Grand Rounds at Doc Gurley

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

Pain as Art

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

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)

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.”

---------------------------------------------------------------------------------------

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

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

Mars/Venus....Who Cares!

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

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

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

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

"In the United States, 125 million people are living with chronic illness, disability, or functional limitation. The nature of modern medicine requires that these patients receive assistance from a number of different care providers. Between 2000 and 2002, the typical Medicare beneficiary saw a median of two primary care physicians and five specialists each year, in addition to accessing diagnostic, pharmacy, and other services. Patients with several chronic conditions may visit up to 16 physicians in a year. Care among multiple providers must be coordinated to avoid wasteful duplication of diagnostic testing, perilous polypharmacy, 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.