Category Archives: Stories of Hope

The Medical System Gave Up On Me

In 1995 I woke up from routine heart valve surgery with the left side of my body paralyzed from a stroke caused by the surgery itself: A tiny piece of tissue had broken away from the valve, traveled through blood vessels and lodged in my brain, blocking the flow of blood with its essential supply of oxygen to the neurons that controlled movement on my left side. I was 43 years old, married, with two young children.

If I had obediently followed the prescribed role of stroke patient in the world of conventional medicine, I would be an invalid in a wheelchair today. Instead, I am back at work as a medical journalist, paying taxes instead of collecting social security.

I recovered because “adapting” to my disability — which is what the insurance company doctor (who had never met me) told me to do after two months of occupational and physical therapy — was not an acceptable option for me. I didn’t want to buy shoes with Velcro, buttonhole fasteners or devices to hold a tomato steady so I could slice it. I didn’t want to walk with a cane or use a wheelchair in the airport. And I certainly didn’t want to spend valuable recovery time learning to use adaptive devices.

During my recovery, the health providers whom I found most helpful were those who recognized the devastation and despair that I felt as the result of this physical calamity. They saw me not just as a patient, but also as a wife, mother, writer and even amateur musician. In their understanding I found the encouragement, strength and hope that I needed to fight back to recovery.

The doctors I found least helpful were those who saw me not as a whole person, but rather as a “stroke patient:” These included the neurologists who shrugged and said “wait and see” when I told them that they must be wrong: I needed my left arm and I needed to be able to walk; and the heart surgeon who breezed into my hospital room just long enough to say, “Sorry you stroked, but heart-wise you’re fine.”

I quickly learned that while the advances of modern surgery can save your life, the conventional medical system — along with the insurers who pay for it — is not set up for full recovery.  The goal of the system was to get me out of the hospital or rehabilitation facility and send me home. What happened after that was up to me. The insurance company doctor (the one who never met me) told me that I had “plateaued,” which meant that while I had made progress in physical and occupational therapy, there would probably be no further improvement. I was at an impasse and additional intervention would be counterproductive (not to mention expensive).

As a patient, it feels as if the health insurers and many doctors want us to accept and “adapt” to our disabilities — whether we are recovering from a heart attack or stroke, suffering from chronic illness or pain or trying to manage the difficulties of growing older.  It is easier to prescribe pills and adaptive devices than to help us take responsibility for our bodies and our health.

I chose to fight my way back to recovery, and this is a tough thing to do for those of us who are accustomed to seeing our doctors as omniscient beings who control our health.  I learned about methods of healing outside of mainstream conventional medicine,including Traditional Chinese Medicine, chich has used acupuncture for thousands of years to treat stroke patients . Yoga, from the equally ancient Indian Ayurvedic system of medicine, gave me strength, balance and peace of mind. The Alexander Technique — a powerful system of movement education — taught me to use my body with less effort and reduced pain. Pilates exercise coaxed my weakened muscles back to work and craniosacral therapy restored my body’s natural rhythms.

I was fortunate: I had the will, the family support, the research skills and the financial means to pursue unconventional healing methods. Fighting the system is much harder for those who don’t have the money, the knowledge of alternative therapies or the emotional strength to keep up the lonely struggle for recovery.  Too often, such people live with pain, disability and despair.

Doctors must understand what illness means in the lives of their patients. They must use their positions, their authority and their words wisely. They have the power to heal, but they also have the potential to destroy hope and, along with it, the chance to recover.

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Filed under acupuncture, Alexander Technique, chronic illness, Chronic Pain, Doctors, Stories of Hope, stroke, Traditional Chinese Medicine

Strength and Serenity for Women With Cancer

In what appears to be a perfect union between Western academic medicine and complementary/alternative treatment, a Harvard Medical School oncologist is studying the use of acupuncture to help alleviate the symptoms and side effects of cancer treatment for women. Cancer specialist and surgeon Annekathryn Goodman, MD has added acupuncture certification to her many other credentials and now offers this complementary treatment to her patients undergoing cancer treatment at the Vincent Women’s Care Division of Massachusetts General Hospital.

“My personal vision is to create a center for women with cancer that I am calling ‘Strength and Serenity,’ says Dr. Goodman. “My goal is to use complementary modalities, particularly acupuncture, to alleviate the symptoms and side effects of cancer and its treatment that we have difficulty managing with Western medicine.” She has found the treatment helpful for alleviating neuropathy—pain or burning or numbness in hands and feet, as well as nausea from chemotherapy or radiation or from the cancer itself. “Sometimes I treat women before the chemo, which seems to lessen their suffering,” she says. “Acupuncture also seems to help people who are done with their therapy but still have side effects such as fatigue, depression and anxiety as well as neuropathy. So many people are on antidepressants to help them with their stress. Acupuncture seems to help alleviate symptoms.”

Since 2004, Dr. Goodman has been transforming a sterile  Mass General exam room into a tranquil environment for hour-long sessions of acupuncture, which uses tiny needles to stimulate energy or “qi” (pronounced “chi”) points on the body, based on 5,000-year-old methods from Traditional Chinese Medicine. She uses heat lamps to warm up the needles, replaces harsh fluorescent lights with softly glowing lamps, plays soothing music and adds bamboo shoots and fabrics as decoration. “My focus is to balance the patient’s energy, or life force,” says Dr. Goodman, “This treats the ‘root’ of the problem, which then helps to alleviate the ‘branch’ symptom, whether it is constipation, nausea, headache or depression.” (Please see How Do We Heal for more details of acupuncture.)

In a recent research collaboration among the Mass General Vincent Women’s Care Division, Brigham and Women’s Hospital, and the Dana Farber Cancer Center, acupuncture was found to create a modest improvement in white blood cell counts among women undergoing treatment for ovarian cancer. (Cancer treatment tends to lower white blood cell counts, which compromises the immune system.) In a review of worldwide data about the use of acupuncture to alleviate side effects of cancer treatment, Dr. Goodman found that the evidence in support of acupuncture was “helpful but the data was mixed.” “It is hard to unify existing data in a scientific way,” she says. “But there is certainly interest around the world in studying the use of acupuncture to alleviate the suffering of cancer patients.” For her part, she hopes to continue the work of the Strength and Serenity Center to conduct education, research and clinical care not only about acupuncture, but also about other forms of complementary care for women with cancer.

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Filed under acupuncture, Cancer, depression, Healing, Health, Stories of Hope

Story of Hope: “All I wanted to do was hug my children.”

One Sunday morning in February 1997, Jacqueline Miller was standing on a  stool hanging curtains in her son’s room.  The last thing she remembers before she found herself covered in blood on the floor is beginning to get down off the stool.  “We figured out later that I must have lost my balance, “ she says.  “I had apparently hit my face — hard — on the corner of my son’s desk.”  The impact had severely injured her spinal cord in the area of her neck and she would need 150 stitches for the lacerations in her face.

Jackie’s spinal cord injury had transformed her in an instant from an outdoor enthusiast, scientist and mother of two young boys to someone who could not walk, turn a page or feed herself.  The prognosis was grim: Doctors told her that she would be permanently paralyzed below her waist, with minimal movement in her arms and hands.  “One of my doctors told me that the best recovery I could hope for was to be able to eventually shuffle 10 feet down the aisle — with a walker — at my son’s wedding,” says Jackie, adding quickly, “They were wrong.” When the extent of the traumatic injury finally sank in, Jackie was in shock and disbelieving.  “All I wanted to be able to do was hug my children,” she says.  “And I couldn’t even do that.”
Those who know Jackie best describe her resilience and determination, and these two qualities, along with her sense of humor, have helped her reclaim her life. She is back at work “more than” full-time and recently got back from a trip to Rome and Morocco with her husband. Her son called the donkey “Mom’s Moroccan wheelchair.” Read more of Jackie’s inspirational recovery here

— Here are pictures of Jackie on her trip; She had been told she would be  quadriplegic:

donkey-and-me6a-stroll-through-the-forum-with-huw-and-max-rolling1

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Filed under Chronic Pain, Healing, Stories of Hope, Uncategorized