The Patient’s Voice: Why it Matters

Greg Lum’s “Prisoner of Pain”:
A Narrative About the Lived Experience of Severe and Chronic Pain

Seven years ago while crossing a street Greg Lum was hit by a speeding car in a school zone. He was thrown high into the air and landed on his side onto the school lawn. This accident began his experience with chronic and severe pain, which is the subject of his account.
“I suppose I can consider what being in pain is like by looking at how the pain has affected the way I live my life. But first, I’d like to consider the problem of even describing pain – specifically, what pain is like for me, how chronic pain appears, how it feels and how it affects me psychologically and emotionally. Especially important is the issue of being in control.
For some, chronic pain is merely a long-term – 10 or 20 years, but then it is over. For others, like myself, it is a life sentence. We may get some fleeting reprieve from pain medication and muscle relaxers for 4 to 6 hours when the meds kick in. But unlike morphine, which separates the patients from the pain like an invisible shield, my pain ‘killers’ merely dull the pain: it never totally goes away. It has been 7 years since my accident, and my life has been altered irrevocably.
Not even in sleep do I get relief: the pain prevents me from getting as much sleep as I need, and what sleep I do get does not make me feel rested. Getting to sleep has become difficult, and when I awaken, I still feel fatigued and sore. Sleep medications make me feel hung over; compounded by my general lack of rest, such drugs merely increase my feeling of perpetual fatigue…my general level of exhaustion feeds the pain and increases its intensity and duration…
So what is pain? Many illnesses result in pain – so is pain an illness? If true, then I am ill because of pain. …. being in pain is to be constantly reminded that you are alive and trapped in your body… “it” (pain) pain is a constant, sometimes like a low-grade fever and sometimes like burning flares. “It” distorts one’s perception of reality and makes living – or wanting to live – difficult….I cannot remember what being without pain is like. This is disheartening, especially since the a future holds no promise of the pain abating and my free, easy movement being restored. Perhaps what adds to the suffering in the present is the lack of hope of ever being…free…And then there’s the resentment from having missed so many events simply because I hadn’t the energy to attend or if I had made plans I was in too much pain to follow through.” (1)

Ultimately, what Greg Lum has outlined for us so vividly is a true state of exile – psychological, spiritual, and physical. Though he continues to work and teach, and to care for his home and himself, he is in exile, separated from his former full life, and from us. Relentless pain has interfered with his thinking and memory, altered his view of himself and his sense of efficacy, seriously reduced his social and relational life, changed his ability to sleep normally and to be refreshed, caused an abnormal dependency upon his health care provider, interfered with his enjoyment of food, seriously affected his critical thinking abilities, inhibited his ability to travel, profoundly affected his life plans and ultimately make him overly conscious of his body…his body in pain.
Greg Lum and others who suffer from the illness of chronic pain have much to tell us about what could help them. They challenge our habits of mind and systems of belief about pain and our role in helping to relieve their suffering. They ask us to remember that to be blamed for one’s own pain increases the suffering, that they grieve for their losses of former way of life, former abilities and former relationships. However, they explain that they learn a great deal about their pain as they are helped to describe it…that the use of similes and metaphors is essential in helping clinicians to understand something which they have never experienced, adjectives alone do not work, and they do not draw the nurse or doctor towards a fuller understanding.
Greg Lum poignantly reminded me once that he did not know that the reason his providers did not listen to him was not his fault. He tells us that the opportunity to talk fully about pain diminishes its power, that he, as an adult, feels trivialized by being offered a pain scale in which he need merely utter a number to describe his complex physical and emotional states. He and others find this method severely lacking because they have much to tell us and because the cause of the pain might change and also, because they find relief in articulating their sense of how this experience is affecting their lives. What Greg fears most is that he will become only his pain – and he will then lose his humaneness. He know that his providers have, at times felt impotent to help him and in that impotence have lashed out at him or have insinuated that his plight was his fault, that he had some psychological need to be in pain. ( It is human folly to blame another for his or her afflictions and thus, relieve one’s self from any responsibility to help. ) What Greg Lum and others ask of us is that we transcend our reasons for not acting on their behalf, to be open to their experience, to listen to their voice and to work with them to find a way of managing their pain that gives them a life worth living…releasing them from imprisoning conditions…unable to tell their stories… objectified and left in exile.

Blog entry by Jeanine Young-Mason, EdD, RN, CS, FAAN

1. Lum, Greg. “Prisoner of Pain” in The Patient’s Voice: Experiences of Illness. Author/editor Jeanine Young-Mason. F.A.Davis, 2016

Nursing and the Arts

Introduction to a Collection of Nursing and the Arts Columns*

by Jeanine Young-Mason

The idea of a regular column based upon the correspondences between the practice of nursing and the expressive and performing arts arose from my research on suffering and compassion.  The essential link between nursing and the arts lies is the fact that both are concerned with the human condition and have a profound appreciation of the suffering of others ( moral, spiritual, psychological, and physical ).  In fact, the arts inform and enrich the art of nursing practice in a way that textbooks and  specialized studies cannot.  The knowledge that the arts can teach us what text books cannot is a revelation that still surprises some.  It is my expressed hope that readers will discover through these explorations and others the power of the arts to heal – through entertainment, and laughter, illumination and wisdom.  The expressive and performing arts considered in my columns include drawing, painting, sculpture, cinematic art, selected documentary films, literature (poetry, novels, narrative history history, drama (ancient and contemporary), personal and formal essays, narratives of patients, caregivers, and healthcare professionals, myths, legends and folklore, and the performing arts of dance, music ( vocal and instrumental), dramatic performances, culinary arts of the world’s cultures, and nature itself.

The following essays were chosen from the larger collection of columns that I have authored over the past 25 years, in part, to persuade readers of the importance of art and literature to nursing education and practice.  Others were chosen because they immediately and directly affect positively the health and healing of individuals with certain chronic conditions.  Students and practitioners from the Brazil, Columbia, Canada, France, Germany, Italy, Portugal and the United States have corresponded with me regarding those articles which describe the influence of art to improve the lives of those with chronic conditions.

It seemed to me back in1991 when I wrote that first column (and still does today) that the crucial questions remain the same: How do nurses continue to evolve their understanding of the human condition, their aesthetic perceptions and their appreciation of the fleeting intangibles of human existence which may seem insignificant compared to the scientific data they are accustomed to relying upon?

This collection of essays reveal the power of dance to enrich the lives of people living with Parkinson’s Disease; the power of art and music to transform the lives of people living with dementia; the power of cinematic art to illustrate the serious consequences of moral mediocrity; the power of Rodin’s sculpture to instruct and guide us in perceiving visual clues to emotional states; and the power of Melville’s Bartleby to help us comprehend the elusiveness of the human will.

In all of these essays there is a central truth that Rodin, in particular, teaches us which he called “fugitive truth.”  It is his aesthetic grasp of the state of soul at the moment of execution of a drawing or sculpture.

“Character is the essential truth of any natural object, whether ugly or beautiful; it is even what one might call a double truth; it is the soul, the feelings, the idea expressed by the features of the face, the gestures and actions of a human being, by the colors of the sky, the line of the horizon.”                 Auguste Rodin

*Nursing and the Arts columns are published in Clinical Nurse Specialist: International Journal for Advanced Nursing Practice