Bowl o’ Cherriesbowl o’ cherries

For my 49th birthday last year, Mark rented me a cello. He also gave me a music stand and a beginner’s book. I drew the bow inexpertly across the strings and made a commitment to this hour-glass shaped beauty. Sound waves rumbled up my arms.

The summer passed before I managed to find a teacher and schedule lessons. Everything I’d been doing to coax sound out of my instrument was wrong. I’d been sitting wrong, holding the bow wrong. Even the size of the instrument was wrong. I rented a different-sized cello. And I practiced. Twenty minutes a day.

The more correctly I placed my fingers on the cello’s neck and the more expertly I employed my pencil grip on the bow, the more my elbows and wrists ached. The fingers in my left hand went numb. Joints in my right hand stiffened and swelled in protest.

Though I was in pain, I continued to practice. I learned ecumenical plucking: “Jingle Bells” and “The Dreidel Song.” Kids home on a visit in October asked for a concert, and I obliged. “Let’s hear that again,” they teased.

My sense of loss around the absence of Sam’s power drumming diminished. I was no longer lingering in the hall, recalling Max’s increasingly indifferent, irregular sessions on trumpet. My cello and I, we were making new music memories to fill the Big Empty.

A friend asked me how things were going with the cello. I filled her in, including details of numb fingers and joint ache. Why, she wanted to know, was I doing something that gave me pain?

“I just need to practice harder,” I told her.

“Will you listen to yourself?” she asked.

I knocked off for a few weeks. Sensation returned to the fingers in my left hand. My wrists ached less. The bow lay where I’d left it, its strings slack but still coated in powdery rosin. And I thought.

Or maybe I felt.

I wanted to fill my heart and head with vibrant sound. I wanted to try something completely new. I didn’t want any more pain than I was already experiencing.

So, this past January, I joined a choir. Every Wednesday, I retrace steps I took with my children to our neighborhood public elementary school. I climb the steps to the third-floor music room and slide into a stiff, plastic chair, squeezing in among the altos. The only pain I experience comes from climbing the stairs. That and the times I occasionally pinch my fingers in the metal clasps of the three-ring binder that holds my sheet music. Our brilliant, tart-tongued director warms us up. I take a deep breath and open my mouth. Sound waves rumble through my chest and out of my head. Our improbably named, almost 90-year-old accompaniest — Flossie — plays the first few bars of Morten Lauridsen’s “Lux Aeterna,” and we’re off.

I’m not good, but I’m getting better. I have trouble tracking the line, so I’ve highlighted the music staff in yellow. My counting is often off, so I’ve written in the beats, noticing time signatures, rests, and odd rhythms. I don’t practice, I won’t be in town for the year-end concert, so there’s no public payoff. But I am fully present each week. I join my voice with the rest of the choir and experience the joy of making music.

I need to return the cello to the rental company, since the year-long contract is almost up. In a month, I will no longer punch “49″ into the touch screen on the exercise machine I use at the gym. Fifty. And what have I learned in the first year of empty nesting, the last year of my forties?

To age gracefully has little to do with skin care, hair color, sagging neck, or even productivity. The trick, I think, is to hold onto the dreams that matter most and to be creative and flexible in making them come true.

“Cuba-to-Florida Quest Defeats Swimmer at 61,” the headline reads in today’s New York Times. Diana Nyad, famed marathon swimmer, tried to make her way from Cuba to Key West without a shark cage in one go.  Her shoulder cramped.  She kept swimming. She had an unexpected bout of asthma.  She kept swimming. She began vomiting uncontrollably.  She stopped swimming. Her handlers pulled her from the water, and that was that.

I want to be supportive of pretty much anything anyone does to challenge themselves, but this venture struck me as kinda dumb. But, then, I don’t get mountain climbing, either. So what if you can swim from Cuba to Florida? Or climb K2? Seems like a huge waste of money, plus it’s really dangerous. And you could leave people who love you feeling awful forever if something bad were to happen. Like if you were to die.

In addition to my usual “hunh,” I didn’t respect Nyad’s motives.  She told reporters she was feeling bad about getting old. Or older. Whatever. She announced that “60 is the new 40″ and that she wanted to do something that would prove she was in great shape physically and in better shape mentally than ever. “People my age must try to live vital, energetic lives,” she said. “We’re still young. We’re not our mothers’ generation at 60.” And this: “I’m standing here at the prime of my life; I think this is the prime, when one reaches this age.” I rather lost patience when Nyad counseled to “[b]e your best self.” Didn’t Oprah retire, already?

In yesterday’s newspaper I read about 70+ year olds clamoring for elective plastic surgery. I don’t want anyone discriminating against my saggy old self. But, really, when do I get to let go a little? When can my “best self” admit that it’s not in its prime any more, that it can’t do what it did at 20? When can my “best self” have a bad knee and crow’s feet?

While Lily was hanging out Sunday at Smith College, getting a sense of what it means to attend an all-women’s institution in the 21st century, I was reading Hilary Mantel’s autobiography, Giving Up the Ghost (New York: Henry Holt and Company, 2003). Mantel recently won the Mann Booker Prize for her brilliant, challenging novel about Thomas Cromwell, Wolf Hall. The book so intrigued me that I pulled everything of Mantel’s from my branch library’s shelves. The autobiography was among the haul and proved to be a fortuitous read on this particular trip.

Mantel was studying law in her late teens and early twenties, first at the London School of Economics, then, following her geologist husband, at Sheffield University. She described her disappointment with Sheffield: “one of my tutors was a bored local solicitor who made it plain that he didn’t think women had any place in his classroom.” (153) Mantel’s comment on her tutor’s approach to women’s education is worth sharing:

Some people have forgotten, or never known, why we needed the feminist movement so badly. This was why: so that some talentless prat in a nylon shirt couldn’t patronize you, while around you the spotty boys smirked and giggled, trying to worm into his favor. The birth control revolution of the late sixties had passed our elders by — educators and employers both.  It was assumed that marriage was the beginning of a woman’s affective life, and the end of her mental life.  It was assumed that she neither could nor would exercise choice over whether to breed; poor silly creature, no sooner would her degree certificate be in her hand before she’d cast all that book learning to the winds, and start swelling and simpering and knitting bootees. When you went for a job interview, you would be asked, if you were not wearing a wedding ring, whether you were engaged; if you were engaged or married, you would be asked when you intended to ‘start your family.’ Whether you were celibate, or gay, or just a sensible preplanner, you had to smile and jump through the flaming hoops held up for you by some grizzled ringmaster, shifty and semi-embarrassed as he asked a girl half his age to tell him about her sex life and account for her next ovulation. (153-154)

I wish Mantel had kept her verb tense in the present: why we need the feminist movement so badly. The fight’s not over. Here’s a not-so-subtle statistic I learned during the information session at Smith: at women’s colleges, women hold 100% of all leadership positions. At peer institutions, men hold 90% of all leadership positions. Lily will decide what she’ll decide when it comes to college. Meanwhile, if I had it to do all over again, I’d be inclined to explore women’s colleges with an open mind.

Mantel titled her memoir “Giving Up the Ghost” as a way to refer to the process she went through as she coped with surgical menopause and subsequent infertility. She was diagnosed with endometriosis in her late 20s. Her illness would end her law career, opening the way for her fiction writing but closing her path to parenthood.  ’Twould have been excellent if she’d added in one sentence about the importance of not giving up the ghost when it comes to feminism.

I was predisposed to like Judith Warner’s new book, We’ve Got Issues: Children and Parents in the Age of Medication (New York: Riverhead Books, 2010). I read it and had a visceral, negative reaction. I couldn’t put my finger on what bugged me. Two weeks passed, and I still couldn’t sort out my thoughts. I sat down with the book again yesterday, and now I can explain.

Like the more than 60 families Warner interviewed in We’ve Got Issues, my family has children who have needed medication.  I, like so many of these parents, have struggled to come to terms with the implications of medicating kids for diagnoses that 30 years ago would have gone unseen, let alone untreated. In fact, they did go unseen and undiagnosed in my extended family, and the attendant wreckage and dysfunction have been profound. My mantra concerning medicating children for mental illness has evolved to this: it is far scarier to contemplate what things will be like if the meds don’t work than if they do. Hence my predisposition to read Warner’s book with a favorable eye.

We’ve Got Issues is a combination conversion narrative, memoir, and reportorial expose.  I wasn’t sure how I felt about Warner situating herself at the center of the book, but I thought I understood the strategy.  She was outing herself as a card-carrying member of the opposition, one of the judgmental parents certain that kids these days are helpless pawns. Warner started her project, originally called UNTITLED on Affluent Parents and Neurotic Kids, ready to lambaste “the whole archipelago of therapy and tutoring and labeling and medication” (7). She was prepared to delve into the “social construction of disease,” assuming that overly anxious, ambitious parents were incapable of accepting their children’s imperfections and therefore labelling less-than-perfect behaviors as pathologies.  She was set to dine out on stories about the way Big Pharma fed these anxieties, making gazillions shoveling anti-depressants and untested anti-psychotics into the mouths of babes.  Warner stepped out of her comfort zone to attend a meeting billed as “Should I Worry?” The stories she heard at this meeting in a church basement made it difficult and eventually impossible for her to continue with her stated project. Here were parents describing interactions with out-of-control children who were destined for disaster. Diagnosis, treatment, and medication were saving lives.

Warner’s conversion moment came when she encountered a sentence the left-leaning French philosopher Jean-Paul Sartre had penned: “Mental illness is the revolt that the free organism in its total entity invents in order to live in an unbearable situation.” She confessed that she’d been inhaling these kinds of ideas for decades:  ”‘Theory’ was like a religion to me” (25). It was time, she decided, to grow up. How could she swallow theory whole when the concrete experience of suffering precluded the validity of the musings of Lacanians and deconstructionists and Marxists? The theorists were engaging in “foolish, inhuman, cruel” thinking, leading her to “deconsruct kids’ diagnoses by analyzing them symbolically” (27). She stopped bashing psychiatrists and started listening to families in the trenches, and she hoped that others sympathetic to left-leaning cultural criticism would join her in her new religious affiliation.  She also hoped that families living through what she was describing would find solace, validation, even community in her book.

Other reviewers have taken Warner to task for her approach. Did she, in fact, have this come-to-Jesus moment, or was the conversion merely a brilliant marketing strategy?  If Warner cared so much about evidence, why did she focus narrowly on family stories instead of digesting scientific research?  You can click here, here, here, and here for generally favorable summaries and reviews.

So, why my hesitation in giving Warner kudos? What’s holding me back, given the fierce struggles my husband and I have fought to help our families? As she set out her research methods, Warner explained that she had interviewed “psychiatrists, psychologists, parents of kids with autism, Asperger’s, ADHD, anxiety disorders, OCD, bipolar disorder, dyspraxia, dyslexia, and sensory integration issues — in short, the range of disorders that I had once dismissed as ‘fashionable maladies.’ (And that I will, from here on, refer to as ‘mental disorders,’ ‘mental health disorders,’ ‘mental health issues,’ or ‘mental illnesses’” (27-28). She makes this elision again on pages 35-37.  Since when has “dyslexia” — an umbrella term covering difficulties with decoding, fluency, and spelling written language — been considered a mental illness? And though ADD and AD/HD were, in the dark ages, referred to as “minimal brain damage,” scientists these days think of this condition as a brain difference and a learning disorder.  Dyspraxia — a neuromuscular problem — a mental illness? Come on!

It’s true that cutting edge researchers are exploring whether many of these conditions are “spectrum disorders.” That is to say, scientists wonder whether there is a genetic relationship between, for instance, ADHD, OCD, bipolar disorder, and schizophrenia.  Families with members who have any of these syndromes are more likely to have children and grandchildren and great-grandchildren who inherit variations of these syndromes. Scientists want to know if similar neurotransmitters or genetic mutations are involved. By conflating these conditions, Warner does a terrible disservice to the field of neurology and to the people — children, in particular — who are living (and living well) with “issues.”

When I returned to Warner’s book, I was struck by her description of the process by which she initially got her book contract for UNTITLED.  Her editor and publisher were so taken by her as a personality and writer that they green-lighted her idea. I am curious to know if they took a similar approach to the manuscript.  Who reviewed it?  Did no one along the way object to Warner’s approach to “mental illness?” It’s hard for me to believe that anyone working in the fields of psychology, psychiatry, neurobiology, or education wouldn’t have challenged this manuscript.

Last: by putting herself at the center of her book, Warner blurred the lines between insider and outsider.  She wanted to maintain distance and objectivity so that she could report stories that might be unfamiliar to many readers.  But she committed the cardinal sin of the outsider who wants to pass, by way of empathy, as an insider.  She made a careless, even harmful mistake that no insider, no one who actually lives with “these kids” and “these issues” would ever make. And while there is much to praise in Warner’s new book, I can’t forgive her. I hope, when the book goes to paperback, she will revisit the construction of her definition and make a few critically important changes.

Two articles in this morning’s newspapers speak to one another — but they don’t know it.  

One is a fascinating piece in today’s Boston Globe focusing on the genetics of an aggressive form of colon cancer. 

Another in The New York Times’ Business section counsels readers how to get health insurance when they’re already dealing with pre-existing conditions.  

The Globe piece highlights genetic research linking descendants of one almost-Mayflower family who suffer from a deadly form of colon cancer.  Scientists combed genealogical archives to piece together the puzzle linking families in New York and Utah.  Now that they’ve isolated the genetic mutation giving carriers a 2 in 3 lifetime chance of developing the cancer, scientists can offer aggressive screening practices in hopes of helping carriers catch nascent tumors before they’ve spread.

The Times piece counsels readers how best to hang onto coverage when they have what insurers euphemistically call “pre-existing conditions,” or medical conditions that existed before application for health insurance.  The definition includes conditions for which patients have sought coverage in the previous six months.  Insurance companies in 44 states may either deny coverage or charge more to those deemed to have a “pre-existing condition” at the time they apply for health insurance.

Most insurance companies — but not all – can’t exclude based on the results of genetic testing. They can, however, deny coverage if applicants actually suffer from the disease for which they’ve been tested.  The thinking, apparently, is that insurance companies don’t want people waiting to sign up for policies after they’ve already become ill. That’s too expensive.  Instead, they want healthy people in their pools.  They are insuring against the potential for future illness.

I suppose some of this makes sense if you squint really hard.  Perhaps these kinds of rules would have been appropriate in the 1930s, when Blue Cross (hospital insurance) and Blue Shield (physicians’ services) were founded.  American health costs were relatively low.  There was no such thing as genetic medicine.  I’m not sure there even was such a thing as a pre-existing condition back then. (I don’t know when insurance companies formulated the concept of “pre-existing conditions” and couldn’t find a history on the web — would be grateful to learn more from those with answers.)

Without a doubt, though, the concept of “pre-existing conditions” makes no sense in the twenty-first century, when advances in genetics change our understanding of health. If, for instance, a person is battling invasive colon cancer, carries the colon cancer mutation identified in the Globe article, and has no health insurance, how is it possible to pinpoint a time when she or he would not have had a pre-existing condition?  The genetic abnormality was there, lying in wait, from the moment of conception. 

I guess this begs an epistemological question.  With many types of illness, knowing what we know about mutations and genetic predisposition, is it still possible to demarcate a before and after with certainty?  Is there just one, long, unbroken line of “condition” stretching back to the original mutant?  If so, how can insurers continue to craft policy based on the concept of “pre-existing” conditions?

For me, this isn’t just an exercise in hypothetical thinking.  I carry the BRCA-2 mutation, conferring about an 80% lifetime risk of developing breast cancer.  I’ve reduced my risk with surgery, but with three teenagers, my worry is not over.  It seems enough to worry about whether or not my kids will be carriers.  It is almost unbearable to have to worry if they will be able to get health insurance because of a genetic predisposition or pre-condition.  I want the Obama administration to bring insurance companies to their knees on this one: no more language about pre-existing conditions when it comes to coverage.  Of course, if we have universal coverage, none of us will need to worry about this concept again.  

I feel like a killjoy when I talk about possible career paths and jobs with my kids.  ”Whatever you pick,” I tell them, “just make sure it comes with health insurance.”  What a terrible way to talk with young people on the brink of hatching plans and dreaming dreams.

I’m glad I haven’t figured out how to use the camera feature on this computer, because, boy, you wouldn’t want to see me.  I still haven’t showered today.  But I have a good reason.

I went to the gym and plopped straight down at my desk.

The desk part isn’t the good reason.  It’s the gym.

An hour a day, each and every day, whether I want to or not.  I’ve redoubled the pledge I made earlier this fall to get myself moving.  After listening to John Ratey, M.D., speak Wednesday night, I knew I had to stick to my resolve.

If you don’t know of John Ratey, go to http://johnratey.typepad.com/blog/.  Ratey co-wrote the best-selling book about ADD, Driven to Distraction, with Ned Hallowell in 1994.  He’s gone off on his own this time, focusing on the importance of exercise in brain function.  He’s especially interested in what happens when kids exercise in particular ways and has developed a program, SPARK, that he’s helping schools implement.

Dr. Ratey used a PowerPoint presentation during his talk.  I can’t get one slide out of my head.  It’s a sketch of the workstation of the future.  Forget the desk and chair.  Instead, put the computer on a platform attached to the front end of treadmill.  Have workers walk slowly throughout their day as they attend to business.  A real office installed these, and its workers’ productivity skyrocketed.  Walkers/workers lost 35 pounds over the course of a year, as well.   Dr. Ratey argues that we need to move to produce all the neurotransmitters that make us smart, focused, and content.

How to make sure my own kids get this much exercise a day?  Max’s soccer season ended Wednesday.  Lily stops bicycling next week.  Sam’s playing tennis on Sundays, but I think he’s only lifting weights twice a week.  Mark bikes to work every day, so he’s definitely in motion, but I don’t know if he’s getting the intensity he needs.  It’s not enough, is it?  It’s not enough for most of us.  How to justify setting aside so much time when everybody already feels so overloaded.

But Ratey’s evidence is irrefutable, and I’m intrigued.  Anybody else thinking about swapping desk chairs for treadmills?

Gotta go.  It’s almost 4:15, and I really need a shower.

There are so many reasons to celebrate President-Elect Barack Obama’s victory last night: what it means for upcoming appointments to the Supreme Court, the significance to our ability to interact with the rest of the world in positive ways, exiting gracefully from Iraq and bringing home our troops, the implication that the best (not just any) person can win regardless of race or gender, the warm fuzzy feeling of the country coming together in a lovely shade of blue. Yes, all of it.  All of it.  It’s so exciting.

And then there’s my knee.

My right knee, specifically.  

When I saw the knee specialist last spring, he reconfirmed that I have a growing hole about the size of a quarter in the cartilage underneath my right kneecap.  When I put pressure on the knee, bone rubs on bone.  It hurts.  At the ripe old age of 46, I don’t hike or backpack, play tennis, run, or do anything that causes impact to my right knee.  Instead, I get in the pool for my own water aerobics routine, ride a recumbent bike at the gym, and do lots of stretching.  More than you wanted to know, but there you have it.

I asked the knee guy if I’m a good candidate for knee replacement surgery.  Or maybe a partial replacement.  Not really, he told me.  For this particular problem, doing nothing is about as effective as undergoing invasive surgery.  I told him I felt a little helpless, given the lack of options.  

The knee guy leaned in.  ”Your best bet?  A new administration.”

Hunh?

Research scientists have successfully manipulated stem cells in non-human animal models to re-grow cartilage after trauma.  Whether the process will work in degenerative disease is still an open question.  And whether it works in humans is a matter of electing a presidential administration open to regulated stem cell research.  Might take three or four years of trial and error, but, he said, there’s an excellent chance that an injection of engineered stem cells would patch the cartilage hole.     

Along with all those other people out there hoping to get fixed — those harboring identifiable genetic mutations predisposing them to disease, those hobbled or stilled from injury or deterioration — I’m nursing a bad case of hope today.  Maybe the knee guy is right.  Maybe with a new administration, there’s a chance for a fix.

My right knee offers thanks all who voted Democratic yesterday.  It would bend deeply in gratitude if it could.  But it can’t.  And that’s the point.