More New Years Gifts

This is the second installment of my New Years gifts to you. Thank you for giving me the opportunity to share with you. I hope this New Year brings us all joy and health in a world that knows more peace.

1. Dancing cockatoo
   
2. Flow
3. Paintjam
4. The Jean-Paul Sartre Cookbook
5. Chris Bliss - Amazing Juggler

Medical Blog Awards 2007

Much to my surprise and delight, this blog has been nominated for a Medical Blog Awards 2007 -- Best Patient Blog award - a competition sponsored by Medgaget.

While I have no delusions of winning this award, especially given the wonderful blogs nominated in this category, I am flabbergasted by the inclusion.

Here is the timetable of events. If your are so inclined, please feel free to vote for this blog when that phase of activity is open.:

-- Nominations will be accepted until Monday, December 31, 2007.

-- We will announce the finalists on Monday, January 7th, 2008

-- Polls will be open from Tuesday, January 8th, 2008 and will close at midnight on Sunday, January 20, 2008 (PST).

-- Winners will be announced on Wednesday, January 23, 2008.

Keep your eye on Medgaget for status updates. And thank you for your support and for reading In Sickness & In Health

New Years Gifts for You

This is the first installment of my New Years gifts to you. Thank you for giving me the opportunity to share with you. I hope this New Year brings us all joy and health in a world that knows more peace.

1. Herding Cats
   
2. Free Rice
3. Richard III & Peter Sellers
   
4. Ashes and Snow
5. Opera Guy

American Cancer Society Report: People with Inadequate Health Insurance are More Likely to Die

An article on WebMD tells a not unexpected, but still deplorable, story:

Cancer patients without adequate health insurance tend to face grimmer odds than those with good health insurance, says an American Cancer Society report. The American Cancer Society based its report on information from the CDC and from the National Cancer Data Base.

The report shows that people with no health insurance or inadequate health insurance face four main challenges when it comes to cancer:

• They're less likely to get screened for cancer.
• They're less likely to get counseled about cancer prevention.
• They're more likely to get diagnosed late, when their cancer is harder to treat.
• They're more likely to die from cancer than people with adequate health insurance.

Health insurance isn't the only gap in cancer care. Racial and ethnic disparities also affect cancer outcomes.

Ever since I developed a chronic pain condition, and like too many other pain patients, wandered from specialist to specialist, from one health care system to another, from western to alternative treatments, I have been aware that my white, English speaking, educated, middle class, married, insured status served me well.

I was always taken seriously. No one ever intimated that my pain was not real, even though no cause was ever ascertained. With medium effort, I got referrals to specialists outside my provider network. My phone calls to my care team were returned.

My status ticket got me a seat on most every train I wanted to ride. Even though I knew the system was slanted in my favor and that others were disadvantaged, I took my advantage. I was sick, I was in wretched pain every day, and I was willing to do anything to make it stop. Even during my worst periods, I was aware of this unfairness -- and felt guilty and lucky.

Richard, my husband, also played the privilege card, many times - always for my benefit. And I counted on him to play it well, especially when I wanted insurance approval for seeing a pain specialist at Johns Hopkins or when our mail-order drug vendor was taking too long in delivering my medications.

We talked about everything else, but we never talked about this. I think we were both focused on survival and couldn't afford to let ethics dampen our efforts and our access to resources we both knew others weren't getting. Shame would come later - when I began to climb out of the pain pit.

Now I work with hospital systems that are trying to make a difference, trying to bring health care to all members of their community. Are my efforts helping to make things more equitable? Barely - one mini-micro drop of water on a parched landscape. I still feel guilty and lucky - but I have to do something.

Grand Rounds are up at Trick-cycling for Beginners

Grand Rounds are up at Trick-Cycling for Beginners, a truly wonderful blog written with humor and truth by a psychiatrist in the U.K. She introduces her Ground Round choices with a haiku -- how inventive is that! I am honored to be among her picks.

Popped but not Forgotten

The ultimate stress reliever - you must check this out.

I learned about this through the How to Cope with Pain blog.

I've been tagged

Rosalind at Keep Working, Girlfriend tagged me for the meme challenge. This is the second time within a two week period that I've been tagged. While I am very appreciative, I have to confess, it was really hard to come up with seven more interesting facts about myself without stepping onto some psychological land mines or outright lying.

For readers new to the meme challenge, here are the rules:

1-Link to your tagger and post these rules on your blog
2-Share 7 facts about yourself on your blog, some random, some weird
3-Tag 6 people at the end of your post by leaving their names as well as links to their blogs
4- Let them know they are TAGGED by leaving a comment on their blog

7 Facts About Me:

1. I have never gotten a parking ticket.
2. I am genetically incapable of being late for anything. I usually arrive at least 15 minutes early. For me arriving on time feels like I’m five minutes late.
3. I speak five languages (Spanish, French, Portuguese, Hebrew, English) – two of them badly.
4. I used to ace my college classes by writing class notes in tiny script on index cards and then memorizing each card so that I could recall the visual image of the sentences on the cards during an exam.
5. I play one musical instrument, the guitar, badly.
6. I have been in a women’s group that has met monthly for over fifteen years. I don’t know where or who I would be without these amazing women.
7. One of my best teenage memories is being alone in the house during a power outage in the winter. I made a fire in the fireplace and lay down on the floor next to my dog and read Alice in Wonderland out loud to her until we both fell asleep.

I'm tagging:

I'd Like to Buy a Bowel
Living With Fibromyalgia
Wachter's World
The Daily Headache
Well Soul
Own Your Health

Good Reads: Operating Room Etiquette; Rudeness at the Local Pharmacy; the New Yorker & Checklists in the ICU

Terry at Counting Sheep posted a very intriguing list of the rules of operating room etiquette for staff and patients. Did you know that sleeping patients have the right of way. Stretcher traffic in hallways dictates that the anesthetized patient should always go first? Did you know that as the anesthesia lightens and the patient awakens at the end of the case, all music and extraneous conversations and noise come to an end, to enhance a smooth and quiet wakeup and transition for the patient? And that nothing to eat or drink after midnight on the night before your surgery includes lozenges, juice, candy, gum, and coffee with or without cream.

Sandy at Fighting Fatigue posted a disturbing, but too common, story about how a pharmacist demeaned her when she went to fill her prescription for her pain pills.

And check out the article by Atul Gawande in the New Yorker about a crusade to improve the safety of intensive care through the use of something low tech and ordinary -- checklists.

Sudden Trauma: What's a Couples to Do?

I just got an email from an old colleague. He wrote that his wife, on her way back from posting a letter across the street, tripped and fell, hitting her head on a rock. She was unconscious and had to be rushed to a trauma ICU where they removed a piece of her skull so the blood could drain out. The odds of people surviving the procedure are 50-50. She is part of the lucky 50% and is doing very well.

When I heard this news I was whiplashed by the fact that it happened to her – a vibrant, smart consultant, a vegetarian, a yoga practitioner with a high social and spiritual consciousness. None of these qualities protected her from the chaos that buzzes around us all the time. And, of course, the extrapolation is that we are all susceptible.

As couples, we drift from moment to moment, counting on the illusion of control while ignoring the ubiquity of chaos, so that we can chart our lives with a sense of continuity and security. We plan to buy our first home, to have babies, to find satisfying careers, to travel, to grow old with dignity, and to retire with secure income streams. Some of us may separate or divorce, have boring jobs, and wind up with cats instead of kids. But that is never the script we write for ourselves. And nowhere in our story is there a placeholder for the intrusion of illness or trauma.

I think the best we can do, which is what these friends have done, is to build a loving foundation and to have had enough practice at communicating about the smaller hard stuff, so that when the skies rip apart and the lightening bolts strike, we can still find each other in the storm.

This Week's Grand Rounds at Dr. Geek's Place

Enoch Choi, M. D., otherwise known as Dr. Geek is hosting this week's Grand Rounds. Have a read. Thanks for including me Dr. G.

A Story About Chronic Back Pain and a Relationship Gone Sour: Kate and Frank

This is a true story. All identifying information has been changed to protect confidentiality.

Chronic, long term illness can make couples turn nasty. Almost everyone can rally for the occasional acute situation – a hernia, a broken leg, appendicitis, a cancer diagnosis. But when the acute doesn’t resolve, when it takes hold with its vampire teeth and begins to draw away the life energy, the couple relationship can slowly begin to toxify, and even die.

Frank and Kate settled for each other. Each of them had gone for several hot-blooded rides on the relationship roller coaster where they started with the thrill of infatuation and landed at the finish line broken-hearted. With each ride they took, they became a little bit more panicky and a little bit more cynical. Separately they each decided that any relationship that began with chemistry was destined to crash. The pledged secretly to forswear infatuation and seek stability.

When they began dating there were no sparks, no buzz, but there was compatibility. They preferred to read biographies rather than novels. They didn’t like spicy food. They cross-country skied in the winter and rode bicycles in the spring. They rarely argued about personal matters. The only tension that disrupted their calm surface was that they managed a retail business together and Frank started becoming more dependent on Kate for maintaining the office (which she did not enjoy) while he handled sales (which he did enjoy, and was good at).

Five years and two children into their marriage, Frank started developing back pain. He threw himself into the hands of the medical system. Two surgeries and hundreds of pain pills later, Frank was still in chronic pain and hooked on an array of medications that made him drowsy and impaired his memory. For a while Kate commiserated and compensated. She took over all the household responsibilities in addition to managing more of the business. And she did this while trying to bolster Frank’s increasingly depressed ego.

Frank was indeed in pain, and impaired. He asked Kate to prepare special meals for him and to be the one to chauffeur the kids to gymnastics and soccer. Kate began to think that he was exploiting the “privilege” his role as patient offered him. She continued to maintain him, but her early compassion slowly turned to ice cold resentment. Frank reflexively responded to her growing distance by increasing his neediness. He developed headaches, lost track of customer calls, slept until noon, and took frequent naps. Kate felt trapped because they were locked into their business as their only source of income. She became harsher, and he became more helpless. The relationship had turned nasty.

There is no happy ending to report. Kate and Frank continue in this toxic loop that is their relationship. Kate finds distraction and sympathy with her women friends, and Frank finds the same with his army of doctors. While they each might have some subterranean motives for remaining in this tangle that has become their relationship, neither one has any interest in disentangling and repairing. They carry on.

Do you know a couple who found illness too heavy a load for their relationship to bear? Or who found that illness put too much pressure on already frayed relationship seams?

Grand Rounds on Prudence, M.D. this week

Another great Grand Rounds -- this one hosted by Prudence, M.D.
She introduced me to a lot of wonderful blogs. And I am honored to be included.

Tagged: The Meme Challenge

Okay, I’ve been double tagged for a meme challenge -- by Terry at Counting Sheep and by Sandy at Fighting Fatigue (if you aren’t reading these blogs regularly, you should. They are treasures). I’m not sure about the origins of the meme challenge but I read somewhere that it began in 2005. Who am I to break with such an ancient tradition?

The Rules:
1-Link to your tagger and post these rules on your blog
2-Share 7 facts about yourself on your blog, some random, some weird
3-Tag 7 people at the end of your post by leaving their names as well as links to their blogs
4- Let them know they are TAGGED by leaving a comment on their blog

7 facts about me:

1. I was one of five people who was at the Woodstock music festival who didn’t get stoned.
2. My father and I said, "I love you" to each other for the first time at my wedding.
3. I once rode up in an elevator for 25 floors with George Harrison (of the Beatles, remember?).
4. I climbed to the top of Mt. Kilimanjaro and dove a wall off Grand Cayman island. I learned that I am happiest on top of mountains or 100 feet under water. It's in between where I have the most trouble.
   
5. I have been going to an annual 24 hour science fiction film festival for over 20 years where 300 people sit in a dark theater for 24 hours watching sci-fi films from the 20's like Aelita Queen of Mars ( a silent Russian film about the workers' revolution on Mars); red menace films from the 50's like Invasion of the Body Snatchers (for all of us kids who believed we were adopted into the wrong family), and The Day the Earth Stood Still (the best sci fi movie ever); films from the 60's onward like Dr. Strangelove; 2001 A Space Odyssey; Blade Runner, Buckaroo Banzai, Donnie Darko and on and on and on.......
   
6. My favorite book is Don Quijote by Miguel de Cervantes (which, for literary trivia buffs, is the first novel ever written).
7. I know the words to most of the songs from Richard Rodgers and Oscar Hammerstein musicals, but only the walls of my shower will ever hear me sing them out loud.
   

Here are the blogs I am tagging:

Own Your Health

Dave DeBronkart My Story

Everyone Needs Therapy

Trick Cycling For Beginners

A Chronic Dose

How To Cope With Pain

Nurse Ratched's Place

After Thanksgiving Blues

I can’t help it. Whether it’s tryptophan withdrawal or disgust at eating massive quantities of foods I never eat during the year, I am suffering from post Thanksgiving blues. I wander around the house. Sit down for a few minutes. Get up. Wander a bit. Start a book. Put it down. It’s like I’ve been demagnetized and can’t lock onto anything.

Dishes pile up. Laundry piles up. Richard keeps asking me, “What’s your mood?” “What’s on your mind?” “Are you ok?” My mood is flat; my mind is floating; and yeah, I’m ok, in the global sense. That is, I have nothing to be particularly unhappy about.

This Thanksgiving, we did what we always do – gather with the friends who have become family. Some we see regularly; others once a year around the Thanksgiving table. We talk about life events, travel, favorite books and movies, political opinions, and lawyer jokes. Nothing new. Good friends and good times – a regular Hallmark card.

There’s such purpose in Thanksgiving. In the food, the table, the wines, the companionship. And sometime, during the drive home late Thursday night, the purpose dissipates. The focus shifts to email and meetings and snow tires and telemarketers. The ordinary moves back in.

Richard sees me staring at nothing. He says, “Do you know that when I ask you what your mood is or if you’re ok or just say ‘Hi babe’– that I’m stroking you with words? I’m making contact.” I didn’t know that. I feel better.

Chronic Pain: A Burden Often Shared

The second part of Jane Brody's three piece series on the New York Times on chronic pain looks at the impact of pain on the family. She writes, "Chronic pain is a family problem. When people experience unrelenting pain, everyone they live with and love is likely to suffer."

She suggests family members remind the patient that they are in this together and learn as much as possible about the condition. She also reminds family members to take care of themselves -physically and emotionally.

While this piece does not go into a lot of depth about the complexities of pain and families, the very fact that she is addressing this angle earns her merit.

Kudos again to Ms. Brody

Grand Rounds on Mexico Student

Check out this week's Grand Rounds from Mexico:

http://www.mexicomedstudent.com/

Not only a great variety of posts, but set to music.

Pet Therapy or Sometimes A Human Is Just Not Enough

My days were spent trying to sleep as long as possible. Sleep meant no pain. When I could no longer fool myself into thinking sleep was still possible, I meditated and listened to wellness tapes instructing me that imagining myself healthy was essential to becoming healthy. After ten minutes of these tapes, I began to feel like an impostor, like a weary atheist listening to a sermon hoping that the words alone, without belief, will create the miracle. I got out of bed, starting the day already feeling defeated. The combination of my complete isolation from life along with physical pain and emotional upheaval was not a pretty sight.

My husband, worried over my increasing distance from life, suggested we try pet therapy. I was lost, a refugee cast out from my own body with little sense of direction left. I did not agree or disagree with his plan. I simply let events happen. He spoke with a friend who is a breeder of Cavalier King Charles Spaniels, and she gave us Mina, a ruby-colored beauty with a gift for healing.

Over the next few weeks, as my pain level fluctuated, Mina began to show her powers as a gifted empath. When I sat quietly to meditate, she moved a few feet away, staying in range, but not intruding. When pain or depression forced me to lie down, she snuggled closely, resting her head on my shoulder. Sometimes she scaled my chest with her paws until her head was level with mine. Then she looked me right in the eyes, nestled her cheek against mine, pressed her paws against my neck, and hugged.

One late winter afternoon, after I had been swimming in deeper and deeper pools of pain all day, I finally collapsed to the floor in a wretched heap of tears. My husband was at a loss as to how to help me. He was afraid that this time, I might have sunk too far down and would not be able to pull myself out as I had so many times before. I could see the fear in his eyes, and that only increased my sense of hopelessness.

At that moment, Mina came over and sat in the curve of my body and relaxed against me. No hugs, no licks, no attempts to persuade me to shake myself out of my misery. She just rested against me, composed and patient. In her stillness, she was able to tap into a thread of hope that still endured somewhere deep inside. From that source, I could draw a clear breath. Her calmness reassured me as no human intervention could have.

Over the months, I watched her closely. She taught me what no therapist or body worker or tape on healing could. Mina lived entirely in the present. She slept at the exact moment when tiredness overtook her. She quaked with delight at the sight of a treat being extracted from its bag. She sat patiently while I prepared her food, and then leapt toward the spot where I always placed her dish. Even though she got walked four times a day, each walk was a wonderful new adventure with droves of squirrels to chase and a seething ocean of underground smells to fathom. Sometimes, as we walked, she was so stuffed with exuberance that the excess burst out of her, propelling her into a pirouette. Those rare times when I scolded her, she retreated into a sulk for a few minutes, but then her irrepressible desire to be fully engaged in life returned, and she was once again leaping, hugging, sniffing, and sleeping.

She anchored me back in life as nothing else could. I no longer experienced pain as an endless desert. It was punctuated by the rising and falling of her chest as she slept by my side. When her puppy face, draped by her long, silken ears, was nestled against my shoulder, I felt sheltered. And as the years passed, and I slowly recovered, whenever dark habits drew me back into a state of depression, I whispered her name, “Mina.” The ensuing rhapsodic swishing of her feathery tail reminded me that there were squirrels to chase, bones to unearth, and a life to be lived.

Love and Alzheimer's: How Do Couples Adapt?

An article in today's New York Times describes what could be either a tragic or a blessed aspect of the ravages of Alzheimer's. As the disease erases memory, patients who have been with their partner for years often stop recognizing him/her. For the well partner, this is perhaps the most traumatic aspect of Alzheimer's. Your partner is your mirror, reflecting back to you the shared memories of childbirths, of Hawaiian sunsets, of narrow escapes, of terrible disappointments, and of the thousands of spots of intimacy that dotted your lives together. When your partner forgets you, this mirror shatters, and you have to grow a new sense of self.

The article goes on to say that sometimes the well partner must watch the partner with Alzheimer's fall in love with someone entirely new -- someone who plays a role more associated with his/her current existence. The husband (who suffers from Alzheimer's) of retired Supreme Court Justice Sandra Day O’Connor found companionship with a woman in the nursing home in which he lives. For the patient, this new relationship, often with someone with similar cognitive impairment, is a blessing. This new person fits entirely in the patient's present -- no straining to remember what has been erased; no trying to please someone who is now a stranger. The patient can find a reflection of his/her current identity in the eyes of the new companion -- a reflection that asks no hard questions and accepts what is -- a hand to hold, a smile, a body to lean against.

For the well partner, Alzheimer's paves a path of chronic grief, spread out over years. Yes, along the way, there can be appreciation, love, even new forms of innocence and sweetness. I think it must be both a blow and a relief to see the beloved who has forgotten you finding comfort with someone new.

What do you think?

Everybody Has to Have a Holiday List

Here's mine:

THINGS TO AVOID AND EMBRACE OVER THE HOLIDAY SEASON

AVOID:

1. Watching the movie It’s a Wonderful Life, again
2. Eating the third piece of pumpkin pie
3. Sloppy, wet kisses from people you only see once a year (it’s flu season, after all)
4. Egg Nog (what’s a nog, really?)
5. Listening to radio stations that only play Christmas music, and start on November 1
6. Articles that tell you how to have stress-free holidays
   

EMBRACE

1. Great big hugs from people you’re happy to see, even if it’s only once a year
2. That second piece of pumpkin pie
3. Snow – especially while it’s still white and fluffy
4. Reading your favorite book, again
5. Listening to Nat King Cole sing, “The Christmas Song” as often as you like
6. Sitting in silence and feeling part of something bigger than yourself

This list is also posted on the website But You Don't Look Sick

Grand Rounds on Dr. Anonymous' blog

Check out the collection of health and medical posts on this weeks Grand Rounds, hosted by Dr. Anonymous.

The postings are all lively and diverse, spanning the range from touching to scientific. I am again honored to be included.

And check out Dr. A's other postings. This is a great blog.

Cancer and Emotions: A Recent Study Finds That There is No Connection

''A fighting spirit has its advantages, but one of them is not, apparently, cancer survival,'' said James C. Coyne, lead author of a study from the University of Pennsylvania in which more than 1,000 patients with head and neck cancer were followed. ''We looked at whether exceptionally high emotional well-being or exceptionally low emotional well-being had an effect. We found absolutely no evidence for either.'' They conclude that the power of the mind has been overestimated in the fight against cancer. One commentator added that cancer patients can feel relieved that their negative feelings are not culpable, and that they should not feel responsible for their cancer.

I have lived on both sides of this debate. I certainly want no responsibility for having caused my pain syndrome, but I do want to believe that my emotions, one of the realms in which I can exert some control, can influence my body. Without that, I feel even more helpless -- a kidnapped passenger on a runaway train bound for darkness.

And if their result is valid -- and applies beyond cancer -- how can I explain those nights when I'm laying in bed bent double with pain, clutching a heating pad like it's a life preserver, diving deeper into the pain/fear/constriction/pain cycle - and I ask Richard to stroke my hair and rest his hand on my forehead. That simple act brings me to a different realm of feeling where I am soothed, comforted, connected. I bring that state back to the pain and tell it -"So there! What are you gonna do now?" And not always, but often, it's the pain that cringes and weakens, not me

Floating Island: A Day Without Pain

Richard, my sweetie, and I spent the weekend visiting old friends we haven't seen for over a year. They moved to a new home that has its own name carved on a stone post by the driveway and a pond with a floating island. They're not rich folks. The house was a mess when they bought it. In fact the first rain storm that hit after they moved in cascaded like a waterfall through the roof onto the dining room floor. They worked very hard for two years to uncover, discover, and recover the beauty they saw beneath the mildew and grime in their new home.

During our visit, I had a moment. Richard and I were sitting in a couple of deck chairs by the pond. The early morning New England sunlight glanced off the swirl of fierce red, yellow, and brown autumn leaves, as the wind blew them onto the silent water. I was acutely aware of being here, in this cocoon of beauty, without pain. Without pain was, for a moment, as powerful a sensation as pain had been. To be so sweetly aware of the absence of my enemy, to praise my body for being bigger than pain, to take Richard's hand and know that he was thinking the same thing.......this was a moment.

Our friends will have years of joy in their new home. But my joy, in that one moment, was a life time.

Grand Rounds, again!!

Again, I am so pleased that my posting Chronic Pain: Tormentor & Mentor was selected for this week's Grand Rounds, hosted by a blogger I only recently discovered through Grand Rounds. Terry Freemark blogs at Counting Sheep about tales from the nurse anesthesia front. She is a wonderful writer and tells some shocking and some funny tales.

"Grand Rounds is the the weekly rotating carnival of the best of the medical blogosphere." Each week a host blog picks a theme and health care bloggers submit postings. On Tuesday, the host posts the blogs he/she has selected. Terry's topic was pain and she presents a really multi-faceted look at pain and includes some powerful graphics too.

Chronic Pain: Tormentor and Mentor

Pain was my abusive parent, and I was its intimidated child. My moments became consumed with trying to predict when another outburst would occur. The child learns to watch for the narrowing of the eye lids, the slow, methodical clenching and unclenching of the fists, the smell of gin saturated sweat. I learned to look out for an early morning feeling of bladder urgency or a mild sensation of abdominal pressure that would inevitably become a storm of wild horses rampaging inside my body by late afternoon. And like that abusive parent, pain taught me its rules.

One winter day, I lay stretched out on the bedroom floor beside the wood stove, wrapped in a green fleece blanket and stared out the skylight at a classic New England winter scene – blue sky rippled with white clouds and trees heavy with snow. As I tried to relax into this calming view, I began to feel the telltale signals of an impending spike in abdominal pain. Instead of curling up into my usual fetal position and sobbing, pain compelled me to stand and begin walking. After so many blows over the past nine months of living with chronic pain, my will and my fear were beaten down to the point where I was able to hear my body’s instructions.

I stood in the center of the room and started to walk in one direction. When I reached the far wall, I turned around slowly and walked very consciously and deliberately in the opposite direction. Each step measured only four inches, and I rested for three breaths before taking the next one. After completing thirty laps, I could walk in a straight line with my eyes closed.

I tried this procedure several times a day. As I paced, I focused on each micro-movement of my feet and noticed the subtle, shifting realignments that naturally happened as my weight moved from heel to ball to toes. I noticed the exact moment my foot made contact with the carpet and the tickly feel of the fibers along my sole. I noticed the exact moment my foot lost contact with the carpet and felt a soft pat of cool air.

At some point during each walk, I began to feel my essence dropping down from my mind to inhabit my feet. When this occurred, I felt no pain. My focus was so totally concentrated on the micro movements of my body in motion, that the pain was somehow eclipsed. I paced in this manner for hours at a time. Over the following months, I carved furrows in the carpet with my glacial walks.

My pain was not only my tormentor, but also became my mentor. It shouted when I strayed too far from the lessons it was requiring me to learn. And it quieted when I listened to its urgings. This was pain’s first teaching -- that I acknowledge my body. I had always thought of my body as a convenient suitcase, useful for carting around a collection of bones and organs. I was bound to it but was rarely inside it. Pain brokered these first authentic contacts with my own body – forcing me to move with it, to see it, to be in it.

Grand Rounds: I am delighted this week's host, Paul Levy, chose my post

I am delighted to have had my blog post on The Hope Pyramid chosen for this week's Grand Rounds, hosted by one of my favorite bloggers, Paul Levy, CEO of Beth Israel Deaconess Medical Center. Paul writes with humor, curiosity, intelligence, integrity, and respect about hospitals and health care, along with other areas that catch his interest.

Grand Rounds is the virtual version of medical grand rounds. "Grand Rounds is the the weekly rotating carnival of the best of the medical blogosphere." Each week a host blog picks a theme and health care bloggers submit postings. On Tuesday, the host posts the blogs he/she has selected.

Medical Error : The Human Dimension (article in New England Journal of Medicine)

The October 25 issue of New England Journal of Medicine had an intriguing article entitled “Guilty, Afraid, and Alone — Struggling with Medical Error.” This article was also covered by the New York Times. It focuses on the need to address the emotional repercussions of medical error, not just correct error rates. It’s not surprising that doctors who make treatment errors feel guilty, may fear a law suit, and therefore tend to do the exact opposite of what the patient and family need – they avoid the person and their own accountability and abandon the family when it is most in need of attention.

Families, including partners of the patient tend to feel equally guilty or even guiltier – for not keeping close enough watch on the patient. They also fear further harm from medical staff if they ask questions about mistakes.

Silence begets silence and breeds mistrust. And once mistrust enters into the family/medical system relationship, remediation and reconciliation move farther and farther away.

The article says that apology and disclosure are necessary but may be insufficient. It concludes with: “Perhaps most important, building bridges to injured patients necessitates including them and other patients in the development of solutions.”

I wonder if medical professionals know how very hard it is for patients to challenge them on any point. When was the last time you said, “No!” to your doctor? I was only able to reject a surprise spinal tap because Richard was in the room with me and saw my ambivalence and suggested we postpone. A friend, who is a medical journalist, could barely fend off a posse of young neurologists who wanted to insert wires into her heart to shoot it with electrical current to clear possible clogs. Her husband blocked and tackled for her too.

Yes doctors who make mistakes need to ‘fess up and apologize. But I think patients and their partners can help each other enormously if they can stand side by side and ask tough questions and say, “No” or “Not now” or “Are you sure? Can you please check again?” or “Why do you think this will help? And what is the down-side?” or “What if we waited?” or “How many times have you done this procedure?”

Have you said, "No" to your doctor? What did it take to do that? And what happened?

An Unexpected Conversation in a Waiting Room: The Hope Pyramid

The second pain management clinic I went to, in June 2000, in one of the major Boston, Harvard-affiliated teaching hospitals, was overcrowded and dingy. The tired olive walls of the waiting area made the orange plastic chairs that circled the room all the more jarring. The thick haze of pain coming from the crowd of patients made it hard to breathe. Everywhere I tried to rest my eyes I saw clenched jaws and jiggling feet and silent tears. My chronic pain was at a high point, and I was at a low point in my search for relief. I stopped my own jiggling and clenching for a moment and noticed that the woman sitting next to me seemed unusually serene. Her hands were resting quietly in her lap and her eyes were focused on some invisible point beyond the agitation around her.

To both our surprise, I turned to her and said, “You seem to have a calmness that doesn’t come from overmedication. How do you do it?” To my surprise, she answered, “I always have hope.” She chuckled and added, “I also have chronic back pain and quite possibly a brain tumor.” I asked her to tell me where she finds her hope. I really wanted to know because I had yet again been disappointed by all the treatment options I could fathom to address my mysterious chronic pain condition and was dipping into the muck at the bottom of the depression barrel.

She said that there is always something to be hopeful about, no matter what condition you’re in. When you have health, you can be hopeful about having any of your dreams come true. Once your body fails you, you can rest your hope in your emotions. You can hope that you will still feel love and compassion for others, and for yourself. If your emotions become emptied, you still have your spirit, and you can hope to connect to something greater than yourself, something that has a light to shine on your shadows. And when the spirit is gone, then you have already become something else, and who knows what hopes await you there.

We had this conversation over seven years ago. Thanks to my husband, my dog, and western and alternative medicine, I am relatively pain-free. I never knew what happened to that woman in the waiting room, but I can still hear the assurance in her voice. And I have learned that there is always something to be hopeful about -- you just have to keep looking.

Chronic Illness and Emotions: What Couples Can Do to Connect

Part 6 (and the final part, for now) in the series on Relationship Roles and Illness.

Illness can be a demanding task-master. It can consume time, energy, patience, compassion, and even love. It can smash our early relationship dreams of a blissful hand-holding companionship - a happy couple smoothly tripping down the road of life, producing strong children and noble works along the way, and ending in a quiet sunset, supported by a steady retirement income stream.

One of the sadder casualties of illness is our image of our partner. A once charmed, handsome, generous, capable image gets supplanted by the gray profile of disease. Conversation that was once lively and expansive constricts to topics that can be researched on WebMD. The love that brought the couple together can be forgotten, supplanted by worry or detachment.

To reclaim each other, to resurrect or rebuild intimacy, I suggest couples do two things:

1. Be together in silence. When the turbulence of activity slows to stillness, and space is emptied of the words you hurl at your fears and resentments, you may be able to see that unique essence of your beloved that drew you together before illness did its damage. In silence, you may be able to reconnect with the spirit (some of you may call it the soul) that has not disappeared but may be waiting to be roused. Being together in silence may seem impossible. It isn't. And it doesn't have to be for hours, all at once. It can start with an uncomfortable ten minutes three times a week and build up over time.
2. Laugh together. Laughter is not only potentially good for one's health, but it disrupts the rhythm of complacency or anger or sadness. One day, when I was in the thick of my chronic pain condition and in no mood to connect much less laugh, I noticed about seven black socks draped all along the stairs that led to the bedroom. I asked Richard how they got there. He answered, "They're making a break for it....trying to reach the land of lost socks before they're caught." I cracked up. It felt so good. And it felt so good to look into Richard's eyes with lightness in my own, instead of the usual darkness.

For some couples, it's too late to reconnect. Illness has done too much damage; or the relationship was strained to begin with and illness only made things worse. The long haul of chronic illness can become unbearable. For couples in this situation, I would suggest bringing outside resources into the relationship. These can be friends, family, community, or hired help to clean, shop, cook, chauffeur, baby-sit, and take care of the daily care needs of the ill partner. These resources can also be in the form of activities each partner can engage in -- book groups, card games, classes, sports, etc. When your relationship has turned into a source of pain equal to or greater than the illness each partner needs something to uplift him/her and someone to talk to -- be it friends, family, or a therapist.

Chronic Illness: No One's Talking About it

From an October 11 article in the Atlanta Journal-Constitution:

Americans are more reluctant to discuss managing a chronic illness with family or friends than to talk about politics or religion or even extra-marital affairs, according to a survey of more than 1,000 adults conducted by Evercare, a provider of health plans for people who have chronic illnesses, are older, or have disabilities.

The survey, released Oct. 11, found that 82 percent of respondents said they knew someone with a chronic illness, but only 34 percent were likely to suggest ways for this person to better manage their care. And, btw, by 2020, about 157 million Americans will be afflicted by chronic illnesses, according to the U.S. Department of Health and Human Services.

The reasons why many Americans are reluctant to offer advice to chronically-ill friends or family include: They think the person has the situation under control (66 percent); they are not a health care professional (31 percent); they don't want to seem like a nag (31 percent) or rude (29 percent); they don't believe the person would listen to them (27 percent); or they didn't think the matter was that important (15 percent).

The bit that caught my attentions was this:

Twenty percent of respondents said their spouse was the easiest person to give advice to about health. However men have an easier time offering health advice to their spouse (28 percent) than women (19 percent).

This means that even among committed couples dealing with chronic illness, there's not a whole lot of talking happening about the topic. This deeply concerns me. Chronic illness consumes -- it can consume time, energy, passion, attention, empathy, altruism, and even love. And it's voracity can become even more potent when there's nothing between it and it's victim but empty silence. How lonely!

And any significant silence, any unnamed pain, or any undiscussable topic does not stay encapsulated in a neat corner of the relationship. It infiltrates. It seeps into other territories in the relationship, taking up more and more space until silence turns into habit. Not discussing a fearsome issue -- be it illness, sex, infidelity, money, family -- does not diminish its impact. On the contrary. The tension around the taboo subject just gets expressed elsewhere - through distance or eruptions.

Why aren't couples talking about the chronic illness in their lives? Is it denial about the illness? Is it protection of the partner's feelings? Is it avoidance of one's own feelings? Is it disgust over the physicality of some of the symptoms? Is it rage at the sick partner for his/her limitations, or at the well partner for his/her health? And why is it easier for men than for women to speak? Or is it harder for men to hear their female partner's words than it is for women to hear their male partner's?

Whatever the reasons, illness is just too hard to carry alone. Please, may we all find a way to find the words that penetrate the silence.

A Story About Lung Cancer

Please have a look at a short piece I wrote about "Saying Good-bye" to a dear friend who died from lung cancer. It has been published on a terrific website: But You don't Look Sick

Not all stories have a sweet ending, but all stories go on. Sometimes we just have to say good-bye.

A Story About Chronic Pain and Roles: Barbara & Richard

Part 5 in a 6 (maybe more) part series on Relationship Roles and Illness

I was housebound for a year, struggling each day to stay a few steps ahead of the pain and rarely succeeding. That was my daily work, my role, and I felt that I could not take on anything that interfered with my primary struggle. On better days, I tried to go for a short walk outside. That was my limit. In retrospect, it may have helped me to be distracted by vacuuming or doing dishes. The one thing I was compelled to do, and was very good at, was internet research on chronic pain and on western and alternative approaches and on finding specialists. I became a lay expert and used that expertise to drive my care. That also became my role.

I was dependent on Richard to deal with the world, and to keep the world away from me. That was his role. He is a master at this and was brilliant at negotiating with our insurance company and at searching out food I had some interest in eating. He felt joy when he was able to solve a problem that lifted my burden a bit, since he felt so helpless in terms of making my pain go away. I, in turn, expressed appreciation for his activities and insisted that he continue working at his job and find a therapist. I knew that he needed normal time – time way from illness, pain, and a crying wife. And I knew he needed his own specialist, a therapist he could share his fears and pains and anger with, because I could not hold his pain and my own.

We checked in with each other regularly about this arrangement. On my better days, I offered to go to Whole Foods or to pick up a DVD (in the days before Netflix). He asked me to let him know when it could work for him to visit his brother in San Francisco. I knew how much he wanted to make that trip, yet I was also afraid to be left alone. We problem solved together and arranged for the two friends I had let into my dark world to Barbara-sit while he was away.

Did our efforts to balance our roles go smoothly? Were we always in synch with each other’s needs? The answer is a big, fat, shrieking, “NO!” Illness is overwhelming, and without consciously remembering that your partner is on your side, the rage of illness can easily trump compassion. There were times I angrily sent Richard out of the room because I thought he just didn’t get what I was going through, and it was too frustrating to try to explain, again. There were times when Richard was fed up with my finding fault at his attempts to help and had to take a break from my despair. Ultimately, we found our way back to each other, because that is what we do.

Practical Advice: How Can Couples Deal with Life, Illness, and Emotions?

Part 4 in a 6 part series on Relationship Roles and Illness (originally a 4 part series, but I realized there's a lot more to write)

On the practical side the couple can set aside a time outside of the turbulence to rationally discuss what strengths each person can bring to deal with daily life and medical demands. Illness forces so many unwanted burdens on us, we tend to feel overwhelmed and that feeling can constrict our sense of our own capabilities – for both partners. Doing can remind us of our capabilities and help us feel more a part of life.

Together, both people can write out a list of what needs to be done. I suggest that the ill partner then go first and state what he/she feels able to do (knowing that this can change and may increase or decrease daily). Can he/she shop for groceries? No. Can he/she arrange for groceries to be delivered (there are services like Peapod or Netgrocer)? Can he/she drive the kids to soccer? No. Can he/she call someone to arrange for transportation? The idea is to find some way for the ill person to stay engaged in the world and hold on to adult responsibilities – while accommodating to the real constraints imposed by illness. This may seem burdensome. But the more the ill person gives away, the more he/she fades away, and the stronger his/her relationship becomes with the illness.

The well partner does not have to pick up whatever remains on the list. The well partner also needs to assess what his/her priorities and capabilities are. He/she may need to work over-time and may not have the time or energy for cleaning the house or helping the kids with homework. And the well partner’s capabilities can also change on a daily basis. (btw -- Craigslist is a wellspring of services and goods).

After the well partner decides what responsibilities he/she can undertake, there will be leftovers. Then both partners think together, constructively, not blamefully, about how they can get help from an outside source to pick up these remainders. Can they hire a cleaning service twice a month? Will their insurance pay for a home health aide to bathe and give medication to the ill partner? Can friends, neighbors, and family be enlisted to prepare meals, chauffeur kids, drive the ill partner to medical appointments?

The most important part of doing this kind of chore/responsibility inventory is not the thoroughness of the list, but rather is the spirit of mutual caring the couple can bring to the conversation. If this activity is done with acrimony, then the efforts each partner makes will carry the extra load of bitterness. If the preamble to this activity is: “We are both having a difficult time. Maybe we’re trying too hard. Let’s, together, figure out how we can be easy on ourselves and make it easier for each other. Because I care about you.” – then the efforts made will be lightened by compassion.

The Lighter Side of Chronic Illness: Dominoes??

I found another interesting website about chronic illness. But You Don't Look Sick is an online magazine about living life to the fullest with any disability, invisible disease, or chronic pain and hopes to provide answers to the endless questions of: "But you don't look sick?" It contains book reviews, personal essays, and tips about hobbies and activities that are easier to do for people with chronic illness.

Please check out my recent article in this magazine:
Dominoes: It's Not Just for Kids Anymore

Chronic Illness Statistics: We Are Not Alone

Here are some surprising stats about chronic illness I recently found on a very interesting website, The Daily Headache, about living with and managing migraines and chronic headaches (written by Kerrie Smyres):

• Nearly 1 in 2 Americans (133 million) has a chronic condition
• 96% of them live with an illness that is invisible. These people do not use a cane or any device and may look perfectly healthy.
• Sixty percent are between the ages of 18 and 64
• The divorce rate among the chronically ill is over 75%
• Depression is 15-20% higher for the chronically ill than for the average person
• Various studies have reported that physical illness or uncontrollable physical pain are major factors in up to 70% of suicides and more than 50% of these suicidal patients were under 35 years of age

We are not alone. And we have a lot to learn from each other about living with illness. In fact, there is a National Invisible Chronic Illness Awareness week annually in September to bring together and educate people with chronic illness and the people who care about them.

Relationship Roles & Illness: Why Is It So Hard?

Part 3 in a 4 part series on Relationship Roles and Illness

Serious illness seeps into every refuge and rift in the terrain of an intimate relationship. It strains all daily routines and customary roles. The ordinary can no longer be taken for granted. Doctors, drugs, hospitals, and healers merge into the substance of the relationship. Unexpectedly, life and death choices become the focus of conversation instead of the wonderfully conventional “How was your day, dear?” or “What would you like for dinner?”

Underneath the enormity of this shift, some couples find that the relationship-building work they have done for years is there to support them. They can be partners in crisis just as they have been partners in life all along. Other couples find that the health crisis slices through the fragile ties that have held them together and that without the familiar routines to buoy them, they flail.

However, no matter how strong the relationship structure, illness creates new rents or widens existing cracks. Why is this? Because on some level illness makes us children again and then takes away the promise of “happily ever after.” Both partners are hurting and scared and want someone to make it better. Both are facing loss and abandonment and want someone to make it stop and to tell them that it will be all right. And that cannot happen. Even with physical recovery, the sundering caused by illness leaves its stains.

It is awful to look at the face of your sweetheart and see pain, fear, and helplessness when what you want so badly is to have it back the way it was. Some couples can find and hold each other with understanding and compassion. Some couples direct their rage against the seemingly omnipotent enemy, illness, against each other, and demand from each other the fortitude illness has taken away.

And all this turmoil is backdrop to the daily demands of dealing with a health system in crisis. Couples still have to deal with making appointments, finding specialists, researching new treatments, taking new medications. And the demands of ordinary, daily life don’t wait either. Children need new school clothes, groceries must be bought, and the office still expects you to do your job. Can you feel the pressure building?

How can couples deal with all three intersecting tensions -- daily life requirements, illness demands, and erupting emotional issues. One answer is they can't. Not alone. It takes a village to help a couple dealing with serious illness manage the daily tasks, the medical choices to be made, and the emotional upheavals. Neighbors, friends, and family (if you're lucky) can be enlisted to chauffeur the kids, do grocery shopping, rotate cooking dinners. A trusted companion can sit with the ill partner when the well partner needs a break. I, thankfully had my beloved friend, Tom, "Barbara-sit" when Richard needed to see the opening of the first Lord of the Rings movie. And I have participated in cooking brigades when an ill friend and her partner were too exhausted to prepare anything more demanding than cheese and crackers.


In the next installment on the topic of Roles and Illness, I will offer some more suggestions of things the couple can do themselves to help each other cope.

Relationship roles and Illness: What Happens to the Partnership?

Part 2 in a 4 part series on Relationship Roles and Illness

How do roles get determined in the couple relationship? Do we chose a partner who is like our idealized parent or like the flawed parent; like ourselves or very different from ourselves? I think whatever our initial reasons are, as the relationship evolves we find surprises that challenge us. As we grow beyond the initial intoxication, we bump into disappointments. How we move through those disappointments determines our future. We either stay stuck, repeating the same arguments over and over; or we stretch in our ability to listen without blaming and to love even when feeling wounded.

I have come to believe over the years that, as my relationship endures and deepens, I chose Richard because we are so different. His nature is exactly what I needed to catalyze me into driving toward becoming my fullest self. His belief in the basic goodness of the universe calls on me to challenge my self-protective distrust that things won’t work out unless I intervene. His slower, Southern pace and alertness to the beauty of small things reminds me to stop racing by the moment in pursuit of a better tomorrow. I have taught him about the world of emotions, and he has shown me equanimity.

Like all couples, we fell into patterns and came to rely on the complementarity and predictability of each other’s roles. One shops; the other cooks. One researches; the other negotiates. One analyzes; the other intuits. One grooms the dog; the other prepares her food.

But when one member of a couple becomes ill or incapacitated, this equilibrium and the unspoken rules that govern it change, forcing partners to assume new roles and behaviors, to learn new lines. Typically what was once a relationship of equals becomes one of caregiver and patient.

How can a couple achieve a new kind of balance - one that accommodates to the reality of the illness but also maintains a partnership of equals? Is this even possible?

A Story About Uterine Cancer & Relationship Roles: Susan and Charles

This begins a 4-part series on Relationship Roles and Illness.

Illness is an amplifier – enlarging existing relationship patterns and boosting the complexities. Illness forces awareness that might otherwise go unnoticed for years. In every activity– to hold, to feed, to acquiesce, to argue, to seek outside help - the couple looks into the mirror of their relationship. And often, illness forces decisions that change the nature of the relationship.

Susan and Charles both had a previous marriage and children. They had been living together for many years and had settled into a comfortable pattern in which Susan controlled and Charles accommodated. This was a satisfying arrangement and suited Susan’s outgoing, decisive nature and Charles’ restrained, more placid personality.

After ten years as committed partners, Susan was diagnosed with uterine cancer and had a hysterectomy. Susan’s recuperation was long and difficult, and she could not continue to oversee the tasks and patterns of their lives with the degree of vigor she had prior to her cancer. Initially, Charles responded by accelerating his attentiveness and taking on more responsibility. The situation changed dramatically when Charles’s demanding teenage daughter came for an extended visit.

Swept away by the waves of his daughter's adolescent antagonism, Charles reverted to his customary, more passive stance and expected Susan to return to her "take charge mode." Susan, however, was still too debilitated and wanted to continue to be taken care of. The conflicting role needs of the couple collided repeatedly until a crisis point was reached. Susan insisted that either Charles' daughter leave or she would. The daughter left, but the rift in the couple relationship remained, and Susan and Charles decided to separate.

After several months apart, Susan and Charles reconciled, but they realized that things could not go on as before. They needed to create a better role balance in their relationship. With the help of a good couple's therapist they worked on equalizing the relationship load. Now, they each carry a more even share of responsibility and consciously nurture each other.

They were committed, and lucky. Susan seems to be recovering well, and their relationship had enough elasticity in it so that it could stretch to accommodate changing needs. This is not the outcome for all couples -- especially when the illness is very long-term and leads to permanent impairment or personality changes .

Do We Really Know What Makes Us Healthy? No! So What Can Couples Do?

This past Sunday’s New York Times had a very meaty article that was both disturbing and comforting – “Do We Really Know What Makes Us Healthy?” The main premise is that epidemiological studies can be so fraught with bias, assumptions of correlations, incorrect correlations, and short-term vision that it becomes almost impossible to know what studies to believe. And therefore, it becomes very difficult to know what advice to follow. The long, sad story of HRT (hormone replacement therapy)– initially a cure for aging for women and ultimately thought to be a precursor to increased risks of heart disease, stroke, blood clots, breast cancer and perhaps even dementia --- is a brilliant example of well-intentioned research gone wrong in the end.

But how is one to know what to trust when it comes to medical advice? The author, Gary Taubes, writes, “All of this suggests that the best advice is to keep in mind the law of unintended consequences.”

For a couple holding hands and wandering through the snaky corridors of medical information, it is so easy to get lost. Especially if the health condition crosses the boundaries of several medical disciplines (like chronic pain, back pain, diabetes, fibromyalgia, headaches, and more), the couple is likely to hear not only more information than is comprehensible, but information that may be contradictory.

In seeking help for my chronic pain, one physical therapist who specialized in pelvic pain told me never to bend backwards, while a myo-fascial physical therapist told me never to bend forwards. Vertical or horizontal were the only positions left – neither one tolerable for too long.

While it is disturbing to hear that we can’t really know what medical advice to trust, it is also comforting to realize that this failing returns a good chunk of responsibility for decision making to the patient and the partner. We can feel empowered to voice our concerns and bring our intuition back into the treatment room.

A STORY:

I waited three months for a follow up appointment with the chief of neurology at a renowned hospital. He had me put on a gown and told me to lie on my stomach. Richard was seated in a chair nearby. As I was automatically moving into place I asked him what kind of exam was he going to do. He replied that he was going to do an epidural to test my spinal fluid for signs of infection, since that was one of the few test left undone. I sat bolt upright and started asking questions about the procedure, its risks, and the likely outcome given my medical history. His responses made the test seem much less appetizing. But here I was gowned and ready. And here he was, credentialed and authoritative. How dare I resist!

Luckily, Richard was there. And this is a grand advantage of going through the medical maze with a partner. Richard was able to hold up the stop sign and voice what I had been feeling but was too stressed in the moment to say – “It sounds like we have some doubts about the procedure and aren’t ready to go through with it today.” I could breathe again.

His intervention also opened up a line of questions I didn’t have the perspective to consider. I now place these questions among the top ten to always be asked:

• What will happen if we wait a week? Two months? Six months? A year?
• Are there any alternative ways of getting the same information?
• What symptoms should we be on the look-out for that would indicate that we should have the procedure done right away?

Making medical decisions is one of the arenas where couples can collaborate brilliantly and use the wonderful advantage of having a listening/sounding board immediately at hand. Even if the relationship is strained and torn by heated issues, couples can try to declare an emotional moratorium in order to work together and bring their combined intellect to bear on treatment decisions.

Ultimately, the decision to take the meds or go through the procedure is the patients; and the patient must rely on his/her trust in the doctor weighed alongside of his/her own research and intuition. The partner can be the voice of gentle challenge to the doctor and to the patient, and can infuse the equation with her/her own research and intuition. This is a situation where two loving heads can truly be better than one frightened, overloaded one.

For Younger Women with Chronic Health Issues

I recently started reading a website that provides an online community for younger women with chronic health issues who want to be their best. The founder of ChronicBabe.com, Jenni Prokopy, was diagnosed at the age of 25, with fibromyalgia. Soon after came diagnoses of asthma, anxiety, Raynaud's phenomenon and GERD. Young women coping with chronic conditions just as their adult lives are really getting started face complicated issues. Jenni's mission is to help women feel in control of their lives in spite of their health situation. While the site has compelling stories and useful advice for younger women, I think anyone can benefit from having a read.

Here are a few recent article about love and chronic illness

Do You Want to Know Your Medical Prognosis?

When doctors don’t tell you the bad news, it can make life even harder. The author of this New York Times article (Nicholas A. Christakis, a physician and a professor of sociology at Harvard) makes the case that giving a terminally ill patient a realistic assessment of how long he/she has to live can be vitally important. It can give the patient time to take care of the practicalities, speak what needs to be said, and be in charge of end-of-life medical decisions. Doctors often fear that telling a patient he/she has two months to live will strip away the patient’s investment in life. Dr. Christaki writes, “It should only refocus attention on the quality of the patient’s life. Sometimes living life to its fullest requires knowledge of its finitude.”

I take a pretty hard line about this issue of don’t tell. I don’t think any medical person (or family member) has the right to censor my health reality, even in the name of kindness. Whether the news is about how much time I have or how much functionality I’ll have – I want to know. Even if I don’t want to know, I need to know. The labyrinth of life is tangled enough without false exits being offered. I want to walk it carrying whatever my load is.

Richard was aware of my need for complete and accurate information; and he had the same need. We discussed whether he would accompany me to appointments with specialists and decided that four ears were better than two. We asked questions from different perspectives and remembered responses the other sometimes forgot. We both found this to be a very useful form of partnering.

Prognoses of death or limitation are not the end. While the final certainty of loss is unavoidable as we age, with the truth as catalyst, who knows what new paths any one of us may create, even in the last moments of life. My pain brought me my dog, yoga, a few glowing embers of spirituality, and strangers who, surprisingly, became beloved allies.

What is your stance on the issue of to be told or not to be told?

Have you faced the situation of having to decide whether or not your partner should be told the medical truth? How did you handle it?

A Story about Chronic Pain & Relationship: Barbara and Richard

In a recent posting, I may have made it sound like Richard was angelic during my illness. He was not. But he was heroic.

We met in 1976 and got married in 1985. Ours was a star-crossed and, at the same, a star-blessed relationship. We loved each other to the core and respected each other’s fundamental nature. We started off with similar politics, sense of humor, and devotion to friends. He liked the doughy part of bread, and I liked the crusts. He ate the meat, and I chewed on the bones. He knew math, and I knew how to read.

For many years, we didn’t really know how to name the harder feelings without blaming the other for causing them. We didn’t know how to sit together and hold hands through the heartaches and the control struggles. I used words to contort emotional pain into something that seemed rational, but was really just an articulate relocation of blame. Richard shrank into confusion, frustration, and eventually silence.

We never gave up. And over the years, we grew each other up. We learned that in a primary relationship, at least in ours, what doesn’t get spoken eventually gets acted out. We learned to speak the unspeakable (more about this in a later post), and that while doing so felt desperate and destructive, it was actually the only path to a true reconciliation.

So, by the time I got sick, we had a solid track record of loving, falling into the pit, and pulling each other up to higher ground. He did all those wonderful, kind things I mentioned in the previous post, and more. He read to me, stoked my hair, kept the pantry stocked with almond butter and rice cakes (one of the few food combinations I could tolerate), and sat vigil while the waves of pain carried me farther away from life.

There were times he couldn’t tolerate my pain and his helplessness – and left. Sometimes he disappeared into the TV or his computer. I remember one evening when he came home from work, he found me collapsed on the kitchen floor, in pain, but mostly heartsick that I would never go to Paris or work or leave the house ever again. He just stood there dropping words of tired reassurance and then went to check the mail. I was crushed – not by his dispassion but by the fact that he had the option of exiting and turning his attention to something as wondrously ordinary as the mail.

He was not angelic – but he was heroic. He believed I would get better. He tried and tried and tried to comfort me. He took care of himself. He put my needs first. These simple things…but not so simple. One day, after I began to recover, Richard said with a tone of surprise, “Well now I know how selfless I can be.” He wasn’t being self-congratulatory. As a scientist and engineer, he was stating a fact. He had learned how far he would bend to hold onto me. To go to the outer reaches of love, compassion, limitation, and altruism, and to do so without fanfare and without expecting reward – that is heroic.