Endless Knots

The language of leaving: Passages in Caregiving

A few days after posting about our current predicament, my friend Emily called with urgent news: she'd just heard Gail Sheehy on NPR and I had to read her new book. I picked up Passages in Caregiving a few weeks later. In it, Sheehy, author of the spectacularly successful Passages: Predictable Crises of Adult Life and many other books, speaks of "eight turnings" in caregiving. That post of mine, titled "A turning for J&J," was written in what Sheehy identifies as the first, Shock and Mobilization. (We're now in The New Normal, according to Sheehy, a fair description of how it feels, a phrase that our friend Carole used after the initial crisis period ended.) I'd used the phrase without benefit of having read her book.

I'm struck with many of the words Sheehy's uses, which so perfectly capture this strange land: shock and mobilization, the new normal, the in-between stage, the long goodbye. We've used them all, others have used those same terms with us, all seemingly spontaneously.

There is no lingua franca for this kind of experience. As our friend Tom (Emily's hubby) said, "We don't know how to do this. We're not trained." Yet when you're in it, the descriptive terms fall out of our mouths without our having googled "terms for stages of terminal illness." Yes, Elisabeth Kubler-Ross identified five stages of grief, which are both similar and different. Much as I respect her work and have found it useful, those stages don't really apply to where we are with this.

Sheehy's book is filled with stories, including her own, the 17-year saga of her husband, Clay Felker's, cancer. She was the caregiver; they suffered mightily, including financially to support him; and she's drawn brilliant conclusions, including the one that stands out for me: establish your network and you'll be OK. In our experience, our "friendhood" has meant everything to us.

Buy multiple copies of her book and give them to everyone who's going through what Jeff and I are.

Ah-ha! It was Colonel Mustard in the library with the cupcake

Remember our family-wide bout with the norovirus? Today's Boston Globe ("Norovirus closes Harvard club") carries the news that the same culprit seems to have stricken diners at Harvard's Faculty Club on Easter. I'm going out on a limb here and assuming that the same food service that provided refreshments during our ill-fated, so to speak, visit to a Harvard's Houghton Library in January also serves the Faculty Club (otherwise a lovely place to dine, I might add; last time I was there they served fab sushi). Regardless, I hope they get it this time. Nasty little buggie.

Health care: the novel

I haven't read it so regard this as merely a pointer to Lionel Shriver's new novel, So Much for That, favorably reviewed in today's New York Times ("When Taking Care Taps the Soul, and the Wallet"). It's difficult to write fiction about policy issues and sustain the deep emotional content that novels are supposed to concern themselves with. From Dr. Abigail Zuger's review, it appears that Shriver's familiar tale -- more than one family member enmeshed in impossibly complex medical problems that suck the life right out of bank accounts -- manages to tackle how awful things can be without causing the reader to slam the book shut.

If anyone's read it, please say what you think. Brave of Shriver to take this on. Fiction may be the only way to really break through. Logic certainly doesn't seem to be working all that well.

Kudos to Phyl

Phyl Rubin, half the Boston furniture duo whose commercial ditty (it's sing-song-y and ends with "Bernie and Phyl: Quality, comfort, and price...that's nice") has a way of replaying itself in the minds of us who live in the Hub, went public earlier this week with the fact that she has MS. She's had it for forty years, as she told The Boston Globe's Jenn Abelson in the front-page story, "Bernie and Phyl share a long-kept secret."

Phyl decided to come clean to "speak out and to help end this horrible disease...I’m one of the lucky ones."

Along with many others with serious but for the moment manageable chronic illness, I understand her reluctance to speak about it. People -- you know, all those sentient beings you interact with on a daily basis -- have preconceived notions of illness and it's easy for them to begin to regard people as their disease, which is about as off-putting as it gets. But there's a risk. If "you don't wear your illness on your sleeve," as one friend put it to me, then you may present as healthier as you are. If you lead with your disease, then we're back to the second sentence in this paragraph. Or, if you manage it well, then you might run into the comment that made me want to slug someone: "Do you really have MS? I mean, do you actually have that diagnosis?" As if anyone would pretend.

I applaud Phyl for taking it public and for shining some light on what can be a dark corridor at times. I'm sorry to hear about the symptoms that she struggles with, or any symptoms that any of us struggle with...and I think her talking openly will pay benefits to others.

"Bernie and Phyl: rolling the honesty dice...that's nice."

Listen to Dr. Tom

Fiction Book Club co-founder, Endless Knots neighbor, and, more pertinent to this post, world renowned gastroenterologist Dr. Tom Lamont is the expert in today's Boston Globe Health Answers column, "Are antidiarrheal medicines counterproductive?"

Dr. J. Thomas Lamont, a gastroenterologist at Beth Israel Deaconess Medical Center, says that in serious cases of diarrhea caused by bacteria, there’s some truth to the idea that stopping the symptoms could be unwise, because “there’s a flushing mechanism that promotes the removal of bad bugs.’’ For example, he says it’s best not to take medicines in cases of salmonella or shigella.

Much more at the link. Always such good, sound advice from Tom.

Freda, the "breast whisperer"

Elissa Gootman's full page profile of "The Breast Whisperer" Freda Rosenfeld, the Brooklyn lactation consultant, in today's NY Times, is mandatory reading for nursing mothers, pregnant mothers, fathers of nursing babies, mothers of nursing mothers, and maybe even the babies themselves. I've seen Freda at work. Gold medal performance.

Health care broken? Not here

Photos from Newton-Wellesley Hospital website

I don't know who came up with the brilliant idea but, after my first experience with urgent care last week, I'm awarding them an Endless Knot*. Terrific concept and in this case well executed.

The situation: suspected norovirus strikes family-wide, felling four adults in less than 24 hours. Unknown cause but current suspect is Colonel Mustard in the library with the cupcake, i.e. it's possible someone with the virus had touched something in the food area where three of us indulged in small sweets. But it also could have been the friend who stopped by or the business advisor with whom we met that day or the box of arugula...you get the point. No way to know.

Regardless, it was so bad for one of us that we called the doctor's office, where we were advised to go to "urgent care." I'd never heard of such a thing.

"You mean the ER?"

No, not the ER at all, which, as we all know, only really functions in emergency mode for real emergencies and, in situations like ours, unpleasant and miserable for the sufferers but unlikely to be truly life-threatening, would have meant a rather prolonged agony.

Off to the closest urgent care, in this case, Newton-Wellesley Hospital Urgent Care, located neither in Newton nor Wellesley nor at the hospital but about five minutes from my house in Waltham, Mass. Now how to describe the building? Imagine an old, say, shoe factory that's now occupied by a bunch of different shoe stores--one for kids, one for adults, one for people needing prosthetic shoes. My passenger kept saying, "This can't be it," as we followed the directions and drove up to the old Waltham Hospital, since the biggest sign said "Children's Hospital." Another sign, a bit further along the building facade, said "Beth Israel Deaconess Cancer Center." Then, in smaller letters, between these two parts of the building, I noticed some lettering that said "Newton-Wellesley Urgent Care." Dropped passenger off, parked car...

Although I thought all I was doing was providing transport, I quickly realized that things were deteriorating, point being that two of us checked in, were immediately treated (IV fluids, medications), very kind staff, and four hours later we were on our way back home, all systems stable, fevers in the tolerable range and such.

Astonished at the efficiency, I asked the attending physician, Dr. Barry Ehrlich, about how this place had come to be (it opened the day after Waltham Hospital was shuttered in 2003), remarking on how excellent the service was. I have to hand it to Dr. Ehrlich for honesty. He said that we were really lucky, that often the wait is an hour or more, and that we'd hit it just right. I'm glad and if the place is typically understaffed, then I'll have to take back half an Endless Knot.

Regardless, urgent care centers are a great idea...and helped put our family back on the road to health, uh, urgently.

*Endless Knot--new feature on the blog whereby things that are really great and deserving of awards get one.

MS interview on The Exchange now up!

Take a listen to Ben Kieffer's interview with three of us authors whose essays appear in Voices of Multiple Sclerosis on The Exchange, a program on Iowa Public Radio.

NB: This is the first time I've ever spoken publicly about MS. Please let me know what you think. There's a lot to learn from this show, including Dr. Terry Wahls's scientific research that supports what seems evident to anyone with serious illness: eat right (lots of dark green veggies) and exercise. Her research and findings are, of course, more complex but if you're ill today and looking to get better, start at least with these two sine qua nons.

Merullo: "Letting in light on a disease of darkness"

Roland Merullo's op-ed in today's Boston Globe is required reading for anyone with depression as well as their family and friends, i.e. everyone on earth. He mentions "William Styron’s 'Darkness Visible' and Andrew Solomon’s 'The Noonday Demon.'’’ Having read Styron's brave memoir of his struggle with this illness, I can agree with Roland's assessment that the "popularity of books" like these is indicative of how pervasive the problem truly is. Anyone struggling with depression wants to shake off the demon; any writer willing to put words together deserves our thanks. So, again, Roland, thanks for tromping into such difficult waters.

Go, Geek Doctor! @jhalamka

What a thrill! Our very own fave Shakuhachi player--and doctor/CIO--John Halamka (or see this bio) is the cover boy on today's NY Times Business Page in Steve Lohr's "New Programs Aim to Lure Young into Digital Jobs" as the emblem of nerdiness. He wears it proudly, even posing as the mirror to his brilliant little 10-year-old self winning a science fair.

I've written about John myself (see The Standard), done wacky things with him, recommended him as a guest on BusinessWeek TV, and enjoyed having him join the Margaret Fuller birthday celebrations each year. May 23 is his birthday too and he's made a practice of bringing his flute along.

Which gives me license to republish this picture.

Congrats, John. The world's best example of geekiness, viz., he doesn't even mention the NY Times piece on his blog today.