Tag Archives: bless

Countdown Reason # 8: How Did We Miss This Chronic Disease Epidemic?

Laurie Edwards book
Laurie Edward's excellent book on the history of chronic illness in America, due out in April

How did we miss the chronic disease epidemic now facing America? And why are we so behind in meeting the needs of the 1 out of 2 adult Americans who suffer from them? I wanted to find out the answer to that question.

So I reached out to Laurie Edwards, author of the upcoming book In the Kingdom of the Sick: A Social History of Chronic Illness in America (due out in April). Laurie teaches writing for the health sciences at Northeastern University. She blogs about chronic illness, health care, and writing at A Chronic Dose.

I asked Laurie, “What has caused us to be so late out of the gate in meeting needs of patients with chronic illness, and in utilizing the new brain body science?

Here is what Laurie had to say:

“By and large, patients with chronic illness still navigate a medical system dominated by the biomedical model of disease, where patients are diagnosed, treated, and dismissed. This strategy is only effective with acute illness; after all, chronic conditions are treatable, but not curable. While many examples of a growing shift from this model exist—more centers with integrative care, or technology that allows patients and doctors to better collaborate in care, to name just a few—much work remains.

Another reason we’re slower to meet the needs of those living with chronic illness is that we get hung up on a limited view of prevention – the idea of preventing illness. For many patients who face chronic conditions, prevention is more about slowing down disease progression.

We need to be realistic about what the chronically ill population looks like. It is tempting to focus more exclusively on conditions like heart disease, diabetes, and lung disease when we think about chronic illness; after all, the seven most common chronic diseases are estimated to cost a staggering $1 trillion annually.  But this is an incomplete picture. Some 50 million Americans live with autoimmune disease, and a disproportionate number of these patients are women. An estimated twenty-five percent of the population lives with chronic pain and again, women suffer in higher numbers than men.  So many chronic conditions are “invisible illnesses”  – and this invisibility shrouds the physical realities that millions of people live with daily.

The gender gap also plays an important role in why chronic disease has been underacknowledged. Research shows female patients’ reports of pain are taken less seriously, treated less aggressively, and they are more likely to be characterized as emotional or psychogenic. Sex-based research into pain is one step. Already, emerging research suggests differences in the ways men and women perceive pain.

Chronic illness is incredibly complex, and these complexities feed into the delay in utilizing new brain-body science.  As you write in THE LAST BEST CURE, for so many patients, Western medicine has done all it can. Patients live with ongoing symptoms, try all sorts of lifestyle interventions and alternative therapies, and wonder if this is as good as it will get. While many recognize a fundamental mind-body connection, the idea that the brain itself could hold the key to healing is an enormous paradigm shift. Hopefully, science can give us more answers, and increased collaboration between patients and provides can help us put those answers into practice.”

I thank Laurie for her response to my question. I think it’s spot on. We’re late to address the skyrocketing problem of chronic illness in America, for all the reasons she cites. We have much to do. I hope that THE LAST BEST CURE helps us to better understand the emerging scientific answers and to put those answers into practice.

Countdown Reason # 15: YES, True

my holding Christian at the waves at Bethany
My son and I when he was two, deciding how far to brave his way into the waves.

I don’t know why I thought of this today. Maybe because as I walked past my son’s room this morning it hit me, ping (really, I guess the word is pang), how empty his room will be when he leaves for college. Standing there, with my hand on the door, I had a sudden flashback. How when he was very little I made up a song to get him to sleep. It’s a little embarrassing but among the lines were these:

“…know this is true, no matter where you go, no matter what you do, I’m going to love you your whole life through. Sometimes you’ll say I love you too much, sometimes you’ll say I don’t love you enough. But no matter where you go, no matter what you do, I’m going to love you your whole life through…”

(Full disclosure here: part of the reason I wrote my own lullabies for my kids was because I really can’t sing. Really. So, I figured, if a song and the tune are mine, I never have to worry whether I’m singing it right or how off key I might be…)

Sometimes when my son (or a few years later, his little sister) was tired, or cranky, or had a scraped knee, he’d give me one of those leg squeezes that toddlers give you when you’re holding them on your hip and they want you to move in a certain direction. And he’d point and say, “rocking chair!”  I was happy to rock in “rocking chair” because sometimes I got tired and cranky too. And I’d sing our own personal Top 10 hit lullaby, “Know This is True.” It was a kind of mom and babe meditation.

But, back to my story. My son didn’t chat a lot when he was a young toddler, though he had plenty of words. He was just… circumspect. When he started really talking he spoke in thinking-out-loud sentences. I remember once, we were in “rocking chair” and near where we then lived workmen were bulldozing a small forest for a new neighborhood. And my son put his hand on my lips and said, quietly, “Mommy I don’t like the sound the trees make when they hit the ground.”

He always seemed to be listening to the world around him, as if reading a book that no one else could see. One day we were in “rocking chair” and I was singing my made up song, “...know this is true…” and he put his fingers on my lips.

“Mommy, how come it’s ‘NO this is true?’  Is it YES true you’re going to love me, or NO true?”

I stopped rocking. It took me a minute to understand what he was thinking in his little toddler brain. And then I got it. He didn’t understand that I was saying the word “know” instead of the word “No.” And he wanted a little clarification. No true, or yes true?

I brought his face up to mine. “YES true,” I remember saying. “YES true, I’m going to love you. YES true, your whole life through.”

I stood there this morning with my hand on the door of my 18-year-old son’s room, as that memory went through me in a hold-your-breath-and-you’re-back-there-again-in-the- rocking-chair whoosh. I think it came back to me, really, because of what I’ve been blogging about this week. Bless, bless, bless. Gratitude.

YES true. That’s how we love the people we love. YES true, your whole life through. How many people can you bless, bless, bless today (in the grocery store, on the beltway) and say YES true to in your own living room?

Countdown Reason # 16: And Gratitude Helps with Pain

I have a good friend, a dear, dear friend, really, who I’ll call “K.” “K” suffers from an autoimmune disease. In the past five years she’s gone from daily injections of a multiple sclerosis drug that packs difficult side effects to taking no meds at all. She carries the most grateful, compassionate outlook of anyone I know.  I’ve watched her devote herself over the years to exercising more, getting a three-wheeled bike when she realized a two-seater wouldn’t work and toodlling around her neighborhood, building a strong social community, and training herself to think, as she puts in, “on the better side.”

I heard an interview on NPR today with an American vet from the Iraq war who just this week had two new arms transplanted onto his torso at Johns Hopkins — in a first of its kind surgery — to replace the two he lost in Iraq several years ago. He’d also lost a leg. He was amazing. The interviewer asked, “How do you feel?” He said, “I was pretty happy before the surgery, my life was pretty good, but yes, this definitely just makes me even happier.”

Think about that. “I was pretty happy before.” Despite losing three limbs in the war. I suspect his transplant surgery has a good chance of succeeding. Gratitude is not only good for our relationships, it also helps with healing. Studies show it helps us to better deal with pain, suffering, illness, grief and loss. Patients who keep a positive mindset prior to even a relatively simpler surgery, such as total knee replacement surgery, and who “recognize within themselves the ability to ensure that things will be okay,” say researchers, consistently report less pain and disability after surgery and recover faster.[i]  Older people who have a positive take on life are less likely to fall – suggesting that the risk of falling among the elderly is tied to one’s view of the world.[ii]

There are dozens of studies like this. We know it’s true. So why is it so incredibly hard to live, as my friend “K” would say, “on the better side?” I write about that too, in The Last Best Cure. What’s getting in our way. And really, how to get out of our own way.

———–

[i] Public release date: 17-Feb-2011.  Healthy lifestyle, positive attitude can help improve patient outcomes.  American Academy of Orthopaedic Surgeons. [ii] BMJ 2010; 341:c4165 doi: 10.1136/bmj.c4165 (Published 20 August 2010) Determinants of disparities between perceived and physiological risk of falling among elderly people: cohort study, Stephen R Lord, professor et al.

Countdown Reason # 17: Grateful at Home

holding hands with Zen in the woods
I like holding my husband's hand. Maybe that's another way of showing appreciation, like a hug. When we feel quiet, and have no words.

A new study in the Journal of Personality and Social Psychology evaluated the relationship between how much partners felt appreciated, and how likely a marriage was to last over the years. They found that appreciation and gratitude between two people spirals up or down; the more a partner shows gratitude, the more their partner shows them appreciation, and so it goes, back and forth, improving the relationship over time. (I don’t really need to describe the downward spiral do I?) Likewise, the more appreciation you show to your partner, the more likely you are to feel that your own needs are being met.

This makes perfect sense to me.  A decade-and-a-half-ago, I worked closely with psychologist and mathematician John Gottman, PhD, who ran what was known as the “Love Lab” in which he observed couples interact. Gottman could predict, almost flawlessly, who would be divorced in five years, ten. His main litmus test: how many positive comments did each partner make for each negative one? The magic number was 5 positive comments to each negative one. Below that ratio, relationships start to break down.

Downward spiral or upward spiral — we have a choice. We humans are not static. Either we’re growing in our ability to interact with the world around us with resilience and grace, and becoming more creative, more alive, or we’re reinforcing our bad habits, becoming more stagnant, less alive both within ourselves, and within our relationships.  We reach the tipping point in imperceptible increments — via the split second, blink-and-you-miss-it decisions we make about how we interact with the people we love.

Other research shows that that 5:1 scale works pretty well with everyone. Gratitude is the superglue in the intimacy bond. And we know, as you’ve read in earlier posts, that when we show gratitude, compassion, and bless, we feel much better about who we are.

I’m grateful to my husband for coming out to join me while I was walking the dogs when he pulled in. For stopping to get eggs. For cutting up all the vegetables for dinner. For clipping me two articles from the newspaper. And these were all just in the last hour. I’m going to post this, and then send a copy to him.

Countdown Reason # 19: Why Emotional Memories of Joy Matter so Much

We’ve learned so much in the course of our lives. Math problems, how to punctuate a sentence, set the table, use an iPhone, hit the right buttons on our blog dashboard or twitter (okay, the latter three are still not so easy for some of us!). But can you remember exactly when you learned how to do each of these? Unlikely.

That’s because our brain stores memories in one of two ways. The first is to file away facts we need. The details we depend on to survive, succeed, thrive. These are called declarative memories. We can declare the facts we know.

But the second way the brain stores memories is through our emotional responses —  in the emotional big moments that matter to us most. That’s why I can remember (and I bet you can too) the time the teacher called you up in front of the class and you didn’t have the right answer; the moment a child was born and first placed upon your chest; the minute you got engaged; the time you and your friend were in tears over a diagnosis, a husband, a child; or the joy of finding out you were expecting, or got the big job. Memories that have signficance in some way to you are emotional memories.

When we need a declarative memory our brain usually retrieves it for us unconsciously and we’re not even aware it’s happening. So we can drive all the way to work without even realizing we made all the right turns. And bing, there we are, in the parking lot. That’s why we work so hard with our kids with their math facts, so they have what they need, easy to retrieve, when they go on to algebra or, later, calculus.

But here’s where it gets interesting. Emotional memories are treated by the brain in an entirely different way than are factual (declarative) memories: the part of the brain used to create, retain, store, permanize and retrieve our emotional memories is called the hippocampus. This is also the area where amnesia occurs, erasing emotional memories but not factual ones (which is why patients with amnesia can still set the table or do calculus).

Because the brain stores these two types of memories so differently, emotional memories are so much stronger, and as we get older, we accumulate more and more of them.

This means a few things. A lot of things. But here are the two most interesting to me. If you learn something new in the process of making an emotional association, you’ll retain it a lot longer. If you really care about a topic or issue in your heart, you’ll be able to keep that information and store it and retrieve differently than if you don’t.

But it also means that the things we are doing today that create our emotional memories — good, chest-swelling memories — will be protective LONG into the future. They are like gifts we pay forward to ourselves and those we love. This is really a good reason to reach for joy moments right here, right now, in your day just as it is. Whatever might be happening around you. Joy is a strong emotion, and we all know when we recall moments of joy it’s a healing balm. I think of joy memories as memories we need.

After reading this study today, I’m going to think of how to make a joy memory today. I’ll let you know how that works out on an icy, windy Friday evening in a house with with two tired working parents at the end of the week and two teenagers 🙂

Countdown Reason # 22: This is Hard Work, And We Need Help Along the Way

I am sitting here in an odd position. I am in bed with the flu, but the stomach flu can also mean all sorts of very un-fun things for me with my autoimmune condition. If you know my work you know exactly what I’m talking about.

So I am trying really hard to do something that those of us with chronic conditions are so often challenged to do. Keep my mind in a great place, while I also call various amazing doctors on whom I totally rely.

And this is a conundrum. I’ve written a whole book that has changed my life. Change my brain, change how I feel. We know without a doubt that changing our habits of thought creates a protective biological cascade effect. And we know it is hard work. And that even if our physical health doesn’t shift, guess what, something big inside will.

Everything I write about in The Last Best Cure is hard work, especially when we are ill, or in fear, or in pain.

Catching thoughts, mindfulness, meditative practice, forgiving myself. Breathing into my toes, laughing like a baby, nature bathing and down-dogging and being an eagle.

Letting the darker, more worried thoughts go.

Each of the approaches I have spent a year pursuing requires hard work, focus and attentiveness every day.  Time.  Discipline.  Dedication.  Energy.  Lots of energy.

And that’s the conundrum. I recognize, all too well, how hard this is to do when we don’t feel well or we’re in pain.

And that’s why I wrote the book. I totally get that.

And guess what, studies tell us we can’t do it alone. Sharing our journey helps us in the journey. I’m so excited that in 22 days we’ll be able to do it together. So excited about that. Because we all know that really, there are no quick fixes — and we need help along the way. We are all part of The Last Best Cure community.