Nourishing Hope When Illness Seems Hopeless

Discussion in 'Fibromyalgia Main Forum' started by ephemera, Sep 6, 2005.

  1. ephemera

    ephemera New Member

    From today's New York Times. About a new book on cancer, but
    also good for others to read.

    September 6, 2005
    Nourishing Hope When Illness Seems Hopeless
    By JANE E. BRODY
    How can you find hope when your chances of survival seem hopeless? How can you find joy while undergoing treatments that make you miserable and barely able to function? How can you be happy when there seems to be nothing to be happy about?

    These are the challenges faced by millions of people whose illnesses are diagnosed as cancer or other life-threatening diseases. Among them, for nearly a decade, was Dr. Wendy Schlessel Harpham, a Dallas physician. When recurring lymphoma forced her to relinquish her medical practice, she began writing books - including "Diagnosis: Cancer," "After Cancer" and "When a Parent Has Cancer" - to help other patients and their families.

    Dr. Harpham's new book, "Happiness in a Storm," (W. W. Norton, $26.95) is written for anyone facing a progressive or potentially fatal illness like cancer, heart failure or Parkinson's disease. The subtitle sums up its message: "Facing Illness and Embracing Life as a Healthy Survivor."

    After a diagnosis of Stage 3 lymphoma in 1990, Dr. Harpham had eight rounds of treatment, mostly experimental, for her initial disease and six recurrences. Did she worry about dying? Of course she did. She mourned the loss of her medical practice and feared that her three young children would have to grow up without their mother.

    Each recurrence brought her closer to the brink. But a seeming miracle occurred in 1998 after a fourth treatment with a newly licensed monoclonal antibody called rituximab, and she has been out of treatment now for six years.

    Between the often-debilitating rounds of treatment that left her plagued with fatigue, Dr. Harpham lived as fully as possible, writing, attending her children's sporting events and school plays, planning their bat and bar mitzvahs, enjoying each precious day and finding hope under every rock.

    As Dr. Harpham defines it, healthy survivorship does not necessarily mean the patient has been cured of cancer. Patients become survivors from the moment their illness is diagnosed and they remain survivors during treatment and afterward. They can be "healthy survivors" even if they are living with terminal illness.

    Healthy survivorship, Dr. Harpham writes, means "that while getting good medical care you are living your life as fully as possible today, tomorrow and every single day."

    Critical Steps

    Dr. Harpham maintains that healthy survivorship is based on obtaining sound knowledge, finding and nourishing hope and acting effectively. While it is perfectly natural for every patient to want to be cured, she points out that for many people these days cancer has become a chronic disease. They are not cured, but they continue to live. Cure is not the only route to physical healing.

    For most patients, the path to the best scientifically established treatment starts with learning all you can about your condition, the available therapies and their likely consequences, then deciding on a treatment plan and choosing a medical team well-equipped to carry it out.

    Ideally, you'd want a doctor who is empathetic, returns phone calls and provides emotional support as well as good treatment, admittedly a rare combination. Failing that, choose good treatment and seek other sources of emotional support.

    Take into account the doctor's knowledge and experience in treating your disease and his or her availability to see you, whether you can understand the doctor's explanations and advice and whether you are treated with respect and understanding and provided with realistic hope.

    Though it may be tempting to want to stay as close to home as possible, the best treatments may be available elsewhere. Dr. Harpham had to travel several times to California for experimental therapy available nowhere else.

    Patients have many resources for learning about their disease and finding the best treatments. The Internet is awash with reliable sites describing ailments and established remedies. The National Cancer Institute maintains an up-to-date information service (1-800-4-CANCER). There are also reputable Web sites listing clinical trials that are testing new therapies.

    Also important to physical healing is to adopt health measures like good nutrition, exercise, sleep, relaxation techniques and healing relationships that can help you feel better as well as improve your condition.

    Humor helped Dr. Harpham over many rough spots. When her second recurrence was diagnosed on the same day as the first but a year later, she quipped, "I've consolidated my recurrences so that I won't have too many bad-news anniversaries."

    Fear is natural when facing a life-threatening illness or injury. But when fear is front and center, joy is impossible. To help tame fear, Dr. Harpham suggests focusing on factors you can control, like diet and exercise; distracting yourself with activities you enjoy; practicing relaxation or self-hypnosis; participating in a support group; and, if needed, getting professional counseling.

    Among other groups, the Wellness Community, with headquarters in Washington, sponsors free, professionally run support groups, live and online, for people with cancer and their families (call 1-888-793-WELL or check www.wellnesscommunity.org).

    Acknowledging Sadness

    It is also natural to grieve. Sadness about having a potentially fatal disease should not be played down or discouraged but acknowledged. Dr. Harpham said she found it helpful to think, "Today is a bad day" and to allow herself downtime, as long as the time was limited.

    It is also important to find ways to nourish hope, which can improve the quality of your life no matter what the circumstances. Thinking that recurrent disease is necessarily the beginning of the end or that losing a body part or function makes one undesirable can dampen hope. She urges patients to ignore people who express pessimism and hopelessness or who recount tales of others who died of the same disease.

    "When illness strikes, hope takes on new meaning," Dr. Harpham says. "Healthy hope is the belief that you can help improve your situation and feel happier. You can cultivate genuine hope even when you are acutely aware that things are not going well and the likelihood of a good outcome is small. Hope is an ongoing choice."

    Dr. Harpham makes it clear that that choice is yours. Squander the life you have left in misery, self-pity and recriminations, or milk the days, weeks or years ahead for every little thing that can give you peace and joy, however fleeting.

    As she put it, "Cancer gave me today, every day, in a way I'd never known before. Since I no longer take much of anything for granted, everything has an added element of happy surprise - I made it to see this, do that, stay here and go there! The ordinary has become marvelous. Even unpleasant times are less painful, for they are proof that I am still here."

    I am intensely grateful that modern medicine gave Dr. Harpham the opportunity to write a book that will help me, and many millions of current and future cancer survivors, look differently at life's setbacks, aches and pains, and inevitable losses. It is a book I expect to read many times as a guide to the meaning of joy and satisfaction, and the many routes to them, regardless of the turns my life and health may take.

  2. SingFMAway

    SingFMAway New Member

    Thank you ephemera for posting this article. I think this could be a very helpful book for us all! I may have to go get this one.

    Strength, courage and hope,
    SingFMAway
  3. ephemera

    ephemera New Member

    yes, i'm going to check with my local library system to see if they will order it. That way it will circulate among several libraries & among a wide range of people with needs.

    thanks & very best wishes.