May this holiday season and New Year bring you what you most desire

I'm a sucker for these interspecies relationship clips. Here's one that shows not only can love cross boundaries, but so can kindness.

If Your Partner Had Become Sick While You Were Dating, Would You Have Committed to the Relationship?

For many of us, first came the relationship and then came the illness or serious accident.

We met, fell in love, committed or got married, and then illness became the uninvited third member of the relationship. By the time illness entered, we had joined bank accounts, mixed laundry, combined dish sets, and co-mingled friends and dreams. There was a relatively solid platform for the relationship, and illness landed on that platform. When you're still dating, you might be in love, but the platform isn't that solid yet.

If your sweetie had become ill with a serious condition (perhaps the same one he or she has now) while you were still dating, would you have committed to the relationship?

The sad-sweetness of holidays

My friend lost his wife eight months ago to leukemia. One month ago his grand-daughter was born. Her middle name is his wife's first name. This was his first Thanksgiving without his life partner in over 35 years. No one mentioned her name or spoke about Thanksgivings past - perhaps for fear of upsetting him. He did not speak of her either - perhaps for fear of darkening the day.

I think the not speaking made the day more lonely for all of them. Since they could not talk about the sadness of her absence, they couldn't reach the sweetness her presence brought to the table in years passed.

I don't know about you, but I think it's far better to speak and hold the sorrow than to sit alone together in silence.

Remember Love?

One of my favorite poems - and the only one I know by heart:

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'.

Sonnet 29, William Shakespeare

This weekend I went to the wedding of two exquisite people. I've known him since he was a child, and although I just met her a few years ago, I feel as if she is my sister/grandmother/daughter/friend. They are in love and in health. They can make beautiful plans and unravel tightly wound knots with optimism. They have time. They have the luxury of taking today for granted and concentrating on building their tomorrow on a foundation of great expectations.

It was a joy and a liberation to join in their celebration. Because even those of us who have passports to regularly visit the kingdom of the sick, as Susan Sontag describes it, need to be reminded of how penetrating love can be. Love is the hand that can point us toward a better moment, the arm that can encircle us when we are shrouded in our own misery, and the essence that can metabolize a depleted spirit into something lighter and more buoyant.

L'chaim -- to life!

Grand Rounds is Up

Grand Rounds is a weekly collection of posts from all corners of the healthcare blog world. This week it's hosted at: Sumer's Radiology Site.

Sharing the Worry

One habit Richard and I got into when I was at my worst was to share the worry. Some days I was so laden with worry -- What if I can't get an appointment with the one specialist who can cure me? What if I have to wait three months to see her? What if she winds up letting me down too? What if the new meds undo whatever slim good the old meds were providing? What if I'm in too much pain to make it to my niece's graduation celebration next year? What if... what if... what if...???

A wise person once said to me, "Don't worry twice." Don't pre-worry about a set of circumstances that live in the future. Good advice....but...

Sometimes worrying was the most energetic I could be. Worrying kept me tethered to the possibility of some other reality, one in which I didn't suffer, in which I didn't have to watch Richard flail, helpless to make me better.

Sometimes worrying was the only lifeline I could muster. You know what I mean?

But sometime worrying became too encompassing, too heavy. It flattened me.

Those were the times when Richard would step in and ask me if he could carry some of my worry load. "What can you let go of, even for an hour?" he would ask. There was always something. I pretended to put it on the table, and he pretended to pick it up. Sometimes, you are what you pretend to be, and this little scenario would often make me feel a bit lighter. On more enlightened days, I would realize that if I could let go of one worry, why not two, five, all of them. As long as Richard was safeguarding them for me and could return them upon request, I could let them go.

What do you do with your worries - as ill or as well partner? Do you protect your partner from them? Do you share them? Do they overwhelm you quietly? Do you release them?

Many of you probably read about or saw clips of Pat Robertson's recent foot-in-mouth episode. He recopmmended that a man who had been taking care of his wife who is ill with Alzheimer's think of her as the "walking dead" and get a divorce and find a new companion. Oh yes, and make sure his wife is getting good "custodial" care.

WHAT!!!!!! you may say.

Well here is what I and my colleague said in a recent op ed published in the Chicago Tribune:

Pat Robertson is dead wrong

By Barbara Kivowitz and Roanne Weisman

September 23, 2011

A person with Alzheimer's is not "kind of" dead. Not by a long shot. And televangelist Pat Robertson should know better than to speak flippantly from a position of authority on a matter that is complicated, nuanced and deeply personal.

As we learned through interviews with many couples, as well as with medical, spiritual, legal, rehabilitation and psychological experts, while writing "In Sickness As In Health: Helping Couples with the Complexities of Illness," couples find their way to deal with illnesses and catastrophic injuries.

We know what we are talking about when we say Robertson should beware of trying to make blanket statements without the benefit of knowing all the facts and issues. We have found that dealing with illness is a deeply intimate part of the couple relationship. What is right for one couple may be completely wrong for another.

When illness invades the couple relationship, partners ask themselves and each other some really hard questions: "What do I want to do for this person whom I have loved for many years?" "How much of my life do I give up to take care of my beloved?" "How do I sit by my beloved's side and watch her suffer?"

Robertson's assertion that divorcing a spouse with Alzheimer's is justified because she is "gone" is more than simply callous and insulting to anyone who has ever loved another. It goes to the heart of both morality and medical ethics. Physicians struggle every day to counsel families about the right time to cut off life support. Ethicists struggle to balance the impact of devastating disease with the persistence of the essential self.

To announce that someone is "gone" when she still has an emotional life — not to mention sensation in her skin, organs and tissues — is to dismiss her as a human being.

For those who find themselves at the intersection of lifetime love and overwhelming obligation, the right path is often painful and difficult to find. Robertson should have counseled this husband — and all partners grieving over the illness of their loved one — to seek psychological support, medical information, spiritual guidance and ultimately to look inside themselves and their relationship to determine the right thing to do. Instead he advised the husband of the ill woman to make sure the wife has custodial care before divorcing her and starting all over again.

He presumes too much.

Barbara Kivowitz, a consultant and psychotherapist in Boston, and Roanne Weisman, a science writer and author in Boston, are co-authors of the forthcoming book "In Sickness As In Health: Helping Couples Cope with the Complexities of Illness."

What Couple-Related Decisions Have You Made Because of Illness?

There is so much uncertainty that accompanies illness, but one thing is certain -- illness brings change into how you think about yourself and your relationship. Illness can be a suppressant, but it can also be an activator. Illness can become a box into which you and your partner put your dreams; or it can be a catalyst to accelerating plans and making new decisions.

My illness led to our getting the most amazing dog in the universe (as is yours). It also led to writing a book about couples and illness. And it deepened Richard's and my ability to talk about the hardest topics.

Below is an excerpt from an article about a couple who decided to get married because he was about to undergo surgery for a cancerous tumor.

Geneva couple marries days before life-threatening surgery

by Frank Vaisvils, 8/31/11

David Bieszke of Geneva wasn’t going to give up on asking his girlfriend of 18 years, Jennifer Pedersen, to marry him, and she returned that persistence by insisting doctors treat her would-be husband for his chronic illness even when they were told nothing was wrong.

David’s health slowly deteriorated in recent years, and his family doctor was perplexed about the cause. Meanwhile, David experienced chronic fatigue and pain began growing in his abdomen.

In April, Jennifer’s persistence led doctors to diagnose David with a 10-inch cancerous tumor choking a major blood vessel in his chest.

He underwent a six-hour surgery on April 29 at Loyola Hospital in Maywood.

Fearing she might regret not marrying him if anything happened during surgery, Jennifer finally said “yes” to David and the two were married in front of a Kane County judge three days before the surgery.

At a time when most newly married couples would be celebrating their future together, this pair’s fate was anything but certain as David entered the operating room.
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What significant positive plans or decisions have you and your partner made because of illness?

Is There a Cure for Divorce?

While this article doesn't refer to illness, I thought it might be interesting to you for it's take on how to thwart divorce. Divorce and serious illness are not strangers to each other. In one study, when the man became ill, only 3 percent experienced the end of a marriage; but among women, about 21 percent ended up separated or divorced.

Excerpts from:

IS THERE A CURE FOR DIVORCE?

by David Wygant

Huffington Post

8/22/11

.....A relationship does not just end over night. It takes time. But there is that point in the relationship where the marriage "jumps the shark," as they say. It's often that one thing that happens over and over again, without the ability to change or compromise, and both partners emotionally close down on each other.

So when that one thing comes up, instead of shutting down, putting up your dukes, or setting down your battleground lines--basically letting your ego take over--what if that moment, when everything started going haywire, you actually do the exact opposite of what you normally do? What if, instead, you thought to yourself, "What does my partner need right now, what does my partner need today that makes them feel loved, and how can I provide that for them?"

So many times we really do know how to love the other partner, we know what they need and how to provide it. But we refuse to do those things because they're not doing things for us, they're not giving us what we want. That's probably how the majority of relationships end. The If-you-don't-do-it-for-me-I'm-not-going-to-do-it-for-you syndrome, and then a couple years later you're divorced, angry, pissed off, and ready to start over with the hope of a fresh new relationship. One that will probably repeat itself if you did not learn the lesson the first time around.

We refuse to love our partner the way they need, so the battlegrounds are drawn. Once the battlegrounds are drawn, you can kiss that relationship goodbye because there is no way in the world you're going to give in at that point. And neither is your partner. It often becomes a very dangerous tit-for-tat game that has no chance in hell of ever surviving or finding the love in the relationship again.

Relationships are a beautiful thing, and we could cut down on the divorce rate dramatically if we just spent a little bit of time every single day loving our partners instead of responding by how they treat or have treated us.....

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Your thoughts?

Daring to Hope?

I recently started a new medication, which may be having a positive effect on my pain condition. This is the first major, desirable shift in over ten years.



For the first few months on this medication, I couldn't even allow myself to think that my pain could be controlled with only one, relatively benign drug. And I certainly couldn't express hope out loud. I did not want to offer any bait to evil spirits lingering in my vicinity, eager to pounce on optimism and turn it into yet another disappointment.



Over the years I have consulted most genres of specialists - from neurologists to gynecologists to uro-gynecologists to orthopedists to rheumatologists. I even saw a tropical medicine specialist. In my desperation, I also wandered over onto the fringe side of the healing spectrum and got some comfort from crystals and potions - although no decrease in my pain.



I have been primed to expect defeat. Richard, an optimist and scientist, has always believed in probability. And probability tells him that if I try enough options, some of them will work. His mantra has been: "There's always something more to try."



More often than not, I found this phrase to be exhausting. It left me feeling like a parched wanderer in an endless desert forcing myself to rise up to scale one more sand dune in the hopes of reaching an ever-vanishing oasis.



Recently, Richard began to give voice to hopes of recovery. I told him, "Shush. Be quiet." I'm not ready yet to broadcast.



For now, reaching toward hope is harder than anticipating more pain.

Grand Rounds is Up

at Dr Deb's site. It's a collection of posts from the health care world. Have a look.

Dislocated Shoulder -- Relationship Realignment

While hiking a steep mountain trail on vacation in Acadia National Park in Maine, my foot found the only rock with slime on it. I went down with a bang and dislocated my shoulder.

Richard and I had to hike back up to the road and hail a ride to the local hospital. Now, I've known pain, years of it. But this pain was a new taste treat and had me groaning and cursing and counting down the seconds until the nurse dripped some morphine into my vein, and then some more.

They were able to relocate my shoulder fairly easily and with that, the pain subsided.

Richard was by my side throughout -- helping me hike to the road, holding my stuff, sitting by my bed in the hospital. He was present and hugely helpful. And as the days passed and I had to learn to meet the world left-handed, he continued to be responsive to my requests for assistance and to problem solve.

He was wonderful, but I felt alone and wanted more -- and illegitimate for feeling greedy when he was trying so hard.

What was missing for me was overt empathy. At the same time I worked to be independent and do it all myself, I was a wounded bird who just wanted to be sheltered and babied. I did my best to tie my shoelaces one-handed while trying to ignore my yearnings to have my needs anticipated without speaking them aloud and to be cuddled and coddled and told that it would all be OK.

After a few days, I could no longer sustain this inner tension. I was growing weary of the strain and resentful of Richard's helpfulness without emotional empathy. We finally had a talk.

I tried to tell him what I was missing without blaming him for not providing it. I cheered his efforts at practical support and told him, as explicitly as I could, that I both accepted him and loved him, and still felt the sadness of not getting the kind of loving my injury had awakened.

He listened. And he tried to give me more emotional support. When he saw me struggle to wrap my sling around my shoulder he said to me, "I am so sorry you're having to go through this. I wish I could make it all better." His saying that made it far better for me than any attempts to help me adjust my sling.

The more I thought about the specifics of my current situation, the more I realized that the condition of being in a close relationship periodically involves the existence of a gap between what you get and what you feel you want. The gap of life.

The tricky part is not to deny the reality and legitimacy of your wants; while at the same time not punishing your partner for not fulfilling them and (and this is the trickiest bit) accepting him, with love and gratitude, for who he is and for staying in the conversation with you.

To hold both the love and the sadness, and sit side-by-side in the gap of life, together.

Do you know what I mean?

What Do You Do When Illness Makes Sex Impossible?

What do you do when your partner is no longer interested in or capable of sexual intimacy with you?

Illness takes many tolls, on both partners. One of them is too often sexual intimacy. Medications, pain, and exhaustion can not only turn a libido off, but it can also make intercourse painful for the ill partner. The well partner may be just too drained after a long day of caretaking, working, caring for the kids, and running the household to want anything more intimate than falling asleep side-by-side. And the shift illness produces in some partner relationship -- turning a bond of equals into one of caretaker - patient -- can make sex feel like a taboo.

For some couples, their sexual connection had always been a source of joy that filtered into the rest of the relationship, making it glow. For other couples, sex was routine and its effects remained in the bedroom. For others, sex was never a strong part of the connection.

Whatever your pre-illness sexual habits were, illness too often disturbs them. Intercourse may no longer be possible. Even touching can be problematic. Some couples whose sexual experiences were mainly physical, now find they actually have to talk about what feels good and what doesn't.

Through talking about sex, couples may find themselves entering surprisingly deeper levels of connection, and describing desires that before illness were invisible.

Some couples find ways of being intimate without intercourse. Some are able to stay connected without any form of physical intimacy. Some break apart. Some partners seek sex outside of the relationship, with or without the knowledge of their partner. (note: for the sake of safety and integrity, I would recommend that this be discussed between the partners).

I'm interested in hearing about your situation. Has your sexual relationship changed? How have you managed to deal with illness and physical intimacy?

Grands Rounds is Up

at Colorado Heath Insurance Insider - a collection of the week's health care blog posts. Have a look.

When You Feel Your Partner's Pain

This is a guest post written by Patricia Walling. It is a fascinating topic. Enjoy!

We often feel like when we really love someone we can feel their pain, and their suffering affects us greatly. Usually we explain this to ourselves as being the result of really caring about the one we love, and that it's completely a matter of the heart, but that may not be entirely the case. A recent study done at Monash University in Australia by Bernadette Fitzgibbon and some of her colleagues reveals that some people not only empathize with the pain of others, but can also feel it themselves. The study was done by using electroencephalography to monitor the brainwaves of amputees observing images of other people’s hands and feet in potentially painful situations. As it turns out, even if they don't normally feel phantom pain in their amputated limbs, amputees will actually feel real pain if they see others in pain or about to be in pain. This effect is called synaesthetic pain, which comes from the Greek syn-, together, and aisthe-, to feel or perceive.

Fitzgibbon and others propose that amputees are more able to feel synaesthetic pain in these instances due to a pain hypersensitivity, owing to the traumatic event of losing a limb. When we are threatened, our minds go into overdrive and are hypervigilant to pain anyway, and this is even more pronounced for those who have experienced such traumatic pain. This is much like when you are waiting to get a shot at the doctor's office, and the anticipation the pain of getting stuck with a needle is that much worse than if it happened randomly. Yet while you're waiting for the office to write up your bill and you watch someone else get a shot, something called our mirror neurons are also at work, making us wince when they stick them. These are the parts of our brain that allow us to “feel” the emotions of others, and enjoy drama in the theater.

However, that we can feel the suffering of others as though it were our own is nothing new to committed couples. Once my partner cut his hand wide open while cooking, and I could hardly look at it to bind it because it felt as though my own hand were cut open. In the past, I explained this experience as a result of our closeness, and that it was nothing to worry about. But with this new knowledge in mind, it is important to remember that when our partners are hurting, we hurt too. It can be easy to write it off as heartache and continue caring for them as much as we can, but we can end up hurting just as much, literally. Whether you're a full time caregiver or just helping your partner get through a nasty cold, it is important to remember that you also need to take care of yourself.

Grand Rounds is Up

The weekly collection of posts for the health care world is up at Heath Business blog. Have a read.

How To Claim Your Alone Time

How do you let your partner know that you need alone time?

Chronic illness is a demanding intrusion. It can determine when you and your partner can go to a movie, what you can eat, and even when you can be intimate. At the same time, illness can force intimacy in areas where it may not be wanted -- discussion of bodily functions, acts of physical caretaking like dressing or washing, exposing helplessness.

The experiences of the ill and well partner are different. Both may feel sadness and anger - at the illness and at each other. But the experiences that provoke strong feelings can be different. And both may need a break from each other in order to simply be quiet or to re-energize or to not feel obligated or dependent.

How do you take a break from your partner without wounding him or her? How do you claim your alone time without without giving the impression that you are rejecting your partner?

For some couples this may be easy. They may have even built alone time into their weekly routines. For others, especially where communication is more labored, taking alone time can be more fraught.

Richard and I both require lots of alone time. That is our nature and it was part of our relationship before chronic pain entered our picture. So now, if one of us closes the door or walks out of the room, the other is not wounded or offended. Sometimes we will say to each other, "Time for alone time."

Do you need alone time? How do you communicate this to your partner?

Grand Rounds is Up

The weekly collection of the best posts from the health care blogosphere is up at Medgadget. Have a read.

Also - PFAM (Patients for a Moment), a collection of posts write by patents aobut their experiences is up at Getting Closer to Myself.

Health of Older Couples is Linked to Each Other

As if we didn't already know this........ (quoted from an article on the University of British Columbia's web site):

Physical and emotional health of older couples linked for better or worse, study finds

A study of older married couples that gives new meaning to the matrimonial adage “for better or worse” finds that spouses have a much greater impact on their partner’s health than previously known.

The study, published in the current issue of the American Psychological Association’s journal Health Psychology, finds strong associations between the physical and emotional health of older married couples – and provides important new information on the psychological toll of physical limitations in old age.

Researchers from the University of British Columbia and Pennsylvania State University tracked the emotional and physical histories of more than 1,700 older couples over a 15-year period, using data from a major U.S. survey. Participants ranged in age from 76 to 90 and many had been married for more than 40 years.

In individuals and couples, the researchers found a strong relationship between “depressive symptoms” (unhappiness, loneliness and restlessness) and “functional limitations” – the physical inability to perform such basic tasks as climbing stairs, picking up objects, cooking and shopping. While previous studies have linked physical and emotional health in individuals, this is the first study to show the phenomenon in couples.

“This study shows how important marital relationships can be in determining old age health,” says lead author Prof. Christiane Hoppmann of UBC’s Dept. of Psychology. “In addition, we show that many of the associations between functional limitations and depressive symptoms that have previously been found in individuals are in fact related to spouses.”

The researchers found that spouses’ depressive symptoms waxed and waned closely with those of their partners. Functional limitations in one spouse was not only associated with their own depressive symptoms but also with depressive symptoms in the other spouse. Increases in depressive symptoms in one spouse were also associated with greater functional limitations in both spouses.

“When people are depressed, they tend to want to stay at home – but that causes a spouse to stay home more too,” says Hoppmann. “That’s a problem, because when older adults stop being active – going for walks, socializing, shopping – they risk losing that functional ability. It’s that old saying, ‘use it or lose it.’”

“These findings help to illuminate the often vicious cycle between depressive symptoms and our physical abilities,” Hoppmann adds, noting that associations remained after controlling for individual (age, education, cognition) and spousal covariates (marriage duration, number of children) and did not differ between women and men.

Surprisingly, the researchers found that the relationship between depressive symptoms were slightly stronger in couples than some individuals, suggesting that a spouse’s physical or emotional health can have a greater impact on their partner’s health than their own in some cases.

“Being married for a long time is a very specific situation, it really ties your lives together,” says Hoppmann, whose previous research has explored happiness in older couples. “These findings show just how interdependent, emotionally and physically, long-term couples can become.”

Hoppmann says the findings point towards a greater need for holistic healthcare approaches. “This interdependence suggests that we cannot simply focus on individual patients, while disregarding the major impacts their illnesses can have on the people in their lives,” she says, noting studies have shown caregivers to be at a greater risk for mental and physical health problems.

The researchers – which include Anita Hibbert, a graduate student in UBC’s Dept. of Psychology, and Prof. Denis Gerstorf of Pennsylvania State University – say further studies are required to determine whether these spousal associations are specific to long-term married couples and whether they generalize to aging Baby Boomers who enter old age with more diverse relationship histories, including divorces and remarriages.

How Do Men Grieve?

I spent a week staying with a friend whose wife died from acute myeloid leukemia two months ago. He is, of course, bereft, but shows it in ways that are not like the womenfolk I know who have lost partners. I am used to women really crying, with all their sisters, and being somewhat immobilized if work and children permit that. Women also look sad and exhausted. Women also seem to know that grieving takes time and that being lost and lonely don't mean that you're stuck and not healing. Of course this isn't true for all women, but it is for many I have known.

My friend wants to be doing "better." And by better, I think he means getting back into life with vigor. After a few days of the sanctioned mourning period, he started going back to work for hours, then days, and now weeks. He socializes with friends many evenings during the week - friends who loved them both, and now sustain him. He started doing a vigorous training program to get back in shape and is running and eating well. There are pictures of his wife all over the house and he likes to engage in conversations about her. He asks, "Don't you think I am doing better?"

I know his heart is shattered and that he misses her with his entire soul. But his ways of grieving and engaging in life I find are somewhat foreign to me. So I ask myself, and you, the question: How do men grieve? I am very interested in your thoughts.

Being Selfish

Richard has a rash on his feet. It's gray and white. It puddles mostly around his toes. It looks like pond scum. He is treating it with ointments and antibiotics. He has to steel himself to keep from scratching it. I have very little sympathy.

In fact, I am a bit disgusted. Mostly avoidant. I don't want it to get on me, anywhere. I want it to go away. And if it is on him, I want him to keep away.

I am being utterly selfish. And, it feels OK. Maybe even good.

I also know that this is about as minor an ailment as it gets. And it will go away with no harm done.

But I am asking myself, if this kind of response is in me for an insignificant thing, will it be in me for more serious health matters? Have I already been hard-hearted when he suffered with cardiac symptoms or vision problems? How awful is that?

Is it OK to be ungenerous when your sweetie is ailing?

I would tell anyone else -- of course it's OK. It's normal to have moments of wanting to run away. And it's healthy to actually get away from time to time. Replenish yourself before your well of empathy runs dry.

But right now, I don't feel as liberated as I did when I began to write this post. I think I'll go find Richard and tell him that even though I don't really care about his foot condition, I do care about him.

Dual Diagnosis Couples

From a recent New York Times article by Tara Parker-Pope: A Couple’s Knot, Tied Tighter by Dual Diagnoses.

"....On Valentine’s Day, he learned he had Stage 3 rectal cancer..."

"Her doctor had only recently ordered a mammogram after Ms. Bond had found a lump in her breast, but it had to be delayed for a few weeks so she could wean Sadie from breast-feeding. Because she had a history of cysts, she wasn’t worried. Yet within a week of the diagnosis she learned that the cancer was Stage 4, the most advanced: it had already spread to the liver, pelvic bones and spine...."

"Having a spouse with a life-threatening illness is hard enough. But what happens when both partners get sick?"

“Our lives are not tragic,” Ms. Bond said. “We’ve always felt blessed and happy. It’s hard to take that away even in the face of something scary and seemingly insurmountable.”

"Elisa and Nathan both had similar reactions to the dual diagnoses. They didn’t immediately worry about themselves, but both worried about how they could take care of each other."

"Even so, they both say that having cancer together gives each of them unique insight into the other’s needs and challenges, and has surprisingly allowed them to spend more time with each other."

“If you’re going to be sick in bed, at least the person who is next to you is a person you enjoy being with,” Elisa said. “It’s a small thing, but it helps.”

"The shared experience helps them focus on the importance of keeping life as normal as possible."

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I am continually amazed at people's ability to cope, endure, and even grow closer under the hardest of circumstances. I know having one partner in the couple be ill can be so difficult. The situation described in the article sounds overwhelming (and at times I bet it is), yet this couple copes.

Are you in a relationship in which both partners have a serious health condition? What is that like for you? How do you negotiate dealing with daily practical demands; and how do you deal with providing each other with support when you're both feeling the strains of illness?

3 Pieces of Advice

Once in a while, I get a phone call from someone who found my blog or an article I wrote or is a friend of a friend of a friend. She or her partner has been living with pain or illness and is looking for guidance. Today, I was contacted today by the well partner of a woman who was recently diagnosed with CRPS (complex regional pain syndrome). He wanted advice, ideas, help, hope, anything.

As we spoke, I realized I have three messages that I tend to emphasize. Here they are:

1. There is always room for hope.
2. Keep searching. If one approach doesn't work, find another one. There is always something else to try.
3. Find the great doctors (and practitioners). Good just isn't good enough. Find the great ones. And, for me, the great ones are often those who are both clinicians and researchers.
   

What key messages or lessons do you offer to others (or to yourself and your partner) that keep you going or serve as anchor points for living with illness?

Taking A Break

Caretakers - when do you take a break? I don't mean the kind of break where you go to work, or drive the kids to soccer practice, or sit down and close your eyes for a moment. Nor do I mean a solely a physical or geographical break. I also mean an emotional break. When do you take the time and the space to separate yourself from the labors of caretaking and from the accompanying heartache, anger, and emotional weariness?

And ill partners -- you may not be able to take a break from your own body and its symptoms, but do you take a break from the emotional suffering illness arouses?

For my partner's birthday, I gave us both the present of attending a four hour long program given by a renowned Tibetan Tulku and meditation master. The topic was loving-kindness. We are not Buddhists or meditators, but I thought we both needed some spiritual rescue from the all-encompassing fatigue of living with illness.

He spoke for the first two hours about pure love and the importance of focusing on joy. In truth, I couldn't capture much of what he said because the rhythmic way in which he spoke was already taking me to another dimension.

The final two hours he talked us through a guided meditation. I don't think Richard or I have sat still for two hours, in such quiet and peace, in years, maybe decades. Usually, when I'm not distracted or moving, my pain finds ways of reminding me that it has not yet gone away.

This experience (of guided meditation from a master) was much more than an unexpected break from the trivialities and the calamities of illness. It was a boost up to another level of experiencing. We focused on receiving joy and love from a pure source; of infusing every cell in our body with the light of that love; and then pouring that light out into the world to reach every living being.

For a couple of hours, we were part of a cycle that had nothing to do with illness or pain. A cycle that sustained us and engaged us as conduits, participating in creating something bigger than ourselves and our worries.

I have tried to go back to that space in the weeks since we attended this program. On my own, the light is a little dimmer, and my connection to the whole is more frayed. But I do get a break.

Have you found a way to get a break? What is your way?

Romantic Break-Ups Cause Real Pain

From an article on foxnews.com:


"Rejection quite literally hurts — the experience and the memory of getting dumped by a loved one trigger brain regions linked with physical sensations of pain, scientists find.

Smith and his colleagues put out fliers in Manhattan and online ads on Facebook and Craigslist looking for people who had been through an unwanted breakup of a romance in the last six months. As the brains of the 40 volunteers were scanned through functional magnetic resonance imaging (fMRI), half the time they looked at photos of their ex, and half the time they looked at photos of a friend. During both situations, participants were asked to focus on experiences they shared with the people in the pictures.

For comparison to their response to physical discomfort, the participants also had probes placed on their forearms that could get painfully hot.

The scientists found that parts of the brain linked with physical pain also lit up when individuals were remembering bad breakups.

"Rejection literally hurts," Smith said."

Grand Rounds is Up

Grand rounds, the weekly collection of posts from the health blogosphere is up at Get Better Health. This week it's the Emotional Edition.

Also Patients for a Moment - posts specifically from patients -- is up at The Road I'm On.

Sweet Moments

Richard, my sweetie, is worried about his vision. I am worried about my pain condition. These worries usually play quietly through the rumblings of our day. Sometimes they squeeze through the busy-ness and force our attention, insisting we sit with them for a while. Richard covers one eye as he looks at the angles in the living room, searching for squiggles or blind spots. I curl over and mumble softly to my pain, asking it to calm down, to go away.

The other morning, we awoke, spooning -- huddled under the warm quilt, arms and legs entwined, luxuriating in utter coziness and love.

Later that day, Richard said to me, "You know, I don't need my vision to enjoy a moment like this morning. I can have that sweetness, no matter what."

What sweet moments have you experienced, moments whose sweetness isn't tainted by illness?

How Do You Grieve for Your Partner?

Sorry for the absence. I was with a friend who was dying from leukemia and then with her husband and adult sons after her passing.

She and her husband were one of those lucky couples who totally adored each other, from the day they met. And he continues to adore her after her passing. They were so loving to each other that even when they fought, each person tried to comfort the other for the pain he or she was inflicting. To be angry and compassionate is a high state of relationship.

Sixty people stood by her open grave for over two hours on a bitingly cold New England afternoon. Many shared stories that commemorated her selflessness, her vivaciousness, and her love for her husband, family, and friends. Everyone helped shovel dirt onto her plain wooden coffin, an act of final respect her community and family paid to her.

The husband is bereft, robbed of half of his spirit, his memory, his daily reality. How can he preserve the forty years they spent together; and how is he to grieve for the remaining 20 or 30 years he will have without her? Right now he is being a good host to all those who have come to gather in her memory. He is worried about how his children are doing. He went back to the hospital where she was treated and died to thank the nurses and aides and doctors who cared for her. He has had a few episodes of crying on the shoulder of some dear friends. He cries more freely at night, alone, in bed.

I took him on a walk around their neighborhood. He started to tell me how sorry he was that she had so much loss and pain in her life. Sorry that he could not diminish it or protect her from it. Sorry that he could not help her. I told him to tell her. Talk to her. Say to her, "I am sorry you had pain and that I could not make it better for you." He asked me to tell her for him. I did. Then he cried. A few minutes later he sighed deeply and said, "I did make it better for her. I did." Then he turned to me and said, "You know, this is like a prayer. Better than a prayer."

We are so amputated from expressions of grief in our western, U.S. culture. We hurry grief along as if it were not a river. We don't have a catalog of possibilities for holding and expressing our grief, so we wonder what is OK and what is not. Some may have religious ritual to guide them; many don't; and even religious ritual may not offer all the forms of expression a mourner might need.

Mourning, I believe, does not only occur after the moment of death. I think we (both the ill and the well partner) experience forms of grief with each diminishment of function and possibility that illness inflicts throughout its course.

Grief, I believe, is not completely apart from celebration. Grief forces memory, and memory connects us to experiences we cherished and invites us to reclaim a life that was a force of joy. A life that merits celebration.

Her husband wrote this in an email he sent to me:
"People have told me that I should be nourished by my memory of our relationship. I cry because the despair, the yearning ache I suffer, is just not sated by remembering the way in which she and I loved any more than my hunger is satisfied by remembering a delicious meal I once ate."

I emailed him back:
I think remembering is not a substitute, it's not even an approximation. It's one way to remain connected to not only her, but to a vital part of ourselves. The good part -- the part she inspired us to get better at.

Remembering, talking to her, seeing her in her favorite chair or playing with the dogs. These acts bring a rush of sweetness that is too soon eclipsed by the overpowering sadness. But I want the sadness as much as I want the sweet memories. It all helps me to feel close to her, to feel her in my present and not just the past.

In the Jewish tradition, we don't ask that the mourner be nourished by the memory of the person who died. We say - May her memory be a blessing to you.

I think that means that at some point in time, maybe now, may the ways in which she lives inside you help you to continue to be the best person you can be.
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How have you mourned for your partner, or for yourself? What advice or counsel or comfort did you receive that was helpful? What did you receive that was definitely not helpful?

American Idol

My guilty pleasure is that I watch American Idol - regularly. I love to hear beautiful music come from unexpected places, and people. When a mountainous voice comes out of the mouth of teeny, tiny, sixteen year old girl who looks like she should barely be able to muster a whisper -- I smile. When a nerd sings opera or a geek rocks out, I smile again.

One of this season's sagas is about a young man with a beautiful voice who was engaged to a vital, intelligent, active woman. She, tragically suffered serious brain injury in an accident and is wheelchair bound and has difficulty communicating.

The Idol contestant says, "I was about to make vows just two months from the accident – through thick and thin, 'til death do us part, for better or worse,' he said. What kind of guy would I be if I walked out when she needed me the most?"

He stands by her side; he sings for her.

I have tried to imagine myself and my sweetie in their roles in their situation. I discovered that I honestly have no idea what I would do. Would I stand by my man -- and for how long? Would I make sure my man was well cared for in a facility and visit as often as possible? Would I still be able to sing? If I were brain damaged, would I want my sweetie to stick by me; or would I want him to move on? Would his presence be too much of a painful reminder of what we were supposed to have? Or would his steadfastness give me courage?

What are your thoughts? Do you know what you would do if you were the man? or the brain damaged partner?

Aging and Illness

Those of us who have been living with illness or a chronic condition (as either the ill or well partner) understand too well the deals we make with life and with each other. The biggest one is that illness must now be a part of our relationship and our choices. We can't take the commonplace for granted. Illness won't let us. The ordinary comes with the caveat - if I'm feeling well enough....

It is estimated that in the US, by the time we reach age 65 we will have one illness or disability, and by the time we reach 85, we may have 3 or 4. And if both partners are aging, the complications of managing multiply. Can we both stay in our home? Do we, and can we afford, help? Live-in help? What about assisted living? And what if one of us needs a nursing home and the other doesn't? What difficult choices!

A few weeks ago an article in the New York Times discussed the issue of aging and illness. It's a good read, and has, imho, a great title:

In Sickness & In Heath by Paula Span

Here's how it begins:

"For several years, the professor and his wife, who has Parkinson’s disease, managed in their house in Cambridge, Mass. But two years ago, finding living on their own too difficult, they moved together into an assisted living facility.

The professor, retired from M.I.T., was in good health and didn’t need personal care. So I wondered: Why not move just his wife, whose mobility would deteriorate, and visit her regularly from his own home?

He sounded puzzled at the question. Live apart? “That never occurred to me,” he said. “She’s my wife.”

As is often the case, though, assisted living proved only a temporary solution. His wife developed intensifying dementia and needed more care than the facility could provide. In November, at 85, she moved to another facility in a neighboring town. The professor stayed behind in assisted living. Now 87, he is living alone for the first time in 55 years."

Grands Rounds is Up

The weekly collection of posts from the health care world is up at Suture for a Living. Have a look.

Divorce and Chronic Illness: One Woman's Story

A reader's comment on a previous blog post deserves attention and the good thinking of other readers. I post it here, and share my thoughts underneath:

"I am now in my 4th year of suffering with RSD pain. I have no family in my state. My husband started out somewhat supportive & helpful. Now he sees me as a setback to the things he wants to do. He has told me that he doesn't drag race, go to metal concerts, and other things he enjoys b/c I make him feel guilty for enjoying his life. I have one daughter that is away at college. Only one close friend. Basically I don't have a support system. Spousal support is the most important thing one can have when trying to overcome the pain of this illness. What do you do when you don't have it? We are only days away from our 24yr anniversary & I'm feeling like its time to let go. I don't want this feeling of being the cause of his misery and him the cause of mine. Any advice on how to make it through a divorce when you're so weak and beat down? We would have to stay in the same house until the market is better for selling the home."

My Thoughts:
Divorce is the best solution in some situations -- especially when there is the presence or threat of emotional or physical violence. But divorce is hard, especially on women. Hard socially and hard financially.

Sometimes divorce becomes the visible option, something concrete to talk about, when the couple has a hard time talking deeply and authentically, without shame or blame, about the issues that lie beneath the divorce talk: resentments, jealousy, depression, rage, loneliness, fear, sex, and more.

If you'll permit me to speculate, I can imagine that you and your husband can get caught in a self-defeating loop (as many other couples do). You can't help having an illness that limits your activities. He feels obligated to curtail his activities and then resents you. You feel guilty and depressed, which probably exacerbates your RSD and leaves you more pained and less physically able to participate in activities with him. He gets resentful, and you get guilty, etc. etc. You naturally think about ending the relationship to end the hurtful pattern.

I wonder if there may be ways to intervene in this cycle, short of divorce (which is always an option). And I wonder what you have tried already? One thing to keep in mind is that you have an illness, but you are not your illness. There is a you that is much bigger than your symptoms and the things you cannot do. It's probably that "you" that your husband fell in love with. I wonder if you can tap into that "you" and find aspects that take you out of guilt (and your own resentments) and reach out to him from your core, your essence. Perhaps there are ways for you to introduce both of you to just being together and to engaging in activities that you can tolerate (and giving each other permission to also engage in solo activities).

Another perspective: When illness enters into the couple relationship, things change, often drastically. When we continue to apply pre-illness approaches to our changing reality, they often don't work and frustration and disappointment result. Couples can wind up blaming each other instead of joining together and lamenting the losses illness has caused both people. (and at some point, some couples wind up appreciating the unforeseen "gifts" illness brought into their lives -- e.g. having to slow down and learn to communicate). I wonder if there is a way for each of you to stop (if only for a moment) seeing the other as the cause of your own misery and to see illness as the disruptor for both of you. It may be helpful to talk together about what illness had done to your lives -- both your lives, separate and together. Listening with openness and empathy to each others' feelings can create shifts in entrenched patterns that allow for new possibilities --- and new solutions. A third party - therapist or clergy person - can help keep this conversation on track.

Some couples decide to stay together, but have essentially separate lives. Some couples decide to live separately, but remain in close and supportive contact. There are any number of permutations.

If you do decide on divorce, it sounds like it would be useful to build your support system first. You will need people to talk to and people to help you out. Are there chronic illness or divorce support groups near you? A family agency or hospital social worker could probably put you in touch with groups and other useful resources. And most people use a mediator or lawyers to help negotiate the terms of the divorce.

You are in a very tough situation. I will hold you in my thoughts and hope for outcomes that bring you more peace.


Any other readers have thoughts or experiences to share? Please join in.

Mothers and Pain

Richard and I have been visiting my mother in her assisted living community where she decided to move to six months after my father died.

The closer I am to her, physically and emotionally, the shorter is the fuse that leads to my pain. Propinquity = pain.

I have always been her reservoir, the pool into which her more sinister emotions drain. I am also her mirror -- having to reflect back to her what an excellent mother she is. Without the reservoir and the mirror, she tends to crumble and become either immobilized by inertia or explosive with rage.

I understand these dynamics. I try to hover above them, even as I act the part of good daughter. That distance, between the self I play and the self I am, becomes the fire that ignites the fuse that leads to my pain.

She is in pain, herself. She is also at a time of life when she is losing control over what used to be her privileges -- driving, taking medication, smoking. So now she experiences everything as a control issue -- our encouraging her to drink more than 4 ounces of fluid a day, to get out of bed at least by 3:00pm, to not screech at service people who are not giving her what she wants when she wants it. Her pain has also become her instrument for coercing others into giving her some control back. She throws her pain on the receptionist's counter at the doctor's office to have her appointment bumped ahead of others who are waiting. Her pain invites her to sleep until noon and take three naps during the day. Her pain gets her all the medication she wants, which along with Ensure, is her main sustenance.

What I am writing about her may come across as harsh. I don't mean it to be. I mean it to be a pretty accurate representation. And I no longer feel harsh as I describe her in this way. I feel great sadness and compassion. I appreciate that she is who she is, that we have an umbilical connection, that I react as I do and then need some time to recover.

Luckily Richard was with me on this visit. He was my anchor point and at times my protector. Looking at him while holding her hand helped me appreciate that I have a love she has never known, and am very grateful for that.

Now, back home, Richard and I once again accompany each other. And once again, he offers me sweet, real empathy as I do what I do to get my pain level back down. It really does make things better. It allows me to leave her in her life and cherish that mine is very different, better - and that's OK.

In what situations does your partner serve as your anchor point?

Two Blog Carnivals To Check Out

One is called Patients for a Moment, and it contains patient posts on the interesting topic of Guilt. It's being hosted at Glass of Win.

The other is a collection of posts mainly from health care providers. This one is hosted by the FDAzilla blog.

Oases of Hope

I have a friend who is undergoing massive chemotherapy to treat her cancer. She is likely to be in the hospital for at least a month. Right now, after a week, she is nauseous, exhausted, losing weight, and sleeping or zoning out a lot. When she's present, she is remarkable in her ability to hold two seemingly parallel realities -- that this is a desperate treatment with low odds and that she is living now and hopes to keep on living. Her husband describes this quality as "grit."

He often drops by our house at 9:00pm or 10:00pm, after having spent all day by her side. We talk about many things -- sadness, loss, our kitchen renovation, current events. We also talk about hope.

For many people I have met, hope is a bi-polar condition. It's opposite is despair. Either one hopes that there will be recovery or one despairs that damage or death is more likely. Every word spoken by the health care team becomes an augury. Every increase or decrease in temperature, every food product consumed and kept down, every smile or sigh -- become a sign of hope or despair, of life or death.

Since the distance between the states of hope and despair is so vast, and the signals to switch from one to the other are so continuous, this form of polarity-thinking is exhausting.

What's needed are stepping stones, or intermediate resting places -- oases of hope. As Anne Frank wrote in her diary, "Where there's hope there is life." To that I would add: Hope is not only found; it is created.

We can create these oases of hope that break up the long haul of illness and provide us with sustenance along the way. To do so requires two things:

• Paying attention
  
• Focusing on the ways in which the small can be momentous.

My friend and her well partner can hope for one good day. They can hope she has a quiet night of restful sleep. They can hope that the pain meds or the anti-nausea meds will help. They can hope that the new day nurse will not only be expert but also intuitive. They can hope that she will be able to enjoy two scoops of ice cream. They can find joy in her pride in hearing about her son's first day at a new job. They can find strength in her insistence that the IV holder be positioned differently to give her easier access to the bathroom. They can appreciate her "grit" in insisting that he (her partner) stop bugging her about food and take better care of himself by allowing friends to do his laundry and cook for him.

My husband hoped for and got joy from my quiet snoring that indicated to him that sleep had finally freed me from pain. I found hope (and a role model) in walking my dog and observing the ways in which she set challenges for herself (like finding a chicken bone buried under two feet of accumulated snow), appreciated her moment of conquest, and then moved on to the next adventure.

What are your oases of hope?