A Fable: The King & the Lost Family

This is a story that came to me as I sat next to my father's hospital bed. I have no idea where it came from. It is not a story I had ever read or heard. I just told it to him as he lay alert but with eyes closed. I said, "Dad, I have a story to tell you." This is what came out.

A Fable: The King and the Lost Family:
An Homage to Jewish Mysticism and The Rocky Horror Picture Show

A family, father, mother, daughter, and son, are driving together in a car. They are in a remote area, heading to the ocean for a vacation. It is night time and a fierce rain is falling. The father can barely see the road through the rain pounding on the windscreen. Around the next bend the father spots the lights of a great house. He decides to drive there and see if the family can find shelter for the night.

The father knocks on the door. The family waits, shivering in the cold relentless rain. Finally, they hear footsteps and watch the doorknob turn. The door creaks open and a man invites them inside.

The man is wearing the most beautiful velvet purple cloak. On his head is a gold crown adorned with rubies and emeralds. His smile and the tender look in his eyes tell the family that they are safe from the storm. He explains to the family that he is the king of this region and they are welcome to stay with him in his castle for as long as they like.

The family enters into a great hall. They look around and see tapestries covering the walls that seem to tell a story of a hero’s journey. The ceiling looks like it is made of obsidian flecked with gold. It sparkles like a clear winter night sky. The air holds traces of lavender and fallen rose petals. A soft warm breeze dries their clothes and whispers words of comfort into their ears.

The king suddenly claps his hands. Servants dressed in gleaming white uniforms enter the hall. Each servant carries an enormous silver platter with a domed cover on it. At a signal from the King each servant uncovers his dish. The sweet and pungent aromas entice the family. Each family member finds exactly what they most hunger for. The father finds roasted meat. The mother finds sweet potatoes covered with a marshmallow cinnamon glaze. The daughter finds a salad of heirloom tomatoes, golden beets, and fresh basil. The son finds crisp, tangy chicken wings. The servants set the platters down on a long oak table.

The family eats until they can eat no more. A knight dressed in a red satin doublet quilted with chain mail points toward a simple wooden door. The family passes through the door and finds themselves in a vast library. The walls are covered with shelves that hold books from floor to ceiling. The family circles the room slowly and sees books by their favorite authors glow as if a light were shining on them.

The King is seated on a purple throne near the east wall of the library. He beckons to the family. They notice that there are four chairs near the King. The father sits on the blue chair; the mother sits on the brown one; the daughter sits on the green one; and the son sits on the yellow one.

The King begins to tell them about his kingdom. “My kingdom is far away, but very close to your heart,” he says. “It is a land that has known only peace for centuries. It is a beautiful land with sweet, cool blue rivers, fields of tall green grass; soil that is deep brown and so fertile that it grows all crops; and a yellow sun that warms the people with love and kindness.”

The King’s voice grows quieter and quieter. It becomes a lullaby the family has known all their lives. His kingdom turns into a dream they had when they were little children and had forgotten.

To the family’s surprise, the King asks the father if he would like to journey with him to his kingdom. The King says to the family, “There is no need for you to worry –the father will only be gone a short while and you will join him soon enough. The father will build a big house that will some day be your new home. And while the father is gone you can remain in my realm as my honored guests.”

The father kisses his family good-bye and stands next to the King. They vanish, as if they stepped through a rift in the air.

In an instant, they arrive in the Kingdom. The father sees all the wonders the King had described - the rivers, the grass, the fields of thriving crops, and the golden sun. The father also sees something, way off in the distance, something the King had not spoken of. He sees people slowly approaching, singing wordless songs. He knows these people but he cannot yet say their names.

The King leads the father to a hill. They climb the hill and on the top the father sees a large flat square of land within a grove of eucalyptus trees. From this land, the father can see the far away ocean and can even smell the salt water in the air. The father however is puzzled. He does not know what to do on this land. The King explains, “This is to be your new home.” The people are coming to help you build your house here.”

As the people draw closer, the father begins to recognize them and know their names – Nana, Poppy, Hilda, Davey, Shirley, and more. They are bringing cedar planks, tools, nails, glass – everything the father needs to build his house. These people welcome the father with long hugs and beautiful smiles. The father and his people begin the building.

The father is so happy in this Kingdom and so absorbed in his work that he looses all track of time. He cannot tell whether seconds or years have gone by when one day, he looks north toward the ocean and sees newcomers walking towards his house, his house which is now seven stories high, with eighteen rooms, and huge windows that look out in
all directions.

The newcomers walk slowly, as if they are lost and searching for signs. As they draw closer, the father realizes he knows their names and calls to them. They run in the direction of his voice.

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.

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.

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.

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.

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

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

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

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

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

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

A Chronic Pain Game

When I was a child, my girl-friends and I would play a game we called "Senses." We each had to pick one of the five senses we thought we could live without.

Most often, smell was the sense that we decided could be disappeared with little consequence. It was unthinkable to lose sight. Without hearing we wouldn't be able to listen to the Beatles. Without taste, we wouldn't be able to enjoy ice cream. Losing touch was incomprehensible. So we usually opted for smell.

Not a particularly compelling game, I admit. No prizes or victories involved. Just a familiar conversation that rolled over the same terrain and landed at the same finish line each time.

I think we used it as a way of lightly touching something truly alarming without risking serious consequences. Like passing your finger quickly though the flame of a burning candle. We converted something horrible into a game we could control, and thereby magically turned what might be fate into a free choice.

Fast forward four decades.

When I finally realized that my chronic pain was not casual and would not go away despite my doctors' best efforts and my many prayers and tears, I panicked. Richard (my sweetie) and I began hunting down medical specialists and alternative practitioners. Sometimes I had 4 or 5 appointments a week.

It was during this period of frenzied activity that I began to resurrect the Senses game, but with a twist. This time instead of asking, "What sense could I live without?" I asked myself, "Which would I rather have -- this physical pain or severe depression?" "Pain or lung cancer?" "Pain or dementia?" "Pain or macular degeneration?"

More often than not, especially if I was in the thick of a hammering pain episode, I preferred to be stricken with the other disease. But the important thing this game offered me was a way to insert a mental space between me and the pain. This game, like Senses, positioned pain as a choice, not a fate.

Not that I could just choose to not be in pain. I tried that..... a lot. It never worked. But, if I could place pain in a context of choice , I was moving pain outside of my body, for just a moment. I was contemplating pain rather than being pain.

I know this is getting kind of existential - the difference between being pain and having pain. But pain had taken over not just my body, but my every thought and breath. When I wasn't in pain, I anticipated being in pain. This game placed pain and me in a different kind of relationship. I was apart from pain, making judgments about it.

To drive this tiny, imaginary, even foolish wedge between me and pain was a start. From there, over time, I began to imagine even greater distances between us. I began to meditate and focused on condensing pain into a smaller and smaller ball. I concentrated on my feet or hands, places pain never reached. I imagined healing waves of blue water flowing though my body, carry bits of pain away with each new surge.

The more distance I could put between me and pain, the more I felt that my life was returning to me.

A Patient's Perspective on a First Visit with a New Doctor

Some doctors know how to connect with a patient right from the start. They not only offer excellent care, but also hope. And, unfortunately, some don't........

The first pain management clinic I went to, in June 2000, in a major urban university affiliated teaching hospital, was overcrowded and dingy. The olive walls of the waiting area contrasted harshly with the orange plastic chairs that circled the room. 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. The crescendo of pain in that room was still rising as I was called in to see my specialist.

Dr. S. was a small woman, dressed in a lab coat that reached below her knees. She radiated a harried efficiency. She acknowledged me with a brief flash of eye contact and an accompanying head nod and then asked her resident to describe my symptoms. As he spoke the words I had given him fifteen minutes earlier, she poked at me like a fish monger checking the freshness of a slab of salmon. All the while she concentrated more on instructing her resident than on connecting with me.

She was soon ready to declare that I had a neuropathic pain syndrome and to prescribe more medication. For me, calling my pain “neuropathic” was like my dermatologist naming a rash I once had on my arm “dermatitis.” She didn’t provide any real illumination; she merely described what was, in medical language.

I had many more questions to ask her, but she kept looking at her watch and telling me we could discuss them at the follow up appointment when we would be able to discern if the medications were helping. She kept edging toward the door. I tried to lasso her in place by tossing out more questions. With a final flourish of her watch she bolted through the exit. As a parting gesture, she explained that the department administration only allotted her fifteen minutes per patient, and she had already used up her quota and any reserve minutes.

For her, I was a petri dish to which she was adding some mold to see what might grow.

Palpitations

Richard, my sweetie, started having frequent heart palpitations a few weeks ago. His cardiologist discovered that he has a bicuspid valve where a tricuspid valve should be. His blood was sloshing back and forth where it should have been flowing unimpeded to its next destination. His heart was working harder and growing bigger. And while I always thought of his heart as boundless and inexhaustible, in a medical sense, a big heart is not a good thing. The concern barometer is now turning in Richard's direction. The words heart medication and cardiac surgery have entered the landscape of our relationship.

I was used to being the patient. My body and its slips and slides had been the gating factor determining when Richard and I could travel, visit friends, go to a movie, and do the things "normals" do without calculation or consequence. My chronic pain had become the fulcrum on which our relationship balanced. Richard would look up at me and ask me, "How are you doing?" which was code for "Are you having any pain? Because if you are, I will know how to modulate my part in this relationship. I won't bring up heavy issues or suggest a hike. I will postpone my needs until you are feeling better."

This is how a partnership of equals devolved into an distorted triangle where pain came first, me second, and Richard a distant third. Did I enjoy the privilege pain afforded me? Yes and no. Luckily, Richard cared unconditionally and wanted to do things to make a smile appear on my strained and melancholy face. My needs ruled. But the power pain afforded me also stripped me of a sense of real competence. Weakness, vulnerability, and inability became the cornerstones of my authority. And while they offered me control in the external world, they cost me my identity as an intelligent, worldly, empathetic, capable and funny person. Not a very good deal.

And now, Richard is moving into the patient realm. He is still fully functioning, but he gets disturbing heart flutters. When this happens, we both freeze and fix our attention on his chest like hound dogs pointing at wounded prey. I need to be thoughtful, rational, and adaptable. My patient persona is of no value in this new equation.

Couples, especially long term ones, are so intertwined in practical, emotional, and magical ways. We finish each other's sentences. We phone each at the same moment. Like a ballet duo we dance through household routines without bumping into each other. I can tell by the way Richard breathes what is on his mind. He can understand what the slightest tightening of my face signifies.

Richard stayed strong and healthy while I was the sick one. Now I am doing pretty well, and he is having distressing cardiac symptoms. When I was sick, Richard discovered emotional capabilities he didn't know he had. Is it now my turn to polish my tarnished identity and become a healthy, competent adult again?

Maybe in our next phase we can learn to dance again as we did before pain, as equal partners, complementing each other, sharing the load, without illness as our mediator.

Vic and Toni: A Story About Cancer and Love

Here's a story from Freep (the Detroit Free Press online) about a couple who has learned to complement each other's strengths and weaknesses before and during illness.

"After 22 years of marriage, cancer has provided Vic and Toni Mounts an unlikely new chapter that Toni calls 'our new normal.' Cancer, and a love story."

The title of the story: Cancer took his voice, but couple communicates better than ever

I couldn't help but read it and smile, ...initially. Then I began to wonder -- where are the sharp edges? the darkness? the petty aggravations?

The silent moments create the rhythm in the music. The empty spaces give the sculpture depth and movement. The struggles are the crucible in which the relationship can strengthen its bonds.

Am I being too cynical? Maybe Vic and Toni are one of the lucky couples who fit together from the start and let true love guide them the rest of the way.

A Story About Trauma: Harry & Adele

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

Harry fell, again, the second time in two months. He is in severe pain and can't walk.

Eight weeks ago he was blown over by a fierce wind and got badly bruised. He developed infections in both legs, probably from skin lacerations, and his doctor wanted him to remain immobile. He stayed in his armchair, watching Patriots football games, eating take-out Chinese food, and falling asleep to the 11:00 news.

He is 82, bald, overweight, and one of the most benign spirits his daughter, Sarah, knows. He tries to do good. When his mother was in a nursing home, he brought bagels for the staff every time he visited. He gives to many charities, often anonymously. He is the family communications hub -- celebrating good news, commiserating with tales of heartache, and trying to repair rifts. He is a light in his daughter's life.

Adele, Harry's wife, is 80, has the puckered skin and raspy voice of a dedicated smoker, and has succumbed to old age as if it were a gift delivering her a rare form of freedom. She sees Harry as unbearably controlling. While they live together, she has cut him out of her world as cleanly as one might excise a splinter from a finger, permitting only brief exchanges of necessary information.

Adele tries to do good. She is an ardent helper -- babysitting grandchildren, visiting ailing aunts and uncles, feeding people. When her daughter Sarah was in the thick of dealing with recently diagnosed fibromyalgia and uninterested in eating, Adele would make quarts of her favorite soup. Freeze them. Then ship them overnight to Sarah. She was unable to stare Sarah's illness in the face. Long distance soup became her get well card. Sarah feels the love in her mother's efforts and has learned to respond to that love and not get entangled in the snares that lie beneath.

Helping is not he same as doing good. Lodged in Adele's core is a sponge that soaks up the approval she receives, converts it into a facsimile of self esteem and then leaks out the leftover drops in the form of helping. The help arrives disfigured by her hunger for recognition. Harry has enough solid goodness lodged in his essence that even his belabored cautions about driving safely and staying warm come out shining.

Yesterday, Harry fell again while trying to get up out of his chair. He is in the hospital, and the family is waiting for the doctor's report on his condition. Adele is at home, planning on visiting him later tonight. Sarah can't imagine what the two of them will talk about when Adele visits.

Harry and Adele's story is a sad one. They were once two beautiful, young people who laughed, worked together, had children. Somewhere along the way the lights went out. In the dark, they stopped talking and started detaching. And now that they are both in their 80's and illness has inserted itself into their relationship, Sarah, their daughter, is afraid that her mother's helping and her father's goodness just won't be enough.

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

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

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

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

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

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

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

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

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

A Story About Chronic Pain and Roles: Barbara & Richard

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

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

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

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

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

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

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

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

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

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

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

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

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

A Story about Chronic Pain & Relationship: Barbara and Richard

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

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

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

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

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

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

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

A Story about Alzheimers: Paul and Mary

The names and identifiers have been changed to protect confidentiality. The facts of the story are true.

Paul and Mary were soul mates. They were best friends, lovers, and enjoyed each other’s company above all else. Even after fifty years of marriage, Paul always greeted his wife with a kiss when he returned home from the office. These days, however, his eyes watered a bit as they lingered on her mismatched outfit and the cracker crumbs clinging to her shirtfront. He watched her float from room to room in the house now vacated by their grown children as if seeking sanctuary from the enemies that were slowly stealing her memory.

Over the next seven years she declined rapidly. She kept lists of the years of her life and the key events that occurred. She kept lists of the names of her grandchildren and children. Eventually she could not remember where she had placed her lists. She railed that no one listened to her or understood the word salad she spoke. She sat for hours in an arm chair, eyes unfocused, her nails scratching the fabric as if trying to claw her way out of a locked room.

As time went on, the daily care tasks became more difficult. Paul helped her bathe, get dressed, eat, and even use the toilet. As she started to wander the streets in her bathrobe, he began to bring her with him to his office. She sat in a chair, sedately watching him with empty eyes while he worked. His children were worried about the strain on his health.

One evening, Paul did not answer the phone when his daughter called. Alarmed, she went to the house and found both of her parents on the floor outside the upstairs bathroom lying with their heads touching. His face was contorted into a grimace, and his skin was pale and cold. Paul had died of a sudden heart attack. The daughter noticed a ring of white capsules surrounding his torso. She understood that Mary had poured a bottle of pills over Paul and then curled herself around his body, protecting him as best as she could. She was still alive.

Was Paul wise, or blinded by love and tradition? Was he noble or naive? We are tempted to impose our values onto this situation. Some of us may think Paul was heroic and hope that's how we would behave. Others may think Paul was foolish to take on such a high degree of caretaking responsibility - at the expense of his own health, thereby leaving Mary alone.

What do you think?

Here are a couple of good Alzheimer's sites for resources, medical updates, support for patient and caregiver:

http://www.healthcentral.com/alzheimers

http://www.alz.org