Finding Balance:
The
Art of Getting Well
David Spero, BSN, RN
In old
Japan, a priest was winning many followers by performing spectacular miracles.
One of these followers was walking with a Zen monk along a river. “Our master,” said the disciple, “can stand
on one side of the river, and write the name of the lord in letters of fire on
the other side.”
“My
miracle,” said the Zen guy, “is that when I’m thirsty, I drink, and when I’m
tired, I rest.” The Gateless Gate
The
great saxophonist John Coltrane went through a period where he played jazz that
was completely free form. He produced amazing noises that appeared to come
directly from his soul, unmediated by any rhythmic or melodic structures the
audience could discern. A few fans adored this music, so much so that some of
them started a “Church of Coltrane.” Most, however, left this music alone; it
was just too hard to understand.
When
Coltrane played with trumpeter Miles Davis’ group, however, the great saxman
had to blend with the rhythms, melodies and harmonies of other brilliant
musicians. He strained against the limits imposed by Davis’ music, but the
creative tension of working within those limits inspired some of the best jazz
ever recorded, music that has moved millions of listeners. This kind of story
happens repeatedly in the arts, usually in a scenario where a star leaves a successful
group, for a solo career which bombs. It turns out he or she needed the
limiting force of the group to create successfully. Limits bring out our creativity; without them, we tend to wander
around dabbling in different things, accomplishing little that has meaning to
others.
One of
illness’ little tricks is the way it shows us our limits. We always had them, of course, but most of
us preferred to ignore them, choosing to live as if we were not only immortal,
but also possessed of super powers. That unrealistic attitude dissipates our
creative energy. “Should I do this, or that, or this
other thing? I want to do X, but
I’ll do something else, what difference does it make, I have the rest of my
life, which is forever.”
We
don’t have forever though, and illness shows us that with symptoms,
disabilities, and scary predictions of the future. It requires us, in the face
of irrefutable evidence of our mortality, to change, adapt, grow, and create.
Bob Lawrence tells how twelve years of living with AIDS have affected him:
Being
confronted with my own mortality...I learned about living with the end in
sight. Knowing that I have a finite
amount of time here and the power that comes from realizing you’re not
immortal. “I’m living with a limited
amount of time. I don’t have forever to
do the things I want to do, so I better do them now.” That’s the best thing I’ve learned.
As we
will see, Bob, like others who deal successfully with illness, responded
creatively to the challenges of his condition. We all have the potential to
respond in this way.
The wide tightrope
If getting well is an art form, balance is the part the
audience sees. The concept of balanced living is nothing new. It goes back to the Bible (“to everything,
there is a season”), the wisdom of Lao Tzu in China, and the writings of Roman
physician Galen. The serenity prayer:
“Grant me the courage to change the things I can change, the serenity to accept
what I cannot change, and the wisdom to know the difference,” is a prayer for
balance.
As children, we were told about balanced eating along with
developing physical balance. But living in peace involves a deeper sense of
equilibrium. We must find the balance between our own needs and those of
others, between living for the moment and for the (uncertain) future, between
dependence and independence, and between acceptance, grief, anger, and
constructive denial.
I think of getting well or living well with illness in terms
of the Japanese tea ceremony. The ritual of making tea is of focused
concentration on the apparently simple task of making and serving tea. Moving
slowly, fully experiencing each step, the practitioner of tea ceremony turns
the process of tea into a meditation on grace and beauty. If we move at our own
speed and find our balance, our lives can take on some of this measured beauty
as well.
Warning: all that grace, beauty and rhythm will fall apart
if we try to follow others’ tempo. I can walk pretty well at two miles per
hour, but if I try to keep up with friends going faster, my gait will fall
apart; I’ll stumble around. The Chinese have a saying that no one can move
gracefully when they hurry, so I don’t hurry. Those friends just have to wait
for me, and I have to stay ready to be left behind if necessary.
A lot of people quit exercise programs after bad experiences
trying to keep up with the aerobics instructor. Others never even try; they
look at Tiger Woods and say, “I can never play golf like that, so why bother?”
As we age, or become ill, we may hurt ourselves with comparisons to our
younger, healthier bodies. The pain of such loss and frustration is real, and
we must allow ourselves to feel it, but not to let it stop us. Ideally, we use
the pain to get out there and work on getting better. Finding balance is
largely about finding our own speed, our own best ways to do the things we have
been given to do, not comparing ourselves to some ideal, or to those who are,
or seem to be, doing better. Those others have their own problems.
How long is the future?
When we face our mortality and limits, we tend to become
more aware of how valuable each day, hour and moment is. We tend to agree with
Nancy Birmingham, a nurse with lupus, who remembers:
“I used to try to be all things to all people. I was rearranging deck chairs on
the Titanic. If I hadn’t gotten sick, I wouldn’t have spent one minute living
in the moment. I would have missed my whole life, not realizing that it is so
precious.”
We want to live in the moment, which is all we have, but we
have no way of knowing how long that moment will be. So we have to find a
balance between living for today and living for the future. With creativity, we
can do both. Bob Lawrence had to decide how long “now” was going to be, when he
was diagnosed with pneumocystis (PCP), an AIDS complication which, in those
days, usually meant less than two years to live, if you recovered at all. What
was he going to do with that time?
I was born in the SF Bay Area and lived
here my whole life. I thought, “I want
to see the rest of the country.” I had
been waiting, trying to get someone to go with me. I had a nice motor home, but
I couldn’t find anyone who wanted to go. After the PCP, I took off.
My grandfather had a little tear drop
trailer, and I always remember him saying: “one of these days, one of these
days....” and he died about 10 years ago, and never even left the state with
it. And I’m running along looking for other people’s approval, and my dad said,
“I don’t want to see you sitting around here in 10 years saying “one of these
days....”
What I learned
is, if something is important to me, I need to be out there doing it. I
also thought, though, I don’t want to learn all this stuff, and have it be
wasted. Have it get stuck in my brain, which may at some point stop
functioning. So I took my computer with me and wrote these massive travel
diaries and sent them out on the net, e-mailed them to all my friends, what I’d
seen, what I’d experienced, what it felt like. Hopefully, I’ll turn it into a
book, but anyway, it’s out there.
Bob didn’t abandon the future. He came back from his trip when he needed
more support for his health. When the protease inhibitor drugs came out, he
started them, and is now studying for a college degree, as well as volunteering
to counsel and teach others with AIDS. The fact remains that he decided to take
his trip, living as if now was all he had, and he is still alive, where nearly
all his friends from the time he contracted AIDS are dead. People who have seen
his travel diaries tell me they are very glad to have read them.
Dependence vs.
independence
Like all the two-way balancing acts in this chapter,
dependence and independence are both necessary characteristics. In fact, all of
us are dependent on others to a large degree, and independent to a similar
degree, and generally, we want to stay close to that middle path. Different
cultures, and different situations in life call on us to tend more to one side
of the line or the other. Being very young or very old, or having significant
physical or emotional health problems or disabilities, push us toward the
dependency side, and that is all right. Being adolescent, or having unfulfilled
abilities, values, or desires squashed by a too-close family structure, may
call for more independence. That is OK, too.
I don’t know how many times I have asked clients whom they
could call on to help them shop or cook or walk, only to have them reply, “I’ve
always been independent.” Well good for
you, but does that mean independence 100% of the time? That’s a ridiculous goal. But how do you know where to draw the line?
A general rule is to keep doing what we can for ourselves,
if we don’t compromise our health, safety, or quality of life in the process.
But if we really can’t read the numbers on our insulin syringe, we just have to
get someone else to do it, or find ways (like syringes with much bigger
numbers) to adapt. We don’t want to act like the senior citizen in the old
joke, who says, “My neck is too stiff to turn my head; my eyes are shot, my
hands shake, I don’t react like I used to, and sometimes I get confused. But,
at least I’ve still got my driver’s license!”
Creativity and the use of supporting aids can help maintain
independence. I have friends who have trouble walking, but don’t want to use a
cane, walker, or wheelchair because it makes them feel dependent and
embarrassed, “like I’ve given up.” So
they just don’t go places they’d like to go. That is really giving up! There are catalogs full of great stuff to
help people with various disabilities do almost anything. Sometimes it’s not
equipment, but just listening to what disability activist Susan Haight-Liotta
says: “Disability doesn’t mean giving up doing things. It means finding
different ways to do them.”
Finding different ways to do things is called problem
solving; keep reading for some examples. The process involves brainstorming
possibilities, possibly with friends, family, or health professionals, then
picking one and trying it out for a week or so, to see if it works, and
modifying it as necessary. If it doesn’t work at all, pick another and try
again.
Hundreds of tips, strategies and techniques have been
developed for getting things done with disabilities and/or reduced energy.
Books with lists of helpful hints are given in the resource section. Other advice is available from physical
therapists, rehabilitation counselors, nurses, occupational therapists, support
groups, and anyone who has limitations similar to our own.
Others and ourselves
The balancing point between others and ourselves is hard to
find; some of us feel guilty for taking any time away from others. Others never
think about anyone but themselves. Some cultures expect extreme devotion to
family, above personal needs, especially from women. Some social psychologists have said that women, in general, tend
to err on the side of excessive concern for others, while men tend to go the
other way. I wouldn’t argue with that.
We reach balance when we take all the time we need to
maximize our health, without jeopardizing the health of loved ones. For
example, we cannot take a two-day retreat in the country, no matter how much we
need it, if it means leaving children alone in the apartment, or spending the
baby’s immunization money. But when we skip our daily relaxation because Aunt Pauline
wants a ride to the store for cat litter, right now, we have gone too far the
other way.
Sometimes balancing competing needs calls for creative
solutions. Say we want to get a
massage. But it costs $60, money we
have budgeted for our kids’ Christmas presents. Three possible solutions would
be: bartering some service to the massage therapist instead of paying cash,
making something for the children instead of buying, or getting the money from
somewhere else, by asking for help or using savings. A better answer might be
going to the local massage school and getting one for free from a student! Maybe we have a friend or relative who
enjoys touching and could give us a decent rubbing.
A really important lesson is learning to let others live
their own lives. We really cannot afford to take on the problems of others who
are capable of taking care of themselves. We can coach, advise and support, but
they must make their own decisions and take the consequences. It’s sometimes
hard to apply this rule, especially with our own adult children, but we can
save a lot of heartache on both sides by letting go.
Finding balance between visiting others and having alone
time makes a big difference for me. Too much time with people, even with Aisha,
can wear me out. I really treasure the
days I can spend alone, but that’s because I don’t get them very often! For many of us, too much loneliness is the
bigger problem, but for all of us, the key is finding the right balance, the
mix that feels good to our bodies.
Anger, acceptance,
denial, grief
By now, most of us have heard of the “stages of grief,” by
Elisabeth Kubler-Ross: denial, anger, grief, bargaining, and acceptance. Most of us, though, have the misconception
that we go through the process, and then we’re done with it. That may happen
when we are dead, but most of the time, we have all these emotions
simultaneously, and repeatedly, and we face the task of finding balance between
them.
With or without illness, a certain amount of denial is
necessary for proper function. We may have a major health problem, but we don’t
want to think about it all the time. We need to face our mortality, but facing
it constantly could make us kind of a drag to be around. If we are facing a
loss too great to bear all at once, some denial can keep us going until we are
ready to handle it. Perhaps the saying, “God never gives us more than we can
handle,” really means, “We only recognize as much of the truth as we can deal
with.”
Grief is also good, but not all the time. As discussed
before, crying, intensely feeling loss and pain, will enable us to get moving
again. It also allows us to fully experience the joy and beauty of life.
Personally, I probably do some serious crying at least once a week. That’s what
keeps me so annoyingly cheerful and positive the rest of the time. Since life
is full of sorrow and loss, if we suppress sadness, it will dampen our ability
to feel. We may lose the capacity to feel joy, and eventually the ability to
function. When dealing with an ongoing
health condition (such as life), new losses will come, or old losses recur when
we least expect them, and we find ourselves needing to grieve again.
Anger also plays a role in getting well, though too much of
it can be deadly. If you have a chronic condition and have never gotten angry
about it, you don’t understand the situation. Darlene Cohen, in Finding a
Joyful Life in the Heart of Pain, talks about shattering a jam jar against
the refrigerator when her arthritic fingers couldn’t open it. She says her anger gives her the energy to
do the exercises and other health practices she needs to get and stay well.
We all have reasons for anger. Perhaps discrimination has limited our opportunities in life, or
money problems keep us living in an unhealthy situation. Maybe we were born
with some bad genes or raised with poor health habits. Or possibly we are angry
with ourselves for not making smarter choices, or with others who have treated
us poorly. All this anger does for us is raise our blood pressure and destabilize
our hearts. Used properly, though our
anger can help us.
In Chinese medicine, and in modern psychology, the purpose
of anger is thought to be energizing us to make a change. The trick is using
our anger appropriately, instead of letting it use us. For example, if Darlene
had thrown that jar at her husband’s head, she would probably have been out of
balance there. If we get cut off on the highway, we can stew in anger, allowing
rage to build as we think all kinds of destructive thoughts about the other
driver. Doing that, though, only hurts us, because there is nothing to
change. The intended target isn’t
getting hurt; he’s not even aware of our rage, unless we commit an act of
violence against him. In this case, it’s better to have a soothing thought
ready, like “He’s probably under a lot of stress,” or just to scream once and
let it go.
Sally, an HLCC participant demonstrated an effective use of
anger, after her rheumatologist gave her a series of drugs that caused stomach
ulcers without helping her joint pain, and told her that her spine was going to
deteriorate, and nothing could be done about it. She finally said, “the Hell
with this.” She stopped all her meds, stopped seeing the specialist, (but not
her personal MD), started taking supplements her husband found, and started
flexibility and stress reduction exercises. Now, 15 years later, she still has
some pain, but is fully functional, stands tall, and has an active, positive
life.
Acceptance is where we want to be most of the time. Life feels
better, uses less energy, and is easier to change, when we accept it as it is.
As discussed before, though, we usually have to go through grief and anger to
get to acceptance, and even then, it is not a permanent state. It’s something
we need to work at, and sometimes, something we need to let go of temporarily,
giving ourselves permission to feel our painful emotions. Or forget the whole
thing for a while and spend a few hours, days or weeks (depending on our
condition) in denial. That doesn’t mean, “just one night on the town” for an
alcoholic, or an equivalent piece of self-destruction, of course. We have to
take responsibility, but we can still maintain a degree of emotional freedom.
Self-help or
self-torture?
Self-help books (including this one) can make us crazy,
because they are too full of things to do. Reading them, we wonder where we’ll
ever find the time to carry out all these wonderful prescriptions for our
happiness. By this point, if you’ve read straight through, you’ve been told to
get more pleasure, find more meaning, and spend more time and energy on
self-care. Yet, we have limited time and energy, and most of us have other work
to do.
Balance is the key element here, also. We tend to take an
idea that sounds good, like exercise or relaxation, and treat it as an absolute
requirement, a crucial responsibility, when it is just a tool. We see 30 ideas
of things to do, and feel we need to do them all. When you feel that way, stop!
We can gradually move into a healthier flow if we remember that no one
role, job, relationship, health practice, or interest dominates our entire
life. Take it one thing at a time.
Rhythm is life
Pretend you’re a car. Would you do better cruising down the
freeways, your wheels maintaining a steady beat, with a steady foot on your
accelerator? Or would you rather be stuck in stop-and-go city traffic, speeding
up, slowing down, never getting a chance to run smoothly? Which way would you
get better mileage? Which way would your engine last longer?
People depend on rhythm much more
than cars do. Each body has its “biorhythms,” optimum patterns of wake and
sleep, activity and rest, which we usually ignore. Living in a regular pattern
allows us to flow along like a car on a freeway, or like the elders who seem to
go on and on, sustained by little except habit. This section advocates getting
into a bit of a rut: learning and following cycles that are right for us, that
feel good and use less energy. Of
course, we need variety, too. The goal
isn’t to have every day exactly the same, but to live easily, whatever we
do.
Rhythm makes everything better.
Beginning jugglers often struggle until someone turns on music. Music or a
recorded drumbeat can help people with Parkinson’s disease, multiple sclerosis,
or stroke to walk better. Drumming has become a valued social activity in
senior centers, because it improves functioning in Alzheimer’s disease and
arthritis, and promotes social interaction. Drumming and music therapy have
both shown benefit for autistic and emotionally disturbed children, as well.
Neurologist Oliver Sacks, who
wrote Awakenings, says, “I regard music
therapy as a tool of great power in many neurological disorders – Parkinson’s
and Alzheimer’s – because of its unique capacity to organize or reorganize
cerebral function when it has been damaged.”
You can
actually see this organizing effect on brainwaves, on EEG tests. Connie Tomaino, Director of the Music
Therapy Department at Einstein Medical Hospital in New York, reports, “People who had irregular or weak background
brain rhythms became more organized, and the rhythms became more pronounced and
higher in frequency when more rhythmic music was played.” The EEG improvements
were usually accompanied by functional improvement.
Music therapy has proven effective in all manner of
psychological and physical conditions. According to Marc Ian Barasch and Caryn
Hirshberg, “In nearly all cultures, music and rhythm have been used as forces
of healing…Shamanic healing ceremonies almost invariably feature music and
drumming.” Usually, the drum beats at the tempo of the theta waves in our
brains, the waves associated with imagination, dreaming, and creativity. Frequently, the gods of healing are the same
as the gods of music, as with the Greek Apollo.
The benefits of music should come
as no surprise. Our bodies have their own flows: heart rhythms, four different
brain wave patterns, and muscle contractions. We all know the benefits of
regular bowel (and bladder) function. The more rhythm we get into our lives,
the easier things tend to go. For example, we can play upbeat music when we are
feeling fatigued, and gentler sounds when we need to relax. Rhythm means much
more than music. It relates to the way we live.
Bodies
like to get up at the same time and go to bed at approximately the same time.
Rotating shifts at work (especially the aptly named “graveyard shift”) have
been found to decrease life span and increase rates of illness. So we want to
find a way of life that will allow a reasonably regular schedule of sleeping.
Of course, there will be special occasions, but before and after these
exceptional days, we want to get back to normal. We also want to eat at fairly regular times.
Self-care
is the focus of this book, and I strongly recommend setting regular times for
our health practices, whatever they are.
I do stretching and meditation first thing in the morning, before anyone
else knows I’m up. This plan works for a lot of people.
A wonderful health practice in
much of the world is the siesta, usually an after-lunch nap, at the hottest
time of the day. In cooler climates,
another time might be better. An after
work nap may fit best in most of our schedules. If a nap doesn’t interest us,
or doesn’t fit into our schedule, we should still consider taking breaks
between work and home responsibilities. A shower, a short walk, five minutes of
focused breathing, reading the comics, or any kind of break helps us relax
before facing the family or whatever waits behind our doors.
It is good to schedule in time with our family, time for activities we
love and the other things we need to do. Getting our day organized is covered
in the self-help section, but the main point is to have days we can live with,
not to wear ourselves out scheduling a million activities. We have to follow
our basic personal rhythm, the activity/rest cycle.
All of us tend to push our limits,
but we really need to save that behavior for times when something really good
or important is at stake. Otherwise, we
wind up with worse symptoms and even worsening disease processes. We tend to
believe that we can’t take a break because we have so much to do, but as we get
more fatigued, our efficiency drops off, anyway. It is more effective to take breaks and come back refreshed.
Susan Haight-Liotta works and raises a child, despite severe
diabetes and chronic pain. She says we
have to be flexible about our time:
Allowing yourself the ability to have bad
days is a big thing. It’s very hard,
but it’s a step that you have to take.
It’s OK if I’m in the middle of a task to go lay down for an hour to get
my reserves back up. It’s OK to push
myself because I’ve got this deadline, even though I may pay for it
tomorrow. It’s like when you get out of
high school and you go to college, you have new time management skills that you
have to learn.
NeelAnne
Keith, a woman whose Chronic Fatigue Syndrome has not dampened her positive
attitude, recommends setting an alarm to remind us to take our breaks. Once we
learn how long a stretch of housework or reading or playing with the children
is best for us, we can set an alarm for 15, 30, 60 minutes or whatever is
appropriate. Then take the needed time to really rest, possibly including a
relaxation exercise or a nap. It’s OK to let the kids watch TV or put the dishes
off until later so we can get our rest. For more difficult demands, such as a
confused elder or severely disabled child, of course, we have to get some
help.
God apparently wants us to rest
one day a week. Remembering the Sabbath day is one of the Ten Commandments, and
working on the Sabbath is among the dozens of offenses punishable by death in
Old Testament law. Come to think of it, consistently working seven days a week
without a break will, in fact, tend to make you die sooner, so maybe it all
works out.
Religious counselor and author
Wayne Muller says the Sabbath is a day to “delight in creation, and to give
thanks for the blessings we may have missed in our preoccupation with our work.
It is a time to remember and celebrate what is beautiful and sacred.” Taking a weekly Sabbath day to rest and
renew is like leaving a field fallow to renew its productivity. It sets us up
for the week ahead. We may also want to move towards an annual pattern of
living with the seasons, e.g. resting more in the cold and dark of the winter,
avoiding overheating in the summer, and starting some new activities in the
spring, when the new plants are starting to grow.
Some
final points on the art of recovery follow. When psychologist Joanne Lemaistre
developed multiple sclerosis, she lost most of her ability to walk, and some of
her speech, a difficult problem for a psychotherapist. She persevered and wrote
two books on living with chronic illness (what is it about MS that turns us all
into writers?) In Beyond Rage,
she developed the concept of “able-heartedness”: “The truly handicapped of the world,” she says, “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 become able-hearted. Able-heartedness is within the grasp of all of us.”
If
we don’t want to be panicked by our limitations, especially our mortality, we
need to recognize that the world doesn’t really need us to do all its work. A wonderful feeling of peace comes over us when we realize
life will go on just fine after we’re gone, as it did for a million years
before we got here. We can’t do everything; the world doesn’t revolve around
us, and our “to do” list will still have things on it when we die. We might as
well relax and heal.
This bit may sound
preachy, but I’m going to say it anyway. I believe the amount of grace in our
lives is often inversely proportional to the amount of driving we do. Ernest Callenbach promoted the concept of
the “green triangle,” with the points of the triangle being health, money, and
the environment. Generally, living in ways that are better for the environment,
will save us money and improve our health. For example, drying clothes on the
line instead of in a dryer saves on utility bills and conserves nonrenewable
natural gas, and gives us some good exercise (as well as being easier on the
clothes.) Not driving is the prime
example of this concept; you save a ton of money, eliminate the most stressful
activity in most people’s day, and help the environment. Try taking the bus,
walking, or at least carpooling.
A lovely children’s
book by James Stevenson called, “Clams Can’t Sing,” tells the story of two
clams who surprise their shore-dwelling neighbors by participating in the local
talent show. They endure insults and doubts
about their ability, but manage to come up with some kind of performance –
blowing bubbles and making whooshing sounds, mostly. The crowd (of birds and crabs) loves it. At the end, all the creatures are dancing,
and a crab comes over and says, “Too bad clams can’t dance.” They reply, “We
are. We’re dancing inside our shells.”
“I couldn’t tell,” says the crab. The clams answer, “That’s not our fault!” And that pretty much sums it up. It’s not our fault we have to live in these shells; everybody does, to some extent. But it is our responsibility to make our inner clam count, not the outer shell. With that said, let us rejoin the world of the vertebrates, and start developing our self-care plans!
David
Spero, BSN, RN is a 51-year-old nurse, journalist and health educator
living in San Francisco. He is a health coach, working successfully with
chronically ill people to find quality of life where quality has been denied,
and discover health when life has been defined by illness. In addition to his
book The Art of Getting Well: 5 steps to maximizing health when you have a
chronic condition, he teaches classes and is a health coach. David is also
a practitioner of Acupressure and Interactive Guided Imagery sm. He teaches
health classes, gives entertaining, inspirational talks to community groups on
wellness, and leads seminars for patients and health professionals.
David
remains active in nursing and alternative health organizations. He inspires
hope and provides paths over the obstacles that keep so many of us from taking
care of ourselves. He has worked closely with people with heart disease and
hepatitis, leads Chronic Disease Self-Management groups, and has co-written
educational programs for people with arthritis, asthma, allergies, chronic
pain, insomnia, and other conditions. You may reach David through his web site
at: www.art-of-getting-well.com