“It may seem an unlikely thing to wake up one day feeling joyful and alive, despite so much pain, fear and fatigue. But with determination and dedication, I know it can happen. It happened to me.”
A Book Series
This begins a chapter-by-chapter exploration of a woman’s quest for healing called “The Last Best Cure. My Quest to Awaken the Healing Parts of My Brain and Get Back My Body, My Joy and My Life” by Donna Jackson Nakazawa
I’m doing this because, like many people with ME/CFS, Donna had a severe fatiguing illness for which the traditional medical profession was finding few answers. Frustrated, depressed and with a bleak future ahead of her, Donna started out on a new path that was both inside/outside the traditional medical community to improve the quality of her life and hopefully her health. She gave herself a year. With so many treatments behind her , it was her “last, best cure”.
Her life had changed literally overnight about ten years ago. One day this 30 year journalist with a young daughter was swimming 60 laps in her neighborhood pool; the next day she was paralyzed and unable to move her arms or legs. The turns that life can bring, as we know, are nothing if not astonishing.
Donna Jackson Nakazawa woke up that morning to sudden-onset Guillain-Barre syndrome, a Multiple Sclerosis-like autoimmune disorder. She slowly regained her ability to walk and drive, only to get hit five years later with another paralyzing episode. Despite the best medical care, the second hit was deeper and harder, and her recovery was more tenuous.
She struggled back to a new kind of life: one that included numb feet and hands, muscle spasms, and a flu-like fatigue that never lifted. In Job-like fashion other diagnoses followed: thyroiditis, nerve damage, a clotting disorder, bowel problems, slipped discs, and mysterious fevers. A pacemaker kept her heart on track, and immunogloblulins kept her body (mostly) from attacking itself. But the vigorous athletic young mother was long gone, replaced by a woman who had to lie down on the landing to recover from going up the stairs, who never felt well, and whose life was mostly joyless.
The medical profession kept her alive, but they had few answers. The depression, whether clinical or not, seemed inevitable.
Who This Book is For
Donna’s answer to the question, “Who this book is for?”, is gripping. Walk into any waiting room, she writes, and it’s full of women in their thirties, forties, and fifties. Women have more migraines, more back problems, more irritable bowel syndrome, arthritis, autoimmune disorders, and higher rates of cancer (before age sixty).
The book is for the 133 million people in the U.S. living with a ‘chronic’ (which means ‘incurable’) illness, most of whom are women. It’s for a population that is getting sicker and sicker, with the rates of chronic illness increasing by about one percent a year. It’s for anyone living with a chronic illness that wants to somehow regain their joy.
Two Struggles: An Autoimmune Disorder and a Dark Future
With all the anxiety and worry and pain and fatigue, Donna was living a joyless existence. A medical journalist, her research was telling her that being joyful again could help. It was telling her that the anxiety, depression, and pain, whether ‘clinical’ or not, that comes hand-in-hand with having a chronic illness was having its effects. It was telling her that the increased stress hormones and inflammatory factors that accompanied living with a dark future, of having a joyless existence, were making things worse.
“When we are stressed, worried, or in pain, this complex network of biological messengers … increases the cascade of chemical messengers that break down our cells and corrupt our immune response”
In the midst of her pain and fatigue she was determined to find her joy again and see how it affected her health. She was pretty sure something good would happen. The research strongly suggested it would.
“When we move to a state of joy and contentment … we create … a seemingly invisible shield of positive ‘floating brain’ activity that protects our cells, our immune function and our health.”
She had a big task ahead of her.
Her goal was nothing less than to turn the default setting of her brain from one associated with anxiety, pain, and fear to one with joy and well-being. So she embarked on a year-long course, under a doctor’s watchful eye, of neural re-networking.
What would happen physiologically was anyone’s guess. Was it possible, she wondered, to turn back the clock on some of the physical damage Guillain-Barre had done on her system? Or might it help halt the progression of the illness? At the very least she hoped for feelings of contentment and peace in spite of her physical challenges.
I want people to know that there already exists an understanding as to how we can activate the healing potential of the brain. Understanding how to do this gives us powerful tools, ways to change the messages our brain is sending to our cells and our body. Everyone deserves to live the life they want, and these tools can help us all achieve a greater sense of well-being, and even joy. Interview with Melanie Brevis
The vast and constant turnover our bodies experience gave her hope. Our white blood cells are completely renewed every couple of days, our red blood cells every couple of months, our stomach lining every couple of weeks, and our skin every month. The potential for change appeared to be there.
We’ll see what she did and how she did as we go through the book.
- Check out The Last Best Cure Blog Series
She is the author of the Autoimmune Epidemic, Does Anybody Else Look Like Me? A Parent’s Guide to Raising Multiracial Children as well as a contributor to the Andrew Weil Integrative Medicine Library book, Integrative Gastroenterology, (Oxford University Press, April 2010).
Among others she is the recipient of the 2010 National Health Information Award, the 2012 international AESKU Award from the International Congress on Autoimmunity for her lifetime contribution to autoimmune disease research with the book The Autoimmune Epidemic.
After years of work it’s time to attempt what we’ve never been able to do before – get Congress to force the NIH to double its funding for ME/CFS. Support the historic bill to increase research funding, add new ME/CFS research centers, require the development of a strategic plan, etc.. It will take less than 5 minutes.