Who is the Patient and Who is the Caregiver?

I just read (another) story, this time in the Boston Globe, about a couple falling in love, starting down the path toward a rosy future, then finding the lump.  You know the lump I mean.  It can be cancer, multiple sclerosis, a traumatic brain injury, Alzheimer's, a stroke, pain.  Anything can qualify as a lump as long as it's a serious health condition that derails that rosy, idealized future.  An unassailable breach between what was and what will be.  A one way ticket to what Susan Sontag called "the kingdom of the sick."

In this story, he stuck by her side as they tried to achieve normal for as long as possible.  It wasn't too long a journey.  And that is both a blessing and a curse.  A blessing because they could love and hold onto each other without suffering the exhaustion and dullness long term care forces on patient and caregiver.  A curse, because they lost too quickly the future they never were going to have a chance to have,  and the loving kindness they really did have.

One line in the article struck me hard:
"Those outside of relationships in which a serious illness is present sometimes want a simple story:  the patient and the saint."

I think we need to redefine these terms.  Is the patient the person in whose body the illness resides?  Or is the patient the relationship itself which gets unravelled and requires continuous monitoring and re-ravelling?  Or is the caregiver also a patient, someone who is an equal-but-different victim of the invading disease?  And doesn't each partner, to the extent he/she can, try to provide some caregiving to the other?  Even it it's in the form of a smile or an expression of gratitude.  We need to remember that while the disease lives in one person's body, it is two lives that get disrupted, and two whole beings who suffer.

The patient suffers a terrible identity loss, along with the pain and physical demands of the illness.  The caregiver suffers an existential loss (that is, her existence as she knew it is gone), along with a level of physical and emotional depletion no one on the outside can imagine.  The caregiver also suffers the additional anguish of being unable to make the patient well again.  I've lived in both shoes, and I can tell you, I'd rather be the patient.

So, let's not make it easy for outsiders who want that simple story of patient and saint.  When they ask, "How are you doing?"  Tell them the truth.  Tell them that this is not the life you expected.  That it is harder than words can express.  That sometimes you wish the final curtain would drop already. That other times you feel such love and intimacy with your partner -- a level of connectedness that would not have been achieved had it not been for the pressure of the illness.  And then thank them for their concern.

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?

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.

Article On How To Talk About Serious Illness

From a very clear, interesting article, Boomer Couples: Deepening Your Conversations About Illness

"Dialoging with your partner in the midst of a health crisis often reflects rather typical differences between men and women - particularly in what they want from each other. Whereas a woman may need to be heard and understood, a man may be intent on finding a solution to the problem.

The result is that, even though your partner wants to be supportive when you are sick, you may be surprised to find that it is difficult for him to talk with you about your deepest thoughts and worries. This can lead to conversations that are not authentic and that make you feel your emotions are being discounted."

The article goes on to list seven types of struggles couples can get into.

Love and Alzheimer's: How Do Couples Adapt?

An article in today's New York Times describes what could be either a tragic or a blessed aspect of the ravages of Alzheimer's. As the disease erases memory, patients who have been with their partner for years often stop recognizing him/her. For the well partner, this is perhaps the most traumatic aspect of Alzheimer's. Your partner is your mirror, reflecting back to you the shared memories of childbirths, of Hawaiian sunsets, of narrow escapes, of terrible disappointments, and of the thousands of spots of intimacy that dotted your lives together. When your partner forgets you, this mirror shatters, and you have to grow a new sense of self.

The article goes on to say that sometimes the well partner must watch the partner with Alzheimer's fall in love with someone entirely new -- someone who plays a role more associated with his/her current existence. The husband (who suffers from Alzheimer's) of retired Supreme Court Justice Sandra Day O’Connor found companionship with a woman in the nursing home in which he lives. For the patient, this new relationship, often with someone with similar cognitive impairment, is a blessing. This new person fits entirely in the patient's present -- no straining to remember what has been erased; no trying to please someone who is now a stranger. The patient can find a reflection of his/her current identity in the eyes of the new companion -- a reflection that asks no hard questions and accepts what is -- a hand to hold, a smile, a body to lean against.

For the well partner, Alzheimer's paves a path of chronic grief, spread out over years. Yes, along the way, there can be appreciation, love, even new forms of innocence and sweetness. I think it must be both a blow and a relief to see the beloved who has forgotten you finding comfort with someone new.

What do you think?

Chronic Illness and Emotions: What Couples Can Do to Connect

Part 6 (and the final part, for now) in the series on Relationship Roles and Illness.

Illness can be a demanding task-master. It can consume time, energy, patience, compassion, and even love. It can smash our early relationship dreams of a blissful hand-holding companionship - a happy couple smoothly tripping down the road of life, producing strong children and noble works along the way, and ending in a quiet sunset, supported by a steady retirement income stream.

One of the sadder casualties of illness is our image of our partner. A once charmed, handsome, generous, capable image gets supplanted by the gray profile of disease. Conversation that was once lively and expansive constricts to topics that can be researched on WebMD. The love that brought the couple together can be forgotten, supplanted by worry or detachment.

To reclaim each other, to resurrect or rebuild intimacy, I suggest couples do two things:

1. Be together in silence. When the turbulence of activity slows to stillness, and space is emptied of the words you hurl at your fears and resentments, you may be able to see that unique essence of your beloved that drew you together before illness did its damage. In silence, you may be able to reconnect with the spirit (some of you may call it the soul) that has not disappeared but may be waiting to be roused. Being together in silence may seem impossible. It isn't. And it doesn't have to be for hours, all at once. It can start with an uncomfortable ten minutes three times a week and build up over time.
2. Laugh together. Laughter is not only potentially good for one's health, but it disrupts the rhythm of complacency or anger or sadness. One day, when I was in the thick of my chronic pain condition and in no mood to connect much less laugh, I noticed about seven black socks draped all along the stairs that led to the bedroom. I asked Richard how they got there. He answered, "They're making a break for it....trying to reach the land of lost socks before they're caught." I cracked up. It felt so good. And it felt so good to look into Richard's eyes with lightness in my own, instead of the usual darkness.

For some couples, it's too late to reconnect. Illness has done too much damage; or the relationship was strained to begin with and illness only made things worse. The long haul of chronic illness can become unbearable. For couples in this situation, I would suggest bringing outside resources into the relationship. These can be friends, family, community, or hired help to clean, shop, cook, chauffeur, baby-sit, and take care of the daily care needs of the ill partner. These resources can also be in the form of activities each partner can engage in -- book groups, card games, classes, sports, etc. When your relationship has turned into a source of pain equal to or greater than the illness each partner needs something to uplift him/her and someone to talk to -- be it friends, family, or a therapist.

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.

Practical Advice: How Can Couples Deal with Life, Illness, and Emotions?

Part 4 in a 6 part series on Relationship Roles and Illness (originally a 4 part series, but I realized there's a lot more to write)

On the practical side the couple can set aside a time outside of the turbulence to rationally discuss what strengths each person can bring to deal with daily life and medical demands. Illness forces so many unwanted burdens on us, we tend to feel overwhelmed and that feeling can constrict our sense of our own capabilities – for both partners. Doing can remind us of our capabilities and help us feel more a part of life.

Together, both people can write out a list of what needs to be done. I suggest that the ill partner then go first and state what he/she feels able to do (knowing that this can change and may increase or decrease daily). Can he/she shop for groceries? No. Can he/she arrange for groceries to be delivered (there are services like Peapod or Netgrocer)? Can he/she drive the kids to soccer? No. Can he/she call someone to arrange for transportation? The idea is to find some way for the ill person to stay engaged in the world and hold on to adult responsibilities – while accommodating to the real constraints imposed by illness. This may seem burdensome. But the more the ill person gives away, the more he/she fades away, and the stronger his/her relationship becomes with the illness.

The well partner does not have to pick up whatever remains on the list. The well partner also needs to assess what his/her priorities and capabilities are. He/she may need to work over-time and may not have the time or energy for cleaning the house or helping the kids with homework. And the well partner’s capabilities can also change on a daily basis. (btw -- Craigslist is a wellspring of services and goods).

After the well partner decides what responsibilities he/she can undertake, there will be leftovers. Then both partners think together, constructively, not blamefully, about how they can get help from an outside source to pick up these remainders. Can they hire a cleaning service twice a month? Will their insurance pay for a home health aide to bathe and give medication to the ill partner? Can friends, neighbors, and family be enlisted to prepare meals, chauffeur kids, drive the ill partner to medical appointments?

The most important part of doing this kind of chore/responsibility inventory is not the thoroughness of the list, but rather is the spirit of mutual caring the couple can bring to the conversation. If this activity is done with acrimony, then the efforts each partner makes will carry the extra load of bitterness. If the preamble to this activity is: “We are both having a difficult time. Maybe we’re trying too hard. Let’s, together, figure out how we can be easy on ourselves and make it easier for each other. Because I care about you.” – then the efforts made will be lightened by compassion.

Relationship Roles & Illness: Why Is It So Hard?

Part 3 in a 4 part series on Relationship Roles and Illness

Serious illness seeps into every refuge and rift in the terrain of an intimate relationship. It strains all daily routines and customary roles. The ordinary can no longer be taken for granted. Doctors, drugs, hospitals, and healers merge into the substance of the relationship. Unexpectedly, life and death choices become the focus of conversation instead of the wonderfully conventional “How was your day, dear?” or “What would you like for dinner?”

Underneath the enormity of this shift, some couples find that the relationship-building work they have done for years is there to support them. They can be partners in crisis just as they have been partners in life all along. Other couples find that the health crisis slices through the fragile ties that have held them together and that without the familiar routines to buoy them, they flail.

However, no matter how strong the relationship structure, illness creates new rents or widens existing cracks. Why is this? Because on some level illness makes us children again and then takes away the promise of “happily ever after.” Both partners are hurting and scared and want someone to make it better. Both are facing loss and abandonment and want someone to make it stop and to tell them that it will be all right. And that cannot happen. Even with physical recovery, the sundering caused by illness leaves its stains.

It is awful to look at the face of your sweetheart and see pain, fear, and helplessness when what you want so badly is to have it back the way it was. Some couples can find and hold each other with understanding and compassion. Some couples direct their rage against the seemingly omnipotent enemy, illness, against each other, and demand from each other the fortitude illness has taken away.

And all this turmoil is backdrop to the daily demands of dealing with a health system in crisis. Couples still have to deal with making appointments, finding specialists, researching new treatments, taking new medications. And the demands of ordinary, daily life don’t wait either. Children need new school clothes, groceries must be bought, and the office still expects you to do your job. Can you feel the pressure building?

How can couples deal with all three intersecting tensions -- daily life requirements, illness demands, and erupting emotional issues. One answer is they can't. Not alone. It takes a village to help a couple dealing with serious illness manage the daily tasks, the medical choices to be made, and the emotional upheavals. Neighbors, friends, and family (if you're lucky) can be enlisted to chauffeur the kids, do grocery shopping, rotate cooking dinners. A trusted companion can sit with the ill partner when the well partner needs a break. I, thankfully had my beloved friend, Tom, "Barbara-sit" when Richard needed to see the opening of the first Lord of the Rings movie. And I have participated in cooking brigades when an ill friend and her partner were too exhausted to prepare anything more demanding than cheese and crackers.


In the next installment on the topic of Roles and Illness, I will offer some more suggestions of things the couple can do themselves to help each other cope.

Relationship roles and Illness: What Happens to the Partnership?

Part 2 in a 4 part series on Relationship Roles and Illness

How do roles get determined in the couple relationship? Do we chose a partner who is like our idealized parent or like the flawed parent; like ourselves or very different from ourselves? I think whatever our initial reasons are, as the relationship evolves we find surprises that challenge us. As we grow beyond the initial intoxication, we bump into disappointments. How we move through those disappointments determines our future. We either stay stuck, repeating the same arguments over and over; or we stretch in our ability to listen without blaming and to love even when feeling wounded.

I have come to believe over the years that, as my relationship endures and deepens, I chose Richard because we are so different. His nature is exactly what I needed to catalyze me into driving toward becoming my fullest self. His belief in the basic goodness of the universe calls on me to challenge my self-protective distrust that things won’t work out unless I intervene. His slower, Southern pace and alertness to the beauty of small things reminds me to stop racing by the moment in pursuit of a better tomorrow. I have taught him about the world of emotions, and he has shown me equanimity.

Like all couples, we fell into patterns and came to rely on the complementarity and predictability of each other’s roles. One shops; the other cooks. One researches; the other negotiates. One analyzes; the other intuits. One grooms the dog; the other prepares her food.

But when one member of a couple becomes ill or incapacitated, this equilibrium and the unspoken rules that govern it change, forcing partners to assume new roles and behaviors, to learn new lines. Typically what was once a relationship of equals becomes one of caregiver and patient.

How can a couple achieve a new kind of balance - one that accommodates to the reality of the illness but also maintains a partnership of equals? Is this even possible?

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 .

Do We Really Know What Makes Us Healthy? No! So What Can Couples Do?

This past Sunday’s New York Times had a very meaty article that was both disturbing and comforting – “Do We Really Know What Makes Us Healthy?” The main premise is that epidemiological studies can be so fraught with bias, assumptions of correlations, incorrect correlations, and short-term vision that it becomes almost impossible to know what studies to believe. And therefore, it becomes very difficult to know what advice to follow. The long, sad story of HRT (hormone replacement therapy)– initially a cure for aging for women and ultimately thought to be a precursor to increased risks of heart disease, stroke, blood clots, breast cancer and perhaps even dementia --- is a brilliant example of well-intentioned research gone wrong in the end.

But how is one to know what to trust when it comes to medical advice? The author, Gary Taubes, writes, “All of this suggests that the best advice is to keep in mind the law of unintended consequences.”

For a couple holding hands and wandering through the snaky corridors of medical information, it is so easy to get lost. Especially if the health condition crosses the boundaries of several medical disciplines (like chronic pain, back pain, diabetes, fibromyalgia, headaches, and more), the couple is likely to hear not only more information than is comprehensible, but information that may be contradictory.

In seeking help for my chronic pain, one physical therapist who specialized in pelvic pain told me never to bend backwards, while a myo-fascial physical therapist told me never to bend forwards. Vertical or horizontal were the only positions left – neither one tolerable for too long.

While it is disturbing to hear that we can’t really know what medical advice to trust, it is also comforting to realize that this failing returns a good chunk of responsibility for decision making to the patient and the partner. We can feel empowered to voice our concerns and bring our intuition back into the treatment room.

A STORY:

I waited three months for a follow up appointment with the chief of neurology at a renowned hospital. He had me put on a gown and told me to lie on my stomach. Richard was seated in a chair nearby. As I was automatically moving into place I asked him what kind of exam was he going to do. He replied that he was going to do an epidural to test my spinal fluid for signs of infection, since that was one of the few test left undone. I sat bolt upright and started asking questions about the procedure, its risks, and the likely outcome given my medical history. His responses made the test seem much less appetizing. But here I was gowned and ready. And here he was, credentialed and authoritative. How dare I resist!

Luckily, Richard was there. And this is a grand advantage of going through the medical maze with a partner. Richard was able to hold up the stop sign and voice what I had been feeling but was too stressed in the moment to say – “It sounds like we have some doubts about the procedure and aren’t ready to go through with it today.” I could breathe again.

His intervention also opened up a line of questions I didn’t have the perspective to consider. I now place these questions among the top ten to always be asked:

• What will happen if we wait a week? Two months? Six months? A year?
• Are there any alternative ways of getting the same information?
• What symptoms should we be on the look-out for that would indicate that we should have the procedure done right away?

Making medical decisions is one of the arenas where couples can collaborate brilliantly and use the wonderful advantage of having a listening/sounding board immediately at hand. Even if the relationship is strained and torn by heated issues, couples can try to declare an emotional moratorium in order to work together and bring their combined intellect to bear on treatment decisions.

Ultimately, the decision to take the meds or go through the procedure is the patients; and the patient must rely on his/her trust in the doctor weighed alongside of his/her own research and intuition. The partner can be the voice of gentle challenge to the doctor and to the patient, and can infuse the equation with her/her own research and intuition. This is a situation where two loving heads can truly be better than one frightened, overloaded one.

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.

Chronic Pain, Sweet Partners, and Body Memory

Last night I stayed up until 4:00am talking with a new friend about a link we unfortunately shared – chronic pain. Hers was from a botched surgery and mine, well mine was of mysterious origins that no specialist or seer could explain. The conversation followed a track similar to others I’ve had with female chronic pain sufferers. We started by talking about symptom patterns. Sharp, dull, constant, intermittent. Like a giant, eruptive fist clenched in the belly. Like a sandpaper snake crawling around the pelvis. As if all the organs are hanks of raw meat hanging on the outside. The descriptions became more beastly, and poetic, as we spoke.

We then moved on to the litany of remedies we had tried. My condition had seniority so my list was longer – homeopathy, acupuncture, yoga, chi gong, neuropathic meds, pet therapy, meditation, vitamins, etc. etc.

We then talked about our partners and how they grew into the role of remaining spouse while acting as caretaker. We appreciated each other’s luck in having such sweeties on our side. When the pain roared, Richard would stroke my brow, chant meditation instructions in a hypnotic tone, buy treats to stimulate my appetite, play funny clips from You Tube, read The Hobbit aloud. He would reason with me when the quicksand of despair was pulling me under; and if I were too submerged to absorb his words, he would sit by my side as I disappeared; waiting for me to would find my way back again, as I had so many other times before. My demon was the pain. His was his helplessness to make it go away. I’m not sure whose was worse.

Eventually she and I got around to talking about why we thought we carried such massive pain in the space bounded by right and left hips and waist and top of the legs. An area smaller than a loaf of bread. And why we each knew so many women who felt pain in the same small geography. The pain went by many names – endometriosis, pelvic inflammatory disease, Crohn’s disease, fibroids, interstitial cystitis. Mine was tagged neuropathic pain – for lack of a more specific diagnosis.

Another thing this new friend (along with many of us who have had the pain conversation) and I discovered we have in common is that somewhere the story of our lives had been hijacked by violence. The violence may have been singular or repeated; sexual, physical, or emotional; perpetrated by stranger, relative, or friend; remembered or shadowed.

Is this a coincidence or a pattern? Does violence engrave itself onto our bones and membranes? Does the body keep a record of emotional wounds as it does with physical wounds? Can violence create a kind of festering scar tissue that one day latches onto vulnerable organs and entwines them in its cruel grip?

Many New Age thinkers, along with some well reputed, board certified medical and psychological researchers would answer that body memory is real and that a past experience of abuse can indeed be part of the profile of a chronic pain sufferer.

Here's what Wikipedia has to say: http://en.wikipedia.org/wiki/Body_memory

Tell me, what do you believe?