December Pain Carnival

is up at How to Cope With Pain.

Happy New Year

I wish you all a new year filled with health, love, and peace.

When Pain Returns

These have been rough times. For the past six weeks, I've been feeling ripples of the old pain coming back. They usually slide around at a level 3 or 4, which means I can still follow a conversation and drive by myself. On some days they crescendo to a 7 or 8, which means I lay very still and try to make myself as small as possible, as if by doing so I can corral the pain into a narrower orbit.

Each day I wake up with the fervent belief that today will be the turning point. By late afternoon, I'm looking at my array of medications and debating whether I should take them in order of potency or just chug them down like a drunk doing shots. Pain will do that to you.

Richard so easily slips back into sage caretaker mode. We have been on this ride so many times that he automatically knows how to balance intrusion and distance. He also know how to ask to be invited to enter my orbit of pain, rather than clumsily assault me with volleys of helpfulness.

He will say, "Can I sit with you now or do you want to be alone?" "Do you want my help to problem solve about medication or do you want me to stay out of it?" "How do you want me to tell you if I think you are making a mistake?" And most of all, "How can I help you, my love?"

His presence, his questions anchor me to possibility, to choices that point to a realm beyond the pain. He can't actively stop me, but his steadfastness deters me from plunging into the vortex, which is always a pain spike away.

These have been rough times. But at least I am measuring this experience by time and not by eternity. I do now know that I will be helped, and I will, thankfully, find the next path out of pain.

An Unexpected Conversation in a Waiting Room: The Hope Pyramid

I wrote this post earlier but wanted to repost it as a New Year's offering to all of you. To those of you who have been struggling; to those of you who have had some of your dreams come true; and to those of you who feel like you're still in the dark tunnel. This is a message of hope that was given to me unexpectedly, when I really needed it. I wish you a new year filled with health and peace.
Barbara

---------------------------------------------------------------------------
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. I never knew what happened to that woman in the waiting room, but I can still hear the assurance in her voice. I still have ups and downs with my pain condition, but I have learned that there is always something to be hopeful about -- you just have to keep looking.

I am honored to have been nominated for the 2008 Medical Weblog Award in two categories -- Best Literary Medical Blog and Best Patient Blog.

The finalists will be announced on January 5. Then from January 6 - 12, readers can vote.

What do you do when your partner is not taking care of his or her health?

What do you do when your partner is not taking care of his or her health...at least not in a way that is up to your standards?

If I have a new symptom -- an ear ache, a twisted ankle, a mysterious rash - I will at least call my health care team to describe what's going on and ask for advice. I do know a lot about my own body, and about basic care for basic conditions -- but even so, I will seek medical opinions and consider them as additional data to be factored into my decision about how to take care of myself.

Richard is different. He likes to wait to see if the symptom will go away by itself, or if it will shape itself into some pattern that he can describe. He will consult a doctor when he believes his situation is serious enough. But that moment comes way too late by my measure. Although, I do have to admit that he is pretty healthy, and there have only been a couple of times when his delay had potentially harmful consequences.

This is a real source of tension for us. We have not figured out how to resolve it. I certainly can't make him do it my way, but neither can I sit quietly and watch him injure himself though inaction (imho).

Have you had a similar struggle? How do you handle this situation?

Grand Rounds is Up at A Chronic Dose

Check it out. Laurie from A Chronic Dose asked folks to submit their best post of the year. Check it out

And the November Pain Carnival is also up - the theme is Thankfulness.

Genetic Screening and Love

Would you want to know the genetic profile of the person you're falling in love with? Would you want to know before making a forever commitment if your partner to be had the genes for sickle cell anemia or cystic fibrosis? Would you want to be in the position of knowing the potentially defective genes you're carrying and having to decide whether to tell the person you're dating? Well genetic screenings are going on. Would you want one?

This is from The Daily Princetonian:

"What if the internet matchmaker eharmony.com required a blood test? Or if first dates ended with a thumb pricks instead of a kisses and classified ads included family medical histories? While none of these things have happened as far as I know, increasing emphasis has been placed on a new factor in determining compatibility of couples: genetics.

Earlier this semester the Center for Jewish Life (CJL) hosted a genetic screening. The Human Genetics Program at NYU Langone Medical Center contacted members of the CJL and worked to provide the University community with genetic carrier testing. Participants will soon find out if they are carriers for 16 different diseases.

The NYU Genetics Program website promises that screenings, which are done with a blood sample, will "identify changes in a person's chromosomes" and "ensure that your children will not suffer from these diseases." The information could impact who you date and how, if at all, you conceive a child."

Grand Rounds is Up

at Sharp Brains. Check it out.

Invisible Illness: A Two-Way Street for Couples

Fibromyalgia, chronic fatigue syndrome, Complex Regional Pain Syndrome (CRPS), Reflex Sympathetic Dystrophy (RSD), endometriosis, lupus, chronic pain and on and on and on. These invisible illnesses (real illness in a body that looks ok from the outside) force the sufferer to carry an extra burden. In addition to the pain, fatigue, fever, and fear of the illness, these sufferers must continually face insinuations that they are not really sick but just stressed or tired, or even lazy and self-serving.

For couples invisible illness can become a two-way street.

Ruth and Ben

Ruth had always been gutsy. That was one of the qualities Ben loved most about her. She kayaked level four rivers, para-sailed over Ocean Beach, and could hold the revolved half moon yoga pose for as long as she liked. She wore her physicality as if it were a costume that proclaimed her warrior role in the world.

After Ben and Ruth had been married for two years, Ruth started to feel exhausted after walking the dog. Taking out the garbage left her arms aching for hours. Sometimes Ben would come up behind her and knead her neck and shoulders. Lately, if he touched the wrong spot, she yelped -- as if he had poked her with a hot needle. And even though she was sleeping more than usual, she sometimes felt as if the air itself were draining her of all energy and will. After many visits to specialists, Ruth was given the diagnosis of fibromyalgia.

Ben was sympathetic, for three months. He bought Ruth fragrance free bath oils and organic chicken soup. He walked the dog. He sat next to Ruth and massaged her fingers, which were a pain-free zone. And he stayed inside with her, in her new world, a world that had previously known no boundaries and was now tightly circumscribed by pain and exhaustion.

After three months, Ben got restless. He paced the floor as if looking for the path that would lead them back to their old life, the one that should never have been interrupted by this misfortune. His impatience grew with such force that it soon became the lens through which he viewed Ruth. When he tilted the lens in a more benevolent angle, he would say, "You seem more energetic today. Maybe this thing is finally turning around." On more testy days he might say, "Maybe if you did more, you'd feel better." Through any angle of the lens, he was seeing what she was or what he wanted her to be, not what she had become.

Ruth grew more introspective as she struggled to treat herself with compassion and to accept that fibromyalgia was a condition to live with and not an event to medicate. Ben grew agitated and pinwheeled desperately from possibility to hope to disappointment.

Ben couldn't bear to see Ruth's infirmities, and Ruth couldn't tolerate Ben's insistence on activity and optimism. It wasn't only that Ben, finding Ruth physically unaltered, found it hard to assimilate illness into his estimation of her. It was also that Ruth, in working to accept and accommodate to her new limitations, could not abide Ben's buoyancy, nor could she see the fear and sorrow that were underneath it.

They were becoming invisible to each other. This is the toll that invisible illness takes on couples.

The partners' trajectory, once so unequivocal and entwined gets split. Illness inserts itself into some very tender places in the relationship -- into the image partners have of each other, into the activities and routines the relationship depends on, into the kitchen and into the bedroom. Illness gets to make decisions that once belonged to the couple. Illness casts its broad shadow, and the partners are left to try to find each other in the ebbing light. And if the illness itself is an invisible one, its ability to distort the relationship dynamics is even more insidious.

What can a couple in this situation do?

To do nothing will lead to greater invisibility and distance. As with many couple situations the key is hard core, no holds barred, honest communication. The couple needs to develop a new language that incorporates illness rather than avoids it.

Ruth needs to be able to explain to Ben what she is feeling and how it is affecting her. He does not recognize the cues or have the sensors to know what she is experiencing, so she needs to draw him the map of her illness. One useful indicator couples can incorporate into their language is the 1 - 10 scale (where 1 is let's go to Cancun and 10 is shoot me now). In this way, both partners can see the illness and discuss its implications.

But it isn't enough to just understand how big or small the illness is at a given moment. Ruth and Ben need to talk about how to interact -- what questions can they put to each other, how can they state their needs wherever they are on the illness scale, how can they signal the need for attention or for alone time, how can they be together in silence and in inactivity.

And in addition to asking for what they want, they need to explain what they don't want. Ruth needs to be able to say, "I am taking care of myself in the best way I know how. When you tell me to try going for a walk or how well I'm looking, I feel diminished. Like you don't know me and don't appreciate how hard I'm trying."

And then Ruth can take it one step farther and ask for what she needs from Ben - who really does want to help. Ruth can say, "Ben, I know you're worried and want to help. What would really help is if you could acknowledge that you do see both my pain and my efforts; and just ask me how you can help instead of making suggestions."

And Ben needs to let Ruth know how confusing this is for him and that he can't always tell how she is doing and needs her to let him know if this is a good day (or hour) or a bad one. Ben needs to let Ruth know how alone he feels and that he wants her to invite him into her illness. That when he can help her or comfort her, he feels close to her.

And they both need to be able to have their own form of down time - whether that's meditating or watching football. Again the key is communication. Instead of disappearing into the ozone, each needs to tell the other that he/she is taking a break.

Sometimes, just putting explanatory words under the actions, like subtitles, helps the partners get through it together.

Helping Couples Cope with Breast Cancer

Helping Couples Cope with Breast Cancer
from the Patriot Ledger

Social work professor Karen Kayser hoped her research would help couples cope with breast cancer. What she didn’t expect was how useful it would be when she was diagnosed with breast cancer 21/2 years ago.

“I knew how important it was to have a positive outlook and a supportive partner.”

Breast cancer, she’d learned, is a “we-disease,” and women and men each coped better when each received support.

“I knew it would be important to talk about my husband’s feelings as well as my own,” she said. “I made a concerted effort to be aware of what he was going through, and he was able to support me.”

In essence, Kayser put into practice what she learned from the clinical trial of her Partners in Coping program, developed to help couples communicate and support each other.

In the three-year trial, 26 couples at Mass General Hospital and Dana-Farber Cancer Institute in Boston met nine times with an oncology social worker to focus on specific topics, such as balancing the illness with household and family responsibilities, emotional responses to vulnerability, and feelings about sexuality. After six and 18 months, they answered a follow-up questionnaire.

The control group of 26 other couples were referred to a social worker, the more standard approach. The couples ranged in age from late 20s to late 60s, and all the women had cancer that had not spread and had been diagnosed within the past three months.

“The couples in the program tended to do much better coping than the control group,” Kayser said. “They were talking about their stress, empathizing with each other and showing affection. Over and over, people would say, ‘These are things I think but never talk about.’ Coming into a neutral place and having someone facilitate the discussion opened up what was going on.”

The program was especially helpful for younger couples, who in general found the diagnosis more distressing because of their age and the demands of working and raising children, she said.

“It’s all about people coping with stress and trauma,” Kayser said. “How can you take something devastating and transform it into something good in the long run?”

Grand Round is up at Mexico Medical Student

This Grand Rounds (the week's collection of posts from the health blogosphere) at Mexico Medical Student even includes music.

Gratitude Can Transform You

From a USA Today article:

Giving Thanks Can Make You Healthier, Happier

Lyubomirsky and Emmons are researchers from the University of California-Davis: who have studied the power of gratitude and learned, for example, that:

•People with high blood pressure not only lower their blood pressure, but feel less hostile and are more likely quit smoking and lose weight when they practice gratitude. In one study, patients just called a research hotline once a week to report on the things that made them grateful.

•People who care for relatives with Alzheimer's disease feel less stress and depression when they keep daily gratitude journals, listing the positive things in their lives.

•Those who maintain a thankful attitude through life appear to have lower risks of several disorders, including depression, phobias, bulimia and alcoholism.

•Most people can lift their mood simply by writing a letter of thanks to someone. Hand-deliver the letter, and the boost in happiness can last weeks or months.

Practicing gratitude in these systematic ways changes people by changing brains that "are wired for negativity, for noticing gaps and omissions," Emmons says. "When you express a feeling, you amplify it. When you express anger, you get angrier; when you express gratitude, you become more grateful."

And grateful people, he says, don't focus so much on pain and problems. They also are quicker to realize they have friends, families and communities to assist them in times of need. They see how they can help others in distress as well, he says.

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

May we all find a kindred hand to hold and someone to be grateful for this Thanksgiving.

Kreativ Blogger Award

I am touched that two terrific blogs passed on the Kreativ Blogger Award to me -- Lemon Aide and How to Cope with Pain.

The recipient names six things she is happy about and passes the award on to six other blogs.

Here are my 6 happy things:

1 - The usual suspects -- my sweetie, friends, family, the sky, chocolate, many good days


2 - Pandora - radio from the music genome project


3 - Looking forward to reading Neal Stephenson's latest book, Anathem


4 -


5 - Our Japanese toilet


6 - Memories of my dog, Mina


There are so many great blogs out there, but the blogs I have the pleasure of passing this award on to are:

The Wife of a Schizophrenic
Multiple Synchronicities
But You Don't Look Sick
About A Nurse
Everyone Need Therapy
Discover and Recover

Grand Rounds is Up at Dr. Deb

Grand Rounds is a collection of weekly posts from the health blogosphere. they always make good reading. This week it's at Dr. Deb.

Freezing and Unfreezing

There are these two nude statues, man and woman, standing across from each other in a secluded park. A few hundred years after they've been put in place, an angel flutters down to them.

A wave of his hand, and suddenly the statues have been given flesh, and they step down from their pedestals.

The angel says, "I have been sent to grant the request you both have made after hundreds of years of standing across from each other, unable to move. But be quick--you only have fifteen minutes until you must become statues again."

The man looks at the woman, and they both flush, and giggle, and run off into some underbrush. An intense rustling comes from the bushes, and seven minutes later, they both come back to the angel, obviously satisfied.

The angel smiles at the couple. "That was only seven minutes--why not go back and do it again?"

The former statues look at each other for a minute, and then the woman says, "Why not? But let's reverse it. This time you hold down the pigeon, and I'll shit on its head...."

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

Not to wax too philosophical about a silly story - but I think it's often in the nature of the couple relationship that we get frozen into positions. We can be drawn to each other because we see in the other qualities that complete something for us. Kindness where we might have experienced harshness in the past. Adoration reflected back at us from our partner's eyes instead of the contempt we came to expect from someone who was once important to us. Help instead of invisibility. Sorrow for our pain, instead of self righteousness.

Once we receive these surprising gifts, it is easy to lock the partner into this role, defined by these attributes, a role we so much want him or her to ceaselessly portray. And to become intolerant of any deviations from the script.

Richard needs me to listen to him, to give him the complete hearing his family was unable to provide. I need him to see me, to reflect back to me my beauty and not shame me for my warts. When I can't listen to him, or he can't recognize me, we can get frozen. We can get stuck in a struggle to coerce the response we so desire from the other, and ironically, this struggle drives away what we most want -- connection.

Illness, of course, makes this dance more intricate. Pain, exhaustion, fear on the part of the ill partner can make the needs feel more urgent while the ability to articulate them becomes more remote. Helplessness, empathy, anger, and exhaustion on the part of the well partner can have the same effect. What is the result? Freezing. Getting locked in place in repetitive, fruitless attempts to extract comfort from someone as wounded and stuck as you.

How do you unfreeze? Go shit on a pigeon.

Not literally. But introduce something unexpected into the mix. Something startling. Especially something funny. Something that disrupts the pattern and starts the unfreezing. Anything from Monty Python or the Daily Show, even the Weather Channel. Watch a small dog try to carry a very large stick. Reach across the aisle and grab hold of your partner's hand.

Go shit on a pigeon.

True Love Crosses All Lines: Tarra and Bella

The story begins:

"In the secret back hills of rural Tennessee an unusual relationship had developed......"

You will delight in reading this remarkable story about Tarra and Bella.

I think we learn the most about true love and caring from the unexpected places.

Alzheimer's Caregivers: The Hidden Patient

When any chronic illness takes root in a family, everyone gets sick. But the one whose suffering is often equal to the patient's, and is often ignored, is that of the caregiver. Dementia caregivers in particular, often the partner, suffer physical exhaustion, emotional depletion, and chronic depression.


from Johns Hopkins Health Alerts:

Caregivers -- The Hidden Patients

Approximately 80% of dementia patients are cared for by family members. That's millions of family members who provide care for a parent or relative, many of whom must balance these duties with the demands of their full-time jobs and other family members. If you are caring for a family member or friend with Alzheimer's disease, this Special Report from a recent Johns Hopkins Memory Bulletin offers practical support and advice.

With our population aging and the number of Alzheimer's disease patients in this country predicted to steadily increase over the next two decades from 5.5 million today, the number of caregivers will have to increase as well. If you are not a caregiver already, the chances are high that you will become one at some point.

Studies that measure depression or distress in caregivers report that rates of these symptoms are two to three times higher in dementia caregivers than in the general population. Other studies reveal that social isolation and family disagreements are more prevalent in Alzheimer's caregiver families than in similar families who are not caring for someone with dementia. What kinds of emotional problems do caregivers of Alzheimer's patients have? Many experience a mixture of feelings, including frustration, sadness, anger, irritability, helplessness, guilt, and depression.

Being a caregiver for a family member or friend with Alzheimer's disease can be so stressful that doctors often think of caregivers as "hidden patients." Because caregivers are often faced with overwhelming day-to-day responsibilities, many stop going in for medical checkups, self-medicate their anxieties with alcohol, don't exercise, and eat poorly.

Not surprisingly, Alzheimer's disease caregiver stress takes a heavy toll. Caregiver stress and burnout symptoms are very similar to those of depression. They include:

• Denial . . . about Alzheimer's disease and its effect on the person affected. "I know Mom will get better. They must have made a mistake."
• Anger . . . at the person with Alzheimer's disease and others. "If he asks me that question once more, I will scream!"
• Withdrawing socially . . . you no longer want to stay in touch with friends or participate in activities you once enjoyed. "I don't care about getting together with the neighbors anymore."
• Anxiety . . . about facing another day with the Alzheimer's patient and what the future holds. "I'm worried about what will happen when I can no longer provide care."
• Despair . . . you feel sad and hopeless much of the time. "I don't care anymore."
• Exhaustion . . . you barely have the energy to complete your daily tasks. "I don't have the energy to do anything anymore."
• Sleeplessness . . . you wake up in the middle of the night or have nightmares and stressful dreams. "I rarely sleep through the night, listening to hear if Dad is out of bed."
• Emotional reactions . . . you cry at minor upsets; you are often irritable. "I cried when the grocery store was out of my favorite cereal. Then I yelled at the clerk."
• Lack of concentration . . . you have trouble focusing, and you find it difficult to complete complex tasks. "I used to do the daily crossword. Now I am lucky if I can concentrate enough to solve one quarter of it."
• Health problems . . . you may lose or gain weight, get sick more often (colds, flu), you may develop chronic health problems (backaches, headaches, high blood pressure). "Since the spring, I have had either a cold or the flu. I just can't seem to shake it."

If you're experiencing any of these symptoms, consider contacting an Alzheimer's disease support group, talking with your religious or spiritual leader, consulting with your primary care physician, or making an appointment with a counselor. Here are some good resources to consider:

• The Alzheimer's Association (225 N. Michigan Ave., Fl. 17, Chicago, IL 60601- 7633; (800) 272-3900). This fantastic group has been at the forefront of helping caregivers and supporting research for more than 25 years.

• Local medical centers. Some medical centers offer caregiver courses that teach practical techniques for managing the anxiety, agitation, aggression, and other upsetting behaviors that people with Alzheimer's disease may exhibit.

• Alzheimer's support groups. Alzheimer's support groups are great sources of helpful information, solace, and compassion. The other people in these groups will understand the complex and sometimes conflicting mix of emotions that Alzheimer's disease caregiving engenders, such as grief, anger, resentment, helplessness, embarrassment, guilt, despair, and even suicidal thoughts.

Grand Rounds at Emergiblog and Pain Carnival at How to Cope with Pain

Check out Grand Rounds at Emergiblog. It's a really good read.

For posts about pain and pain management approaches, check out the Pain Carnival at How to Cope with Pain.

Two Heart That Beat As One...Really!

From MSNBC, an article by health editor Linda Dahlstrom

Never to part: Devoted couples share life, death

"Research shows that in some cases, one person’s heartbeat can affect, even regulate, another’s, possibly acting as a type of life support.

In one such study, Rollin McCraty, research director at the Institute of HeartMath in Boulder Creek, Calif., looked at what happened to six longtime couples' hearts while they slept. Heart-rate monitors revealed that during the night, as the couple slept beside each other, their heart rhythms fell into sync, rising and falling at the same time. When the printouts of their EKGs were placed on top of each other, they looked virtually the same.

“When people are in a relationship for 20, 30, 40, 50 years, they create sort of a co-energetic resonance with each other,” says Lipsenthal, who is the past director of Dr. Dean Ornish’s Preventative Medicine Research Institute in Sausalito, Calif. “A simple analogy is two tuning forks, put next to each other. They create a co-resonant pitch. What happens when two people sleep together for 50 years? What happens when one goes away?”

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

A Story:

I remember one week, early on, when I was at the height of my pain condition, Richard, my sweetie, developed a raging cold. I was feeling so fragile that the thought of contracting his cold on top of bearing my rampant pain was intolerable. We decided to keep at least 10 feet and preferably a closed door between us.

Prior to this moment, his touch was my anchor. When he put his cool hand on my forehead, the swirling pain and fear quieted. When I leaned up against him, I felt as if the universe were, maybe, on my side, at least for a moment.

We stayed apart for a day and a half. During that time, my pain spiraled out of control. I couldn't sleep. I couldn't even eat the soft pears and oatmeal that had become my entire diet. I wanted his comfort, but dreaded the contagion.

As I lay weeping in the living room, Richard phoned his brother for support. Ten minutes later, Richard burst into the room and wrapped his arms around me. As he held me and stroked my hair, I felt the pain recede. I asked him what his brother said. He answered, " F--- the f---ing cold. Get in there and hug her."

Now, that better times are more normal, this has remained one of our mantras.

The Pain-Panic Syndrome

The combination of pain medication, energy work, yoga, emotional renovation, and HBO has helped me to manage my pain so that, most days, I act and feel like a normal.

But some days, the pain resurrects. What starts as a slow ache in my lower abdomen in the morning can escalate into a of herd of wild stallions stampeding through my body by mid-afternoon. This explosion of pain can be catalyzed by an argument with my sweetie, worry about my parents' health, a change in the weather, a freak anomaly in the space-time continuum, a butterfly flapping its wings in China -- in other words, "Who knows?"

Because I, gratefully, have so many good days now, the first signals of a pain spike are enough to launch me into panic mode. I forget how many years I have dedicated to learning how to move beyond pain, to attach my consciousness to something bigger than my own measly ego, to use my mind to meditate the pain into a blue wave that flows out of my body with each breath. I forget that I have an arsenal of medications I can combine into a giant hammer that can slam any pain spike into oblivion. I forget that the pain comes, and it goes, and that it will never be as wild and uncontrolled as it was in the first years of hell.

Of course, panicking over pain only feeds it. When I panic, I constrict my muscles and my mind so the space I create around the pain is tight and tiny; and therefore every thrust of the pain is that much sharper and always hits its target.

Here's what helps when the reminder of pain starts to set off a full blown panic-pain attack.

I try to breathe consciously. To follow the path of my breath as it swells and ebbs instead of focusing on the ripples of pain. I move my breath to those places where pain grips, and I watch as each breath pries pain's fingers looser and looser.

I remind myself that -- "This is now and then was then." That this pain episode may last hours, all day, even a couple of days -- but not years. There will never again be years of relentless suffering. I am better now. And I have tools now that I could not have imagined then.

And I ask for help. I ask my sweetie to remind me of the truth I try to hold onto -- the truth that the panic makes me forget. He tells me, "This will pass. Don't worry. You know it will. Now, let's see what's on HBO."

Phenomenon of spouses dying close to each other

From MSNBC, an article by health editor Linda Dahlstrom

Never to part: Devoted couples share life, death

"Dying beside the love of your life and passing into eternity together is the stuff of legends, but it’s also a documented phenomenon among longtime couples.

Studies around the world have shown that the rate of mortality spikes among bereaved spouses soon after their beloved has died. One study published last year by researchers at the University of Glasgow followed more than 4,000 couples and found that, on average, widows and widowers were at least 30 percent more likely to die of any cause in the first six months following a spouse’s death than those who hadn’t lost a partner. Another large study in Jerusalem found the bereaved spouse's risk of death during those first six months rose by up to 50 percent.

“We see it all the time,” says Dr. Hope Wechkin, the medical director of Evergreen Hospice in Kirkland, Wash. “Often a patient will come on to [hospice] service and we find out their spouse has died six weeks earlier or so. … I think it’s about connection. For many people, their spouse represents their greatest sense of connection to this world.”

Do any of you know couples in which this phenomenon happened?

Grand Rounds is Up at Notes of an Anesthesioboist

Have a read here.

When it's Too Late to Change Your Relationship

My father has had a desperate year.

Before he turned 83, he went swimming every day and sat by the pool for hours "schmoozing" with neighbors from his condo building. He bragged that he was the youngest guy in his synagogue and therefore often had the honor of carrying the twenty pound torah scroll. He told stories about the old days -- spending his war years on a battleship in China, playing stickball on the streets of Brooklyn as a kid, running errands for a nickel for the Murder, Incorporated gang that owned his neighborhood, and meeting my mother and being overcome by her dark beauty.

This year, he has lived more in rehab facilities than in the condo he shares with my mother. He started falling. He fell four times within six months. One day he got into a car accident. He had successful back surgery to insert metal pins along his spine to brace a few fractured discs. His pain is waning and his spirit is returning. But he has 24 hour home health aide coverage and needs to be shepherded when he turns over in his hospital bed, takes a shower, or tries to walk.

His voice is now an old man's voice, hoarse and tired. It often fades by the time he gets to the end of a sentence. He remembers everything clearly but just loses interest in the details. The thought of getting back into the pool and swimming again keeps him going.

My mother is holding steady with her afflictions and her medications. She carries on with reading her mystery books and tending to the building's library. Her social network consists largely of her doctors, the doormen, and her brothers. She cooks meals and sorts through paperwork. She lets the aides do everything else for my father.

My parents orbit around each other. Sometimes they collide in affection; other times in hostility; but mostly in neutral cooperation. This pattern is no different than the one they existed within for the past fifty years.

I watch with a heavy heart. I know that they will never find a love that has at its core something sublime instead of just complacency. I see that they will never find the others hands hidden in the mountain of ashes left by their disappointments in each other.

It's too late and they are too sick to change a relationship this old.

Grand Rounds is Up at M.D.O.D.

Another great collection of posts in the medical blogosphere. Have a look at M.D.O.D.

I thank them for including my post on Caretakers.

Sarah Palin Debate Flow Chart

One of the blogs I read is Michael Krigsman's blog on Technology Project Failures. The Palin Debate Flow Chart, from one of his posts, totally cracked me up.

Caretakers

Over the past ten years, I have talked to many caretakers of ill partners. Many have been angelic; many have been depleted; all, in their own ways, are heroic. Here is a montage of what I have heard. I am interested in what you have to add from your experience



How profound and humbling and degrading to prepare bland, easily digestible foods and spoon feed them to your partner who on that day at that time is too weak or feverish or pained to be able to feed himself. To wipe the sweat from his face after rounds of chemo. To maneuver him into the shower and wash the urine that leaked down his legs from a bladder no longer control in his control. To run to his side when he calls out, fearing that, this time, something really bad happened.

How sacred it feels to read aloud to him from his favorite novel until the strain etched in his face by pain slowly softens, and he slides into sleep. To hear him snore is the sweetest song.

How desperate and hopeful and tedious it feels to discuss endlessly the algorithms of treatment options. Should we (not you) stop this medication, which seems to be losing momentum, and switch to that medicine, which has untested side effects? Should we travel to Johns Hopkins or the Mayo Clinic or the Cleveland Clinic to see the specialist whose monograph on gene therapy or angiogenesis we stumbled across in one of hundreds of web searches? Would it be bad or good to combine acupuncture, Chinese herbs, and chemotherapy? How do we know whom to trust?

How rageful it is to lose the time you were supposed to have, the money that was to build a retirement cottage on the lake, the thousands of moments that were supposed to flow without constraint from one mindless activity to the next.

How tragic when your sacrifices are met with indifference, resentment, or manipulation. When the sick person instead of gratitude, shoves his resentment at his own condition in your face, onto your shoulders, inside your head, and demands of you what will never again be his. And when family and community expect you, without permission, to truncate your world in order to extend his comfort and safety. And when you berate yourself for an instance of selfishness, and eventually have been worn so thin that you can no longer distinguish between selfish and selfless. When automatic pilot takes over your behavior and you shut down all feeling except anxiety.

How relieving and terribly lonely it is when it ends. And what a long way it is back to rebuilding yourself.

Grand Rounds is Up

This week's Grand Rounds, the best posts of the medical blogosphere, is up at two sites -- Kevin M.D. and Emergiblog. Dr. Val is the host. Her new blog - the Getting Better Blog will be active soon.

Putting Illness in its Place: Betty & Peter's Story of Pancreatic Cancer

Couples dealing with illness understand too well how illness turns a relationship of equals into one of patient and caretaker. Autonomy slides into dependency; activity is regulated not by interest but by stamina, and time gets measured by intervals between medication doses.

Illness gets triangulated into the relationship. The intimate dyad becomes an unwelcome menage a trois in which illness winds up as the master.

Betty was magnetic. Her deep green eyes and glossy black hair made you want to move in close for a better look. Her smile made you want to be her friend. When she told her wonderful stories about life, spirit, and nature you felt as if she were taking you for a ride to a place that was familiar, but beyond where you could ever get to on your own. Betty lived large. She climbed mountains, swam lakes, sang like a diva, and when she listened to you, you felt as if you were part of something special.

Her husband Peter adored her. He loved sitting in a corner and watching her captivate a room of people. Peter was more private and analytic. His world was a place of numbers that usually tallied accurately and led to the expected conclusions. He was Betty's anchor. Betty was his magic.

Over the period of a few months, Betty, who was thin already, started losing weight. Her appetite diminished, and she began having stomach aches. Her clear eyes looked a little cloudy. After several visits to her primary care doctor and a few specialists, she was diagnosed with pancreatic cancer.

Cancer soon became the dominant partner in their relationship. Chemotherapy became the organizing principle in their lives. Betty felt as if she had become a character in someone else's story and no longer told any of her own. Instead of reading biographies and books on finance, Peter dedicated his free time to researching pancreatic cancer. They stopped talking about dreams and horizons, and focused their attention on the size of her tumors and ways to mitigate the effects of chemo.

Their life was shrinking while, ironically and luckily, the treatments began to have a positive impact and doctors were offering her more time. Slowly Betty and Peter realized that their trajectory was not going to be a steady descent towards death. They were granted grace periods during which normalcy was possible. The problem was that they had constricted their imaginations and their hopes so much and had been submerged for so long in a world where normalcy was equivalent to pain and illness that they lost touch with how to live.

They began trying to reintroduce pleasure into their lives. One day, as they were driving along the back roads in rural Maine, they stopped for a picnic lunch by one of those astounding, pristine, hidden inland lakes. They noticed an abandoned log cabin on the shore and went to investigate. It was for sale, and they bought it.

The cabin emancipated them. The lake restored them. As they began transforming the cabin from a dilpadated shack into a rustic palace, they were transformed. Instead of monitoring tumor growth, they measured cabinet sizes and plotted out space for a garden.

I like to imagine Betty sitting in a wooden rocking chair on the front porch of the cabin. I can hear the squeaks her chair makes as she gently rocks. Her eyes are half closed. The reflection of the autumn sun bounces off the lake and steaks her raven black hair with blazes of fire.

How do you disentangle illness from the fabric of your relationship? How do you contain illness in its proper place, as intruder, and not as intimate partner? I think we all need to find our equivalent of the cabin by the lake.




Note: This story was inspired by a friend's experience, and thi s post is in honor of her journey . All identifiers have been changed.

A Love Sonnet for a Rainy Day

It's gray and raining. I'm worried about my father's health, my mother's ability to cope, the people who live in the path of a hurricane, and the wreckage of the American political process. So here's one of my favorite love poems by Shakespeare.

When in disgrace with fortune and men's eyes,
I all alone beweep my outcast state,
And trouble deaf Heaven with my bootless cries,
And look upon myself, and curse my fate,
Wishing me like to one more rich in hope,
Featur'd like him, like him with friends possess'd,
Desiring this man's art, and that man's scope,
With what I most enjoy contented least:
Yet in these thoughts myself almost despising,
Haply I think on thee,--and then my state
(Like to the lark at break of day arising
From sullen earth) sings hymns at heaven's gate;
For thy sweet love remember'd such wealth brings
That then I scorn to change my state with kings'.

Grand Rounds is up at Apple Quack

It's a good read - check it out.

Living With A Partner Reduces Risk of Alzheimer's

(The following is the press release describing research from the Karolinska Institute -- one of Europe's largest medical universities, located in Sweden)

Living with a spouse or a partner decreases the risk of developing Alzheimer's and other dementia diseases. This according to a study by Krister Håkansson, researcher in psychology at Växjö University and Karolinska Institutet, Sweden. The results were presented for the first time yesterday at the world's largest dementia conference.

"This is, for me, an overwhelming start," says Mr Håkansson. "It's the first study I've done in this field, and the results are astounding. They indicate a very strong correlation between this type of social factor and the risk of developing dementia."

The new findings are based on data from a Finnish study, which was unique in that 2,000 people were examined at the age of around 50 and again twenty-one years later. Normally, dementia researchers only study late-life individuals. Previous research has shown that an active lifestyle, both intellectually and socially, can decrease the risk of developing dementia; since a shared life often entails considerable social and intellectual stimulation, the point of inquiry of this present study was whether living with a spouse or a partner can help to ward off dementia.

The results show that people living with a spouse or a partner in midlife ran a 50 per cent lower risk of developing dementia than people living alone, even when controlled for other risk factors, such as age.

How long a person had been single and for what reasons also affected the chances of developing dementia. Those who had lived alone their entire adult life ran twice the risk, while those who were divorced in midlife and remained subsequently single ran three times the risk.

Widows and widowers ran the greatest risk Those at greatest risk of developing dementia diseases were people who had lost their partner before middle age and then continued to live as a widow or widower. The study showed that the chances of developing Alzheimer's for these individuals were six times greater than for married couples.

"This suggests two influencing factors: social and intellectual stimulation and trauma," says Mr Håkansson. "In practice, it shows how important it is to put resources into helping people who have undergone a crisis. If our interpretation will hold, such an intervention strategy could also be profitable for society considering the costs for dementia care."

Grand Rounds at A Chronic Dose

Check out this week's Grand Rounds at A Chronic Dose for some interesting reading.

Chronic Pain & Couples: Learning to Find Each Other in the Shadows

coryphella on flickr

For couples, when illness lingers and turns our path towards a dark unknown, we start to become shadows to each other.

The present is too often a fragmented reflection of what used to be. The invitations we can't accept, the activities we can't do, the conversations we don't want to be part of are reminders of a brighter time in our life that now stands in the shadow of illness. When I was living with uncontrolled pain, my days were consumed in attempts to stay just a few inches ahead of the next spike. A sunny morning, the aroma of coffee, or a good book, had no meaning. Cheery news from a friend was almost unbearable.

As I moved farther away from life, into the shadows of illness, I drifted to a realm where Richard could not follow. He could watch and reach out towards me, but he could not enter. He didn't have the right ticket, and I had no return.

We started becoming shadows to each other, our vitality dimmed by all those sweet things we could no longer hold onto. When he looked at my face he saw the gray mask of illness. My eyes no longer focused on the world and only offered him flashes of someone he once knew. Every time he left the house to go to work or the gym or have dinner with a friend, I felt relief at his remaining connected to normalcy; but each venture broadened the shadowland that was growing between us.

I think had we not had such a long history together, and had we not already learned to face one another and speak the hardest truths, we would have lost each other. The shadows would have eventually rendered us unrecognizable.

How did we learn to keep finding each other?

We never learned to dispel the shadows, but we found ways of creating new venues where we could see each other more clearly. Places that had no ties to our earlier times and were therefore immune to a gathering of shadows.

We learned to sit in silence together. Our old life was one of activity. Now, in silence, we could slow down enough to feel something essential for each other, something that endured.

We discovered the small things that gave us comfort. Our old life was about big things -- vacations, climbing mountains, work achievements. Now Richard stroked my hair and read aloud Jane Austin or Tolkien. When I prepared the colorless, bland foods I could eat, I offered him some. When he was at work, he texted me to let me know he was thinking of me and hoping I was having an ok day. I texted him to let him know when I had good moments. On Sunday nights at 9:00pm, no matter how uncomfortable I was, we watched the Sopranos.

We spoke about our fears of losing each other. And each time we did, naming the fear diminshed it.

We learned to build bridges to each other, above the shadows.

On: Sexual Health; Food for Women; Grand Rounds; Pain Carnival

Here are a few interesting blog posts that were emailed to me:

From Nursing Degree.net a post on 53 Surprising Facts About Your Sexual Health and another post on 100 Best Foods for Women.

And while you're at it - Grand Rounds is up at Rural Doctoring.

And the August Pain Carnival is up at How to Cope with Pain.

Grand Rounds at Six Until Me

Kerri at Six Until Me did a great job at this week's Grand Rounds. Please check it out.

When Illness Begets Illness: A Story About Breast Cancer

Five years ago Dave began experiencing headaches for the first time in his life. He attributed the headaches to increases in stress at work. Then he began slurring words and feeling low grade nausea. His doctor diagnosed a brain tumor. Janie, his wife, stayed by his side during the entire ordeal of surgery, chemotherapy, and, eventually recovery. They live "on alert," watching for signs of a recurrence.

Two years ago, Janie was diagnosed with breast cancer. She had a mastectomy, followed by several rounds of radiation. Her prognosis for recovery from this cancer is excellent.

However, her surgeon decided to do a largely unused form of reconstructive surgery. He took some muscles and tissue from her abdomen. Janie, a good patient, pleased with the cancer prognosis, did not research or ask questions about this method of reconstruction.

The newly fashioned breast looked good enough, but Janie was left with chronic abdominal pain. She began to take pain pills.

The story goes on.

The abdominal surgery soon resulted in a hernia, which required further surgery.

The hernia surgery, left behind a gnarled, twisted root system of scar tissue in her intestine.

Her pain is now intense, for most of the day, every day. She is chronically constipated and is now taking the last in the series of drugs available to help push waste through her constricted intestines. She has started having panic attacks. She sees that she is on a path that is heading towards a colostomy and can't tolerate the thought of undergoing more surgery.

This is the story of a couple delighted to have found each other after unhappy first marriages. For years they worked, jogged, played music, and raised a child. They remained loving and supportive through his brain cancer and her breast cancer. They still held hands and stroked each others' hair in the aftermath of her botched surgeries.

Hope has propelled them along. They are not in their 80s. They are not even in their 60s. They are in their late 50s. They had every right to expect health tranquility for another few decades. And when illness intruded, they had faith in doctors, in medicine, and in a bountiful trajectory of life that provides renewal for each incidence of sorrow, until the end.

But they have lived in their current hell for too long now. They see no path to renewal. Their love is strained and may not be able to offer them a solid bridge between panic attacks for much longer.

They have been each others' salvation for so long that they do not know how to take care of themselves as separate individuals. When the stress of illness is so severe and prolonged, it is critical that each partner put in place a support platform for him or herself. When being together pulls each partner down into a vortex of fear, depression, and uncertainty, each person needs to create a separate safety zone that can provide some nourishment. That zone can include friends, work, activities, therapy, meditation, time in the woods or by a river.

Sometimes, in desperate circumstances, partners have to stand alone in order to hold each other up.

Love and Healing

A while ago I interviewed a Jungian analyst about the topic of couples and illness. He bypassed practical advice and moved quickly to the realm of the transcendent. He talked about love. Not specifically romantic or sexual love but love as a creative act -- one that opens up the possibility of bringing new forms and new potential into being. "Love brings to being that which is not -- love creates," he said, and can therefore contribute in untold ways to healing.

Here is a surprising story about love. Tell me if you don't feel a sense of possibility after watching this.

Check out July Pain Carnival

On How to Cope With Pain (I'm pleased one of my post was included).

On NPR: Championing The Caregiver's Cause

Excellent segment on NPR, Fresh Air. Terry Gross interviewed Carol Levine about being the primary caretaker for her husband in a piece called, "Carol Levine, Championing the Caregiver's Cause."

"For 17 years, home health-care advocate Carol Levine never truly left her job. Levine spent her work days at the United Hospital Fund, focusing on the needs of family caregivers. When she came home, she devoted her time to caring for her housebound husband, who was seriously injured in a car accident in 1990.

In 2007, Levine's husband died. It was, she tells Terry Gross, as if she had lost her husband twice: once in the accident, and then once again when he actually died."

Levine also edited the book Always On Call: When Illness Turns Families Into Caregivers.

Grand Rounds at Grunt Doc

A varied collection of interesting posts from the medical blogosphere. Have a look at Grunt Doc.

My Own Private Idaho

In 1991 Gus Van Sant wrote and directed a dark and compelling movie called My Own Private Idaho. It is a story of two friends who go on a quest for identity and connection and find something bigger than either one ever imagined.

This past week Richard and I took our first real vacation since my pain condition started eight years ago. We went to our own private idaho, which was, coincidentally, in Idaho. We did a six day, 120 mile white water rafting trip on the middle fork of the Salmon River.

This was the kind of adventure we used to do BP (before pain). We hiked the Canadian Rockies, climbed Mt. Kilimanjaro, flew with a bush pilot in the highlands of Papua New Guinea, scuba dived in the Cayman Islands. We loved to have a destination without a plan. To show up and follow the wind. We were our best selves, and at our best couple-ness, when we were moving up a mountain or diving into deep ocean. It was on dry land, within too easy reach of a wireless internet connection, that we usually lost ourselves.

When pain was my primary companion, my body and imagination were at its service. I could no more envision a wilderness adventure than I could see turning myself into a double half caf skim milk grande latte. My world was binary: pain - less pain.

When this rafting trip opportunity arose (it was at a friend's inviation who wanted to celebrate her 50th birthday in this way), I was hesistant. I feared being hundreds of miles away from Walgreens (where I send my prescriptions), a heating pad, and my pain specialist. The "what-if's" started accumulating. What if I have a pain spike? what if my meds get wet? what if it rains (my pain liked the rain)? Richard, the scientist and primo problem solver had work-arounds for all my worries.

Then I began worrying about being around twenty-five people for a week. Even BP, I needed a daily dose of solitude. AP (after pain), pain and I shared a special, private cell that only Richard and one friend ever entered. How could I focus and balance with so much human stimulation around every day?

I described my crowd anxiety to Richard. He smiled and said, "How nice to see you worrying about something other than pain. Just remember, a few years ago, a trip like this would have been unthinkable."

As soon as he said this, my perspective (and anxiety) shifted. It felt so sweet to indulge in the luxury of a normal worry.

The trip was amazing. I paddled hard and was soaking wet for 5 hours every day. My meds stayed dry. I met some wild Texans, and four take-no-prisoners Montana women who came packing water guns. I didn't think about pain much. For a week, I got reacquainted with my old self.

While I was away on vacation.....

Check out this hilarious Grand Rounds at The Blog That Ate Manhattan, built around our favorite Seinfeld characters.

Here's another one on Unprotected Text.

I'll write about my vacation as soon as I wade through the mountain of emails that accumulated in my inbox over the past week.

July Fourth

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

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

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

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?

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

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."