Chronic illness is one of the greatest public health issues of our time. I wrote In the Kingdom of the Sick in part to explore attitudes towards illness, and the influence of science, technology, and culture on the experience of being a patient. To have a meaningful conversation about the future of chronic illness in this country, we need to understand the complex variables that go into our perceptions of illness and wellness.

What might that future look like? In her new book, The Last Best Cure, award-winning health journalist Donna Jackson Nakazawa brings us on her quest to find out how to awaken the healing potential of her own brain, with the hope of bringing about lasting change.

As a huge fan of her previous book, The Autoimmune Epidemic, and as someone who is very much aware of the state of chronic illness in this country, I asked Nakazawa why this particular book is so important at this juncture. Her response is below:

*    *    *

One of the reasons that I set out to research and write The Last Best Cure is that the numbers of Americans with chronic conditions has been escalating so fast it’s frightening. Today in the United States, 133 million Americans – one out of two adults — suffer from at least one chronic condition. These include back pain, irritable bowel and digestive disorders, arthritic conditions, migraines, thyroid disease, autoimmune diseases, depression and mood disorders, cancer, Lyme disease, fibromyalgia, chronic fatigue syndrome and chronic pain. Experts predict that these numbers, which have been rising steadily by more than one percent a year, will rise 37% by 2030.

And most of us are women. We’re more likely than men to suffer from migraines and lower pack pain, twice as likely to suffer from depression, irritable bowel disease and arthritis. And women are three times more likely than men to suffer from autoimmune diseases including lupus, multiple sclerosis, type 1 diabetes, thyroiditis, rheumatoid arthritis and inflammatory bowel disorders. Ninety percent of fibromyalgia sufferers are women. And women are more likely to suffer from a compilation of chronic conditions than are men. Lupus and migraines. Back pain and fibromyalgia and irritable bowel.

We may tell ourselves that Americans are getting sicker simply because we’re living so much longer. But a new study tells us that’s not the case. Americans of all ages up to the age of 75 live shorter lives and experience more chronic illness during their lives than in other countries. In fact, a recent study — a 378-page report convened by the National Research Council, an arm of the National Academy of Sciences — shows that not only do Americans have a lower life expectancy and higher infant mortality than most high-income countries, we are less healthy throughout our lives than citizens of 16 other wealthy nations.

And every year Americans are becoming less healthy than our counterparts in peer nations around the globe. The U.S. is experiencing a large and widening “mortality gap” among adults over 50 compared with other high-income nations. “What struck us — and it was quite sobering — was the recurring trend in which the U.S. seems to be slipping behind other high-income countries,” says lead author of the report, Dr. Steven Woolf.

We might think that this is due to gun violence, or poverty. But that’s not the case. Even Americans who possess good health insurance, are college-educated and are in upper-income brackets are in worse health than their counterparts around the world — a finding that no one quite comprehends. Woolf puts it this way, “People with seemingly everything going for them still live shorter lives and have higher disease rates than people in other countries.”

I wrote The Last Best Cure for every person who suffers from chronic conditions. We’re chronically ill and we’re getting more chronically ill as a country every minute. I wrote a great deal about why I think that’s the case in my last book, The Autoimmune Epidemic.

The Last Best Cure: My Quest to Activate the Healing Areas of My Brain and Get Back My Body, My Joy and My Life is the natural progression after The Autoimmune Epidemic. It’s about participating in a reversal trend, to reclaim good and healthy lives. As a country, as people, as individuals. Isn’t it time?

*    *    *

Indeed it is time. The Last Best Cure will be out in just a few weeks, and you can check out more of Donna Jackson Nakazawa’s writing on her blog. Be sure to “like” her FB fan page for book updates and events.

We want to share a quick update regarding our search for a living donor kidney match for my father.

First, we want to take a moment to extend our heartfelt gratitude for the tremendous outpouring of support, concern, and generosity extended to us, from sharing our urgent request on social media platforms to sending e-mails of encouragement and much, much more.

We have been taken aback by the willingness of so many people to consider donating a kidney, and by the absolutely amazing response our request generated. Feeling so much support has been an unexpected blessing in all of this. Truly, it is overwhelming. I know my father is incredibly emotional about it and humbled by it—we all are.

While we have not solidified a donor, we remain cautiously hopeful and optimistic we will find one soon, and we are extremely fortunate to have so many people willing to consider doing this. His condition has deteriorated more rapidly than we anticipated so in the interim, he will start peritoneal dialysis as a bridge to transplant.

This whole process takes a long time and inevitably includes setbacks and challenges. We will continue to update you as we can, and we ask for your continued good thoughts and prayers.

Remember that post where I asked you to subscribe using either the feed button at the top right or the box on the right sidebar, where you can enter your e-mail address to receive updates that way?

I did not realize that said box had disappeared into the virtual ether. I contacted The Person Who Knows Much More About Wonky Coding Problems and Disabling Features Than I Do, and everything is fixed now.

#Technologyfail.

So, if you could take a moment and sign up with either of those options, I would really appreciate it.

Thanks, and apologies for any confusion!

After yesterday’s reflections on 2013, I thought it was time for some more pragmatic updates and housekeeping.

I posted this on Facebook but should mention here that IN THE KINGDOM OF THE SICK received a starred review in the December issue of Booklist. It’s an exciting way to start off pre-pub activities.

Want to stay updated on book news and reviews, author events, and related publicity? Make sure you subscribe to this blog using the feed button up top (next to the social media buttons) or enter your e-mail on the right sidebar to receive posts that way. Also, if you’re on Facebook, consider “liking” my Facebook Author Page, where I will post relevant links and updates.

As always, you can find me on Twitter, too.

In addition to book stuff, I have a lot planned for 2013 on this blog, including fresh content, interviews, guest posts, and more, so be sure to stay connected.

At some point every day, often right after I’ve dropped her off at school and am already missing the steady stream of chatter and questions, I say a short, simple prayer:

Thank you for her. Keep her safe.

I said it Friday as I drove away from my daughter’s school, before, and I said it today after I kissed her goodbye.

I can’t keep her behind closed doors, under my own eyes every second, nor would I want to. I want her to feel confident in her independence, to explore the world, to feel secure in her place in this world. I can’t shield her completely from the bad, the hard, the painful—none of us can. But we can help them remember all the good, and how to look for the good, and how to be a part of the good.

I don’t want this to become political, nor do I want to co-opt the grief from the many victims of Friday’s shooting. So much has already been written and said. Like so many, I shed a lot of tears over the weekend. So many tears were for the innocent, and those they left behind, and many were for the stories of bravery, sacrifice, and love the teachers, staff, and responders all showed.

Many of you have likely seen the FB post about Mister Rogers, and how his mother told him to look for the helpers in the midst of horrible things.

I want my daughter to know there are helpers, and I am incredibly grateful for the caring, compassionate educators who allow her to feel secure and loved everyday.

Church was unusually packed this weekend. I imagine drop-offs were more poignant and protracted at schools all over this morning.

Thank you for them. Keep them safe.

Since my daughter was born, we’ve given even more thought to the kinds of rituals and traditions we want to bring into our lives. Some, like the huge Italian Christmas Eve dinner, the new Christmas ornament that tells a story about the past year, the Advent wreath and calendar, and celebrating a second Christmas with dear relatives who live further away, are traditions from both sides of her family that we are all keeping alive. Some we’ve established more recently: we decorate our tree and have grandparents over to join us; we go to morning Mass on Christmas Day and have brunch, just the three of us; we bake cookies for Santa and read The Grinch Who Stole Christmas on December 23rd.

(As an aside, what are your favorite gluten-free Christmas cookies, with bonus points for simple recipes and prep times? We want something that can stand the test of time and be a regular staple of Christmas Eve….)

Some, we’re weaving in this year, and hope to make them permanent traditions. A friend of ours has her children receive three gifts Christmas morning, to honor the gifts the Wise Men brought baby Jesus, and to focus on reverence and love on Christmas, not an avalanche of presents, and we love this idea. (Getting three gifts can be categorical, too—for example, if my daughter asked for books, she would get more than one, but books would be one of the three gifts.)

We check out new Christmas-themed books from the library each week of Advent, some that are appropriately religious for a two-year-old, and some that are a bit more secular, too. (She asked me the other day what God loves and why, so the wheels are turning.) We’re going to dinner as a family on December 23rd , before we come home and make cookies, just to stop and spend time as our little family unit before all the festivities begin, and hopefully that will be a regular thing, too, especially as she gets older and life gets even more busy and complicated.

Without being totally conscious of it, we’ve been moving toward an ongoing celebration of Christmas and family, rather than just the day itself. There is so much going on right now as we wait for my father’s possible transplant that for all of us, simplicity and quality time are more important than ever. It is an emotional process, watching my father’s physical decline every day, while balancing the sadness and fear with hope and optimism that he will get a transplant and have a successful outcome. The food will be delicious and the kids will all love their presents, but really, it doesn’t matter what we end up eating, wearing, or unwrapping. I just want a few minutes of joy—for my father, for all of us.

What are your hopes for this holiday season? What traditions are your favorites? Are you doing anything new or different this year?

As you know from my previous post on family caregiving, it is National Family Caregivers Month, and CaringBridge is helping to spread awareness of the needs of patients and families. I had the chance to ask CaringBridge CEO Sona Mehring a few questions about how CaringBridge supports families in medical crises, and what they are doing this month.

Q. Medical and progress updates are so important, but the simple act of telling one’s story can also be incredibly therapeutic. What makes CaringBridge a unique online space for patients to share their stories?

CaringBridge is truly a “caring social network.” It is free to use. CaringBridge does
not accept advertising and does not sell users’ information. CaringBridge is a
social network providing a social good – with a funding model that allows us to
focus squarely on the people using our service, not on generating profits.

Q. I know CaringBridge Sites that are followed by thousands of people across the
country. What makes these sites such a powerful resource for support and
mobilization?

We literally connect the hearts behind the keyboards. Having a central place to
share news and receive support makes communicating during a health journey
so much easier. Instead of sharing your story over and over, you can create a
blog and post it once for everyone to read. You also have a guestbook full of
messages of love, hope and compassion that you can visit any time of day, any
time you need a boost.

Q. How did CaringBridge SupportPlanner come about? What difference is it
making for patients and families?

This is something our users had been asking for. All of our enhancements are
based on listening to our users and our drive to provide a relevant service.
The SupportPlanner helps patients and families organize helpful tasks such as
bringing meals, rides to the doctor and pet care. When families know those
details are being taken care of, they can focus their energy on what’s really
important, like healing.

Q. I think it’s wonderful that CaringBridge Sites do not include any
advertisements, so the focus is on the patients. How does CaringBridge sustain
this model?

We are a nonprofit funded by donations. Many people who use our service feel
strongly that it needs to be available to others during a health journey so they
give back.

Q. It’s National Family Caregivers Month. How is CaringBridge celebrating those
who devote so much of their lives to caring and advocating for loved ones?

We are helping create awareness of the family caregiver and all the time, energy
and money they spend on caregiving. I also wrote a blog post asking people to share
caregiver tips and advice.

***

Thanks so much, Sona!

(Per the disclaimer in this post, CaringBridge is sponsoring this post.)