In Sickness and In Health

July Fourth

2008-07-04T08:43:00.000-07:00

I remember the first July fourth after I started have chronic pain. Like every other day for that terrible year, I lay curled up in a bean bag chair in our attic bedroom trying every trick I knew to meditate myself into oblivion. In the period b.p. (before pain) July fourth meant a bar-b-cue on Mark's front deck with the best chicken wings and cold beer. Around 7:00pm we'd wander down to the river to stake our place for the fireworks show. a.p. (after pain), July fourth was just another damn holiday when I couldn't get in touch with my doctor, nurse, physician's assistant, acupuncturist, chiropractor, homeopath, or physical therapist.

It's been several years since I last lay in that bean bag. Today, Richard and I are going to a new bar-b-cue on a deck overlooking the bay where we'll eat shrimp, drink Merlot, and watch fireworks from a distance.

July fourth is now just another day to be with my sweetie and friends. It doesn't get much better.

Happy July 4th!

How to Make the Hard Conversations a Little Bit Easier

2008-07-03T09:49:00.000-07:00

Part 3 in a series about The Hard Conversations

I have a strange form of flying phobia. I am completely comfortable once I get on the plane. At that point, I relinquish all control, because there is really nothing else I can do, and trust in the force. But getting to the airport is fraught with opportunities for chaos.

I build in an extra hour of commuting time. I book a taxi the day before and then confirm it a half hour before it's due to arrive. I unplug appliances, give the stove knobs an extra twist to make sure they're really in the off-most position, check three more times to make sure I have my "government issued photo id," and then I pace.

Once I get to the airport I go right to security, no stops at Dunkin Donuts. I have my 3 oz. liquids in a baggie at the top of my pocket book, my lap top under my arm, and my shoes loosely tied so I can slip them off instantly. After I pass security, I go to my gate, sit in the chair closest to the gate, and wait, impatiently, with mounting anxiety.

Richard has the opposite tendencies. He likes to leave for the airport at the last minute. I actually think he enjoys the adrenaline rush that comes from zooming down the corridors, wheelie suitcase screeching behind, and making it through the gateway door with seconds to spare.

This week, Richard and I flew together. We arrived at the airport one and a quarter hours early (a compromise). I sat in my chair in the gate area, and Richard decided he would wander about to find something for lunch. He returned thirty minutes later to report that he had found a place that sold three bean chili and was considering heading back there to buy a bowl.

By this time, we were fifteen minutes away from boarding, and my anxiety and I were adamant that he shouldn't leave the gate area. I said, "Please just stay here. They might board early, and besides, I want to get on the plane first."

He responded with what sounded like, "Don't be silly."

I shifted a few degrees towards righteous anger. It's enough to just have this weird anxiety. I did not need to be belittled for it. I said, "Don't say that to me. I don't like the message or the tone."

I was about to continue, but Richard's expression suddenly changed. It started to resemble the face I often saw in the past when I was doubled over with uncontrollable pain, sobbing, making animal-like groans, and scratching my arms to distract me from the greater pain in my abdomen. That face said, "I don't understand what's going on, and I don't know what to do, and I'm a little bit afraid that you've gone somewhere I can't reach."

That face stopped me. I said, "What? Why the face? I'm just reacting with anger to your saying to me, 'don't be silly.'"

He started smiling and said, "I didn't say 'Don't be silly." I said, 'Three bean chili.'"

After a nano-second of silence I started laughing, hard. Richard began laughing with me. "Don't be silly - three bean chili," we chanted together.

I was still laughing when we missed the first boarding call.

How to have the hard conversations -- look for something to laugh at. If you can introduce even a slight smile into the mix, you break the constriction fear and anger create. And through that slim opening, a bit of light and the remembrance of love may enter.

The Caregiver Burden

2008-06-24T08:26:00.000-07:00

A well written post on the About A Nurse blog written from the perspective of the caregiver:

Friday Fiction #3: Drained

Too often, the caregiver is neglected, taken for granted. Whenever there is serious illness in one partner, at least two, if not more, lives are dislocated.

I would really like to hear from any caregivers out there. What is your reaction to this piece "Drained?" Which parts of it reflect what you think or feel or experience? How do you manage?

Grand Rounds is up at Shrink Rap

2008-06-24T08:02:00.000-07:00

The Shrink Rap theme was the new iPhone. Very interesting to see how folks connected it to health.

Also - a blogger and author I admire greatly, Laurie Edwards at A Chronic Dose is having her book come out today. Life Disrupted is about being young and having a chronic illness. She has important and useful things to say about this topic. And check out this article about Laurie in the Boston Globe.

Hard Conversations, Part 2: Can You Help Me?

2008-06-22T06:33:00.000-07:00

Gertrude Stein, the American author who spent most of her life in France and whose Parisian salon attracted avant garde-ists such as Matisse and Picasso, is reputed to have raised herself up on her death bed and said:

"What is the answer?" (silence as she lay back down and then raised herself up again) "In that case, what is the question?"

One of the hardest questions to ask is not, "What comes after death?" or "Is there sentient life on other planets?" or "Why don't men ever refill ice cube trays (imho)?" The hardest question to ask is, "Can you help me?"

For a person with a prolonged or chronic illness or disability, the question, "Can you help me?" often stands as a marker of a growing dependency on others for help with the tasks and responsibilities that this society too often identifies with worth.

Adults handle things. They take care of children, finances, home maintenance, and small dogs. Adults are the "go-to" people, not the "do for me" people. Adults who require help are assigned a seat in a second class car on the life train. And sometimes, especially on bad days, we believe that's where we belong.

Asking for help sets in motion a cascade of feelings and meanings. For some ill people, there can be a prolonged internal struggle between the voice of harsh denial that says, "Oh you can do the grocery shopping today (or the laundry or go to work). So what if you feel weak or in pain. Be a grown up." And the voice of sadness or shame that whispers, "I just can't."

How often are healthy people in situations where they have to confront their own limitations? Where they have to say out loud, "I can't do that." People with serious illness have do that many times a day. And each time requires an evaluation of one's abilities and possibilities, of one's place, even of one's identity. The question the ill person wrestles with is, "Am I to be defined by what I can't do, or by what I can?" Either way, the awareness of the possibility of falling short or failing to live up to some social standard infiltrates deeper into one's sense of identity each time this question is asked.

Notice too, how much our culture judges human value through measures of "doing" not "being." One's resume is about accomplishments not about character. At a social event, people say to each other, "So tell me what you do," not "Tell me what you think about." If your bio has been truncated by the limitations imposed by illness, how do you introduce yourself? Do you refer back to ten year old achievements? Do you mention your current illness? Or do you just avoid these events?

And if you need to depend on your intimate partner for help, on a regular basis, how can you prevent that from warping your relationship? How can you maintain a relationship of equals and thwart the slow side to a relationship of caretaker and patient? How can you keep asking the question, "Can you help me?" and still maintain a balance that keeps the relationship growing for both people?

I think the key is to not buy into the social norms that define asking for help as an admission of weakness and associate human value with doing and achieving. Within the boundaries of your intimate relationship you can define anything, any way you want.

Asking for help from your partner can carry a message of trust and intimacy. When you are willing to recognize your limitations and be vulnerable with someone you love, asking for help becomes an act of communion. It carries with it an expression of inner honesty and outer trust. And asking for help offers your partner an opportunity to actually do something. It can be a relief for the well partner to be able to actually undertake a task that can make the ill partner's life a bit easier.

The ill partner can, if he/she can shift from a "doing" to a "being" focus find many ways to rebalance the relationship. Perhaps the most important thing the ill partner can do is recognize the well partner -- see the caring contained within the help; recognize how hard it is for the well partner to be witness to his/her sweetie's daily struggles with pain or exhaustion; offer comfort.

Imagine the ill partner holding his/her sweetie's hand and saying, "You've had a hard time today. I know. Let's just sit together for a while and let me hold you." How much better is that kind of "being" than "doing" a mountain of laundry or making dinner?

How to Have the Hard Conversations

2008-06-15T06:56:00.001-07:00

This is the first in a series of posts I plan on doing about "hard conversations."

Healthy people can fake it.

If your friends enthusiastically invite you to go bowling or play miniature golf or see a Jack Black movie - all three choices second only to a tooth extraction - you can choose to go and fake your way through having a good time. Health gives you an air pocket that allows you to keep breathing while in an unpleasant situation. And you can participate without having to think much or talk much about it. You can chose to go in an instant.

Illness doesn't offer such a cushion. Any invitation has to undergo a cost/benefit analysis. Will the advantages of participation outweigh the repercussions of the effort involved? Is today a good enough day so that you can afford to spend some extra energy points on activity without having to pay too high a cost tomorrow?

What if it's your partner who is doing the inviting? The complications start to trip over themselves.

You know your partner understands your pain or your tiredness better than any one, so he/she wouldn't be asking if it weren't important. You want to be able to give him/her that gift - the gift of one normal day, even one normal hour as a couple. How much could it hurt to go to a movie or eat in a restaurant or drive to the beach? You may even start to convince yourself that you can participate, without cost, in these low key social activities. How much could it hurt? You may force yourself to ignore the signals your body is giving you - that hint of pressure behind your eyes that could signal a migraine or the pain in your lower back that could lead to sciatica or the slight heat of a low grade fever that could leave you depleted. How much could it hurt to take your symptoms with you and sit in a movie theater for a couple of hours?

You wish, more than anything that you could just do it without having to inventory your body and hold this miserable internal debate -- "Can I?" "Why not?" "You know why not?" "But maybe..?" "You know better." "But it will mean so much to him/her." "You and he will both pay for this later." "Why can't I have just one day of normal!!!"

So, no matter what choice you make, you carry the taint of worry along with you. And, given that sneaky mind/body connection, that worry may possibly flip the switch on your stress and release those fight or flight chemicals that can exacerbate the symptoms you are most hoping to ignore.

You may not be able to alter your physical state, but you can alleviate the worry and give your partner a true gift. How? By having the hard conversation.

Chances are, what matters more to your partner than the movie or the restaurant is feeling a connection with you. Your partner so often has to share you with illness, that he/she may really be asking for some eye to eye, heart to heart synching. You can offer him/her this closeness, not by faking it or forcing it, but by telling the truth, with empathy.

Telling the truth with empathy. Sounds simple, but it is actually one of the hardest forms of communication. It requires that you be aware and honest with yourself and at the same time be aware and honest about your partner's experience. To hold both your and your sweetie's condition with truth and compassion. To not retreat into fear or rage or shame. To not pick a fight, distracting you both and shifting the feelings you don't want onto your partner.

What does a "telling the truth with empathy" conversation sound like? (the following dialogue really happened between me and Richard, once upon a pain-filled time)

She: "I love that you are inviting me to go to the movies. That you want us to have fun together and get out of this house. But I am already feeling (fill in the blank: pain, exhaustion, anxiety, etc.) today and am not sure I can make it through a movie."

He: "I do want to get us both out of the house and be distracted for a while from illness. I'm sorry today is already a difficult one for you. Do you think you can try going to a movie? We can always leave if it gets too uncomfortable for you."

She: "I hate to disappoint you. And me. I know how awful it is for you to see me with pain. And I really appreciate that you want to bring some lightness and fun into our day. I wish I felt well enough, but, and this is really hard to admit, I just don't want to be around people or sit still or have to pay attention to a movie for two hours. And I would feel worse if I tried and then had to leave in the middle."

He: "Well I am disappointed. I wish you were willing to try, but I understand that it just doesn't feel right today. Maybe tomorrow?"

She: "Maybe tomorrow. And today, why don't we sit in the back yard and read the paper together."

The Dance of Relationship: TED & Pilobolus

2008-06-07T09:13:00.000-07:00

Many of you are familiar with the TED talks.

TED stands for Technology, Entertainment, Design. It started out (in 1984) as a conference bringing together people from those three worlds. Since then its scope has become ever broader.

The annual conference now brings together the world's most fascinating thinkers and doers, who are challenged to give the talk of their lives (in 18 minutes). Many of the talks are captured on video and posted on the TED website.

This extraordinary 14 minute video shows two dancers from the Pilobolus dance company, - entwined, apart, struggling, emerging. I found it so captivating that at some point I stopped thinking about what it might mean and just got wrapped up in the fluidity of their movements.

Others will have different interpretations, but for me, this dance is the dance of relationship, of a couple, or all couples, striving to balance separateness and merging, elation and suffering. This is an exquisite piece. I hope you enjoy it.

Grand Rounds at Happy Hospitalist

2008-06-03T19:22:00.000-07:00

This week's medical Grand Rounds is up at Happy Hospitalist. I'm pleased my post about saying goodbye to my dear dog is included.

The Two Sides of Back Pain

2008-06-01T19:03:00.000-07:00

I did too ambitious a plow pose in yoga class today, and heard my back make a suspicious popping sound. When I rolled out of the position, I couldn't sit up straight. Bent over like a crone with a cane, I inched my way to my car and made it home. I have been icing my back and crunching Advil for the last few hours.

My reaction to my body failing in any way is so convoluted since the peak days of suffering with a pain condition. On the one hand, I want to shout, "I've paid my dues. I earned a lifetime get-out-of-pain card. Pass me by and give that 20 year old in purple spandex a broken finger nail instead.

On the other hand, it's a bit delicious to have a normal person's ailment. Something with a known cause, a clear treatment, and most importantly, an end date. I'm seeing my chiropractor tomorrow and expect to be down-dogging again by the weekend.

GrandRounds is up at Parallel Universes

2008-05-27T07:19:00.000-07:00

A very interesting collection. Please have a look at Parallel Universes. I am honored that my post is among his top 5 picks.

TheTragedy of Self Immolation

2008-05-23T09:53:00.000-07:00

Sometimes you stumble upon something and it makes you realize, no matter what your suffering is, how privileged you are.

The May 22 issue of the New England Journal of Medicine had an article that stopped my heart cold. It is entitled, Driven to a Fiery Death - The Tragedy of Self-Immolation in Afghanistan.

It begins with these tragic statistics:

"Afghanistan, a country with 32 million residents, has been engagedin constant conflict for the past 30 years. This instabilityand insecurity have resulted in a stark economic climate anda very low life expectancy. More than half of the people inAfghanistan live in poverty, and 40% of the adult labor forceis unemployed. Life expectancy is 44 years, and annual mortalityis 20 per 1000 residents."

Against this backdrop of destitution, the authors superimpose a horrendous tragedy.

"70to 80% of female Afghanis are forced into marriages, and 57%are married before 16 years of age; 84% of women are illiterateas compared with 69% of men, and women are half as likely asmen to have completed primary school. Afghan women have a fertilityrate of 7.5 births per mother, and with a skilled birth attendantpresent at only 14% of births, the country's maternal mortalityis the second highest in the world."

These facts, however, do not represent the worst tragedy. That is yet to be described.

"The Afghanistan Independent Human Rights Commission and the Afghan Ministry of Women's Affairs report the identificationof 106 cases of self-immolation (by women) , in 2006; if these events areconsidered instances of violence against women, they accountfor 5 to 6% of all such violence reported that year."

"Self-immolation is the act of burning oneself as a means ofsuicide."

Half of these cases were women between the ages 16 to 19. This is a picture of a young burn victim. The gauze over her face is used to keep flies off.

"Often, self-immolation was said to have occurred after victimsspoke out against or sought help in alleviating the violenceto which they were subjected — but were ignored." Violence perpetrated by husbands, in-laws, and husbands' other wives.

To burn yourself, because it must be a lesser torture than those to which you are subjected every day by your husband, by your family; to disfigure yourself as testimony against those who have savaged you; to seek release in death not through the quietness of a knife but through the explosiveness of fire -- it stops my heart. I don't know what to do.....

Is donating money to groups on the ground, working for women's rights in Afghanistan enough? No...but it's a start.

Sheila & Harry: A Story about an Under-Functioning/ Over-Functioning Couple

2008-05-19T22:25:00.000-07:00

Over the past several years, Sheila, age 80, has been the designated patient. Her closest friends are her doctors whom she believes understand her best. In any given week, she may have two to four appointments. She takes a jumble of medications, some of which are not compatible with each other, and intermingling them can cause the symptoms they are intended to alleviate. As the months go by, she spends more and more time on the couch.

Lately, a new dynamic seems to be setting down roots. Her husband, Harry, age 82, has had several serious falls which resulted in hospitalizations followed by lengthy rehabilitation and physical therapy. Last week, he caused a car accident and is back in the hospital, soon to go to another rehab facility. He is miserable, in pain, and non-communicative.

The kicker is that Sheila, rather than sinking deeper into the folds of the couch, has risen. She is becoming the competent one who deals with paperwork and arrangements and information. She has even started swimming three times a week.

In short, the worse he gets, the stronger she becomes. From my work, I know this is not an uncommon pattern - the under-functioning/ over-functioning couple.

Have you seen this pattern in your family? How about in your own relationship?

Grand Rounds at Health Business blog.

2008-05-13T07:07:00.000-07:00

Grand Rounds is up at the Health Business Blog. Have a look. I'm pleased my post on doctor etiquette was included.

Etiquette-Based Medicine

2008-05-09T11:38:00.000-07:00

This has nothing to do with couples and illness, but I was so surprised when I read this article, I had to blog about it.

One of the most prestigious medical journals in the world, the New England Journal of Medicine, just published an article on Etiquette-Based Medicine, by Michael W. Kahn.M.D.

Now you'd think this article would be about some cutting edge approach to medical care, along the lines of narrative medicine (a practice at the College of Physicians and Surgeons at Columbia University) or about some of the terrific scientific and social innovations that come from the The Cleveland Clinic, which is ranked among the four leading hospitals in America (US News & World Report, 2007).

But this NEJM article is really about etiquette. The article opens with the question:
"Patients ideally deserve to have a compassionate doctor, butmight they be satisfied with one who is simply well-behaved?" The author goes on to say, "A doctor who has trouble feeling compassion for oreven recognizing a patient's suffering can nevertheless behavein certain specified ways that will result in the patient'sfeeling well treated."

First of all, a doctor who is unable to feel compassion and can't see suffering when it's under his/her nose is, imho, not practicing excellent medicine and should probably be re-trained or re-positioned into a role that has less to do with direct patient care.

Second of all, do we really need to bring Miss Manners into the consulting room? Isn't that a bit insulting to doctors. Do they really need to be reminded to say hello and introduce themselves to the patient? Apparently so, according to the author. The basic manners include:

1. Ask permission to enter the room; wait for an answer.

2. Introduce yourself, showing ID badge.

3. Shake hands (wear glove if needed).

4. Sit down. Smile if appropriate.

5. Briefly explain your role on the team.

6. Ask the patient how he or she is feeling about being in thehospital.

"I may or may not be able toteach students or residents to be curious about the world, tosee things through the patient's eyes, or to tolerate suffering.I think I can, however, train them to shake a patient's hand,sit down during a conversation, and pay attention. Such behaviorprovides the necessary — if not always sufficient —foundation for the patient to have a satisfying experience," writes the author.

I find this terribly sad. I am not my medical condition. And for my doctor to learn about my condition he/she has to go through me. If my doctor can't recognize suffering or have empathy (not sympathy), he/she is only getting a portion of the data, that which can be conveyed in simple answers to questions asked. The story I have to tell about my pain condition, for example, is bigger than answers to, "When did it start?" "How would you rate it on a 1-10 scale?"

I welcome doctors who are scientifically brilliant. I want to hear what they have to say about their area of expertise. And if they have good manners and can "smile if appropriate," I would even have a cup of tea with them. But I would never equate that with a "satisfying experience."

I don't need or want my doctor to weep with me. I don't want him/her to look deeply in my eyes, hold my hand and say, "I feel for your pain." But I do want my doctor to be able to make a genuine human connection with me - one that makes it possible for him/her to ask deeper questions and for me to give deeper answers. And who knows, that connection, that relationship may actually play a serious part in the healing process.

Saying Goodbye to a Good Dog

2008-05-01T06:58:00.000-07:00

Ambrose Bierce in his Devil's Dictionary defines "DOG" this way:
"DOG, n. A kind of additional or subsidiary Deity designed to catch the overflow and surplus of the world's worship."

My sweet dog Mina died a year ago today, and I am ready to say goodbye. She came into my life when I was very sick with an uncontrollable pain condition. She was as important a part of my recovery as was my husband and my doctors. She gave me shelter in her heart -- that is what I felt every day of our time together. And, in the ways of a universe with a sense of irony, she died at age twelve from an enlarged heart. Her breeder had told us about her many gifts and promised that she would only disappoint us once. Mina kept that promise.

Here is the eulogy I shared with her many friends after she died:

As many of you know, Mina has been slowly declining over the past year. She has had a heart condition since she was young and has compensated masterfully for it over the years. Two days ago she went into serious respiratory distress, and last night we brought her into the emergency ward of Angell Memorial Animal Hospital. Despite their tireless efforts, she continued to deteriorate. She lay on her side, breathing rapidly, and was largely unresponsive. I called her name once, and she lifted her head. Our eyes met, and we said good-bye to each other. At 5:30 am on May 1st, just as the sun was rising, we brought her out of the hospital into the cool morning air and laid her down on her blanket under a tree. I held her as Richard knelt by her side. She was one month past her twelfth birthday when she died.

We have been blessed to have had her in our life for seven years. Every moment with her was an invitation to live with joy and equanimity. Her high-held, swishing tail was a signal to relish the day. Her determined sniffing as she hunted down the exact right spot to dig in to excavate some long buried chicken bone was a reminder to pay close attention to the concealed miracles that surround us. Her delight at reuniting with her beloved friends, all of you, called on us to deepen our own commitment to community. Her forbearance of our impatience when we needed to get going and she was still sniffing, was a gentle lesson in magnanimity. And her capacity for empathy while respecting boundaries is a power I will continue to strive to emulate.

One of her vets once said that some dogs are dogs; and others are people. Mina was people. I know that she left her paw mark on each of you. I also know that you share in our deep sadness in her passing. Mina always remembered her friends, no matter how much time passed since the last visit. Know that she loved you, and that your love made her life richer, as it does ours. May her imprint remain in all our hearts, and may all of us take what she gave us and express it in our lives.

Please join me in taking a moment to honor Mina and the animals in your life who give you love and shelter.

Grand Rounds at Doc Gurley

2008-04-29T11:19:00.000-07:00

A fierce Grand Rounds is up Doc Gurley's. Check it out.

Pain as Art

2008-04-27T10:48:00.000-07:00

I stumbled upon an article in the Health section of today's New York Times that described a unique, online art exhibit.

Mark Collen, 47, is a former insurance salesman who suffers from chronic back pain. San Francisco college student James Gregory, 21, suffers from chronic pain as the result of a car accident. The two created the Pain Exhibit, an online gallery of art from pain sufferers.

The categories pain art falls into include Torture, Imprisonment, Loss of Faith, Fear, Hope, Love, Transformation, and Acceptance. That about covers the spectrum. Each image is comes along with an artist statement that describes his or her pain condition and the personal meaning of the image.

As you might expect, many of the images are hard to look at and evoke in the viewer a shiver of mortality and fear. It is too horrible and too intimate to get this close to another's pain, even if you're suffering with your own.

Eye of the Storm portrays the both the agony and the terrible loneliness of a migraine sufferer. Do You See What I Feel? shows that for many, pain doesn't show on the outside. So sufferers may appear normal, and be treated as normal, while experiencing a steady pounding of pain internally. Trapped in Hell is very hard to look at. It captures the desperation of a sufferer who can't bear the pain one more second, yet can never escape from his own body.

There are people who are forced to endure terrible conditions -- torture, from within and from the outside, inflicted by biology, by government, by neighbor. Those of us who have found some pathways out of this hell, and those of us who are lucky enough to have never visited there yet must bear witness.

That's the least we can do.

Grand Rounds at Dr. Val

2008-04-23T08:17:00.001-07:00

Have a look at this week's Grand Rounds hosted by Dr. Val. btw - her blog is terrific, great medical info on a range of topics.

Couples and OCD (Obsessive Compulsive Disorder)

2008-04-21T09:33:00.000-07:00

Obsessive-Compulsive Disorder, OCD, is an anxiety disorder and is characterized by recurrent, unwanted thoughts (obsessions) and/or repetitive behaviors (compulsions). Repetitive behaviors such as handwashing, counting, checking, or cleaning are often performed with the hope of preventing the thoughts and reducing the terrible anxiety that accompanies them. In spite of the disorder, many people with OCD function at high levels.

Adrian Monk, the TV detective played by Tony Shalhoub comes to mind as an OCD sufferer plagued by the urgent need to engage in certain rituals to ward off germs or dirt, to keep objects perfectly ordered, to count steps, and to check things repeatedly.

Typically, the treatment for a person with OCD is cognitive-behavioral therapy and medication.

However, two clinical psychologists at the University of North Carolina at Chapel Hill will, for the first time, use cognitive-behavioral therapy (CBT) to treat couples in which one partner has OCD.

According to an article on PsychCentral:

"Jonathan Abramowitz, Ph.D., associate professor and associate chair of the psychology department in UNC’s College of Arts and Sciences, who is also director of UNC’s Anxiety Disorders Clinic, and Donald Baucom, Ph.D., professor of psychology and director of UNC’s Couples Therapy Clinic, will provide treatment for about 20 couples as part of a new study funded by the Obsessive Compulsive Foundation."

“First we will find out about the OCD symptoms and how the couple has been managing with these problems,” Abramowitz said. “Then we will help the couple learn to work together to address the OCD patient’s obsessions and rituals and assume a healthier relationship in which their interactions do not make OCD worse.”

“The hope is that when both partners learn the CBT techniques, the partner without the disorder can be more helpful in encouraging the OCD mate to work through fears realistically,” Abramowitz said. “This would be good for the OCD sufferers and their spouses.”

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Musings

How can it be that the couple is being seen as the nexus of treatment for OCD "for the first time?"

Couples are intertwined, for better or for worse. We carry our conjoined lives with us wherever we go. One goes to the supermarket and remembers that the household is out of the other's favorite brand of yogurt. We call each other up when one is going to have to stay late at work. Our memories of joys celebrated and injuries inflicted are everlasting. And when one is sick, both lives are dislocated.

When one partner is ill, with OCD, PTSD, GERD, or any other acronym, the other partner is intimately involved. The well partner knows all about the other's diet and bathroom habits, how far she can walk, when well intentioned company begins to tire her out. And the ill partner can read her sweetie's face from across the room and see signs of hope or weariness. One person may do internet research on the ailment, while the other deals with insurance labyrinths. They may go to specialist appointments together and dissect what they heard and understood afterwards.

Whether they talk openly or not about the illness, the illness changes two lives, not one. And the two partners combined have exponentially greater potential for having impact on the experience of illness, also for better for for worse.

After so many years, I can tell what's on Richard's mind by tiny changes in his breathing pattern. He can hear in the first diphthong of the first work I utter when he phones me if I've had a good or a bad day. We carry each other. We defeat each other. We save each other. We grow each other up. Over and over again.

How can this be the first time that the unit of treatment is the couple? I am not suggesting that the patient should abdicate control to the partner. The person in whose body the illness resides gets dibs on making treatment and personal choices. But why would care providers not use the interconnectedness of the couple as a channel for healing?

Grand Rounds at Women's Health News

2008-04-15T14:31:00.000-07:00

Have a look. And check out the rest of this very interesting blog about women's health.

Mars/Venus....Who Cares!

2008-04-14T13:07:00.000-07:00

I don't know if this communication challenge exists for all couples - but it's there for Richard and me. The challenge is how to know when the response that is required is problem solving and when the response that is desired is empathy. And illness can shorten tolerance and raise the temperature on conflict fairly quickly.

Those of you who have pegged this as a Mars/Venus dilemma with the woman as the Venus empathizer and the man as the Mars problem solver are only partially right. There are times when Richard wants a cuddle and to be told that I feel for his pain; and there are times when all I want is to have him fix the damn [fill in the blank -- usually it's computer or toilet].

The other night I was getting stressed over an upcoming business trip that will involve about 15 hours of travel time. I am not the road warrior I used to be pre-illness. Airplane travel flicks some neurological switch and I start to feel blips of pain. If the flight is shorter than 6 hours, I can ride out the blips. If the flight pushes into the double digits, pain wins -- unless I medicate myself into another dimension, which I hate doing.

So I was moaning and bemoaning. I wanted to go on this trip, but I feared the physical repercussions. And I hated that I had to factor them into the situation at all.

I could see Richard's posture stiffen in the way that it does when he is not sure of how to respond and doesn't want to say the wrong thing. I was too immersed in my worry spin to know what I wanted, much less provide him with any cues.

He handled the situation beautifully. He said:

"My instinct is to jump in and problem solve and tell you ways I think you could deal with this, but I'm not sure that's what you want. So I'll just tell you that I see that this is causing you such stress, and I truly feel for you and want to help you any way I can. I have some ideas I can share with you when you want them."

Like Golde said to Tevye in Fiddler on the Roof:

"If that's not love, what is?"

Grand Rounds at Dr. Wes

2008-04-08T11:12:00.000-07:00

Check out this week's Grand Rounds at Dr. Wes. He organized all posts by their cardiovascular-ity. I'm pleased he included mine (Conversation Overheard in a Waiting Room) under Normal Sinus Rhythm. It's so nice to be normal.

A Conversation Overheard in a Waiting Room

2008-04-05T09:06:00.000-07:00

During the first year of my pain condition, Richard (my sweetie) accompanied me to most of my appointments with the army of specialists I consulted. He was my memory and my protector. When a doctor would recommend an invasive diagnostic procedure, Richard would charge in with questions like: "What are the risks?" "Would the results change your recommendations in any way?" "Is there another way to get at the same information?" He was also able to remember the more hopeful things the doctor said, while I, beaten down by pain, would mostly recall the doctor's uncertainty.

One time, as we sat together in the waiting room of a uro-gynecologist whose name really was Dr. Flesh, we overheard two young teenagers, also waiting to see the aptly named doctor, engaged in energetic conversation.

The girls were talking loudly, interrupting each other and giggling. Richard and I, not being native Bostonians, could barely penetrate their thick Charlestown pronunciation. One girl began to describe her recent experience with what sounded like “PSDS."

The other one quizzed her. “When did it happen?” “Did it hurt?” “Do your parents know?” “PSDS, I don’t ever want to have that. It hurts!”

We struggled to figure out what “PSDS” was. It sounded gynecological (especially given our location), but we couldn't be sure. We listened more closely and heard the second girl ask, “How did he do it?” “Did it bleed?”

Richard and I quietly agreed that they must be talking about either a first sexual experience or a new form of venereal disease.

At that moment, the second girl leaned over the first, pulled her hair away from her ears, and said, “Well, good for you. They do look really pretty.”

Richard and I both started laughing. “PSDS.” Charlestownian for pierced ears.

(N.B. This is actually a twist on a story told to me by my brother-in-law)

Disability & Inevitablility: A Touch of Philosophy

2008-04-01T09:20:00.000-07:00

From the March 6, 2008 New England Journal of Medicine:

"In the United States, 125 million people are living with chronicillness, disability, or functional limitation. The nature ofmodern medicine requires that these patients receive assistancefrom a number of different care providers. Between 2000 and2002, the typical Medicare beneficiary saw a median of two primarycare physicians and five specialists each year, in additionto accessing diagnostic, pharmacy, and other services. Patientswith several chronic conditions may visit up to 16 physiciansin a year. Care among multiple providers must be coordinatedto avoid wasteful duplication of diagnostic testing, perilouspolypharmacy, and confusion about conflicting care plans."

These 125 million people are not the unfortunate "other." They are not only our partners, children, sisters, brothers, parents, and friends. They are us.

A friend who has worked in the rehabilitation field for decades likes to shock people by saying that there are no dis-abled people, only temporarily abled people. And none of us has the algorithm for figuring out how long we will be abled.

So what's a person to do when the outcome is so fearsome and so certain:

"Keep walking, though there's no place to get to. Don't try to see through the distances. That's not for human beings. Move within, but don't move the way fear makes you move."
Rumi (13th century Persian poet)

...and it wouldn't hurt to consult with a long term health care/financial planner; build a strong relationship with a primary care provider; find a health care facility that has a geriatric service that provides case management (like John Muir Health Senior Services in California); talk to your family before a crisis hits about your wishes and the kinds of help family members can offer.

March Pain Blog Carnival is Up

2008-03-27T08:04:00.000-07:00

Please check out this issue of the Pain Blog Carnival - the best postings of the month about dealing with pain. some are personal stories; some are scientific. I am pleased that my post on a game I played with my pain is included.