Not Cured, But Healing

Hi All, I wrote this for the PBS website, Next Avenue, and have recently had a number of requests to share it. So, I’ve included the essay here, and a link to the original below. I’m Not Cured, but I Am Healing After years of pain and chronic illness, an author finds relief through breakthrough research on how the brain affects the body. Donna Jackson Nakazawa is the author of the award-winning Autoimmune Epidemic. Her new book is The Last Best Cure: My Quest to Awaken the Healing Parts of My Brain and Get Back My Body, My Joy and My Life. More than 133 million American adults — 1 in 2 of us — suffer from a chronic condition, including autoimmune disease, fibromyalgia, digestive disorders, migraines, back pain, depression, diabetes, cancer and chronic pain. A recent study published in JAMA Internal Medicine found that those of us in our 40s, 50s and 60s are twice as likely as our parents were to suffer from debilitating chronic conditions in middle age. I’m one of those statistics. I’ve spent much of the past decade navigating my life around health crises. Twice I’ve been paralyzed by Guillain-Barre Syndrome, an autoimmune disease similar to multiple sclerosis, but with a more sudden onset and a wider array of possible outcomes. Other diagnoses — low blood cell counts, thyroiditis and the need for a pacemaker — have also complicated my health and my life. When my kids were younger I coped with bouts of being bedridden by turning my bed into a playground, scattered with board games, Legos and books like A Wrinkle in Time and The Lord of the Rings. One day, my son’s grade school teacher sent home a paper in which she’d circled a line he’d written: “My Mom is the most determined person I know. She’s more determined than Frodo.” Above all I longed for a normal, ordinary life, that lovely, irreplaceable, gorgeous mess of moment-to-moment reality — to play hide-and-seek with my kids again, to bandage and kiss a skinned knee while rushing to get out the door to a meeting. I was sure that if I could walk again, tie my kids’ shoes, drive, cook dinner and type, the joy of living would return in high definition. If I could just get back to ordinary life, it would be miracle enough. But I was wrong. Even after I’d regained the strength to haul myself up the steps — albeit by death-gripping the rail — and drive, cook and write, I was different. Yes, I was profoundly grateful, but it still felt like a half-life. A maybe life. One day I found myself lying down at the top of the stairs, exhausted by carrying up the laundry basket. That’s when it hit me: These should be the best years of my life. My time to enjoy my kids, who would all too soon be gone. My most productive work years. But the days were whizzing past. Illness, I realized, had become my joy thief. New Ways to Activate Healing As a health science journalist, I’d authored an award-winning book, The Autoimmune Epidemic, on how modern chemicals were overwhelming the human immune system, contributing to rising disease rates. I’d been working with the chronically ill for years, lecturing to groups and exchanging thousands of emails with patients. I knew how many Americans were suffering, despite having benefited from the best that Western medicine had to offer. Like me, their lives had been saved, but they felt robbed of joy. Recently, I’d been investigating “psychoneuroimmunology,” a new study of how mind states, like anxiety and pain, trigger a cocktail of stress hormones and inflammatory chemicals that damage our immune function in much the same way as environmental chemicals. Research has linked high levels of stress-related inflammatory biomarkers to a greater risk of chronic pain, depression, heart disease, digestive illnesses, Alzheimer’s disease, cancer and autoimmune diseases, including rheumatoid arthritis. On the other hand, patients who practiced meditation, mindfulness, yoga and breath work showed decreased inflammatory biomarkers. Brain-body techniques, like Mindfulness-Based Stress Reduction — learning to quiet the churning mind through yoga, breathing, loving-kindness meditation and noting and naming our moment to moment habits of mind — help us to separate ourselves from our thoughts, calm our nervous system and change our biology. Our worries and ruminating thoughts no longer cause the same inflammatory stress reactions. Almost two-thirds (61 percent) of patients with rheumatoid arthritis who underwent training in this technique achieved at least a 50 percent reduction in pain. I was intrigued by the idea that here was something I could do, without taking a pill or risking side effects, that might help activate the healing potential of my own brain. Could mindfulness, meditation and yoga alter my stress response, brain and cellular activity? To find out, I teamed up with Dr. Anastasia Rowland Seymour, director of Johns Hopkins University’s Program in Integrative Medicine. We embarked on a one-year experiment to see if altering my mood state might shift my inflammatory markers and perhaps even improve my physical well-being. I chronicled the experience in my new book, The Last Best Cure. I wasn’t expecting miracles. I simply wanted to turn off what I’d come to call the “Pain Channel” and tune into the “Life Channel” before the best years of family life were gone. Echoes of Childhood Stress in Adult Illness Along the way, however, something unexpected occurred. I stumbled upon an important new area of research linking what are known as adverse childhood experiences, or ACEs, to a greater likelihood of facing chronic health conditions in adulthood. ACEs include experiencing, before the age of 18, emotional and physical neglect or chronic humiliation, sexual or physical abuse, living with a depressed or alcoholic parent or suffering the loss of a parent to death or divorce. For instance, women who have experienced ACEs face a much higher likelihood of being hospitalized with an autoimmune disorder as adults. Similar relationships exist between adverse childhood

Thank You Readers – The Last Best Cure hit #10 in Bestselling Books in Health Memoir

Thank you readers, I just found out that last night THE LAST BEST CURE hit #10 on AMAZON in BESTSELLING BOOKS IN HEALTH MEMOIR! That made me smile, and I realize I have all of you to thank for spreading the word, one woman, one reader at a time! In gratitude, I thank you.http://amzn.to/1dIIyVd

Talking on NPR about The Last Best Cure

I really enjoyed a great discussion today with Dan Rodricks, the host of the NPR show, Midday, on WYPR, Baltimore’s Public Radio station. Dan is smart, genuine, and asks great questions. We really delved into why I wrote The Last Best Cure, the science behind it, and how I hope it can help readers with chronic conditions. You can listen to the entire show by clicking on the podcast at this link: http://wypr.org/post/last-best-cure. This photo has nothing to do with this show — I am just reposting it here because I like it and it makes me smile!

From Point A to Point A

We all grow up thinking that a successful life is about trying to get from Point A to Point B. From right here where we are to some distant point or goal in the future. And yes, having goals and aspirations is important. That’s why we set so many resolutions in the New Year. But as I spent the holiday with my family and reveled in having our son home from college, and our being all together again, and seeing friends we rarely get to see, I realized that what I am slowly learning — late in life — is how to get from Point A to Point A. From being here to being right here. Letting go thoughts about getting to Point B, wherever it might be. Savoring the very small movement from Point A to Point A.

Two Wise Teachers

I spent this weekend at a two day meditation event with one of my dearest friends, and together we soaked in the amazing wisdom of Syliva Boorstein and Sharon Salzberg, who came together to teach as a duo on this snowy, rainy weekend in Washington DC. My favorite nuggets: Sylvia Boorstein’s teaching, “May I meet this moment fully, May I not complicate it, May I meet it as a friend.” Sharon Salzberg’s teaching: “The most important moment of meditation is the moment you sit down to do it.” And Syliva Boorstein’s teaching about how to handle being in busy, harried family life and not lose one’s hard won peace in the midst of it: “Try not to fall into other people’s states of mind.” I find this really wise as I raise teenagers… My deepest gratitude to these two wise teachers. I am particularly grateful that at the end, I received the joyful gift of a warm hug from Sylvia Boorstein, who was so kind to say such lovely things about The Last Best Cure when it came out last spring. As I told my friend Elizabeth, who is one of those wonderful kinds of friends who always keeps me honest with myself, as I grow older, I hope to become more like Sylvia Boorstein — she pretty much glows with metta. And to please remind me, when I am overreactive and small of mind, by saying, “Remember, you want to glow like Syliva Boorstein.” Sometimes, just to meet someone whom you admire so much, whose teachings you follow, and to see how their presence changes those around them — because their compassion and loving kindness comes from such a deep wellspring the whole room can sip from it — well, that is a teaching in and of itself. Thank you Sylvia Boorstein and Sharon Salzberg (whose fabulous new book is just out, Real Happiness at Work).

Big News Coming! The Next Book!

I’m just about to announce my next book project — which I’ve signed for with Atria/Simon & Schuster. I’m going to be looking for interviewees for this one! So, stay tuned…I’ll be reaching out to you, my amazing, faithful readers. Subscribe to get my blog posts (option on the right) to stay informed and find out more!

The Ones Who’ve Helped us Along the Way

Yesterday I was struggling to manage a few swirling mind states — you know, those fears, resentments and regrets that well up, or at least they do for me. I just could not find any inner compassion for my own life mistakes. My suffering was mind-wrought, and doing me no good, but even knowing all that I could not manage my thoughts. Then I remembered a type of meditation that has helped me get unstuck in the past. It is taught by many but my favorite version is by John Makransky. It’s called “Identifying Benefactors and Receiving Love.” So I got it out again, that tape, as a rescue remedy (you can listen to his free 13 minute audio version at this link). It’s pretty healing stuff. Here’s how a “receiving benefactors” meditation works, in case you feel inclined to give it a try. Makransky asks us to first think of people in our lives whom we might think of as benefactors, those who have wished for our “deep well-being and happiness.”  Often, these are, he says, the people we most liked to be around at earlier points in our lives.  A dear aunt or grandparent, a friend of our parents, a teacher or professor or coach, someone whom it feels good to remember because we knew in our hearts that they wanted the absolute best for us.  We felt safe by their side. Thinking of my Own Benefactors I think of my Dad, of course I think of him. I think of how one day, when I was 11, a year or so before he died, we were sailing. As I took the tiller on that blue-green Chesapeake day, my Dad turned to my mother and asked — despite my buck teeth, my horn-rimmed tortoise shell glasses, my frizzy blond hair that inspired my brothers to call me “lampshade head” — “Isn’t she just so beautiful?”  As if he saw something incandescent beneath my profound gawkiness. Someone who believes we are beautiful, even when we are gawky and awkward, and who knows we need to hear it precisely because we are gawky and awkward, that is a benefactor. I think, too, of my father’s mother, whom we called GranMary. GranMary always called me “my darling girl,” no matter how old I was.  The last time I saw her shortly before her death, she patted my hand between her palms, and, caught in a moment of dementia, asked, “You are going to Jay’s play tonight, aren’t you?”  She was talking about my father, who had been dead for 30 years.  She was reliving one of those buoyant, excited moments of mothering: the opening night of the school play her son had written and directed — albeit half a century after the fact.  “Jay and I have been rehearsing his lines all afternoon!” she said with pride, leaning toward me, our knees touching between the sofa where she sat and the ottoman on which I perched.  “He has his lines down,” she said proudly, patting my knee. I recall how she turned and glanced around the room, as if expecting her son to come through the front door of her assisted living apartment.  How she somehow seemed to know who I was and yet not understand that I was also her dead son’s now grown daughter. “My darling girl.  You are coming to Jay’s play?  Oh, you must!” I wanted to go to my Dad’s play, yes.  See him as a 17-year-old, directing, acting, taking his curtain call via some kind of magical time reversal.  Or see him on any single day of his life – still alive.  But there is no such magical clock.  I think of how much my father’s mother loved him, how it broke her heart to lose her son without warning.  “The worst thing,” she once told me, in her earlier, lucid years, “is to lose your child while you still live.  It’s an unnatural pain.”  How she loved us all.  How she would tell us at the end of every family party or dinner or day, just that: “I love you all.” I think, too, of the aunt who comforted me through the years after my father’s death. My Aunt Nan wasn’t related to me, she was my parents’ best friend and our neighbor. When he died, the summer I was twelve, I began spending Saturday mornings at her house, making pancakes, and school day afternoons climbing the pine trees in the field in front of her driveway. We’d run around in her yellow Volkswagen Beetle; the same one in which she’d driven me to kindergarten seven years earlier — she’d also been my kindergarten teacher. She’d leave surprises for me in the mailbox, knowing I picked up the mail when I got off the bus. One day there was a small toy Leprechaun sitting in the mailbox, his pliable legs and arms crossed, as if he’d been waiting patiently for me. Years later, when I moved to New York, Aunt Nan tirelessly helped me to find my first walk up apartment. She’d moved to Connecticut, and on weekends I’d recover on her couch in the country in front of her fireplace. We often had a cup of tea together as she listened, patiently, dearly, to my stories of work and love in the city. One day I gave her a porcelain tea cup. When she died a year ago, her daughter said she had wanted me to have that tea cup back, and gave it to me. I keep it on my desk beside me and I always think of her when I see it, every single day. I think of my mother’s mother Gammer; how she was there to hold me with open arms the day my mother broke the news to my brothers and me that my dad had died.  I think of the New Year’s Eves I would spend with Gammer well into my twenties if I didn’t have a

My Emergency Mental Repair Plan

Hi All, What a lovely week. On July 17th, I went to speak at the Arlington Central Library in Arlington, Virginia. I just wanted to say thank you to all of you wonderful readers who came out despite the record heat. I was so happy to see you. I loved telling you about why I wrote The Last Best Cure, reading excerpts, and most of all, your wonderful questions and the deep discussion that ensued. Afterward, I was moved by many of the conversations I had with you one-on-one while signing books. As is so often the case, those of you who shared your stories humbled me. The woman with terminal cancer, who told me she was searching for joy “no matter how much time I have here,” and that the book was helping her — that brought me to tears. The woman who told me that the research in The Last Best Cure made her realize, for the first time, that perhaps there might be a connection between the terrible trauma she experienced in her childhood, when she lost her 12-year-old sister in a house fire, and her current autoimmune struggles — that too, made my throat catch. The many people who told me of their deep physical and emotional struggles — with rheumatoid arthritis, scleroderma, and so much else — reminded me, again, of how we all struggle and how we owe it to ourselves to search for joy, healing, well-being, in the face of that suffering. You are, to me, rock stars. So brave in your search for answers that lead to healing. Meanwhile I’ve continued with my “Last Best Cure Virtual Book Club Tour.” Readers have been asking me for quick tricks, things I do in the here and now to help me return to a sense of equanimity, despite whatever stressful situation I might be in. So I wanted to share with you a short list that appears in The Last Best Cure, on page 136. (A number of readers in my recent online Virtual Book Club Tour told me this list was their favorite page in the book!) If you’ve read the book up to page 136, then you’ll fully understand every step I refer to in the short excerpt below. Here goes: When I feel myself becoming overwhelmed I draw upon my newly developed emergency mental repair plan. I do best when I use several of my favorite tricks in sequence to switch my brain from SNS/negative floating brain/Pain Channel to PNS/positive floating brain/Life Channel. It goes something like this: Let out three rapid-fire exhales in the Tibetan Buddhist tradition. Or, three mindful sighs. Rock a little, just for a minute or two. I haven’t read this anywhere, I just came to this one day on my own. A slight back and forth, back and forth. I can’t hold a grudge or fear when I’m rocking. Maybe that’s why we rock children in our loaps, or why we rock on the porch as we age.  Our fears let go their tentacle hold. Roll my eyes just slightly up toward the top of my head as I’m focusing on the breath. I’ve stumbled across this by trial and error as well. When I do a little research on why this brings on a sudden wave of calm what I read makes sense. Rolling our eyes slightly upward triggers relaxation — that’s why when we sleep our eyes roll up toward the top of our head. Touch my fingers to my lips, gently, as I might if I were saying shhhhhhhhh to a small, distressed child. Touching our lips stimulates the parasympathetic nerve fibers that line them. That’s why babies love to self-soothe by breastfeeding, and suckling on their fingers, pacifiers, and baby bottle nipples. Imagine a golden white column of light streaming into my scalp and crown – traveling all the way down through my chest into my belly, touching every cell of my body, moving into my toes and finally shooting down into the ground. If I am not outside, imagine myself in nature. If I am very sad, I imagine the faces of the people who have really, really loved me. Surrounding me. Wishing the best for me. Focus on the sounds that surround me, whether real, or in my imagined scenery. Use word power. Name my habits of mind. Apply balm to the sting. 10.  Come back to the breath. This in breath, this out breath. If necessary, begin at the top and work my way down again. I use these strategies every day, many, many times a day, to return to who I know I really am. To re-arrive at the certainty that I am not my thoughts.    

A Long Ago Story

Hi All, It has been a busy month. My son graduated from high school, my daughter graduated from middle school, I turned in my story for MORE Magazine on women, chronic illness and friendship (I’ll keep you posted on when it will appear — a mega thank you to all of you who participated!), joined in several wonderful The Last Best Cure Virtual Book Club groups with wonderful readers, and took my son with me on a work trip overseas that combined some work meetings and interviews with pleasure. Right before we left, I was cleaning my office in anticipation of starting my next book project (more on that soon), and came across a magazine story I’d written 18 years earlier, chronicling the months after my son was born, when he was suddenly hospitalized at a few weeks of age for a major surgery to correct a life-threatening condition. The story brought back many memories of the stress and terror (if you’ve ever had an acutely ill child, you know what I mean) of those days, and I wept as I read it. I wept shockingly, in a way I do not think I wept during those long days and nights, 18 years ago. As if, for the first time, I could feel my fear, because it was finally safe to experience it, enveloped as it is now by my gratitude, 18 years later, that my son is here, so unequivocally full of life. Rereading the words I’d written, reliving those emotions made me realize two essential things. (You can read a copy of Fortune’s Child below; I apologize if it’s hard to read — it’s a scan of the original — click on each page and then click again to enlarge.) First, it goes without saying how lucky we are that this baby who almost got away is here with us now, that he survived.  And second, as I recalled the fear that reverberated through every fiber and cell of my being during that long year, I wept for something else. I wept for the very young mother I was then. I found myself wishing that my older, kinder, wiser “now” self might beam back in time and sit beside that young woman, comfort her, hold her as her infant son was whisked out of her arms and away to intensive care. This took place, I should point out, for those of you who have read my writings in The Last Best Cure about ACE scores, in the same hospital in which my own father had died when I was a child. It felt like an old record replaying, as I watched helplessly as this person I loved, too, also struggled for his life. I wanted to go back and squeeze my young self’s hand and help her to forgive herself (I felt so certain it was my fault that my son was so sick). And to forgive the whole spinning world, which seemed cruel, unnatural, allowing a child to know so much pain. I wanted to give her a gift and say, Hey, in 18 years, you and this lovely young man will walk the streets of Paris, and you will be able to breathe in deeply, and he will be able to too, and your cells will resonate with that lightness of being that rides in with joy. Oh my legs hurt, and I sometimes tripped on those Parisian cobblestones, and I often couldn’t keep up with my long-legged boy, given my GBS history, as we went from the Musee D’Orsay to the Tuileries to La Fete de la Musique. But he put his arm around me, slowed down, found a cafe where I might rest, and later, on we went. The combination of finding this article, and taking this trip made me realize that although in the past 18 years there has been a whole heck of a lot of the Pain Channel, much time in the hospital, a lot of doctors (many brilliant, as in the attached article), and times when life seemed unbearably bleak, the truth is we just don’t know, can’t know, what gifts might lie ahead. We have to hold onto that — that we just don’t know what good might yet come — in our darkest suffering. Suffering is often replaced by wonder, the Life Channel flickers back on. We are not static, time is not static, pain is not static, even when it feels that way. Currents of joy come again — and it is so important to learn how to really be in that current, when it flows our way. My son’s being here is a miracle. My healing (although not “cured”) from twice being paralyzed and so much else often feels like a miracle. My father’s early death was a tragedy, but my surviving and healing from that, too, is something close to a miracle. I could not have guessed that these things would come to be. We just don’t know what joy is ahead of the suffering. We don’t know. But we know that everything changes. And that includes the Pain Channel transforming to the Life Channel. Below is the rest of that article, Fortune’s Child, written and published in 1995.    

A Thought Challenge

Today I came across a “Thought Challenge” from meditation teacher and writer Jack Kornfield, whose work I so admire. Kornfield talks about separating ourselves from our tightly gripped sense of our “self,” and seeing what happens. Selflessness, Kornfield teaches, is not about seeing “how selfless I am.” It’s about stepping away from identifying everything as “me” or “mine.” Selflessness, he writes, “does not reject our experience in any way. We don’t get rid of anything. The experiences are the same…. All that’s changed is that we have stopped identifying with them….When identification with the small sense of self drops away, what remains is the spacious heart that is connected with all things. The Wise Heart.” I am always in search of my Wiser Heart. So I was drawn to Kornfield’s suggestion to try this practice — to notice what happens when we stop identifying so tightly with our sense of self and me-ness. Here is his challenge: “Try today to study the sense of self. At regular intervals, pause to check in and notice how strong the sense of self is. At what times of day, in what roles or situations is it strongest? How does your body feel then? How do others respond to this? What might happen in the same situation without a strong identification with the self?” So I did try it. I wanted to challenge myself to note in what situations (and, for me, with which people) my sense of self looms strongest. And the exercise proved so profound I felt I had to write about it here, and share what I found. Trying this exercise helped me to have a difficult conversation with a person I often find to be trying in my life — and to handle that interaction with a wisdom and grace I had been unable to find within … until I tried Kornfield’s exercise. The person with whom I was interacting has a good heart but also has what I like to call “Oppositional Conversational Disorder.” Have you ever met anyone like that? I’ve found that whatever I say, this person disagrees immediately, often before my whole sentence is out of my mouth. Call it conversing in a Culture of No. For instance, I say, “I was thinking…” and this person says, “Oh no, that’s not how it works…” And if I say, “That made me sad…” this person says, “Oh no, you shouldn’t feel sad.”  This person is wedded to “no” and “it isn’t” and “don’t” and “but” and “shouldn’t” and argues so reflexively it’s a habit of mind that has permeated their very nature.  But this person is also a good person, a really really good person, just not an easy person to have a meaningful conversation with, because “Oh no” or “Don’t” proceeds every sentence they say. So I tried it. I tried letting go of my sense of me, my point of view, my being right, my… me-ness. As this person’s Oppositional Conversational Disorder reared its head and they said “Oh no it’s not because of…” I took note of how my jaw tightened. They said, “You didn’t” and my upper palette locked down on my tongue. I heard, “You shouldn’t” and a band tightened around my chest. “Don’t do it that way…” The muscles in my thigh tightened. I took a mindful breath. Look how tightly clenched my chest feels, my legs, my throat. I replayed Kornfield’s question in my mind. “What might happen in the same situation without a strong identification with the self?” I reminded my “self” that I am not my thoughts. Indeed, new research tells us that our feelings shift every 90 seconds. I asked myself, Why am I identifying so closely with my sense of self, with having myself be heard and be right — when I don’t even really know what “self” is? When I know my thoughts shift every 90 seconds? If I am not my thoughts, if I am not my ever-changing feelings, including this feeling of irritation and frustration and anger that now threatens to overwhelm me, what is my “self?” And why is my “self” reacting so strongly to what another person is saying that seems to be in judgement of “me” if that self is not real? Gosh, I hope that makes sense. By interjecting the question, I could step back. This was such a freeing experience. I began to breathe. My jaw relaxed. The bands around my chest fell off. It felt so freeing. When I stepped back from that strong sense of self that I had been nursing as I heard “don’t” and “shouldn’t” I felt something else. A bubbling up of awareness. I am not my reactivity. My “self” is something much larger, much wiser. For a moment I had to hold back my sense of inner glee, and keep from laughing out loud – not at my conversational partner, who was still talking, but with the freedom I felt within. I highly recommend trying this. In the midst of your next difficult interaction, especially if it is with someone with Oppositional Conversational Disorder, let go of your tightly held sense of “self” in your conversation. See what happens. Here’s what happened to me. The person I was talking to stopped. They breathed. My oppositional conversational partner just looked at me after ten more minutes of conversation or so and said, “Oh, okay.”  Two words they had never said to me before. To let that strong ID with self go during that difficult interaction changed its outcome. I have so much left to learn.