Another Blog Carnival of Insights About Illness...

How to Cope with Pain will now be offering a monthly pain-blog carnival. Each edition will run during the last wek of the month and will feature that month's "best posts" from featured bloggers, including A Chronic Dose. Definitely check it out, and new bloggers are always welcome to contribute!

Speaking of New Initiatives...

While we're on the subject of taboo-breaking, consider this: Paul Levy, President and CEO of Boston's Beth Israel Deaconess Medical Center (a place I know well) recently started a blogging. Running a Hospital discusses (you guessed it!) issues of health care policy and practice in running a hospital. It is a fascinating read, and is causing somewhat of a stir--how many hospital CEOs do you know maintain a public blog?

He hosted Grand Rounds this week-check it out here.

Another Extension of Medicine and Social Networking…?

I don’t have too many insights on chronic illness this week. I’ve been sick, the malingering, annoying, infection-y kind of sick, and well, there’s really not too much to say about it. It’s just an occupational hazard. Plus, with the book wrapping up soon, the hometown team on a World Series streak, and the upcoming NaNoWriMo, there have been plenty of distractions.

So I’m looking outward with this post, and can’t help picking up the topic of social networking and medicine another time. As discussed here and throughout the medical blogosphere, there are many benefits to the merging of medicine and social networking: Patients can connect with each other and share insights and information and practitioners can exchange tips and resources.

Between Facebook, MySpace, and LinkedIn, there are all sorts of ways for people to connect personally and professionally. It makes a lot of sense to me to have a site specifically designed for physicians, one that allows them to discuss techniques and best practice information and doesn’t require them to use their full names—enter Sermo.com, a Cambride-based social networking site for licensed physicians. After all, as this article points out, doctors are usually more focused on discussing treatment methods than the traditional networking business people do.

Since it launched last year, Sermo has attracted 25,000 physicians. I consider this trend to be largely beneficial—if our physicians are flummoxed by a set of symptoms or want to bounce ideas off of colleagues who specialize in their field, then providing them a space to do this gives the patient the potential for better outcomes.

What’s interesting about Sermo is that it is financed by hedge funds and other companies who have access to the discussions physicians have on the site. This allows them to track trends and controversies in the medical field and the doctors’ names are kept anonymous.

Like many discussions that involve pharmaceutical companies and their interactions with physicians, this interesting financing approach has the potential to become controversial when you add Pharma to the mix.

As reported in this article, drug giant Pfizer recently announced it will partner with Sermo. This arrangement will give the drug manufacturer—which laid off 20 percent of its domestic sales force in 2006—another direct route to reach in the hopes learning more about prescribing preference. Pfizer-affiliated doctors will be able to speak candidly with Sermo users, something that is either smart marketing or seriously worrying, depending on your point of view. Some think it’s a better alternative to swarming physicians with office calls, but others worry about the far reach this latest extension of social networking affords pharmaceutical companies.

So what do you think? As patients, does knowing that a large drug company will have unprecedented access to physicians make you nervous, or do you see it as an inevitable and positive technological step?

In other medical technology news, I came across this tidbit in Newsweek: the Cleveland Clinic has introduced a program called MyChart, which allows patients to access their online medical records through a password-protected site. The hope is that this access will mean better self-care and disease management, and preliminary results are promising: diabetics who used MyChart showed better control of their blood sugar.

At first glance, what Newsweek calls a “taboo-breaking initiative” (and I don’t disagree with that assessment) seems both positive and forward-thinking, harnessing the power of technology to help patients take control of their health. But a discussion in one of my classes got me thinking about the other potential outcome of this—what about those patients who would receive more harm than benefit from unfettered access to their medical records? One example that comes to mind are patients with eating disorders who are too focused on their weight and might get worse if they see numerical evidence they have gained any pounds.

Obviously I’m not sure what kind of safeguards or restrictions on use are in place, and I do think the precedent set by MyChart is a significant one. But in a world where so much can change so quickly, it’s also helpful to play the devil’s advocate now and again—especially when we’re talking about our health.

It's for the Kids...

Something I think about a lot is the idea that as technology advances our understanding of diseases as well as our treatment methods for them, seriously ill children will live longer and hopefully qualitatively better lives.

So what should medicine and society be doing to keep up with them?

I’ll admit I have a special place in my heart for peds patients. A lot about the way this health care system works confounds me, but sick kids? I totally get them. I was fortunate enough to grow up as a patient in one of the best pediatric hospitals in the world, and as an adult I had the chance to work at a community home for the families of long-term inpatients at the same hospital. My work there inspired me to apply for a fellowship that helped support my development of a creative writing program for chronically ill pediatric patients.

So yes, I’m always on the lookout for innovative ways to make children’s lives better.

Enter the Medical Day Care Program (MDCP) at the Franciscan Hospital for Children. According to a recent article, the goal of the MDCP is “providing expert nursing care and educational enrichment to help children with complex medical conditions lead normal lives.” Field trips, arts and crafts, games with friends—these are experiences all children should have, and children with serious medical conditions shouldn’t be left out of them.

The MDCP also accomplishes an equally significant goal: helping the parents and families of these children. Caring for children with serious medical conditions is an incredibly strenuous task, so giving these parents a well-equipped place to leave their children during work hours makes a lot of sense, doesn’t it?

Here's another program that makes a lot of sense: I recently read an article about a new program in Massachusetts that gives palliative support to the families of seriously ill pediatric patients.

As quoted in the story, “We're trying to improve the quality of life and make the process of going through this type of illness more bearable,” said Stewart Landers, who oversees the program at the state Department of Public Health.

I’ve seen firsthand how crucial the support of hospice care is for patients nearing the end of life, and for pediatric patients, the issues are particularly challenging. Typically, someone can qualify for hospice care if they have fewer than six months to live and agree to forgo curative therapies. Palliative care is less common among pediatric patients because their prognoses are less certain and parents don’t want to give up on potential cures. Now, with less of these restrictions and more understanding of the needs of kids and families, hospice care is available for families at various stages of illness.

Though there are marked differences between the programs, common threads remain: sick children require (and deserve) specialized services to make their lives as “normal” as possible, and supporting their families and loved ones is an essential part of that process…and it’s nice to know there are organizations doing something to make this happen.

Triage (And, A Space to Breathe)

Because recent sad events have reached their inevitable end, some respite from the emotional intensity:

“I keep remembering one of my Guru’s teachings about happiness. She says that people universally tend to think that happiness is a stroke of luck, something that will maybe descend upon you like fine weather if you’re fortunate. But that’s not how happiness works. Happiness is the consequence of personal effort. You fight for it, strive for it, insist upon it, and sometimes even travel around the world looking for it. You have to participate relentlessly in the manifestations of your own blessings… It’s easy to pray when you’re in distress but continuing to pray even when your crisis has passed is like a sealing process, helping your soul hold tight to its good attainments.” (260)

(Pause here, and apply to your own life circumstances if you are so inclined.)

The preceding quote is taken from Elizabeth Gilbert’s Eat, Pray, Love. I’m sure you’ve heard of it—according to Oprah, every woman around is reading it. Of course that’s exactly why I approached it with a bit of skepticism—surely we’ve read enough tales of down-and-out Americans traveling to exotic places and uncovering the basic truths of life that set them free from their miseries?—but I really enjoyed the book. There’s a lot to be said for figuring out how to be a whole self before you try to be someone else’s.

Abigail Thomas’s A Three Dog Life, which recounts the life she built after her husband suffered traumatic brain injury, is easily one of the most luminous, compelling memoirs I’ve read. One of its reviewers said something along the lines of it’s impossible to select quotes for it because the entire book is quotable, and I agree with that assessment. Today, however, this particular passage really resonated with me:

I thought I had accepted Rich’s accident, even though I kept putting myself in a place where it hadn’t happened yet … I thought that not accepting meant turning my face to the wall, unable to function. So now today I look up the word acceptance and the definition is “to receive gladly” and that doesn’t sound right. I flip to the back, and look up its earliest root, “to grasp,” and discover this comes from the old English for “a thread used in weaving” and bingo, that’s it. You can’t keep pulling out the thread. You have to weave it in and then you have to go on weaving.” (121-122)

(Pause here, and apply to your own life circumstances if you are so inclined. Call someone you love. Tell them that.)

***
For a unit on professional writing, my students and I have been talking a lot about the concept of triaging and how it relates to health information: If you are asking readers for their time and attention, provide them with something that contains substance. Write with clarity and purpose. Prioritize your information, placing emphasis on the most important facts and streamlining the least essential.

The questions and assertions we’ve discussed are also applicable to blogging, at once a profoundly personal and widely proliferating public genre, and they are things I think about a lot: where to draw the line between being authentic (so important) and lingering in the mundane minutiae of daily life (so overdone); how to balance the privacy of others with the human need to tell a story; how to infuse humor and levity in writing without sacrificing seriousness or scholarship.

I don’t have the answers nailed down, and I know I am not always successful in my attempts to uphold these standards. But in the back of my mind remains the advice an editor once gave me, advice that applies to all kinds of writing and advice I turn to often:

If you do not have something insightful or universal for the reader to take away from your work, then try harder. You can be specific, you can be particular, but always strive to produce something greater than your singular story.

Is there anything more universal and at the same time more intensely personal than grief?

Behind Blue Eyes

One of my grandmother’s favorite stories is this:

She and my mother were visiting me at my first post-college apartment. Though the apartment itself was a complete dive in that charming, no-heat-and-mice way only 22-year-olds can consider charming, it was located in a hip, swanky neighborhood next door to an even swankier cheese shop. Armed with brie, gouda, and mozzarella, the three of us stood at the cash register, patiently waiting for our change. The man behind that counter happened to be an amateur photographer, and he asked to take our picture.

“Three sets of blue eyes, three faces so similar all lined up. Three generations. You can’t deny genetics,” he said as he snapped away. My grandmother blushed and smiled proudly.

She brought that story up several times over the past five years, always marveling at how strangers knew we were linked to each other by our blue eyes. I always wished I’d stopped back at the cheese shop and asked for a copy.

One of my favorite stories of my grandmother is this: She was babysitting the three of us while my parents were away. It was dusk on a cold February night and my brothers were playing street hockey. She and I were in the living room, each holding a thick hardcover book on our laps, completely engrossed. For different reasons, we’d both turned to books at early ages and had never let them go.I looked up and saw we were sitting with our legs crossed the same way on each end of the ottoman, our toes tapping along to the music from the Bose stereo in perfect synchrony. We spent an hour like that, never speaking.

Of the three of us, my grandmother’s eyes are the bluest. A piercing blue, not in an icy or severe way but in an intensely expressive one. My mother buys her Talbots sweaters in all shades of blue—turquoise, periwinkle, navy, royal—to bring out the color in her eyes. Now, in her blue and green johnny and flanked by a blue curtain cordoning off her hospital bed, her blue eyes are startling, especially against her pale face.

My grandmother has always been an intensely private person, and her story will remain private here. I will say, though, that from her earliest years she experienced profound losses, the kind of life-defining losses that either shut you down altogether or recast the boundaries of your survival. She didn’t shut down.

She is reserved but not shy, and her face reveals the depth of expressions she otherwise keeps to herself. A life of the eyebrow, a narrowing of the eyelid, a widening between the lashes, a crinkling at the corners—in a glance, dismay, skepticism, joy, whatever she is feeling, is evident. We often tease her about her “drop dead” look, a glance so fierce and penetrating that as children, we only needed to see it for a second to stop whatever we were doing that she found unacceptable. She can still stop my mother in her tracks with it.

Some say I have inherited that look. My husband will have to confirm this.

After the first stroke, she seemed smaller and frailer. Her eyes seemed bluer. She could speak in coherent sentences, but you could see the strain to locate the right words in her face. She scrunched it up, as if so to say to us, “Do you know how annoying this is?” But she talked, nodding emphatically in the right places and following up with questions of her own. We brought her books and magazines, but for the first time in her reading life, they were left untouched.

The human brain is an uncanny captor. After the second stoke this week, she lost the use of her right side. She cannot speak, but expends huge amounts of effort trying to make herself understood. She shook her left fist in frustration today. “I’m not going anywhere. It’s okay. You can take your time and try again,” I told her. And softer, so my mother did not hear, “Don’t be scared.”

She nodded slightly.

“Every time I see you, Dolls, your eyes are bluer than ever.” I started saying this, using her nickname, in the hospital this summer and then it became our little thing—every visit to the rehab and the nursing home began with it. I tell her this again today, and she blinks at me. She knows.

She no longer has the ability to swallow and cannot take anything, even juice, by mouth, because she aspirates it. If you cannot swallow and you have put in writing you do not want a G-tube, suddenly the timeframe and the options available in it are much smaller.

So it is a period of difficult decision-making, and we talk about what is going on in front of her. He brain will not allow her to swallow or speak, but it allows her to know what is going on. I’m not sure if that is better or worse, because the things we say are frank.

I kissed her head and told her I will be back tomorrow. “I love you,” I said. She met my eyes and held my gaze. “I know,” she told me without saying a word.