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?

Managing Your Own Care, part 2 - Four More Tips

• Do your own research. For some of you this may be a chore you can delegate. For others, like me, you can’t help yourself –you just do it. I had one pain specialist tell me I was at the maximum dosage of Neurontin, and if it wasn’t working I needed to switch to another medication (one that had a tendency to make patients gain large amounts of weight!). I went into research overdrive and found a specialist in the same field who often gives his patients 50% more than I was taking with excellent results and no side effects. I switched doctors, upped the dosage, and had good results.
• Build an excellent relationship with your primary care doctor so that he/she comes to trust your judgment as much as you come to trust his/hers. It’s easier for your PCP to give you that referral you want (if your insurance requires it) if he/she knows you well enough to know that you don’t “cry wolf” and are smart and judicious about your health care needs.
• Doctors and researchers you talk to do not get reimbursed for the time they spend with you on the phone. Many of the specialists I sought out and “cold-called” on the phone were incredibly generous in sharing their wisdom and time with a stranger. I sent them flowers or made a donation to their favorite charity or sent a thank you note.
  
• Finally – as hard as it can be sometimes, try to be gracious and appreciative to your health care providers. They really want to help you. They’re on your side. They have their own frustrations with the systems they work in. Share your anger with your partner, not with the medical receptionist or the nurse or the doctor.

What strategies have you found helpful in getting the health care you want?

Here's a very good article about Heart Disease and Managing Your Own Care

And another excellent, detailed article on Arthritis and How To Talk to Doctors

Managing Your Own Health Care, part 1 - Four Key Tips

One thing those of us who have traveled for a time down the illness road find out is that not only is the road is full of nasty potholes, but you have to be your own navigator and driver.

My fantasy about how the health system works was that I would be handed maps, chauffeured, and have a team of mechanics making sure I traveled safely. I expected the system to diagnose me, to put me in the hands of an expert treatment team who were in regular communication with each other about the nuances of my care needs, and to make me better.

The diagnosis never happened. The team wound up being a constellation of players my husband and I located. And I was the communication coordinator, carrying my case notes and test results with me from appointment to appointment. At first I resisted playing this role – which was really resisting letting go of my fantasy of being taken care of. But eventually I had to accept that it was up to me and my partner to orchestrate my care.

Here are some of the strategies I learned for managing my own care:

(Let me preface this list by acknowledging that I believe there is white, educated, middle class, American-born, English-speaking, business-savvy privilege/bias involved on my part and perhaps unconsciously on the part of a few of the systems I interacted with).

• Write up your own case history and keep it updated. Make it complete, current, and succinct. Bring it to each appointment and give a copy to each new practitioner.
• If you’re looking for a specialist, it often pays to see the head of the department. He or she most likely got there because of excellent medical (and political?) skills.
• It can take three months, sometimes six, to get an appointment with a god-level specialist. So make an appointment now, even if you’re not convinced you need to. You can always cancel it (And remember to do so if you don't need it. Others are waiting).
  
• Find out if your doctor has email and will give you his/her address – and will use it as a channel for quickie communication. An example of a good use of email could be: "I had a minor headache that lasted about 30 minutes after I started the new medication. There have been no other headaches or side effects. Should I be concerned about this? Should I make an appointment to see you?" I use email with my pain specialist and my primary care doctor. I never overuse this channel and am respectful of the doctor’s time.

To be continued.........

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

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

The Moment - 3 key tips for dealing with a serious medical diagnosis

“I’m afraid the news isn’t what we hoped for.”

“We have to begin treatment immediately.”

“The test results showed signs of greater spread than we expected.”

“I’m sorry to inform you that your husband/wife/partner was in an accident.”

“No! This must be a mistake! Please God. Noooooooo.”

Sudden trauma or a terrible diagnosis slams into us like a stray bullet. It penetrates our core in an instant, in the space between two breaths. The before breath was taken in the clear air of our old life. The breath after is drawn in a nightmare world where everything is suddenly frightening and dark.

In the emergency room, in the specialist’s office, in the immediate aftermath of the sudden intrusion of illness or trauma into our life, we are undone, yet we have to continue on and often make medical decisions that even under benign circumstances are difficult. Doctors who may have been strangers a moment ago flood us with information in a language we don’t truly understand and press us to make dire choices when we are still struggling just to keep breathing.

How can we help ourselves and our partner make good choices in this moment when we are emotionally unraveled, yet need to be attentive and wise?

Here are some suggestions:

1. Stop. Step off the medical roller coaster for 10 minutes (or 5 or 3 if that’s all you have) and connect with each other. Touch and breathe together. That moment of contact can give you and your partner strength and room to think.
2. Call a trusted friend and have her join you. She may be in a space to understand, remember, and ask important questions.
3. Ask questions. Among the most important ones are:

• What exactly is wrong?
• How much time can we take to think about it?
• What will happen if we delay?
• What are you recommending and why?
• What alternatives are there (for tests and interventions)?
• Can you explain that in more simple terms?
• (And one of my favorites) If I were you sister, what would you recommend?

Remember, when confronted with bad news, that medical science does not have all the answers and that there can be options to pursue outside of the doctor’s sphere of knowledge. And that where there's life, there is hope.

For Better or For Worse - issues for couples facing illness

We all have made “for better or for worse” contracts, often obscure ones, with the people who are primary in our lives. The contracts are concerned with the universe of commitment and responsibility that holds us in relationship with those with whom we are pledge to love, regardless of the conditions fate chucks our way. The arc of that love will inevitably collide against serious illness and may split, incinerate, or transmute to create new possibilities.

Here are some of the issues that illness forces/invites couples to consider:

• What happens at the intersection of love and obligation?
• How much should we do for those we love?
• What really lies at the heart of the choices we make?
  
• How do we balance our needs with those of others?
• Are there societal and ethical issues we are morally bound to consider?
• And most importantly, how do we live with the choices we make?

My friend and co-author, Roanne Weisman (http://www.ownyourhealth.info/), and I have been writing a book, In Sickness: A Couple’s Guide to Illness. As part of our research, we talked to many couples, surviving partners, and adult children about their experiences. In future postings, I’ll share some of their stories (all names and identifiers have been changed to protect confidentiality).

Illness is not a solo flight - helping couples deal with serious illness

For couples, illness is not a solo flight. When one partner is sick, both lives are dislocated. Whether the illness creeps up insidiously or arrives with the sudden blast of a catastrophe, it fractures all the familiar patterns and forces the couple to drill down to the bedrock of their relationship and decide where they stand.

Some couples break apart; others stay together, but assume profoundly different roles. Some couples despair; others find renewed commitment and meaning. The one certainty is that no couple is immune from the eventual intrusions of illness or trauma.

There are as many stories as there are couples dealing with illness. Each one is unique, yet there are common threads, and we can learn from each other. I hope this blog will be a space where couples in any stage of an illness situation can share experiences and advice.

Among the topics we will explore are:

• Changing Roles: redefining caretaking
• Communication: speaking the unspeakable
• Intimacy and Sex
• The Practicalities: making it work (medical, financial, legal issues)
• Dealing with Family & Friends
• Fighting and Accepting: the constant see-saw
• Finding the Best Care: western and alternative
• and many more