The Spirituality of Suffering: Can Therapeutic Recreation Help

Cathy O’Keefe, M.Ed., CTRS
University of South Alabama,
Dept. of HPELS, Mobile, AL 36688
Phone: (251)-460-7131

Introduction:

In October, 2000, I gave a presentation on spirituality at the NTRS Institute in Arizona. I doubted that I would have more than a handful of people in the audience, but I really didn’t mind – it was a topic that I has been a big part of my life, and I wanted to share with anyone who wanted to explore it with me. I was astounded when the room filled to capacity and the audience was so receptive. I decided in November to really stick my neck out and submit a presentation on suffering for the following year’s Institute. I spent the entire year reading everything I could get my hands on about it. In the thirty years that I have worked in TR, I have never seen written in any standard documentation, the word “suffering.” It’s never been used on a care plan that I’ve ever seen, and I’ve never seen it as a question on an assessment. In 1972, when we first began using care plans in my agency, we were told that charts should reflect objective, measurable problems. Physical suffering would be framed in terms of pain, mental suffering in terms of hallucinations, delusions, paranoia, inability to sleep, social suffering in terms of self-isolation, inability to communicate, etc. Suffering would have been deemed an inappropriate clinical term because it wasn’t specific enough, subject to measurement, or treatable with specialized interventions. I suspect that this has been your experience, too, for those who have worked in health care in the last thirty years.

Suffering has a broad, intangible connotation. It suggests complexity. And it sounds foreboding. So, when I submitted the presentation last year, I guessed that I would find limited interest in the topic since suffering didn’t seem to be on the minds of Americans in general. My, how things change!!! September 11, 2001 was, I believe, a watershed moment in health care. Suddenly the word suffering permeated every conversation, news broadcast, and article related to the explosions at the World Trade Center Towers and the Pentagon. I could not have made up a clearer example of the true meaning of suffering –

Suffering is an intensely personal reaction to pain and anguish as well as a collectively experienced memory of others who have suffered before or are suffering around us and with whom we feel a bond. Suffering and the medical model

The compelling force of the terrorist example lies in our ability to be moved simply by the images, words, and stories of those involved. Today I don’t have to tell you intellectually that suffering is the baggage that we carry even after the initial pain has been addressed. For the past twenty-five years or so, the medical community has moved away from giving rightful recognition to that baggage. It wanted to single out the presenting illness, isolate it and, as quickly as possible, pronounce it successfully treated. That effort created a language of objectification, a depersonalization of the client, and the avoidance of any reference to suffering in written charts.

So why do clients still use the word?

Clients use the term “suffering” easily because the nature of the brain brings all human experiences, past, present, and anticipated into one pool. People know that suffering is a word that reflects the amalgamation of everything we experience into a whole, human life story. I suffered in January of 1976 when the doctor told me that one of my prematurely born twins had severe hyaline membrane disease and would probably die within 72 hours. Even though he lived, we were left with months of extreme anxiety at the prospect that he might have cerebral palsy from anoxia or blindness from too much oxygen. Today, even though he is healthy, I wonder about the long term effects of so many x-rays in the early weeks of his life. This is the dull suffering of knowing that some past hurt has the potential to burst forth again at any time

How naive we were in those early years to think that by listing isolated, observable, treatable problems on a patient’s chart, we would simply apply our interventions, check off our goal attainments in the margins and describe in simple, clear SOAP format how the client was rid of each one in a timely, neat fashion. Wasn’t this the best application of the scientific method? You isolate the problem, removing the variables, treat it, and evaluate your level of success, which naturally is determined by how much the problem has gone away. I was a big enthusiast in my younger years. I believed that one day our field would publish a listing of activities that matched every conceivable problem that might appear on a care plan. These could be catalogued and pulled like prescription medication for our clients, applied neatly and with research backed guarantees of success. Then we would be sure to be welcomed at the table of medicine by all its professional members.

The illusion that every problem has an objective fix is breaking up in all aspects of medical treatment. Even this morning as I faithfully took my estrogen pill to fight off heart disease after menopause, I know now because of recent medical research reports, that no definitive studies have conclusively shown estrogen supplements to be beneficial. Some studies, in fact, indicate that I might be actually setting myself up for heart disease or cervical cancer instead. The human body and brain are a complex, interwoven mass of variables. And though we hope that medicine can find patterns of success with various treatments, that’s all they are - patterns, not promises. Every person is so unique in his or her reaction to disease and treatment, that, for every Lance Armstrong who beats testicular, lung, and brain cancer, there are many more who succumb. And even when the body appears to heal, the trauma of near death can leave a specter of fear that often lingers.

For the thousands of people affected by the terrorist bombings on September 11, 2001, they will only have to say “ I was in the Tower when the plane hit,” or “I lost a loved one from the terrorist attack,” and anyone listening will immediately feel the complex intensity of that person’s suffering. We know it because our own observation of it brought us close enough to really feel the pain. Wouldn’t it be good if we could tune in to every patient in the same way, seeing their own stories of loss, grief, and anguish in a way that carries the suffering right to our hearts. If any of you have been told unexpectedly that you had cancer, tell me that the emotional reaction wouldn’t be just as shocking and horrifying – it would be your personal version of a terrorist attack. A hit is a hit. Yet, we haven’t tuned in to those stories sufficiently and consistently. Perhaps the stories of others’ sufferings are irrelevant compared to our own, or maybe we shy away to avoid being emotionally ground down, too weakened by compassion. I used to wonder how Mother Teresa and her sisters could hold up under the enormous amount of suffering that they freely welcomed into their lives on a daily basis. I wondered why hers is one religious order enjoying a surge of vocations. I believe that hospice workers, staff in burn centers, and acute psychiatric professionals are able to remain in high-stress jobs when they lead personal lives that are open to compassion for the suffering of others but full of opportunities for their own personal growth and renewal. Why doesn’t the medical model recognize this?

The seduction of modern medicine lies in its desire to remove all the objective, measurable signs and sources of suffering. The reality is that the intricate weaving of the human capacity to remember, process, imagine, and create makes the goal of medicine far more challenging than most of us want to admit. At one extreme are those who have imagined illnesses - their suffering is their own creation. At the other end are those who seem to have enormous sources of pain and suffering but who are able to live joyfully in spite of them. How can something so universally human have such unpredictable effects? Because ultimately, suffering is a spiritual experience, intensely personal, and full of paradox and mystery. Ironically, it is this very nature of suffering that makes it akin to leisure. What is the role of TR in addressing suffering?

If our field is grounded in leisure, we have to understand that leisure is a spiritual experience, too, in every sense of the word. It is deeply personal; it touches a part of our inner essence that is most uniquely human. It elevates our sense of being long after the actual experience through memory. That’s why when I look at a sunset over the Gulf of Mexico, I am warmed not only by the good feelings of that particular sunset but by the good memories of every sunset when Dennis and I first fell in love and when our children played there as part of their growing up in Alabama. We also have the unique ability to reflect and to make meaning of experiences. Our own choices carry our experiences to another level of reality. The greatest paradox that I see in my work is the capacity for joy and pleasure, for real leisure, even in the face of death. Children do this most easily. Perhaps it is the child’s inner drive for play that makes it possible. But I’ve seen adults do it, too, more from the standpoint that time becomes precious, not to be taken for granted, in a life threatening illness. There is a strong desire to make the most of every moment, to let go of the worries of career, work, money, and power, and to enjoy the time remaining. The same human brain that prevents us from being acutely aware that we are all dying, every day, slowly perhaps but surely, is able to shift and adapt to the reality of pending death.

I’m going to tell you straight up here that therapeutic recreation has a wonderful gift to offer those we serve. It honors the whole person.

It recognizes the capacity for joy even within difficult and challenging circumstances. It seeks to reorder priorities so that the cultural pressure to simply live a life alleviated of problems yields to a life that is rich because it embraces all that is possible.

When Paul Haun wrote his piece on the role of TR in medicine, he warned that to get into bed with the medical model would be dangerous. He noted that patients’ experiences in medical units were so full of this objective, problem solving approach to care that we should be something else - a place of joy, a refuge. But many people rejected this idea because it made TR look like a diversion. Some interpreted this as a dishonest use of the field. Perhaps it seemed to imply that our job was to distract patients or create an environment of denial where we pretend that nothing bad is happening. I believe that it made a lot of practitioners uncomfortable because it implied, too, that we don’t even grasp the seriousness of a patient’s condition. We’re in “la la land” while the real professionals are dealing with the critical and important matters. My guess is that the push to clinicalize our practices and put them on par with OT and PT came from a fear of being perceived as unimportant or out of touch with the patients’ real problems. I don’t think that was Haun’s intent at all, but we weren’t at a place in our professional evolution to embrace his message.

Today our professional language is full of words like outcomes, functional competence, adaptation, adjustment, and compensatory skill development. And of course, there’s APIE, the acronym for assessment, planning, intervention, and evaluation. Isn’t it interesting that we finally know it’s inappropriate to refer to a patient as “the quad in 407,” or “the hip in 202,” but we still accept as completely normal the impersonal language of treatment: “Mr. Smith will demonstrate a 20% reduction in grieving behaviors by crying only twice during TR sessions this week.” Or, “at the end of the second week, post SCI, the patient will be able to state four benefits of wheelchair sports involvement for conditioning and strength training.” Is it possible that in the future, our patients will demand that our language be accessible and humanistic? I think so. I hope to live to see the day when, instead of taking assessments, we listen to the patient’s story; when instead of planning treatment objectives, we help the patient envision his/her future; when instead of launching interventions, we facilitate re-creation; instead of completing evaluations on patients, we assist them in reconsidering what has been added or could still be added to the quality of their lives that is significant? Let me just stop and say here that there is a pathology in our culture of success that permeates the work place for a majority of Americans. Sadly, our value as workers is often defined in a culture of comparison by our status and salaries. I am a more important employee than you are because I bring in more money to the agency, or I head the department, or I earn more. If you buy that reality, there is little hope of you ever being truly happy in your work, because somebody will always be on the ladder’s rung above you. But you’re not alone - psychologists operate in the shadow of psychiatrists in the hospital setting. Counselors feel the shadow of social workers, PT and OT assistants feel the long shadow of their colleagues. There’s only one antidote that I can see - it lies in the realization that IT’S NOT ABOUT YOU!!!

If it’s not about you, then it’s got to be about those we serve. And if it’s all about them, then the most important therapy is the one that is needed at any given moment by that client. What is wrong today in health care is that what we think the client needs, and what he/she perceives is needed, is often very disparate. We’re not interested generally in the suffering that a person carries around. Or, we conclude that this is the purview of the chaplain. But it’s not - suffering, that is, all the negative baggage that a person collects and holds onto, becomes all our concern only if we are concerned for the person more than the disease, the illness, the impairment. I cannot see your suffering if I cannot see you as a person. And if I am willing to see you as a person, then I must agree to acknowledge your suffering. In this regard, assessment becomes inadequate. More is needed. We must agree to enter the stories of our patients. And by doing so, here is what I think we will learn.

The redemptive nature of suffering

One of the most universal of all spiritual principles is that suffering can be redemptive. Across all major world religions, great thinkers and writers have expounded for centuries on the paradox of richness and meaning that is inherent in the most difficult, challenging, or ordinary of daily human experiences. Suffering refers to the broad evils of poverty, starvation, homelessness, violence, and oppression. It encompasses, too, the smallest, most individual secrets of the human heart. Look at the number of people who carry hidden in their psyches the pain of abuse, rape, rejection, and fear, often unknown even to those closest to them. In the third world, suffering is usually a group experience (earthquakes, flooding, hunger, genocide, hostage holding.) In first world countries, suffering is mostly an individual experience, but terrorism has already created a greater experience of shared emotions. Redemption implies a saving power, not necessarily religious in nature, but certainly spiritual. The redeemed are changed positively and we understand redemption to be a source of joy.

Having others close by who share experiences of suffering is achieved in our culture mostly through support groups. Seldom do professionals extend themselves to relationships with patients where vulnerability and emotions are shared. When Bernie Siegel and his wife facilitated a support group for his cancer patients, he was criticized by many in the medical community as overstepping his professional boundaries. Shaving his head to show his solidarity with them seemed particularly over the top to many of his colleagues.

The Franciscan priest, Richard Rohr, notes “If we wish to enter more deeply into the mystery of redemptive suffering, which also means somehow entering more deeply into the heart of God, we have to ask the Lord to allow us to feel, not just to know - to feel what it means to be empty, abandoned, uncared for.” (Rohr, p. 15.) Few professionals want to expose themselves to this level of pain - why? We can’t catch another person’s pain and with the right precautions we shouldn’t be catching another’s disease. But we can “catch” suffering. Our ability to identify with others, to transfer our emotions, to feel fear that this, too, could happen to me terrifies us. Suffering is one’s reaction to pain or discomfort on an emotional level. Since the definition of compassion is a willingness to “suffer with,” compassion necessitates a relationship with a human being who is suffering, not on a general but a specific scale. Do you remember the scene in the movie “The Doctor” where William Hurt, a real jerk of a physician but highly regarded as a true professional by his colleagues, connects with a young woman dying of cancer. The ultimate gesture to acknowledge his willingness to enter into her pain takes place in a dance - he dances with her in silence out in a field. He becomes her partner, allowing her to express unselfconsciously her inner spirit. It is that willingness to show his compassion that begins his own move toward becoming a better physician. He is humanized by entering into her suffering. At the end of the movie, up on the roof of the hospital, he repeats the dance alone. Did you ever see the episode of Mash where Charles, the Mash surgeon, has to make a choice between saving a man’s arm or leg? The soldier is unconscious and cannot give his input, so Charles decides to save his leg, assuming that mobility of the legs would be more valued. The patient, it turns out, was a concert pianist. Because of Charles’ own love for piano and classical music, he is devastated to have made such a grave error. He enters into the suffering of his patient to the point that he undertakes a mission to find a gift for his patient – a concert score for the left hand only.

The paradox of suffering

How could we ever say that it helps to have suffered? The very thought of that seems ludicrous. But spiritual traditions note that the great emptiness created by suffering paradoxically creates room for growth, depth of understanding, and actual serenity. This is not to say that we should seek suffering. But we must learn where to put it in the larger context of our lives.

The ability to see suffering this way requires more than an education. It requires what the Greeks termed Metanoia, literally, a turning around, a look in the opposite direction. Redemptive suffering takes us to a higher point of view, a different mountain top from where we can see the panorama. Eric Weymeier’s climb to Everest would seem absurd since, as a blind climber, he couldn’t even see the results of his effort. But he knew that this climb had as much to do with symbolism as reality. It was a quest for a different kind of sightedness, one that can see in the mind a world that is much smaller than we think, that includes the abilities rather than the disabilities of its inhabitants. I can only share my own philosophy with you and encourage you to think about yours. I am resistant to our culture’s obsession with products or outcomes because I believe that life is lived more as process than product, and what makes the process of living meaningful has to be discovered by every person. Meaningful living isn’t grounded in the quest for diversion from suffering. It happens when joy and sorrow can become careful companions in our life story. If leisure is an experience of joy, rooted in the freedom to become our truest selves, then it embraces the ordinary sorrows and sufferings of human existence as part of that reality. Do you remember reading p. 5 Suffering and the role of TR Cathy O’Keefe

Walden Two by BF Skinner? In his utopia suffering was eliminated, but so, too, was the capacity for joy. If you’ve ever read the writings of Ignatius Loyola, his prayer was to prefer neither joy nor suffering, but to see the capacity for each to bring us to a deeper spiritual place of peace and truth.

I’m an advocate of inclusion, and I’ve said for years that inclusion isn’t about geography. It’s not about bringing persons with and without disabilities into the same location. On the level of advocacy, inclusion implies the creation of meaningful interaction and relationships among all persons. I am also influenced by Jean Vanier who founded L’Arche, a community of persons with and without developmental disabilities who share their lives together. He noted that it’s about seeing that all of us are “disabled” at times. We all share in the human experience of suffering. We are companions to one another on the journey. Inclusion, to me, means weaving all our life experiences, the good and the bad, into a tapestry that defines our lives. I believe that TR makes that tapestry truly beautiful when it helps those we serve take ownership of how and what we weave. I believe that TR can direct people to experiences that strengthen that tapestry, that make its scenes richer in content and meaning. And the real evidence of our place in the weaving should be in the back where the knots are tied and where the threads change color. The work itself must be the person’s.

A patient in my town said to the TR upon discharge from rehab., “The PT taught me how to walk, but you asked where do you want to go, and that was the question that made all the difference.” Note that the TR didn’t tell her where to go. And the TR didn’t say “go anywhere that gets you away from your suffering.” Our role is to enter into a relationship with a patient that is deep enough to understand that person’s sources of suffering and joy. Our role is to light up paths of possibility, to show how the ordinary can become sacred, how memories can be purposely created or serendipitously discovered, and how this freedom that we call leisure can carry us to places of true healing, true peace, and true happiness.

The greatest of human mysteries is our capacity for joy in the face of sorrow and suffering. Knowing that love may end in disappointment or even death, we continue to seek it out, lavish it on our loved ones, and bear up under the pain when things go wrong. Viktor Frankl learned this when he went on imaginary picnics with his wife while incarcerated at Auschwitz. How do people find that level of joy? By making a journey of the soul into itself to those interior places where our own uniqueness kisses the divine; by creating memories with those we love that carry us to the sacred places of the heart. If you read The Little Prince by Antoine St. Exupery, you might remember the words of the fox to the Prince who left the rose he loved back on his planet. The fox reminded him that “you risk crying when you let yourself love.” It is in the delicate dance of joy and sorrow that we appreciate the music. The ultimate irony: leisure in the face of death!

Is it really possible to have fun when you are suffering? Can we dare laugh in the face of death? When my husband and I traveled to Johns Hopkins for his prostate cancer surgery, we knew that our traditional love making was coming to an end. We re-created our honeymoon in a beautiful hotel in downtown Baltimore. We dined out and made love passionately, wonderfully, and naturally for the last time. We both knew what we were giving up for the chance to have the cancer removed. It was a time of heightened awareness of joy and fear. I can only describe it as “flow meets sorrow.” But it will always remain in my memory as a meaningful event that drew us closer as a couple.

I know patients who have packed a lot of life into a short space of time because death was very close at hand. And I’d bet my last $20 that when the people in the Trade Center knew that they were in danger of death, no one kept working. Those frantic calls home to say “I love you” were the best expressions of the really important things in life – relationships. Therapeutic recreation holds out to those near death a chance to focus on the truest part of the inner self. Happiness is what life is really all about. I encourage people who are facing death to immerse themselves completely in the beauty of every moment; to create memories with family and friends, to write letters, make videos, compose poems, paint, dance, travel, laugh, and love. Re-creating the inner self is therapeutic because, as Jung points out, it makes meaning of life’s experiences. That’s all any of us can hope to achieve – that our story is meaningful to ourselves and to others. When it happens, it really is the ultimate happy ending!

Bill Moyers, in his PBS special on death and dying, visited a Zen hospice in San Francisco. I was struck by what was basically only one “assessment” question: What can we do for you to make the experience of dying the very best that it can be? I would add that Therapeutic Recreation can help reshape the time remaining into time that is meaningful, life-giving, memory enhancing, and peaceful. It actually offers opportunity for laughter and joy. It is both patient and family centered, in the broadest sense of family. The therapeutic recreation specialist infuses into every aspect of care the potential for emotional comfort and meaning.

Many hospices have bereavement services for families after the patient has died, but I find a desire on the part of staff to offer more to the patient, family, and friends during the hospice experience itself. They seek experiences that will aid in emotional healing and positive memory building. Therapeutic recreation shines in this area. Plus, it is a “service to the servants,” meaning that TR offers activities that make the hospice environment a life giving place for the employees. The giving that is required of hospice staff doesn’t have to result in “giving out.” Because the best antidote to burn-out is its prevention in the first place, TR services help provide activities that feed the emotional, social, and physical needs of staff. What it helps create is a healing community for everyone involved: staff, volunteers, family, friends, and patients.