Left Eye Blind

To read my first column since my accident please go to http://americannewsreport.com/nationalpainreport/living-with-pain-forming-a-new-community-8819851.html In this column I report on a new online community at The Pain Community

CHRONIC-INTRACTABLE PAIN IN THE FAMILY

WHEN A SPOUSE IS IN PAIN

Chronic, intractable pain rarely just affects one person. This is especially true for individuals in committed relationships, married or not married, gay or straight. Unfortunately, it has been estimated that 75% of marriages where one partner is chronically ill ends in divorce. The percentage of dissolution of non-married relationships is probably the same.

When an individual becomes increasing debilitated by pain all areas of his/her life are affected. The person with pain may not be able to work anymore, be unable to enjoy sports or other physical activities. The person with pain may gradually withdraw from social and family relationships as they try to cope with the constant onslaught of pain. They may also withdraw from their spouse or partner. The end result of this can be social and emotional isolation, often accompanied by feelings of loss, anger, bewilderment, fear, resentment, anxiety, panic, and depression as they deal with varying the accumulation of loss in their lives. This may lead the person with pain to be plagued with thoughts of suicide. Unfortunately, rates of suicide are higher among people with intractable chronic pain.

A seemingly peculiar thing may happen to the healthy partner. This person is often shocked at what has happened to their partner. They become bewildered and frightened with what has happened. They become anxious as the financial burden of living falls entirely to them as the person with pain can no longer work full time. They may feel overwhelmed with all the new responsibilities added to taking care of their once healthy vibrant partner. They, too, find maintaining social and family relationships difficult as they struggle with the new, tiring responsibilities. In these new circumstances they may find themselves becoming anxious, tired and depressed. In short, they begin feeling similar feelings to their sick partner. The actual reasons may differ, but the feelings can be similar or the same. Without knowing how it has happened to them, the couple finds they are occupying the same emotional terrain, the same boat.

This can become exacerbated by new and differing expectations of one another. The person with pain may begin to feel that they need more care than they are getting from their partner. This can lead to resentment, anger, avoidance and withdrawal. The healthy partner, especially if he/she doesn’t quite believe the extent of the disability in their partner may expect their partner to “just push through it.” When this expectation isn’t met, the healthy partner will often feel, you guessed it, resentful and angry, and begin to avoid or withdraw from their partner. This mutual withdrawal can deepen the depression in one or both partners. Again, they are in the same boat, and because of reduced communication, they don’t know they are in it together, that they are essentially alone.

WHAT CAN BE DONE

One of the best things the couple can do from the outset, and they can pick it up later on, is to become educated together. Going to the person’s with pain medical appointment together can put the partners on the same page with the diagnosis and treatment options and plans. They can question their health care team together to learn the answers to their questions, and learn about other sources of information about the illness causing the pain. Doing this together can help the couple feel that, yes, they are in this together and sharing the same resources and knowledge. In doing this the couple can learn from the health care team what chores and physical activities they can expect the person with pain to engage in. This helps clear up misunderstandings and deepens the sense of being a team.

Another option for facing this problem together is couple counseling. In this the couple can learn how to better communicate directly what they are experiencing and what they need from each other. For example, the person with pain may think he/she is doing a good job of hiding their fear and anger when in reality their facial expressions and body language give loud voice to their true emotions. In counseling the person with pain can learn to more directly express what they are feeling both physically and emotionally.

The most beneficial aspect of couples counseling is the way that the couple can learn to stand in the other’s shoes, in short, gaining empathy for the other. Being able to accurately understand what the partner is going through binds the couple together by allowing each to experience the other as being truly, lovingly in their corner. Enhanced empathy also reduces conflicts that tend to occur more regularly in couples wherein the shadow of pain has fallen.

A FAMILY AFFAIR

In families, not just the vanishing married parents with their biological children, but families of all types, where one parent is a person with pain there develop similar emotional reactions in children as there are in adults. A child of any age will want desperately to make his/her parent better, to reduce the parent’s pain. This is, of course, nearly impossible. As a result, the child will not only feel frightened by what’s happening to his/her mother or father, but can begin to feel guilty in relation to their failed attempts to heal the parent. In children under the age of 6 or 7 it is common to discover that the child will feel not only feel guilt, but will also feel that the parent’s pain is caused by something bad in the child. Small children often have difficulty understanding what is happening to the parent in pain.

A common reaction in children of any age is a deep sadness about the suffering of a parent. If this sadness isn’t recognized at home, it can show up in the child’s classroom with the child being prone to distraction, preoccupation, and, in younger children, direct expressions of sadness. Children of all ages may withdraw from friends at school and appear lonely. These reactions also accompany falling grades and possible new behavioral problems.

WHAT CAN BE DONE

Both parents should explain to the children in an age appropriate way what is ailing the parent with pain. This should be done in simple language with confidence that the parents can handle it, and communicated with hope. The parents can invite the children to think of ways in which they could help out, because children want to help, and they want to be asked.

A family with a parent in chronic, intractable pain is a family undergoing the constant ebb and flow of stress. It’s important for the parents to try to maintain family routines as best they can. Some routines may need to be altered to account for the new reality, but whatever routine is introduced should be kept. The parent with pain needs to decide with his/her partner what activities he or she can still engage in with the children. Some activities will need to be dropped and clearly explained to the child. New activities that won’t tax the parent can be introduced. Good nutrition and physical activities should also be maintained, with necessary alterations for the parent in pain. The caretaker parent along with the medical team should encourage the parent in pain to assume as many activities as they can tolerate with their children. This also encourages the parent in pain to stay connected and involved.

It is often a good idea for both parents together and separately to tell younger children that the children aren’t responsible for their parent’s pain, and that they can’t make the pain go away. This should be explained with language appropriate to the child’s age. They should also be told that expressions of care and concern for the ailing parent would be welcomed.

Children will often act out at home when they are stressed with emotions that they have trouble handling. It’s not off base to assume that unusual acting out might be related to the parent’s pain. In a non-accusatory way, the parents should talk with the child about what may be happening. Often the underlying emotion is related to sadness or anger. Frequently, children will resent and become angry at the parent who cannot be involved with them in the way they used to be. If this goes unaddressed, the child can become guilty for feeling the resentment and anger at a sick parent. A child, like an adult, can become depressed.

Constant, open and clear communication is a must. Some families have found it beneficial to have regular family meetings to talk about what has been going on. This includes any changes in the parent with pain.

Family counseling is often a good choice for families with a parent in pain. Counseling helps each member of the family not to only emotionally connect with each other in a safe environment, it also develops or enhances empathy in the family. Once again, it is important for members of the family to be able to put themselves in the shoes of the others.

Empathy and clear communication can go a long way to build a strong, supportive family.

My latest column about a recommendation to make it much harder for pain patients to obtain Vicodin

My new column addressing policy changes in NYC can be read here.

Here is what chronic illness

does to you

when you think you are,

if you could think at all,

too young to be sick.

You see

If you could see at all,

the great clock run down,

spring loose from its gears,

run wild away from you.

If you could see at all.

If you could think at all.

But you don’t

when the gears grind down.

I hold the passing decades in our bodies

her hips rise above the dewed horizon

of our bed at 5:52 like a warm

sunrise over tasseled corn. I can’t think

of my rusted Harvester idle and cold

in the open shed; only of our years.

Morning doves sing in spidered eaves.

She turns stretching a naked profile

against antique curtains rippling

fragrant morning air. Honeysuckle

drifts back my boyhood nights,

blinking fireflies. Her body sways a beat,

then two, stirring slanted light, stirring time.

Tongues of fire, cardinals lick the dawn.

My wife slides back onto our bed

crawls across the years swaying her scent.

I breathe long strokes of her. “I want you

so deep inside me we’ll push the sun past

midnight.” Gliding through her depths, I let loose

the decades hold only the hours.

They plow up from the tree line, voracious

and blind, single-minded, he thinks. Sneaky.

Burrowed trails hidden deep in dank bluegrass

Collapse when stepped on into soggy warrens,

their razored claws inches away, grinding.

“Like Hitler’s Wehrmacht,” he sniffs, “blitzing

Your mother’s garden; through ranks

of plants, tomato, melon, peas and corn

they rasp, every night, leaving shriveled husks.”

Barefoot and sweating my father huffs through

the backyard again, tracking them, their trails,

really. They never haul up, cooperative,

into Kentucky sunlight, shake their eyeless

heads free of grasping dirt, announce

their arrival and wait all docile-like

for his pine stained Louisville Slugger to pulp

their nasty bodies. The just go deeper,

sensing his heavy footfall, his resolve.

Later, punchy drunk and armed for Normandy

all over again, a flashlight against

humid dark, he’s stalking “Nazi bastards.”

We watch from the porch all stiff and spooked.

flash-bang, flash-band. “God damn it. God DAMN it.”

Reloads, sights down his double-barreled

Shotgun. “Achtung, you filthy bastards, ACHTUNG.”

The recoil stuns him, lands him on his back,

the flashlights beam sulks through drifting cordite

haze, rises through breathless trees. We lead him

inside, settle him at the kitchen table. Unscathed,

those bastards tunnel through my moonless night.

I have finished combat with my body.

it is sunset.

I will lay down the medicine,

the pills, the needle,

the strained walk through dripping hemlocks.

I will not take count of myself,

my retreats, my advances.

This is a settled fact at dusk;

my mind cannot recreate

my body’s pain:

as words stain memory’s canvas

the grievous body leaves

and leaves

faint traces of itself.

I will not take count of my words,

my words corrode.

I will not consider sinew,

blood or bone.

I will lie down in the furrow of my belly

and sleep,

dark and cold, but sleep.