regardless of whether it is biologically
or psychologically caused (and that is an-
other avenue to investigate) illness leads to
the asking of existential questions: What
is the meaning of life? How can it be that
innocent people can suffer? How much
can one bear? Is there a light at the end of
the tunnel? Facing these questions is an-
other step in developing spiritual maturity.
They are koans of their own, questions to
conventional answer that God rewards vir-
tue and punishes sin is rejected here. The
only answer offered is the inaccessibility of
the wisdom of God.
Not knowing why good people suffer is a
hard pill to swallow. I have no suggestions
except to go deeper into the paradox, to
just ask the questions and wait, sometimes
a long time, for the answers to come. Relax,
be still, be attentive, and ask yourself, “Who
be held close to the heart, questions whose am I?” Perhaps you will find that you are
answers may appear in surprising ways. more than your depression, more than your
illness, more than your limited self.
As Helen Keller commented, “Character
cannot be developed in ease and quiet. Allow yourself to have the questions with-
Only through experience of trial and suffer- out answers. Ask yourself what your deepest
ing can the soul be strengthened, ambition questions are. Meditate on them or pray
inspired, and success achieved.” Perhaps the about them. Read spiritual literature. Wrestle
suffering of depression can be looked at as a with your koan. Ultimately the answers for
door to deeper understanding. Many writ- these deep questions will come from beyond
ers, artists, and musicians have struggled the mind, as they apparently did for Mary, so
with this condition and the results of their cultivate your own depths and let wisdom in
art have illuminated our lives. from beyond your own thinking.
Questions about guilt also arise with this You might keep a journal about how you
step. Maybe I’m not innocent. Maybe I see these questions. It can be heartening to
caused it. What did I do to deserve this? see your own wisdom increase.
What am I doing wrong now? The story of
Job catches this impossible dilemma. The 3 https://www.youtube.com/watch?v=5TUr949kmZk
Dr. Lynn Royster Fuentes | 16
THE KOAN OF ILLNESS: HOW TO USE ILLNESS AS A SPRINGBOARD TO SPIRITUAL TRANSFORMATION

Grief Naomi Shihab Nye in her poem Kindness

says,
There is a beautiful slow-moving French
film called Seraphine. In it an art dealer
discovers a cleaning woman with mental

W
hat happens is that at some “Before you know kindness as the deepest illness who makes great art. He helps her
point in the depressive stage, thing inside, to sell it. War intervenes, and he has to
what Abraham Maslow calls our you must know sorrow as the other deep- leave the country. By the time he returns,
“real” sadness begins to surface, the sadness est thing. the illness has com-
that has been with us all along but hidden You must wake up
under our frantic search to control reality by with sorrow.
“Before you know kindness as pletely overtaken her.
In his grief and guilt
denying it, blaming it, negotiating it away, You must speak to it the deepest thing inside, you and pain, he comes
numbing out, and feeling guilty and respon- till your voice to see that his only
sible. catches the thread of must know sorrow as the other option is to make her
all sorrows deepest thing. You must wake more comfortable.
Adyashanti says that under anger is sor- and you see the size Sometimes that is all
row, and under sorrow is love. When we of the cloth.” up with sorrow. You must speak we can do, and it is
more fully allow ourselves to experience
sorrow, we more fully experience love. “My religion is
to it till your voice catches the enough.

Coming up against the reality of our kindness,” says the thread of all sorrows and you see Rumi says, “Whoever
efforts to bypass our sorrow bypassing Dalai Lama. finds love beneath
makes us realize that we have abandoned the size of the cloth.” hurt and grief disap-
ourselves and we have abandoned oth- Our hearts need to pears into emptiness
ers. As a caregiver, I have come to realize break so that we can truly care for our- with a thousand new disguises.” That is the
that all my denying, fixing, psychologiz- selves and for others. Then, life becomes spiritual challenge here. So whatever we
ing, and so on had left my son, in some about relieving suffering – our own and can do to allow our “real” sadness to sur-
deep ways, to face his illness alone. It other people’s. I emphasize “our own” face can help us to understand this koan of
has been, and still is, the most difficult because we are just as deserving as oth- illness more deeply.
step for me. Grief makes us vulnerable ers. Focusing on helping others can be
– there is no escape from pain – even yet another bypass. We need self-love and Again, journaling, being with wise and
at the same time it brings us more fully self-acceptance first. As they say, charity spiritual people (either in person or in
into love. begins at home. literature), and finding ways let your heart

Dr. Lynn Royster Fuentes | 17

THE KOAN OF ILLNESS: HOW TO USE ILLNESS AS A SPRINGBOARD TO SPIRITUAL TRANSFORMATION

be broken open can help us through this

stage. You might want to make some notes
about what you might do to experience your
grief in a way that brings growth and kind-
ness to you and others.
4
Maslow speaks of “a development of personality which frees the person from
the deficiency problems of youth, and from the neurotic (or infantile, or fantasy,
or unnecessary, or “unreal”) problems of life, so that he is able to face, endure
and grapple with the “real” problems of life . . . e.g., real guilt, real sadness, real
loneliness, healthy selfishness, courage, responsibility, responsibility for others,
etc.” Toward a Psychology of Being, p. 109.

Acceptance

A
cceptance is similar to Pat Fennell’s
stage of resolution and integration.
It is when we come to terms with
our life as it is. At this stage, we have let go
of the various kinds of bypassing and forgive
ourselves and others - and even fate - and
accept whatever circumstances we are in. It
is an enormous step.

A woman who gave birth to a child with dis-

abilities put it this way, “When I was going to
have a child, I had all kinds of imaginings about
what it would be to be a mother. It was kind of
like knowing you were going on a trip to Italy
and planning trips to Pisa and Rome and think-
ing about the cuisine and the art. But when my
child was born with disabilities, I had to change
my plans. I was going to Greenland instead.”

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THE KOAN OF ILLNESS: HOW TO USE ILLNESS AS A SPRINGBOARD TO SPIRITUAL TRANSFORMATION
In some ways, illness is just another coun-
try. It may not be the one you had wanted
to go to, but it is no less real or import-
ant. There are too many messages in our
culture that send us to only one country
– that of the healthy – and we need to wel-
come diversity, including the country of
the sick, into our geography.
Says Kubler-Ross, “The most beautiful
people we have known are those who have
known defeat, known suffering, known
struggle, known loss, and have found their
way out of those depths.”
One of the hardest things for people with
chronic illness seems to be to appreciate
their own value. Instead of seeing illness as
making us “less than” what we are sup-
posed to be, perhaps we can reframe that
picture to see our lives as exactly what
they are supposed to be? Each person has
a life path, for what reason we don’t fully
know, but each path is as valuable as any
other. What kind of a culture celebrates a
person who “succeeds” in amassing wealth
or power and uses it to harm others over
an unknown person with a limiting illness
who lives a life of integrity and decency?
Why should we, who know better, go
along with that view?
So, ask yourself where you are in terms of
accepting your situation or that of the ill
person(s) in your life. If you have not yet
accepted it or not yet accepted yourself,
then accept that. It is a lifelong process,
and no one has it perfectly. Note areas
where you have the greatest difficulty with
acceptance. Consider what you might do
to find greater self-love, greater apprecia-
tion of your own specific life, and greater
willingness to take pride in it. And espe-
cially, congratulate yourself for those areas
of your life where you have created reso-
lution and integration, where things are
running more smoothly, areas where you
are happy with the way things are.
Take time to be with what is. Nature is a
great teacher in this regard. Enjoy the pres-
ent moment, the beauty and interest that
is always there for us whether we are doing
well or not. Read or watch the works of
other people who live lives like your own.
Some suggestions that come to mind are
Laurie Edwards (In the Kingdom of the
Sick), Toni Bernhardt (How to Live Well
with Chronic Pain and Illness), Katrina
Berne (Running on Empty), Elisabeth Tova
Bailey (The Sound of a Wild Snail Eating),
“When I was going to have
a child, I had all kinds of
imaginings about what it
would be to be a mother. It
was kind of like knowing
you were going on a trip to
Italy and planning trips to
Pisa and Rome and thinking
about the cuisine and the
art. But when my child was
born with disabilities, I had
to change my plans. I was
going to Greenland instead.”
and movies, The Theory of Everything, My
Left Foot. There are many more.
Share what you have learned about denial,
anger, bargaining, grief, and acceptance with
others. Your experience is valuable and oth-
ers, ill or healthy, will benefit from it.
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THE KOAN OF ILLNESS: HOW TO USE ILLNESS AS A SPRINGBOARD TO SPIRITUAL TRANSFORMATION

Transcendence

A
ll the practices mentioned above:
being present, examining disorienting
dilemmas, setting boundaries, forgiv-
ing, allowing your heart to break, living with
“don’t know,” and asking, “Who am I?” bring
us to a place where we are ready to go beyond
what we are sure about in life and open to
more transcendent dimensions. This requires
another practice, perhaps the most profound
of all: letting go. Lao Tsu said that we must be
able to let go of what we are to become what
we might be. Adyashanti describes true medi- meditation, in great art, in the grace of to shine a light on some of the deepest
tation as “wordless surrender.” spirit. I have found it in self-honesty, and questions of humankind. Their very being
in my relations with others who so often forces others to look at questions of lack
Anthony de Mello calls it “deprogram- hold up a mirror to me. of control and vulnerability. The fact that
ming.” “You cannot change by an effort of their lives are so different from the main-
the will; you cannot change through ideas; In the meantime, we can reflect on the stream offers us all a chance to look at what
you cannot change through building up unique importance of a life lived amidst we value.
new habits. Your behavior may change, but suffering.
you don’t. You only change through aware- Each individual person with an illness
ness and understanding.” Changing your “People,” says Kubler Ross “are like has something to teach themselves and to
conditioning is not easy, but being open stained-glass windows. They sparkle and teach us. Each ill person has been given
to it will allow you to develop the kind of shine when the sun is out, but when the the responsibility of discovering what they
awareness and understanding you need. darkness sets in, their true beauty is re- have to teach by learning to solve their
vealed only if there is a light from with- own koan. The importance of this work is
I can’t offer any advice about how to do in.” People with chronic illness and those reflected in this verse from Sri Aurobindo’s
this fully, but I have found answers in who love them have a unique opportunity poem, Savitre:

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“If thou wouldst save the toiling universe,
The vast universal suffering feel as thine:
Thou must bear the sorrow that thou claimst to heal
The day bringer must walk in darkest night.
He who would save the world must share its pain.
If he knows not grief, how shall he find grief ’s cure?
If far he walks above mortality’s head, how shall the
mortal reach that too high path? If one of theirs they see
scale heaven’s peaks, men then can hope to learn that
titan climb. God must be born on earth a man that man
being human may grow even as God.”
THE KOAN OF ILLNESS: HOW TO USE ILLNESS AS A SPRINGBOARD TO SPIRITUAL TRANSFORMATION

Stage of grief What area I want to focus on Who and what can help me

Denial

Anger

Bargaining

Grief

Acceptance

Transcendence

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