Finding Your Purpose in the Midst of Pain

LEARNING TO LIVE WITH ILLNESS

by Carol J. Langenfield and Douglas E. Langenfield

to be nobody but yourself—in a world which

is doing its best, night and day, to make you

everybody else—means to fight the hardest battle

which any human being can fight,

and never stop fighting.                — e.e. cummings

Why am I here, what can I do that is worthwhile, now that my life has been turned upside down? We have both asked, cried, and even screamed out these questions at various times throughout our illnesses. Many people ask similar questions when faced with illness, particularly a serious illness. These questions are the focus of this article.  We will also look at learning what strengths, talents, and gifts you have to offer in spite of your illness.

Illness often presents a crisis that turns your life upside down. We describe crisis in terms of the Chinese word for crisis, which is a combination of the symbols for danger and opportunity. Life-changing illness gives you the opportunity to develop a new sense of who you are and to rediscover your purpose in life. In The Power of Purpose: Creating Meaning in Your Life and Work, author Richard J. Leider says, “Crisis is the mirror of purpose. Crisis brings us face to face with the big questions.” (San Francisco:Barrett-Koehler, 1997, p. 7.) A mirror brings you face-to-face with yourself. A crisis brings you face-to-face with yourself. You suddenly have an opportunity within the challenge of illness to look again at what is really important to you.

A serious, life-changing illness may totally change many facets of your life. It may change your occupation, affect your interactions with others, and redefine the place of spirituality in your life—how you connect with God. Many people with an illness struggle with how to find these connections, how to define success in one’s life, and how to find rewarding activity. These issues are key components of defining your purpose.

Your illness may force you to view your approach to life in a different way than healthy people do.  You may be defining your purpose for the first time or from a totally new perspective. This article will focus on topics which address the basic questions, “Why am I here and what is my purpose?”

A Definition of Purpose

Author Richard J. Leider says, “Purpose is that deepest dimension within us—our central core or essence—where we have a profound sense of who we are, where we came from, and where we’re going. Purpose is the quality around which we choose to shape our lives. Purpose is a source of energy and direction.” (Leider, p. 30.) We especially like the phrase source of energy for describing purpose. Those of us with life-changing illness are often tired (Carol’s word is exhausted!), so being able to find a source for tapping into energy sounds very helpful. As you look into purpose as a tool to use for changing how you now live your life, remember that it may be a key to unlocking an inner energy for living.

Are You Living Your Life On Accident or On Purpose?

Many people today go through life constantly busy. They are running everywhere but do not know their destination. Busyness is often seen as an admirable trait in our world today. Has anyone asked you how you are, and you answer “Busy!”? In our society, being busy suggests you are important, your life is worth living. Busyness is a mark of success. However, what is being accomplished with this busyness of today’s lifestyle? On-accident living is very often a part of this busy lifestyle.

Sometimes you may need to assess why you have been so busy. As you learn to live with your life-changing illness, you may realize for the first time that you need to live differently. You may begin to question whether you are living on purpose or on accident? You may wonder what you can do to make life easier. When you practice on-purpose living, you think through what you value and make choices about what you do and how you live your life. Those values become your new basis for making decisions.

Living On Accident

If you simply take life as it comes, disorganized and drifting without a map, you are most likely living life on accident. You may be busy simply because there doesn’t seem to be any other way to get the job done. Living a busy life as an on-accident person, by putting your health and yourself in the back seat and by letting your life control you, may be hazardous to your health at any time but especially when you have a life-changing illness.

Besides drifting about, people who live life on accident often find themselves too busy, or put another way, “in over their heads.” Literally, the phrase “in over your head” refers to being in water over your head. When you are in deep water, it becomes very hard work just to swim in place and stay above water. In our example, the water is your busy life. Life often becomes “deep water” and difficult even when you are not sick. However, as you are probably well aware, when you have an illness, the water of your life gets deeper much faster and becomes much harder to tread. Sometimes this makes your illness worse. Many times Carol has had to make decisions based on what was most important and how her health would be affected. Being too busy affected her health and her ability to do important activities.

Before your illness, there were probably times when you felt like you were living life “in over your head,” trying to maintain an unplanned and often overcommitted agenda. You may have been too tired, made mistakes, become depressed, and been very irritable. People may have told you how miserable you were to be around. These reactions to living an on-accident life are often warning signs. Your body was probably telling you that your lifestyle could be leading you toward problems. When you were healthy, you probably had the physical resiliency to “manage,” even if you were not taking care of yourself very well. The ability to get by with doing too much usually is lost if you suffer with life-changing illness.

Your body is not a silent partner when you abuse it by living an on-accident lifestyle. Your body speaks to you all the time. However, most people do not listen to their bodies or understand their bodies’ language. Your body speaks when it is thirsty by saying, “My mouth is dry.” It is speaking to you in the only language it knows, “I need water.” Your body speaks when it is hot by perspiring;  it is saying, “I need to find a cool spot to sit down for a while.” Listening to your body becomes more important with illness because even under your best circumstances you are fighting an uphill battle. Living life on purpose gives you another option, an entirely different way to live life.

Living On Purpose

As the words “on purpose” imply, on-purpose living means you make intentional choices about what you do and how you do it. On-purpose living has some specific characteristics.

·      You know your purpose

·      You listen to your body and accept your limits

·      You have a vision of your future

·      You direct your life accordingly

Accepting and following this four-part prescription for on-purpose living may help you turn your life around. We are not saying that on-purpose living will make you well. We do believe, however, that you are certain to make your life easier, more rewarding, and more enjoyable. As we said at the beginning of the chapter, living on purpose can be energizing. Using this approach will create a new set of lenses through which you see your life. With these new lenses you will see yourself as a valuable person despite whatever the specific limitations your life-changing illness has given you. You and your purpose will now look different in the “crisis mirror.”

Whether your pain is the emotional pain of detoured plans or physical pain of illness, if you do not have a reason for being or can no longer perform in life as you did before, you may feel as if life has no meaning. Some people who feel this way then choose to remain in this void and become stagnant, depressed, afraid, or angry. Life can seem futile and almost unbearable. If you have these feelings, be assured you are not alone. These depressed feelings are a part of adjusting to illness. You are adjusting to the loss of being able to perform in life as you did before.

If finding a special purpose seems ridiculous at this time, then think of just finding a purpose for today. At the end of the day look back and see how you made a difference today. Did you cheer someone up, call a friend, feed the birds, smile to a stranger? These activities and many other simple activities make a difference in your life.  Tomorrow do the same thing. Taking things one day at a time can be essential for living on purpose with life-changing illness.

You may be familiar with the story of professional golfer Casey Martin, whose rare circulatory system ailment limits his ability to walk. His highly visible, well-publicized challenge of the Professional Golfers Association to allow him to use a cart in the PGA tournaments has raised the public attention to the fact that golfers who are highly skilled but have physical challenges may deserve to have the right to play golf with a cart. Martin knows that he has a limited number of years where his health will permit him to play competitive golf, even with a cart. He knows his purpose—to play on the PGA tour—which has empowered him to take on a very difficult challenge.

Defining Your Purpose

When you define and become aware of your specific purpose, you can develop a more positive outlook and be energized mentally and physically. You can have a better sense of your value as a person.

A good purpose statement for living does not need to be complicated or difficult to remember. It does not need to require physical energy which you may not have. However, the statement is the core of your being. It is the soul or essence of who you are. You may already have one that you try to live but not realize it. A good purpose statement can be very short and simple. If you are able to identify your purpose and label it, remembering your purpose on a daily basis will be easier. It will help you to write your purpose on your heart in order that you may live it.

Here is another way to look at purpose. A good purpose statement is like a brochure or postcard of your trip’s destination. This trip has a road hazard of life-changing illness. The illness dictates which roads and choices you make. With a purpose, a destination, you know where you eventually want to be. You make adjustments for the illness (as with a road hazard or detour), but you can still get where you are going (your purpose).

If you do not know where you are going, how can you get there?  Instead, if you do know where your destination is, you can develop a map to get there. The route to your goal may be different because of illness, but the end result can be the same.

We have had to change the route to our goals several times. Before his illness, Doug clearly saw his professional career as a partner with a major international consulting firm as an important mission in his life. Carol clearly saw being a wife and mother as an important mission in her life. Being a nurturing wife and mother (which meant caring for Doug’s and Eric’s needs) seemed like a very appropriate goal for her when she was 25 years old with an 18-month-old child in 1979.

When life-changing illness comes along in your life, “stuff happens” and the crisis mirror reflects your need to change assumptions about how to accomplish your purpose. You may even realize that you need a totally different purpose for your life. You and the world around you may look different in the mirror with your life-changing illness.  Carol remembers a time when she had to challenge these assumptions and describes it below:

I needed to take an entirely new look at what motherhood meant and revise that role and my goals to fit my new reality. Suddenly, being the best mother meant arranging the best care for Eric when I was hospitalized or too sick to care for him by myself.

Being a good mother could not mean dressing like June Cleaver, the perfect housewife and mother from the 1950’s television show “Leave it to Beaver,” vacuuming and dusting the house three times a day to maintain an immaculate house and fixing perfect Betty Crocker meals.  However, being mother could and did include making a ritual of reading naptime and bedtime stories to Eric, my preschool son. This was something I could do no matter how sick I was. Being mother also meant learning how to accept help from outsiders to make life better for Eric. Such help included accepting rides to preschool from others and accepting opportunities for him to go to play groups even when I could not attend. Seeing gracious acceptance of help as a part of my role as a nurturing mother was not “giving in” to my illness. Rather it was realigning my purpose and thoughts to see this as empowering me to do the best job I could as a mother.

Was this easy? No way! Did I know that what I was doing at the time was living my purpose? Only partially. I remember viewing those who helped with Eric as his special angels. I got by with more than “a little help from my friends.” Looking back I can see how this was realigning my goals to accomplish my mission or purpose at that time.  I could still be a good mother even with life-changing illness. The route to being a nurturing mother was different, but I think I still was able to accomplish that purpose.

Life-changing illness requires you to take a whole new look at who you are, why you are here and how you will accomplish your goals.  Regularly and creatively re-examining your mission and purpose is essential to leading an on-purpose life that is aligned with good self-care.

What is your story? Isak Dinesen said, “God made man because he loved stories.” What will your story be and how will you or others know you are living it? What will the pictures look like in your storybook? In other words, what would living your purpose look like if you were watching it being lived out by you on a television show? What would you be doing? Thinking of your purpose in action words may be a more concrete way for some to understand their purpose.

Following are some resources that might be useful for you in sorting out your purpose, mission and story.

Laurie Beth Jones’ The Path: Creating Your Mission Statement for Work and for Life is a helpful resource, including a book and accompanying workbook to help you find your mission and purpose. (Hyperion, 1998.) Although the book does not specifically address purpose in relation to illness, it is still a helpful resource. This book and her other resources can be found at www.lauriebethjones.com .  You can create a mission statement on her Web site at www.lauriebethjones.com/mission .

www.franklincovey.com/customer/missionform.html is a Web site offering a convenient way to work quickly through a mission statement, making the process both fun and easy. You can come up with something about yourself that may be just what you need to refocus, or at least you can get a very good start.

Another well written book mentioned in this chapter is The Power of Purpose: Creating Meaning in Your Life and Work by Richard J.  Leider (San Francisco: Barrett-Koehler, 1997). He has studied what older people wish they had done more of. Leider does an excellent job of relating purpose to life and career.

Energy Expenditures

Once you know what your purpose is, you will begin to naturally ask yourself, “Is this project or event worthwhile for me to be doing?” and “Does it help fulfill my purpose?” That doesn’t need to mean that it is not important. It simply means rather that the project, event, or detail does not need to take up your scarce time and energy. In other words, doing it yourself may not enhance your life at this time.

Remember, your purpose statement does not need to be complicated. Just because your purpose statement is short does not mean it is not important. Mother Theresa’s mission statement was very short, “To show mercy and compassion to the dying.” She lived out her mission statement one act at a time for her whole life, even when she was quite ill. By doing so, she touched millions of lives, directly or indirectly. By living a simple purpose statement, Mother Theresa was able to have the statement written in her heart so that she could easily remember it daily, or more likely moment to moment.

One way you might think about activities and events is to view them as energy expenditures. An energy expenditure is something that uses up energy. A 500-mile car trip might burn up 20 or more gallons of gasoline. A two-hour homeowners’ association committee meeting might use up all of your available energy, energy you might otherwise have used to do something really important, like getting adequate rest, doing your job, or spending time with your spouse or children.

Keeping yourself healthy and quickly distinguishing between healthy and unhealthy energy expenditures are new concepts for most people. We suggest that you ask yourself the following question, “Does this activity fit my purpose and keep me as healthy as possible?” The busy world drives you in many directions that are not always of your own choosing. Now that you face life-changing illness, knowing your purpose and letting your own purpose drive you become even more important than before you were ill. You no longer have a reserve tank of energy.

When you have a life-changing illness, maintaining your health becomes your number one purpose. This purpose influences every other purpose you have. We imagine that Mother Theresa frequently asked herself, “Does this activity help my purpose of showing mercy and compassion to the dying?” She appeared to have endless energy, most likely because all of her energy was spent accomplishing her life purpose, minimizing needless drains of energy as a result of extraneous activities.

Questions We Ask When We Make a Decision

When we are asked to take on a project, deciding whether or not to buy something, going on a vacation, doing a group activity, or other activities, we try to ask ourselves a few questions before we get to an answer of “yes” or “no.” First, we ask

1.   Will it simplify our lives?

2.   Is it a worthwhile and important activity (regardless of who does it)?

3.   Does it fit our personal purpose statements?

4.   Is it good self-care for our health while living with an illness?

If the answer is “yes,” we are likely to say “yes” to the activity or project. If it does not simplify our lives, then we ask ourselves three more questions to determine if we should expend the energy that the activity will take.

If we answer “no” to any of these questions, we know we should probably say “no” to the activity. Even if we answer “yes” to the first three questions, if the answer to the health question is “no,” we try to find another way for the activity to be accomplished.  Neither of us would say it is easy or that we make appropriate decisions all the time, but asking these questions helps us sort and plan our lives within our limits. Several times we have had a vacation trip planned, only to realize that the effort of getting ready, getting there, intensively “relaxing,” returning home, and re-entering to our routine wasn’t going to pass our four-question test. We canceled our reservations and took a vacation at home but told very few people about our change of plans.

Finally, we ask

5.   Have we slept on it?

We have discovered that we don’t need to answer “yes” or “no” immediately. We almost always ask for some time, even if it’s just overnight, to “sleep on it.” “Buying time” like this gives us time to work through the other four questions described above. Our hearts may be saying “yes,” but our minds need time to process the data and answer “yes” or “no” appropriately.

Life Is a Journey, Not a Destination

Life is a marathon, not a sprint.  Life-changing illness can make life feel like an uphill run with a 17 mile per hour head wind and one leg in a cast.

The idea of life as a journey, rather than a destination, may sound unfamiliar. Most of us tend to focus on our destination. We have pointed out earlier that you need to know where you are going and what you want from your life. Your life-changing illness gives your journey a new context. It may even change your destination and your purpose.  But the journey is sometimes the best part of life.

Think for a moment about a plane ride for a business trip. There is a specific place where the business traveler is headed and a specific job to be done when the traveler gets there. But consciously stopping to enjoy the billowing clouds, blue skies, and beautiful mountain ranges during the flight can be great, too. Enjoying the journey means putting aside for a moment thinking about your destination and enjoying the moment, not wanting to miss seeing the clouds around you or the mountains below.

When you have an illness, you especially need to watch the terrain as you go. When you are ill, it helps more than ever before to enjoy the small things along the way. Enjoying the journey helps you to look beyond yourself.

All of us are human beings, not just human doings! As a very young child, Doug thought we were human “beans.” Sometimes we do feel like Mexican jumping beans, moving around faster and faster and enjoying it less and less. In Chapter Six, we discussed a relaxation response exercise called mindfulness, the attitude of being mindful and present in the moment. Mindfulness allows you to be aware of what you are doing, why you are doing it, and how the action is affecting you. By just being, you can remember to take care of yourself, enjoy the little things, and make choices that fit your new lifestyle. By slowing down you can make healthy choices and bring back a balance and focus to your life that is by your choice, not a choice driven by human doings. So, don’t just do something, sit there!

Summary

On-purpose living can change your life in a very positive way. We don’t want to imply that knowing who you are and knowing your purpose are easily decided one-time events. They evolve and change over time, whether you are healthy or deal with chronic, life-changing illness.  With chronic illness there is an even greater need to look at yourself because of the greater limits imposed by your illness. Taking care of your health takes on a prominent role and must be your first priority.  Living with awareness of your purpose, what you need and want to do, and staying within the limitations of your illness can be a new, healthier way to live.

Be what you are—that is the only thing one can ask of anybody.            – Paul Tillich

From Living Better, Every Patient’s Guide to Living with Illness by Carol J. Langenfield and Douglas E. Langenfield. Copyright © 2001 by Carol J. Langenfield and Douglas E. Langenfield. Excerpted by arrangement with Patient Press. $14.95. Available in local bookstores or call 877-323-4550 or click here.