The Downs and the Ups

It's been a long time since I've posted.  Usually when I go into  silent running mode it means I am having a massive pain relapse and all my attention is dedicated to trying to stay one nano-step ahead of the pain.  It also usually means that I no longer feel a part of humanity.  Nor can I bear being exposed to the normalcy of others' lives.  Their ability to take things like walking, watching the World Series, opening a can of tuna fish, even breathing for granted feels like a mortal blow.  So I sink into deep stealth mode.

But that's not what's been happening.  Well, not entirely.  I am climbing out of a pain relapse.  But even at the outset, I knew that I would.  And I am learning to befriend the panic that usually accompanies a relapse and offer it enough reassurance so that it calms down.  I am not sure where my confidence came from.  Maybe after seventeen years of downs and ups I have come to rely on the ups as much as I've always been certain of, even counting on, the downs.

What has remained constant, and needed, is someone outside of my twisted relationship with pain to hold the hope.  Richard, my sweetie, has always been able to do that, with genuine, scientifically grounded belief.  As a scientist and engineer, he always believed that there had to be something in this universe that would alleviate my pain.  In the earlier days, I could only believe that the torture would be endless.  I needed him to hold the hope because I didn't have any.  In fact I didn't want to have any hope.  Hope was just a tease, a false trail leading only to more pain.  And if I climbed up to hope, the drop back down to more pain would be even sharper.

Now, it seems, we have entered a new phase.  We seem to be holding the hope together.  Richard is still an unwavering hope holder, his certainty made bolder by the many mini-recoveries I've had.  I'm not even on the same planet as certainty; but I've got a few strands of hope wrapped around my heart.

Do you have a hope holder?  Can you find a spot of hope inside yourself?  How important do you think hope is?

Your Partner's Face

As I climb back out of my recent pain relapse, my husband's face has become even more important to me.  It's more than the face of a morning greeting or an offer to pick up Chinese take out on his way home.

His face has become my anchor and my mirror.   His face is a reminder that there is a world with love in it beyond my pain.  His face is like a siren's song calling me to emerge from my pain cocoon and join him in a moment of connection.  When I see his face I can climb out of the nest I've constructed with pillows and blankets on our couch and know I have another direction I can head in.

His face is also my mirror.  When I'm in pain, I can't look at myself in the bathroom mirror.  All I see is pain and the fear of more pain.  When I look at my husband's face I see more than his pain at my pain.  I see flickers of hope.  His hope becomes my lifeline to the possibility of less pain, even no pain.  His hope tells me the story I want to hear but don't have the courage to write for myself.

Now that I am doing better and have once again tamed my pain with my reliable arsenal of meds and physical therapy, watching his face becomes less urgent, less like a lifeline and more like a place I like to live.

What do you see in your partner's face, whether you are the one with the illness or the one who is the caregiver?  What do you look for when you look at your partners face?  What is there, and what is missing?

Bad Times are Not So Bad

I have been under tons of work stress lately.  Not sleeping. Scripting conversations that will never take place.  Imagining justice where banality will inevitably prevail.  Not taking intended slights personally, but still suffering from the resulting alienation.  And moaning and bemoaning endlessly with Richard about the lost opportunities to make a difference.

Then I realized that I'm complaining, at full bore (pun intended), about a work situation.  Just like I used to do in the pre-illness, pre-pain days.  I was immersed in the actions and reactions of a scenario that had nothing to do with doctors or medication or waiting.  Everything that was happening was immediate.  I was a player, not a recipient.  I was suffering from the interpersonal, not the biological.

The biggest gift my illness has given me is the gift of perspective.  In contrast to the awfulness of the bad times and the pain-filled days, work stress is a walk in the park.

Has this ever happened to you -- where your or your partner's illness cast a different perspective on a work or other life situation?

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.

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?

A Good Day

Beautiful day. Pink cherry tree blossoms exploding. Sidewalks carpeted in dogwood petals. Air smells green and hopeful. Pain is a whisper I have to really listen for if I want to notice it.

Richard greets me at the back door as I return from yoga class. He smiles like he's a five year old kid and I'm a chocolate ice cream cone. We talk about what kind of wine to bring to a barbecue tonight.

Today is a good day for me.

How would you describe what a good day is like for you?

Among the Redwoods

When I was really sick, and I mean really, I spent my days mostly pacing, trying to stay a half step ahead of pain. My entire attention was turned towards noticing degrees of pain in my body. My ability to focus on the world outside of pain became not only limited, but eventually came to feel unnecessary. It was just pain and me. Even Richard was peripheral.

I made lists in my mind about the things I would never get to do again. Things I would mourn, but would sacrifice if it could placate pain and reduce its grip. (The mind takes some strange turns when you're in pain).

I gave up Paris. I knew I would never make it to the Latin Quarter and sit at an outside table at les Deux Magots sipping un grand creme. I gave up scuba diving. I had already felt the incredibly soft underbelly of a sting ray off the Cayman Islands, and could live on that memory. The hardest thing to give up was hiking. Hiking is breathing. It is heart. It is my connection to my body on the earth. But I offered it up to pain, if only pain would go away.

Now, years and medications later, I am hiking again. A few days after a recent relapse and pill recalibration, Richard and I were hiking through giant redwood forests in Armstrong State Park near the Russian River in California.

Wings sprouted and I glided on the wind currrents up and down trails. I inhaled panoramas of rolling hills, ocean, river, clouds, sky. I felt invincible and humble.

When we landed back at the trailhead, feeling the glorious pain of exhaustion and depleted endorphins, we celebrated.

This was a special occasion.

When Pain Goes Away

For the past three days, Richard has had a smirk on his face. In general, he is a gentle soul, compassionate beyond the point where most people would be showing impatience, usually able to leap over fear and ego in a single bound. He does show moderate smugness -- especially when he is proven right about the time it takes to get to the airport during rush hour. But he rarely smirks.

This current smirk, is a combination of "I told you so" and "I am happy for you, and us." It's a smirk that follows the ending of a pain episode.

He knew, based on many similar episodes of past pain experiences, that getting to the right medication titration would eliminate the pain. I only knew the anxiety of all the untested "what ifs." What if this time is different? What if something else is wrong? What if it takes months or years, again? What if I can't work or write? What if we run out of rice cakes and almond butter (funnily the only thing I can eat when I have pain)?

He goes to Whole Foods and comes back with shopping bags overflowing with rice cakes and almond butter and reminds me, again, that this pain will stop. And it does.

The smirk of love.

An Unexpected Conversation in a Waiting Room: The Hope Pyramid

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

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The second pain management clinic I went to, in June 2000, in one of the major Boston, Harvard-affiliated teaching hospitals, was overcrowded and dingy. The tired olive walls of the waiting area made the orange plastic chairs that circled the room all the more jarring. The thick haze of pain coming from the crowd of patients made it hard to breathe. Everywhere I tried to rest my eyes I saw clenched jaws and jiggling feet and silent tears. My chronic pain was at a high point, and I was at a low point in my search for relief. I stopped my own jiggling and clenching for a moment and noticed that the woman sitting next to me seemed unusually serene. Her hands were resting quietly in her lap and her eyes were focused on some invisible point beyond the agitation around her.

To both our surprise, I turned to her and said, “You seem to have a calmness that doesn’t come from overmedication. How do you do it?” To my surprise, she answered, “I always have hope.” She chuckled and added, “I also have chronic back pain and quite possibly a brain tumor.” I asked her to tell me where she finds her hope. I really wanted to know because I had yet again been disappointed by all the treatment options I could fathom to address my mysterious chronic pain condition and was dipping into the muck at the bottom of the depression barrel.

She said that there is always something to be hopeful about, no matter what condition you’re in. When you have health, you can be hopeful about having any of your dreams come true. Once your body fails you, you can rest your hope in your emotions. You can hope that you will still feel love and compassion for others, and for yourself. If your emotions become emptied, you still have your spirit, and you can hope to connect to something greater than yourself, something that has a light to shine on your shadows. And when the spirit is gone, then you have already become something else, and who knows what hopes await you there.

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

Freezing and Unfreezing

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

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

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

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

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

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

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

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

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

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

How do you unfreeze? Go shit on a pigeon.

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

Go shit on a pigeon.

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.

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

coryphella on flickr

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

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

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

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

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

How did we learn to keep finding each other?

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

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

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

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

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

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.

My Own Private Idaho

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

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

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

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

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

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

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

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

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

How Do You Start Your Day?

I used to start my day by doing an inventory of pain signals. When the pain began to behave itself, I would mentally rehearse how I would handle the more anxiety-ridden encounters I expected to have during the day. It was as if I believed that careful anticipation could either better prepare me, or magically prevent the feared outcome.

I think I had become so worn out by my many battles with pain, who was often the victor, that I forgot how to trust both myself and the universe. Ironically preparing for tension only made me more tense and less able to ride the curves of the day.

Over the years, as my pain grew more muted, I became more thankful and confident. As Einstein once said, "There are two ways to live: you can live as if nothing is a miracle; you can live as if everything is a miracle." I picked a third way -- some things really suck; but even so, it's important to take time to stop and eat the roses.

This may sound hokey, but now I start my day by saying (not sure to whom): "Thank you for this beautiful day in this beautiful world and for enabling me to participate in it."

It doesn't matter if it's hailing golf balls or if my pain is beginning its insidious climb to level 7 . I now have proof that it will eventually stop hailing and that the pain spike will retreat. I find that my new morning saying points the intention for the day in a positive direction and offers me a quiet pause, one clean breath of appreciation before I greet the "miracles" of the day.

How do you start your day?

An Essential Question

I recently read a study about the "widow effect," a curious but very real phenomenon that doctors have long been aware of. When a husband or wife dies, there's a greater likelihood that the surviving spouse will pass away soon afterward. It is not hard to imagine that when two lives have been intertwined for a long time, the surviving partner loses not only the emotional will to live, but also the daily habits of self care. For some, grief trumps survival.

However, my thoughts turned in another direction after reading this study. I thought about the "death in life" that some caretakers of partners with long term debilitating illness speak about as their world slowly shrinks to fit within the dimensions of the sick room. Caretakers I have talked to poignantly describe the impact it has when partner turns into patient and caresses get exchanged for sponge baths, lively conversation for medical updates, and future dreams for waking nightmares.

How does the caretaker not only juggle daily practicalities -- shopping, chauffeuring, working, finances, child care -- but also deal with the snarl of conflicting emotions? Cherishing the memory, hating the reality; yearning for release, fearing further deterioration; love and obligation; commitment and escape; loneliness and guilt.

When I was at my worst, housebound with my daily battle with pain, Richard (my partner and caretaker) and I, both exhausted from the struggle to carry on, would sometimes just sit together in silence . There was nothing more we could do and nothing left to be said. In silence, when the words we hurled at our fears ran dry, we could feel a connection, one that survived in a calmer universe where pain had lesser authority. For a moment, my caretaker could suspend his vigilance, and I could feel whole.

We ricocheted between this silence and frenzied, fear-saturated conversations that consisted of endless questions we kept firing into the unknown in the hope that one would reveal a promising direction. What medication should I try? What specialist should I see next - an orthopedist, an immunologist, another neurologist, a gynecologist, a uro-gynecologist? Should I try acupuncture again, or maybe massage?

One day, following one of these silent respites, we stumbled upon an essential question. We asked, "What is the most important thing we can do for each other?"

Our answers rose to the top of the emotional heap in an instant. I wanted Richard to tell me that he had faith that I would recover. He wanted me to let him know whenever I felt even the slightest relief from the pain.

This was a way to swaddle our terrible fear in love and reassurance, and quiet it, for a while. So much was beyond our control, but this we could do for each other, happily, easily. This was a new beginning for us. It made the load we each carried a little bit lighter.

After Thanksgiving Blues

I can’t help it. Whether it’s tryptophan withdrawal or disgust at eating massive quantities of foods I never eat during the year, I am suffering from post Thanksgiving blues. I wander around the house. Sit down for a few minutes. Get up. Wander a bit. Start a book. Put it down. It’s like I’ve been demagnetized and can’t lock onto anything.

Dishes pile up. Laundry piles up. Richard keeps asking me, “What’s your mood?” “What’s on your mind?” “Are you ok?” My mood is flat; my mind is floating; and yeah, I’m ok, in the global sense. That is, I have nothing to be particularly unhappy about.

This Thanksgiving, we did what we always do – gather with the friends who have become family. Some we see regularly; others once a year around the Thanksgiving table. We talk about life events, travel, favorite books and movies, political opinions, and lawyer jokes. Nothing new. Good friends and good times – a regular Hallmark card.

There’s such purpose in Thanksgiving. In the food, the table, the wines, the companionship. And sometime, during the drive home late Thursday night, the purpose dissipates. The focus shifts to email and meetings and snow tires and telemarketers. The ordinary moves back in.

Richard sees me staring at nothing. He says, “Do you know that when I ask you what your mood is or if you’re ok or just say ‘Hi babe’– that I’m stroking you with words? I’m making contact.” I didn’t know that. I feel better.

Pet Therapy or Sometimes A Human Is Just Not Enough

My days were spent trying to sleep as long as possible. Sleep meant no pain. When I could no longer fool myself into thinking sleep was still possible, I meditated and listened to wellness tapes instructing me that imagining myself healthy was essential to becoming healthy. After ten minutes of these tapes, I began to feel like an impostor, like a weary atheist listening to a sermon hoping that the words alone, without belief, will create the miracle. I got out of bed, starting the day already feeling defeated. The combination of my complete isolation from life along with physical pain and emotional upheaval was not a pretty sight.

My husband, worried over my increasing distance from life, suggested we try pet therapy. I was lost, a refugee cast out from my own body with little sense of direction left. I did not agree or disagree with his plan. I simply let events happen. He spoke with a friend who is a breeder of Cavalier King Charles Spaniels, and she gave us Mina, a ruby-colored beauty with a gift for healing.

Over the next few weeks, as my pain level fluctuated, Mina began to show her powers as a gifted empath. When I sat quietly to meditate, she moved a few feet away, staying in range, but not intruding. When pain or depression forced me to lie down, she snuggled closely, resting her head on my shoulder. Sometimes she scaled my chest with her paws until her head was level with mine. Then she looked me right in the eyes, nestled her cheek against mine, pressed her paws against my neck, and hugged.

One late winter afternoon, after I had been swimming in deeper and deeper pools of pain all day, I finally collapsed to the floor in a wretched heap of tears. My husband was at a loss as to how to help me. He was afraid that this time, I might have sunk too far down and would not be able to pull myself out as I had so many times before. I could see the fear in his eyes, and that only increased my sense of hopelessness.

At that moment, Mina came over and sat in the curve of my body and relaxed against me. No hugs, no licks, no attempts to persuade me to shake myself out of my misery. She just rested against me, composed and patient. In her stillness, she was able to tap into a thread of hope that still endured somewhere deep inside. From that source, I could draw a clear breath. Her calmness reassured me as no human intervention could have.

Over the months, I watched her closely. She taught me what no therapist or body worker or tape on healing could. Mina lived entirely in the present. She slept at the exact moment when tiredness overtook her. She quaked with delight at the sight of a treat being extracted from its bag. She sat patiently while I prepared her food, and then leapt toward the spot where I always placed her dish. Even though she got walked four times a day, each walk was a wonderful new adventure with droves of squirrels to chase and a seething ocean of underground smells to fathom. Sometimes, as we walked, she was so stuffed with exuberance that the excess burst out of her, propelling her into a pirouette. Those rare times when I scolded her, she retreated into a sulk for a few minutes, but then her irrepressible desire to be fully engaged in life returned, and she was once again leaping, hugging, sniffing, and sleeping.

She anchored me back in life as nothing else could. I no longer experienced pain as an endless desert. It was punctuated by the rising and falling of her chest as she slept by my side. When her puppy face, draped by her long, silken ears, was nestled against my shoulder, I felt sheltered. And as the years passed, and I slowly recovered, whenever dark habits drew me back into a state of depression, I whispered her name, “Mina.” The ensuing rhapsodic swishing of her feathery tail reminded me that there were squirrels to chase, bones to unearth, and a life to be lived.

An Unexpected Conversation in a Waiting Room: The Hope Pyramid

The second pain management clinic I went to, in June 2000, in one of the major Boston, Harvard-affiliated teaching hospitals, was overcrowded and dingy. The tired olive walls of the waiting area made the orange plastic chairs that circled the room all the more jarring. The thick haze of pain coming from the crowd of patients made it hard to breathe. Everywhere I tried to rest my eyes I saw clenched jaws and jiggling feet and silent tears. My chronic pain was at a high point, and I was at a low point in my search for relief. I stopped my own jiggling and clenching for a moment and noticed that the woman sitting next to me seemed unusually serene. Her hands were resting quietly in her lap and her eyes were focused on some invisible point beyond the agitation around her.

To both our surprise, I turned to her and said, “You seem to have a calmness that doesn’t come from overmedication. How do you do it?” To my surprise, she answered, “I always have hope.” She chuckled and added, “I also have chronic back pain and quite possibly a brain tumor.” I asked her to tell me where she finds her hope. I really wanted to know because I had yet again been disappointed by all the treatment options I could fathom to address my mysterious chronic pain condition and was dipping into the muck at the bottom of the depression barrel.

She said that there is always something to be hopeful about, no matter what condition you’re in. When you have health, you can be hopeful about having any of your dreams come true. Once your body fails you, you can rest your hope in your emotions. You can hope that you will still feel love and compassion for others, and for yourself. If your emotions become emptied, you still have your spirit, and you can hope to connect to something greater than yourself, something that has a light to shine on your shadows. And when the spirit is gone, then you have already become something else, and who knows what hopes await you there.

We had this conversation over seven years ago. Thanks to my husband, my dog, and western and alternative medicine, I am relatively pain-free. I never knew what happened to that woman in the waiting room, but I can still hear the assurance in her voice. And I have learned that there is always something to be hopeful about -- you just have to keep looking.

Who Holds the Hope?

During the first awful years of my chronic pain condition, when every day was a desperate battle to stay a few paces ahead of the pain, and all my doctors and specialists and healers were helpless to make it go away -- one of the greatest casualties was hope. It left me and soon, I no longer sought it. In fact, it became easier to be hopeless because then I never imagined getting better and therefore didn't have to suffer the inevitable disappointment of failure.

My husband, Richard, became the keeper of hope for both of us. He wasn't faking it. As an engineer and scientist, he truly believed that, since no one could discern the cause of my pain, it could disappear as easily as it appeared. The trick was to keep trying different approaches.

I came to count on Richard to cast his net of hope over me on the dark days. It would never penetrate too deeply, but it was calming to hear his voice speak of a future without pain. His certainty became my refuge.


“Hope is the thing with feathers, that perches in the soul, and sings the tune without words, and never stops at all." Emily Dickinson