There is a Time for Healing

By Claudia Stahl

October is Breast Cancer Awareness Month.

But anyone who struggles with a serious illness soon learns that a vast ocean separates "awareness" from intimate understanding. It is in trying to describe the illness experience that so many people living with the disease fall into a void of frustration and despair; suffering, they find, has a language all its own.

A Time for Healing, (CHESS Publications Inc., 1997) by Valerie Hodge-Williams, MA, PT, voices those feelings in the form of poetry. Her poems chronicle her journey with breast cancer from diagnosis to recovery. Collectively, they are about healing--an experience to which any human being can relate.

The book is illustrated with the photography of Madelaine Gray, MPA, OTR, who worked for many years as a clinician and many more in management, both for the AOTA and the former AOTCB. In 1986 she turned her hobby of photography into a business.

Gray was intrigued when Betty Cox, COTA, president of CHESS, approached her about providing
photography for a poetry book about breast cancer. But when Hodge-Williams read the poems aloud, "It was like being struck by a bolt of lightening," said Gray. "Each poem had a unique drama to it. I was mesmerized by them."

On the pages of the book, the visual and written images meld into a singular language. "The book really opened my eyes in terms of the deep-felt loss, grief, anger, hope and mood swings that probably any patient goes through when faced with serious illness or injury," Gray said. "I wish I had read it when I was starting out as an OT practitioner. It would have helped me to have a greater appreciation for the feelings of patients, whether spoken or unspoken."

Breast cancer was not the first life-altering condition to confront Hodge-Williams. In 1971, at age 23, she sustained a brain injury after a fall from a horse. Since then, her emotional responses have remained partially disconnected from her cognition. The therapist is constantly at the mercy of her emotions. A common cold can significantly alter her ability to function, and she cannot tolerate ambiguity.

Some 10 years after the injury, while Hodge-Williams was hospitalized during a bout with meningitis, she composed her first poem--a poem about the experience of dying--that to this day she has no recollection of writing. Writing poems became a regular coping mechanism for Hodge-Williams. "Every time I would reach a crisis I would compensate by writing a poem. I would read the poems again and again to teach myself why I was feeling what I was feeling."

Her cognitive problem almost threatened Hodge-Williams early in her career as a physical therapist. Seeking to escape the barrage of stimuli in the clinic, Hodge-Williams moved to a slower-paced setting--home and hospice care, where she spent the next 17 years of her career. It was there that she began to make what she felt were her most significant contributions as a health care professional.

As a survivor of a permanent disability, empathy became Hodge-Williams' most powerful therapy tool. She began to rehabilitate patients within the context of their lives, an approach that proved highly successful with most of her clients. But what was she missing with the few patients who, for no apparent reason, stopped progressing in therapy?

Hodge-Williams discovered the answer when she embarked on her odyssey with breast cancer at age 38. It's not that patients are unmotivated, but that "their emotional pain is so great, they do not know how to understand it or where to put it," said Hodge-Williams, now 49 years old.

Making matters worse is the fact that people lack language to describe what they are feeling.

Answering "terrible" to the question, "how are you?" doesn't communicate the desire to be healed, the desire to be seen as a success, and the shame that creeps in when recovery is slow; Hodge-Williams' "Circles" does:

In conceit I'd believed I would heal In a line straight and true,
From beginning to end.

I'd endure each sharp facet of pain With such courage and faith
That I'd quickly return to my norm.

But life doesn't relinquish controls to conceit, And I find I have traveled a line
That is curved to a ring.

The end I'd perceived has the feel of the place I began, And I find myself fighting old battles with feelings
I'd thought had been won.

The poetry in A Time for Healing is supplemented with diary-like entries that move the reader forward and explain what is happening. "The final pathology reports came back...as I was making the choice for lumpectomy with radiation," reads an entry dated Tuesday, Sept. 16, in the first chapter. "They proved the tumor to be five times greater...and...there are two different types of cancer in the breast. All along...my only option had been mastectomy."

The book is divided into seven chapters: A Time for Shock; A Time for Pain; A Time for Reaching; A Time for Ambivalence; A Time for Adaptation; A Time for Tangents; and A Time for Reintegration. Through the succession of 60 poems and prose, readers experience the tempestuousness of the healing process, hitting all the high and low points along the way. They mourn the loss of Hodge-Williams' breast along with her and along with her husband of 18 years, in "Together Alone":

I look down. I am nine years old...

My eyes reach for his. Tears fall. His and mine. No longer whole, no longer worthy. He cries not for my loss, but for his inability to protect me from it...

You experience her joy at becoming whole again after breast reconstructive surgery: I fill space again on each side. Look! My spirit soars high in its pride. Let me shout out my secret worldwide: "I am whole!"

And you hear the voice, whispering from the back of her mind, that the cancer could return: I am cured, more or less. Though no one knows which quite for sure. So I live for the hour, I plan for the year, I hope for the best...

Since publishing her book in March, Hodge-Williams has been flooded with mail from people who have battled a wide array of illnesses and obstacles, as well as their loved ones. The verses give the people on the periphery, often left feeling helpless and frustrated at their inability to understand what a loved one is going through, something to work with. The poetry did the same for Hodge-Williams' husband and three daughters. "It takes away the fear of the unknown and makes it clear what is happening. It says, 'this is what you can do and this is what I can do.'"

The poetry also gave Hodge-Williams' doctors an idea of how she was coping with the breast cancer ordeal. All through the process she selected her doctors based on how they responded to her poetry. The medical professionals and staff at Greater Baltimore Medical Center, where Hodge-Williams was a patient, felt so strongly about the importance of her work that the hospital paid for the initial publishing of the book. "Clinicians and patients are the same. The one thing that joins us all...is human frailty," Hodge-Williams said.

When Hodge-Williams reads her poetry aloud to audiences, she sees people opening themselves up. They are crying, laughing and traversing the experience with her. "It's a fascinating phenomenon, intimacy," Hodge- Williams said. "This book allows you to be intimate with yourself. If you can understand suffering, which is a huge part of our lives, you become intimate with yourself. And once you have done that, you can share yourself with others."

Hodge-Williams hopes the themes in A Time for Healing will help readers cope with all types of loss. She wants the book to remove the taboos associated with talking about suffering. Her honesty in talking about the pain of loss has already given one of her three daughters something to work from in coping with the recent loss of her ovary and the threat of future cancer to herself.

"When I give talks, I ask, 'how many people here have taught their children how to handle pain and suffering?' Not one hand goes up. But when we deny children this, we deny them opportunities for growth, so when they get to a difficult event they don't know how to cope with it. We're stumbling through this from generation to generation," said Hodge-Williams.

Hodge-Williams also believes her honesty with her family has procured a heightened empathy in her daughters, the same for budding therapists.

"This lovely book should be required reading for every health professional. I plan to put it on my desk with very special readings that help me remember why I chose my profession," wrote Carolyn Baum, PhD, OTR/L, FAOTA, director of the OT program at Washington University, St. Louis, MO, in commendation of the book.

Gray said the book "gave me an example of how a person can really accept a challenge and work through it, in the face of tremendous pain and anguish. It is very inspirational."

Valerie Hodge-Williams' journey has taught her many things. She has learned to make choices. She never does anything she doesn't choose to do.

"And I never miss a sunset, because I know that I can take a shower tonight, find another lump, and know that there's nothing I can do about that fact. Once you understand that, you're very free. It's changed my life, forever."

This article originally appeared in Advance for Occupational Therapy Practitioners, October 6, 1997.