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COPING
WITH CHRONIC ILLNESS
http://www.alpineguild.com/COPING%20WITH%20CHRONIC%20ILLNESS.html
(This is adapted from the book After The Diagnosis by Dr. JoAnn
LeMaistre.)
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JoAnn Le Maistre received her Ph.D. in clinical psychology,
delivered a daughter, and learned she had multiple sclerosis all
within the period of a few months. Dr. LeMaistre has developed a
successful practice counseling patients and their families. She
is a sought-after speaker, lecturer, and teacher. Her books,
After The Diagnosis, and the hardbound edition, Beyond Rage,
have helped thousands of chronic illness patients, their
families, and health care providers to cope effectively. Her
daughter has now graduated from college. And Dr. LeMaistre has
learned to live a full life, in spite of the handicaps of her
MS. She is an inspirational example of what it means to be
able-hearted when you can no longer be able-bodied.
________________________________________
Traditionally, the experience of serious illness has been
approached in two ways: (1) a gloomy perspective of resignation,
self-denial, and helplessness, or (2) a Pollyanna approach that
denies altogether that there has been a real trauma. Both of
these perspectives distort and disguise the reality of chronic
illness.
The first perspective views the chronically ill person as a
failure. This is the patient who does not respond to the
"miracle" of modern medicine, and somehow the lack of recovery
is often perceived as the patient's fault. This attitude of
blame accounts for some of the worst psychological abuses of
patients by health practitioners and caretakers, an attitude
typified by the too-frequently heard statement, "Stop
complaining. You simply must adjust." Unfortunately, the sick
person may also adopt this punishing attitude toward himself or
herself. Sadly, the word "adjust" too often means "resign,"
"settle for less than a desirable existence," and "surrender."
At its worst, "adjust" is just another way of saying "You are
now a nonperson without the right to experience strong passions,
desires, or fierce and unyielding hope." All the anger and blame
inherent in this attitude is misdirected: the patient rather
than the disease becomes the target.
The Pollyanna approach is typified by -- and fueled by --
personal stories or testimonials of complete recovery from
extreme illness or disabling conditions. These stories tug at
the heartstrings and catch the fancy of all who read them.
Besides creating false hope by overplaying the likelihood of
complete recovery, these stories consistently underplay the
sadness and feelings of worthlessness that are part of the
legacy of any physical or emotional trauma.
Sometimes, it is useful in social situations to present yourself
as a Pollyanna. When meeting new people and situations, it may
be an advantage for you to let others think you have mastered
your disease. The anxiety of other people is reduced by not
having to confront illness. The danger is that this Pollyanna
image may create a barrier between you and the people who can
offer real help.
The resignation viewpoint holds little hope; the Pollyanna
viewpoint holds little reality.
The approach I propose took shape as my own understanding
developed. My experience as a patient, observer, and
psychotherapist has allowed me to see the many ways in which
people creatively adapt and use their individual internal powers
of wholeness (the sense of being emotionally intact) to reduce
the destructive effects of severe physical limitations and
accompanying depression, rage, and fear. The wellness approach I
present stresses both the subjective experiences of loss and
your responsibility for looking outward to reestablish quality
in your life.
Central to wellness is the concept of adaptation -- the
flexible, creative use of resources to maximize your choices and
experiences of mastery. This is the key to creating and
sustaining a sense of inner tranquility in the face of difficult
realities. There is no need to deny grim facts of existence or
to pretend to others that all is well when inside there is
little except torment. To be psychologically well while
physically sick involves the belief that your personal worth
transcends physical limitations; you need positive self-esteem
for true adaptation. This belief in your self-worth rarely
emerges until what you have lost and grieved for stands second
in importance to precious moments of inner peace and joy.
Each stage in the progress toward wellness involves loss, grief,
and acknowledgment of internal pain. During difficult times,
emotional pain can engulf your life. All sense of time and
proportion fade. The scope and intensity of the psychological
pain fluctuates day to day. At times, it carries you closer to
invaluable inner resources. At times, like a dangerous undertow,
this pain drags you far from your recognizable self. It may seem
that you have no reason for living or that you are living only
to experience pain. Even so, the reason for living is life. The
incentive for becoming psychologically well is the potential for
the future.
Illness is an emotionally as well as physically depriving
experience. It can do lasting harm by threatening a person's
sense of well-being, competence, and feelings of productivity.
At their worst, emotional reactions to illness may culminate in
the feeling that life is meaningless. I do not share this
belief; but I recognize how stress can make you feel this way.
Illness is a process, and like all processes it has different
stages with different characteristics. We will discuss the
stages below. The stages can occur in varying orders; often they
are repeated. If a sick person lacks emotional support or a
necessary feistiness, the process can stagnate, and one may be
mired in one or another phase of the emotional transitions
taking place. The emotional process begun by illness is a highly
varied and individual one. Not everyone gets bogged down. Not
everyone experiences all the stages discussed in the following
sections. The stages are not part of a once-through program, but
are repeated as symptoms recur or losses come about.
The level of adaptation is an upward spiral in which coping
mechanisms, learned one at a time, can be combined with
strategies learned at other times to make each bout of illness
less emotionally upheaving.
How people react to chronic illness depends on many conditions.
Three deserve note. The first is the severity of the illness.
The very sick must put all their energy into healing and may not
have the luxury of energy left over for emotional growth.
The second is the social support available. If you are willing
to ask for help and you have a wide support network, you'll have
an easier time than if you are isolated.
The third condition is the preillness personality of the person.
If you have always been pretty resilient, you are likely to have
resilience in coping with the illness.
The emotional trauma of chronic physical illness is caused by
loss of a valued level of functioning, such as the ability to
drive or dance, for example. The chronically ill person not only
suffers the loss of immediate competency but is deprived of an
expectable future. No one's future is ever guaranteed, but most
people become accustomed to looking at the odds; if I invest my
energies in a particular direction, I can be reasonably certain
I'll reach a desired goal in that direction. When illness
intervenes, all past efforts may seem irrelevant -- and in fact
they may be.
In the face of such losses, to experience fear, anger,
depression, and anxiety is normal. It would be abnormal to deny
that your health and your life had changed for the worse.
Serious emotional difficulties are more often the lot of people
who do not acknowledge the emotional stress they feel and
thereby bottle up depression or anxiety until these feelings are
so powerful they break through their defenses. By the time an
emotion becomes this powerful, it is much more difficult to
survive its impact without severe scarring.
Is there anything that can help overcome the displacement and
depression caused by physical loss and the loss of goals and
dreams? I think the answer is an unqualified YES!
Goal-oriented striving, any experience of mastery, any outside
acknowledgment of competence, a well-tuned sense of humor, any
experience of joy, and the constant striving toward an inner
state of tranquility are the aids that help overcome the
displacement and depression of chronic physical illness.
These aids are of critical importance in the stages of the
ongoing emotional process. I identify these stages as crisis,
isolation, anger, reconstruction, intermittent depression, and
renewal.
These are good summary categories for the whirl of emotions
triggered by illness and we will take up each stage in turn,
although in the course of an individual illness they may not
always proceed in this order.
CRISIS
In the crisis stage, the patient is seriously ill and very
frightened. Both psychologically and physically he or she has a
decreased ability to respond to others. The sick person's
energies are directed inward toward healing, and controlling
panic. The patient is often too sick to even be frightened.
Events are often confused. Time is distorted. Disorientation is
common. At these times we fall back on our innate biological
ability to heal. The support network, on the other hand, is
feeling a highly stressful increase in anxiety, especially as it
must carry the full responsibility for arranging for medical
care, covering finances, and seeing that children's lives, if
children are involved, can go on with a minimum of disruption.
The family's anxiety can be energizing. The family may feel a
need, sometimes an obligation, to be highly supportive of the
patient.
By and large, everyone responds well in a crisis. Everyone knows
the patient is terribly ill. And they respond. Unfortunately,
those most affected by the patient's illness do not always
receive the support and help they need at this time.
Friends sometimes respond by showering the sick person with
cards, flowers, and get-well-soon wishes. Unfortunately, much of
this is misdirected. The very ill person often cannot appreciate
these signs of concern and affection. Patients often feel
burdened by all the thank-you notes they cannot send. Friends
can often do more by helping the family and other members of the
support network to deal with the medical system, the incoming
phone calls, and to give direct support when it becomes clear
that the idea of "get well soon" has no relevance to chronic
illness.
During the crisis stage almost all of the patient's energy and
attention are focused on responding to the physical onslaught of
the illness. Surviving is the primary concern.
In addition, the patient and the family must cope with the fear
of an unknown and unknowable future. It is all too clear that
the comfortable patterns of the past have been shattered. It is
not clear at all what may lie ahead.
ISOLATION
In time, the acute nature of the illness may abate. But
total recovery does not occur, and the illness persists. There
is a dawning awareness of everyone's part that the situation has
become a chronic one. There will be no full recovery. There is
so much uncertainty about the future that the patient may not be
able to sleep at night and may seem restless and distracted
during the day. The lack of an expectable future constitutes a
major assault on one's self-image.
The patient's anxiety often produces a stiffness or frozenness
in dealings with others and oneself. There is a belief, usually
partially justified, that no one can understand the devastation
of the losses. Isolation most troubles patients who have been
the most independent.
The family has often exhausted itself during the acute crisis
stage. Family members may become aware that they are angry,
fearful, and disgusted about the sick member's situation. Both
patient and family members retreat into themselves and their
thoughts, now haunted by the knowledge that life may never be
the same.
Friends also tend to give out at this point -- the idea of
chronic illness is really terrifying to most people. After an
initial burst of energy, some friends may find it too
overwhelming a personal struggle to continue having contact with
either patient or family. Some patients have been devastated by
an apparent lack of concern shown by people for whom they care.
I say apparent because often failure to contact the patient
means that friends may care but don't know how to act.
This leads to a thorny question. How comfortable are you in
asking for help? What does it mean to you to have to ask for
help?
These questions begin to surface during the isolation stage, but
actually they are part of everyday living for most chronically
ill people. To feel really comfortable allowing others to help
you is an art that must be learned and practiced. It is
difficult to understand that relying on other people when it is
necessary does not indicate weakness or failure. One of the
emotional barriers to asking for help is a strong feeling of
guilt about having a disease that makes one need help. During
the isolation stage, patients look inward and experience many
negative feelings about themselves.
In the isolation stage open communications are vital. Blame must
not play a part. Talking about feelings is very important.
Communication and sharing are ways to break the isolation.
ANGER
The sick person has been suffering severe upset, terror,
anxiety, and helplessness. Add to this the sense of injustice,
unfairness, and senselessness of being struck down by a disease,
and the result may be a rage reaction of tremendous proportions.
Often the target of this rage is the patient himself or herself.
The ultimate, most dangerous, expression of this rage at self is
suicide. The commonly experienced feelings of despair may result
in contemplation of suicide.
There are two reasons why the patient targets himself or herself
for these feelings of anger and despair. First, it is almost
impossible to be furious with fate; there is no external
opponent. In order to provide some meaning for what has
happened, many people irrationally conclude they have bought
disease on themselves by being faulty or wicked in some way. It
is difficult to keep clear that it is the disease that
introduced the disruption into one's life.
Another reason for suicidal thoughts is that illness breeds a
sense of helplessness. The chronic disease cannot be wished
away. The disabilities are there to struggle with every day, and
the threat of a major recurrence or increase in symptoms may be
a constant anxiety tucked away not far from consciousness. With
the feeling that the underlying problem cannot be solved and the
belief that it is the patient's fault, many patients suffer
intense unhappiness. Sadly, the patient's feeling of self-blame
is greatly reinforced by society. Often families are unable to
help because they are angry at the patient. The changes in their
life style are directly attributed to the patient and not to the
patient's illness. Even supposedly neutral medical personnel may
be furious with the patient for having a chronic condition they
cannot cure. This anger directed at the patient from all sides
is psychologically understandable but it is very destructive.
The flirtation with suicide, the patient's worst hazard of the
anger stage, is a statement of the extent of one's rage with
oneself and with those one cares about.
Another serious problem of the anger stage is the strain on the
family. Families who fare better during this stage understand
that the sick person is not the same entity as the disease and
they see that the whole family is in this predicament together
and are committed to coming out of it as well as possible.
Family members need to devise ways to nurture and adequately
support each other in order to cope with both the anxiety and
the practical life changes accompanying chronic illness.
Anger is the stage most hazardous to your emotional well-being.
It is also where most people get trapped. Fear and anger are
disruptive emotions egendered by a sense of loss of control.
Take back control in small steps. The basic reasons for the
anger, in most cases cannot be avoided. It does no good to
assign blame. The response must become task-oriented. "Today I
will walk the length of my room, or call a friend, or answer one
inquiry." Striving toward a goal, even in small doses, is an
antidote to anger. Patients, family, friends, and helpers should
all focus on the strengths that remain, on the accomplishments
that can still be achieved. This basic rule is a key to dealing
with anger.
RECONSTRUCTION
The sick person may now be feeling much stronger physically or
may have had enough time to begin mastering new living skills.
Important decisions or new social contacts may be in the
picture. What is common is a growing sense of safety based on
new competencies. Moods are happier and the difficulties seem a
bit further away. The sick person is learning the possibilities
and limits of the new competencies. Friends are selected on how
well they react to the fact of illness. The family establishes
new routines -- or it dissolves.
What exactly has been reconstructed? Certainly it is not life
like it was before. Instead, it is a reconstruction of the sense
of oneself as a cohesive, intact entity. The reconstruction
takes on many concrete aspects, such as the development of new
skills, but the most important value is emotional. When a
customary pattern of living has been shattered by illness, the
patient fears that he or she is longer recognizable as a whole
being. It is the reemergence of a positive self-image that
constitutes reconstruction.
Often people do well for a few weeks and then are devastated by
some incident. But each experience with trusting and succeeding
is a building block for the next step of reconstruction.
INTERMITTENT DEPRESSION
Now that everything is looking brighter, everyone is tempted to
relax and may, therefore, be caught off guard when a significant
depression recurs. The elation associated with new skills can
give way to new feelings of despair as the patient recalls how
much simpler it was to do routine things the old, preillness
way. Nostalgia and grief may combine to produce sadness and
discouragement.
Many people know exactly when they expect to hit these rough
spots. Medical appointments and anniversaries are notable
examples. Seeing a doctor, who confirms your intuition that your
condition is not improving or is worse, often leads to
depression. So may the third anniversary of having to give up
the car, the first anniversary of a divorce, the time of the
year the physical problems first occurred -- the list is
endless. It may be best to seek counseling during these
difficult times as a way of shortening their duration and
providing new understanding of what all the feelings of loss are
attached to. New understanding brings new resilience; it does
not make the losses go away.
Intermittent depressions seem to combine two feelings. One is
the awareness of loss of function that occurs several times a
day in the course of ordinary living. But clearly, an amputee
does not become depressed each time there is a reminder of the
inability to walk normally. There is a second element involved.
If the awareness of loss arouses a distinct image of what life
would be like if the amputation had not occurred, and if this
fantasy has strong emotional meaning for the person, depression
is very likely. This image of how you would be without the
illness I call the phantom psyche.
The phantom psyche is usually not far from consciousness. It is
the self-punishing mechanism whereby the chronically ill person
continually erodes his or her own self of self-worth and
competence. "If only I didn't have this arthritis [or whatever
illness] I could still be mountain-climbing [or whatever
activity]." "If only" statements are the bread and butter of the
phantom psyche. They contain harsh judgments of worthlessness.
In a happier mood, you might experience the same feeling of
loss, but say to yourself, "I really miss mountain climbing, but
at least I can take a walk today."
When the phantom stalks, the soul is uneasy. Doctors and friends
often mistake the desperate pain of knowing one's hopeful
fantasies will not be realized for self-pity. "Just stop feeling
sorry for yourself" so completely misses the point that it is
tragic. It is very difficult to have a sense of self when you're
depressed and are afraid that you'll never again be of value to
yourself and others.
Self-esteem increases proportionately to successful experiences
of independence and purpose, whether the success is remembering
what time to take a certain medication or walking better after
months of physical therapy. The phantom psyche -- those
unrealistic expectations you have for yourself -- cannot compete
with the heady gratification of hard-won success. If family,
friends, and medical personnel can appreciate the triumph in
being able to struggle, you feel even more triumphant.
Well-wishers too often make the mistake of praising a sick
person for progress without acknowledging how difficult is the
ongoing battle against the inertia of chronic disease.
We all have periods when we feel overmatched and not up to the
struggle. But as long as we pay attention to the struggle, we
will get through the day. We flounder when we set unrealistic
standards, or cannot grieve for what has been lost, or cannot
start each day afresh. Depression can be tackled despite the
physical complications that try to drag us down.
RENEWAL
The losses, and the sadness they cause, never go away entirely.
There is a sense of lingering regret for all the capacities that
have been lost. A person who has mastered the technique of using
a wheelchair can feel very proud of this achievement and know
full well that this device is essential for retaining an active
life. But the person does not have to like it.
It is not necessary to like or to resign yourself to the
compromises you need to make to get on with living. It is only
necessary to acknowledge that changes in life style and skills
have to be made. Acknowledging that your skills are different
from your preillness days is not the same as "adjusting" to
illness. There is no surrender involved, only growth -- the
creation of new options through new means.
The creation of renewal comes from the experiences that teach us
not to waste the present on fearing the future.
The truly handicapped of the world are those who suffer from
emotional limitations that make it impossible to use the
capacities and controls they possess. If you have a chronic
disease, you need not be emotionally handicapped if you
continually strive to be able-hearted. Able-heartedness is
within the grasp of all of us. I don't think of able-heartedness
as a permanent, static state, however. Developing and
maintaining this quality is a process that ebbs and flows,
depending on how helpless you feel. Even if you feel in the grip
of hopelessness, you are behaving in an able-hearted way by any
expression of interest in another. Shared interest and
compassion is what establishes meaning and purpose in life.
When you feel discouraged, you feel all alone -- and there is
some truth to this feeling. But in many important ways you are
not alone. There are hundreds of people in your city who have
similar feelings at times. If disturbing thoughts wake you in
the night, know there are other struggling with their pain. No
one can share your unique experience, but there is kinship and a
strength among all of us who are no longer able-bodied.
There are some positive coping skills that are required by
unavoidable health changes. These are summarized below.
Make Your Expectations Realistic
The most important aspect of making expectations realistic is
the recognition that they are time-limited. "What can I do now
on the basis of the way I feel at this moment?" If you have two
minutes, what are you going to do? I counsel people to check
with themselves to find out what they want to do. Illness can
make you feel that you must surrender all goals, all wishes. But
that is not necessary.
Make your expectations run like this. "Within the limits of my
physical ability I will do whatever it is I want to do for as
long as I can."
Approach Problems Actively
A second essential skill is an active approach to problems. What
is an active approach? It consists of defining the problem and
determining the outcome you want. It involves trying to ensure
that any energy expended constitutes a step toward the solution.
Rarely does it constitute the complete solution. The admission
"I cannot do something" is often the first step in solving a
problem realistically.
Define what you want and then use every ounce of creativity you
possess to determine how you are going to make it happen.
Creativity is not impaired by illness. When you define the
problem you figure out how many facets there are to achieving
some kind of resolution, and then you expect yourself to make
only that part of the effort that is realistic. What this means
is that you need a broader sense of community. There are going
to be a number of things you cannot do alone. Your dreams do not
have to change. How they are realized will probably change. The
creative, flexible use of your energies and creativity to get as
much satisfaction as possible is your mission.
Seek Appropriate Help
The next skill to learn is to ask for appropriate help. It is
not a moral weakness to ask for assistance, but many can
probably recognize the tendency to regard asking for help as
shameful. It is a limitation if one does not know how to
determine whether or not assistance makes sense. It is a
limitation if one is harsh or angry with the helper. Asking for
help can become a more and more graceful skill. It is certainly
not the first choice for people who would rather do everything
themselves, but it should be your choice if you are going to
pursue what you need and want -- when you cannot do it alone.
If you have a hard time asking for help, consider what you would
do if you were fully able-bodied and a friend of yours had your
particular problem to solve. What would you do? Do you see
yourself denying help as you gear others might deny you? Would
you be upset if your friend asked for the specific help that was
required? Chances are you would feel fine about helping out if
you could. You would just do it. Try to be as kind to yourself
as you would be to another when it comes to asking for help.
Handle Your Anger
The next skill involves learning how to become emotionally
efficient and energy conscious. Energy is a tremendous problem
for those with chronic illness. There is none to waste. Some of
the most wasteful expenditures of energy are for resentment and
anger. These emotions are not bad in themselves, but they do
wear you out.
If you are angry, it helps to have some consciousness of what
you are angry about, and whether you want to angry about that.
Sometimes you will want to be angry because that is the
appropriate response. Sometimes you will want to be angry
because it is more efficient to be openly angry than to deal
with bitterness or other forms of calcified anger. The better
you get at being direct about anger early, the more energy you
save and the more efficient you are. Surprisingly, many people
do not know how to recognize their own irritation or anger. If
you are feeling irritated, it might be helpful to be assertive,
even if in the short run you feel uncomfortable.
Participate
Another skill that is especially restorative for those with
illness is to put positive energy back into the world. You can
do this with family, friends, with self-help groups connected
with your illness, or with community groups. Put your talents,
your compassion, your knowledge, and your experience out there
in a way that can benefit others. Be a good friend to yourself
and don't overlook your finer qualities.
If asking for help is a skill you possess, then there is even
more constructive energy available to invest in the world around
you. Obviously, one of the things illness can do is to constrict
your social world. Sometimes, this leads to the perception that
there is nothing you can do for others. That is just flat-out
wrong. If you have exhausted your own resources in looking for
ways to participate, you can call organizations that are
concerned with your illness, like the Arthritis Foundation or
the National Multiple Sclerosis Society, as well as other
national and local self-help and research organizations. They
can offer suggestions, and may have specific ways that you can
help them. People volunteer because it feels good.
Live In The Present
Another skill, that is a challenge to learn, is to look neither
too far backward or too far forward. If you are only looking
backward, you are giving up on yourself emotionally. Your losses
are major issues, but losses do not get people through one day
at a time or one day after another. Losses are not a good reason
for living. If you use all your emotional energy considering how
things were before the illness and comparing it to how things
are now, you are being very self-punishing. If you sense this
going on, you need to be extremely aggressive about rejecting
this.
Illness does not diminish one's humanity. Mobility and physical
comfort decrease with illness. Fear and worry increase. But
illness does not diminish humanity. Be humane to yourself. Avoid
dwelling on how good things were I the past compared to now.
Also avoid distant future fantasies. There is no way to know
what will happen some years hence. And you know, there never has
been a way to know the future. If you are not stuck in the past
or tormented by distant future images of what should be, you
have the opportunity to manage this day with awareness. Living
in the moment with consciousness, patience, compassion, and
appreciation for yourself and others lets you get on in a
creative way, in spite of the pain of your losses.
Cherish The Good Times
The last skill I would commend to you is to pay attention to the
positives. This can only be done if you have already mastered
the skill of living fully in the present moment. You go through
every twenty-four hours with enough of yourself available to the
world that when something positive happens you let it in. There
was a rainbow yesterday. There may have been an interesting
interaction between you and the grocery clerk, or you had a
close, warm exchange with someone you care about. These are the
kind of positive moments I mean.
These are moments that need to be framed and stored to be used
on days that are much harder. If we are in a quagmire of
negative emotion, we can turn anything into proof that there are
only painful things in the world. This final skill is learning
how to hold onto the positives, to cherish them sufficiently
that they do not drop out of your repertory of significant life
events.
Once you notice the positives, how do hold on to them? The best
way is to slow down -- to use relaxation, meditation, and your
own internal capacity for joy to feel that moment inside. Let it
resonate within. This allows your emotional commitment to be
fully focused on the process of life. Be as emotionally
able-hearted as possible, despite physical limitations.
What all these coping skills have in common is that they are
daily necessities. You don't just get them down pat once and
then forget about them. You need to use these skills frequently.
Every day is going to give you something different to try to
manage. You need these well-practiced skills to succeed.
The circumstances you face may at times be miserable. Nothing
can alter this reality. Trust that you will learn from each
stage and from each cycle through the stages. Learn to trust
others enough so that when the situation seems unbearably
stressful, outside counseling and psychotherapy can be sought.
Renewal cannot always be attained without help.
If these ideas have reached you at any level, you have already
begun the process of renewal. You are adapting in the face of
great difficulties. There is no right way to come through the
ravages of unavoidable health changes. But I have tried to show
you ways to remain an active agent in your own life.
You are not alone. None of us is alone. We may not know each
other yet, but there are kindred spirits. A single treasured
personal relationship makes the path bearable.
I wish you a safe and thoughtful journey on what is truly a road
of hope. I travel it with you. You have a companion and you have
hope.
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