I have often said those words to myself or to my husband. Chronic pain is that constant drip of the faucet as each drip corrodes the porcelain in the sink. Chronic pain can also be that little man with the hammer who is the size of a Lego figure and stands on you in his chosen location and beats you like a drum. This type of pain is stubborn and intrudes on our daily quietude, our social activities and our vocations.
Whether or not you or I can “do it” is such a complex question because each of us will do it in our pace, in our time frame and in our own style. I definitely lean toward a mixture of laughter and tears. Like the sweet and salty flavors in life, in a strange way, laughter and tears complement each other. Both are a way of relieving pent up emotions, expressing frustration and evaporating anger. There is more than enough room in my life for chocolate cream pie and a good Kosher dill pickle.
As far as the laughter part of my personal coping skills, I was “blessed” with a condition that causes others to smile whenever I explain, identify or share it with them. To have my first pain begin in my sacroiliac joints, when I was in my early forties was mystifying, miserable, sudden and also hilarious. I am a very direct person, as most of you already know, and for me it was simply a pain in the ass…figuratively, intimately and medically. When your sitter won’t sit, when you sit in a chair and can’t get up or get in the driver’s seat of the car and can’t get out, this particular medical condition is both sad and funny.
When I had to stop working as a Director of Nursing and went by my old hospital one day for a visit, the medical director and another of my favorite doctors asked me what the prognosis was for me. I had no idea so I said, “Well, I think, one day I’ll be walking down the street and my ass will suddenly fall off.”
My world was rocked. I had loss of function, loss of my beloved nursing profession and loss all around me. It took several years for me to get a definitive diagnosis, many tantrums with weeping, endless frustration, traveling out of town to see doctors while in pain and finally a good guess at a diagnosis. Even that gave me relief. I was reassured the pain was real after seeing a specialist in Los Angeles. No, I wasn’t nuts. I finally got a definitive diagnosis after several years when we moved to Oregon. There was no cure, no escape. There was only management and the staggering fact that the pain would always be there. Those were sobering days and nights for me as hope was gone but it wasn’t all bad because I knew good medical treatment could help. I have thanked God often for my medical background over and over throughout the years.
I have written hundreds of blogs and articles yet never grow tired of sharing all the many ways I have survived and convinced myself I can do this; live with this pain, these staggering changes and keep my head, my chins and my attitude above the negative drowning level. Today I would like to share two of my favorite coping techniques or methods. They help me and it is always my hope they will also help you who suffer from chronic disease and/or chronic pain.
ATTITUDE, SMATTIDUDE: Cleaning my book shelves the other day I came across a wonderful old book written by Dr. Bernie S. Siegel who expounds many of the ideas I have been attracted to for many years. Many of these same ideas have been shared over the years by other authors I had read. When I was thirty-years-old, I went through a painful divorce and had only my faith and my stubborn persistence to care for my children, to keep me going. I read everything I could find on coping, believing, lifting myself and moving forward. My faith became more real than it ever had been previously. It had to be put to the test for my survival and the survival of my children. I had no money, no job, a college education in literature, a borrowed car from my parents and all of this while recovering from a tubal pregnancy surgery. Boy, did I need direction. In a strange way, survival through that difficult time was preparing me for the disease and pain that was to come into my life 12 years later; after remarriage, after nursing school and my wonderful new life.
Although Dr. Siegel worked primarily with cancer patients, there are many similarities and lessons to be learned for those of us who have daily pain. He concluded there are three kinds of patients. He said, “About 15-20 percent of all patients consciously or sub-consciously want to die.”
He went on to explain the desire to avoid suffering and pain is great in many as well as the fear of going through something they have seen a loved one experience. Sometimes the desire to die offers freedom. Thankfully, that feeling is usually short-lived. I know living with daily pain can cause those of who have it this desire at times…escape of any kind is welcome.
Dr. Siegel goes on to explain the second kind of patient. “In the middle of the spectrum is the majority, about 60-70 percent. They are like actors auditioning for a part. They act the way the doctor wants them to act, hoping that then the doctor will do all the work and the medicine won’t taste bad.”
He states further this group to be non-interactive in their own care. They are looking for a quick fix and take a more passive role in their own health. They want the physician to do it all and never strike out on their own, never question or grow, or learn during this process involving their own health. They just want to be “fixed” without participating in their own lives.
The third group Dr. Seigel describes “At the other extreme are the 15-20 percent who are exceptional. They are not auditioning; they’re being themselves. They refuse to play the victim.”
Dr. Seigel then introduces us to another exceptional man, a psychologist named Al Seibert who explains this third group of patients as survivors. Siebert has studied these individuals and found them to have certain characteristics. Dr. Siegel explains “He found that one of their most prominent characteristics is a complexity of character, a union of many opposites that he has termed biphasic traits. They are both serious and playful, tough and gentle, logical and intuitive, hard-working and lazy, shy and aggressive, introspective and outgoing, and so forth. They are paradoxical people who don’t fit easily into the usual psychological categories. This makes them more flexible than most people, with a wider array of resources to draw upon.”
It seems that Siebert in his studies, found that survivors, unlike many individuals pursue all of their needs such as “survival, safety, acceptance by others, self-esteem and self-actualization.” These survivors acted not just from self-interest but from an interest in others. He describes them as “foul weather friends,” because they do not shy away from trouble and want to come through; not only for themselves but for others. I believe many of us who suffer chronic pain fit into this category as we struggle each day to be our best and be more than just victims of our health. To live this life, we have to be participants in our own health and wellness. We constantly search.
I have always found these studies interesting and find them more so now that I am also a cancer patient. There is so much wisdom out there waiting to be picked off of that tree of knowledge; there is no reason for us to starve.
HISTORY LESSONS: We live in the oldest city west of the Rocky Mountains so I am always surrounded by history. I have always loved to study history and find great comfort in my antiques of any shape or form. Our old Italianate Victorian isn’t fancy but it is old. Built in 1890, I wonder each day about those who lived here over the years. Our home is bulging with the old mixed in with the new. I find a mystery of survival in all things old with their rich patina furniture, polished over the years by hands that were not mine. Old quilts hold a certain fascination for me as I look at the cloth in each square or diamond shape and remember there weren’t fabric stores resplendent with goods such as we have now. Those older days were practical day when fabric was never wasted. No, these quilts are composed of children’s outgrown clothing. Father’s old work shirts, worn thin, Mother’s Sunday dress she once cherished and bought with money from her coin jar stashed up high in a cupboard.
One of my favorite Bible verses tells us to “lift up your eyes unto the hills from whence cometh our strength.” I gain much strength from that because those hills have been there and survived as we will survive. I watch the majestic Columbia River flow out to sea and remember how long it has survived. Just like all aspects of history, there are stories and strength to be gained from looking back. We are not the only ones who have suffered pain, loss and joy. I gain much strength from looking back and learning. History offer us comfort if we will reach out for it.
High on a hill
a gust of sweet damp river air
washes past the antiquated redwood frame
through the moldering wallpaper,
disrupting ancient dust.
Her new occupants have a wee child.
Loud raucous wails are balanced
by laughter and childish glee.
Tiny, running feet
shake loose dust and sand
left behind by former occupants,
or simply blown in by the last windstorm.
Lace curtains feathered by the breeze
softly stroke the leaded glass and wooden frame
in a caress that is rhythmic and soothing.
Memories swirl like the wind
inside the heart of her;
within her walls.
Some are harmonious with life,
others tragically out of tune.
Many children were born here.
They giggled with joy
eventually leaving her behind.
They marked growth on her walls.
carved initials into her doorframes,
scraped knees on her stairs.
Three deaths occurred
within these walls.
One a peaceful end to a long life.
The other two resonate in her depths
their tragedy rocking her to the rafters
like an earthquake.
The handsome captain out to sea,
his raven-haired wife “in a family way”
left behind to incubate.
The day the pains began she was alone.
There were no telephones
wooden sidewalks crusted with ice,
the only neighbor yards away
across a knee-deep muck mired street.
She crawled to the door,
cried out for help
her whimpering pleas muffled
by the whine of a piercing arctic wind.
She lost her life
and her unborn child that day.
The captain arrived home to emptiness,
loss so deeply felt
he returned to sea
and left his shattered heart behind
within these walls.
He sold to a burly Irish barkeep
with a plump young wife
and six freckle-faced children.
For a time, laughter lived
Beneath her roof.
She yearns to make peace with the sad times
while savoring the joyous ones
because she knows
acts of love are perfect
and cannot die.
They will resonate forever
within her walls.
Sue Falkner Wood