January 29, 2011

PAIN Part 2: The Pink Porcupine

Part 1, "An Introduction to the Subject of Pain"
Part 2, "My Personal Pain Story: The Pink Porcupine"
Part 3, "Creativity in the Midst of Pain"
Part 4, "What Others Have Written on Pain and Suffering"
Part 5, "Resources Related to Pain Management"

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Disclaimer: I am not a psychologist. physician, physiologist, or therapist. I have no medical or mental health training whatsoever. Therefore, no advice, medical or psychological, is intended or implied by any of the posts in this series on PAIN.

PAIN: The Pink Porcupine

"...we can let the circumstances of our lives harden us so that we become increasingly resentful and afraid, or we can let them soften us and make us kinder and more open to what scares us. We always have this choice." The Places that Scare You: A Guide to Fearlessness in Difficult Times by Pema Chodron

When was the first time you experienced pain? For me, it was in my ears, and this is curious as I grew up to give birth to a son who has struggled with a hearing disorder for nearly thirty years now and undergone two painful ear operations. I had horribly painful earaches (called "bealed ears") as a young girl (before age five). And, way back then there were no "tubes" to insert. The heating pad and late-night TV were my companions as I remember being up in the middle of the night, on the sofa, covered with a homemade afghan, the heating pad, and some long-forgotten program on the b/w television. To this day, I associate the smell of a heating pad with being a little girl.

The earaches felt like an ice pick, slowly pushing ever harder against my eardrum and radiating into my jaw, eye, and temple. The muffling of sound was accompanied by a thick, yellow liquid medicine (of which I can still remember the smell) that was not as gross as the liquid that stained my girlish pillowcase each morning when I awoke.

The earaches were the worst pain I'd felt in my young life and were, I realize now, an introduction to the pain that life can bring. When my parents loaded me in my flannel pajamas into the car for a ride to the hospital to have my tonsils out (as this was thought to perhaps help), I didn't worry about the surgery, I didn't know what surgery was. I kept my eyes focused on the shoebox on the front seat between my parents. In it was a surprise that I would get once settled in at the hospital: a Raggedy Ann doll. I can remember the anesthesiologist asking me what presents I received for Christmas and in the middle of my answer I fell into a deep sleep, had my tonsils removed and was never bothered by earaches again.

Just before my fourteenth birthday I came down with a nasty bout of mononeucleousis followed months later by a growth on the right side of my neck, between my jaw and collarbone. At Halloween that year I was in a semiprivate room having the abcess drained. I don't remember pain from this operation, but learn about pain I surely did, as the middle-aged woman sharing a room with my young self was undergoing an operation for hemmorhoids. She cried, and screamed, and cried and begged for relief, interspersing her moans with German words I didn't need an interpreter to understand. I promised myself to find out what on earth caused such a horrible condition so I would never have to have done to me whatever it was she had endured.

The following Halloween, at age 15, I was back in the hospital again for a repeated procedure to drain the abscess in my neck. I remember the pain associated with this period because the growth pressed against the year-old scar tissue of my previous surgery and felt like some alien creature was in my neck struggling to rip through my skin and break free.

It was hard enough being a skinny, flat-chested teenage girl with a big nose in a school with cliques galor, without also having a neck swollen on one side like a linebackers' physique, and after surgery a scar that looked like something from "The Bride of Frankenstein." I had already traded toe shoes for drawing pencils and a guitar, and it was a good thing for I spent a lot of time in bed, keeping myself occupied with various craft projects and learning new songs. In December the abscess returned and after putting up the Christmas tree, my parents and I trudged off to yet another hospital where the surgeon removed the tumor once and for all and carefully improved upon the scar left by the previous doctor. Today, it is only noticable if you're looking for it and is easily covered completely with make-up, but I still love wearing turtleneck sweaters.

A few years ago I woke up in the middle of the night ready to scream as it felt as if an ice pick was inserted in my right knee. I couldn't move or straighten my leg. Within seconds I practiced calmly breathing, rolled from side to back and slowly extended my knee, which then only ached mildly for a few hours. But it was terrifying. To be peacefully asleep and wake up in such excrutiating pain! And then it happened again, and again, and again. One night I felt that this was something I could not live with and I was becoming afraid to go to sleep at night. Newly married, my husband was being startled from his sleep by a screaming, sobbing wife.

But, it happened only once in a while, perhaps once a month at most. X-rays were done and showed a piece of floating bone. Surgery was scheduled, and while no floating bone piece was discovered by the surgeon, a good amount of arthritis was, and this was scraped out. A few months after the surgery, I had the stabbing pain at night again, though it was not as severe. I was disheartened. But, fortunately, it seems to have abated. I remain hopeful, but also empathetic every time I see someone with their leg in a brace, indicating recent injury or surgery. To me, this was on a level of Jack Bauer-related torture, and I'm afraid I would give up all State secrets fairly quickly.

This past month I have had a painful infection (facial cellulitis prompted by an infected tooth in my lower jaw), and now I am starting to see pain as an entity, separate from myself but often attaching itself to me . . . going along with me through several periods of my life. Popping up, like an unwanted houseguest, at the most inopportune moments and always staying longer than expected. When it takes its leave, I am so grateful and eager to forget it that I mentally push the experience deep into the trash compactor of my subconscious so that I can refocus on beautiful, happy, fun, interesting things such as painting and writing and my family and pets and trees and snow and baking.

Then, for reasons that seem to have something to do with genetics or bad luck, pain shows up again just as I've really started to forget about it, and I am forced to prioritize and juggle all the wonderful things I love with this big pink porcupine of pain metaphorically (or literally) on my back.

I've wondered if there is some unconscious draw within me that beckons pain and illness to come closer and stay awhile. Do I feel that I have so many blessings in life that I must pay for them by an equal does of pain? Do I feel guilty for having a home, a good marriage, two grown sons, enough to eat, a fulfilling career, and pretty much everything I want, and thereby unconsciously assuage this guilt by getting sick? I don't think that is it, for I've had times in my life where things were very tough financially and in other ways too. I don't feel the world owes me the good things I enjoy now, but I don't feel guilty about having them either. Like most people have been through a lot and come out all right; I'm happy with where I am in life.

Could my frequent visits from pain-the-entity be a result of genetics? Does pain keep a record of family trees, visiting one generation then the next? My father had some of the same achey-breaky conditions that plague me. Dad had the back, joint, and lung issues, for instance. His parents died when he was three (his dad) and four (his mom) of respiratory or viral illnesses. Asthma, arthritis, and allergies run in my family...as in run toward us.

And my eldest son has had more than any child's fair share of pain, which has caused not a little psychological pain for me. Watching your child endure is a particular kind of torture, I think. It is of some comfort that his disability involves a sensory disorder, and he seems to take illnesses that would bring me to my knees in his stride. Through six years of wound care to his legs, through many issues with his teeth and operations on his ears as well as a progressive hearing loss, even through a severe beating several years ago, he plods forward with his life, seldom complaining of pain or discomfort. It is almost a gift, how he seems to feel so little. But when I see the nurse unwrap his lower legs and stare at six years of seldom-healed wounds and scars from a condition that seems particularly unkind on the body of a young man with so many challenges already, I blanche and feel as if I might faint. I have had to learn how to adopt the matter-of-fact attitude of his nurse, of himself. It has not been easy for this queasy mother to do.

When I decided to write on this blog about pain, I did so to learn more about it and also to reach out to others who share this aspect of life. For some reason, in the midst of pain, I wanted to battle it by going deeper into the subject. I was in the middle of a painful week with facial cellulitis, an illness the endodontist described as possibly "life threatening," bumbling my way through each workday with the help of Tylenol 3 and icepacks held up with pillows against my swollen face while I sat on the couch and drew or typed or read. I was not allowed to lie down to sleep, and this bothered me more than I expected. The antibiotics and other medications played havoc with my sleeping schedule, and I found myself staring at my laptop's keyboard in the wee hours of the morning, wanting only to drink coffee and write.

I began to make a list of "all the stupid painful illnesses and procedures I've had in a half-century of life." (When you are unwell, you feel "half-a-century" old; when you are well, you feel, oh, "a bit past forty.") When I compiled the list, then healed from cellulitis, then looked at the list again, I realized the particulars did not matter. What brought the pain doesn't matter. What matters is that it was there and what it has taught me about being human, being mortal. So, I will spare you a list and ask you to trust me when I say, I know what it is like to feel pain so intense you wonder how you will face another day, but you want that day so much that you hang on and come out the other side. Fortunately for me, I have never gotten to the point of not wanting that next day, and the hope it might bring, to arrive. But I've come close enough to it to understand how powerful and all-encompasing pain can be.

Painful illnesses accompanied me as I raised children, moved from FL to OH, worked at my business, wrote books and painted and embarked on a thousand wonderful, life-affirming things. In other words, though pain is sometimes there, it is not all that's there, and I find that comforting.

Pain, I realized recently, is almost like an entity, a character, in the play of my life. If I had to draw it, I would draw it as a pink porcupine. Pink, because I love the color, and a porcupine because no one really wants to hold a porcupine very close at all. The pink porcupine might have been on my back (or various places within my body), at times, but at other times it wasn't there at all. It did not define me, and after each challenge I was able to move along toward more comfortable times. I say this not to brag, but to express thankfulness and impart encouragement. I have long been a fan of Sarah Ban Breathnach and her Simple Abundance Journal of Gratitude as well as Simple Abundance: A Daybook of Comfort and Joy. Writing down and thinking about the many blessings I've enjoyed in my life, have worked like a vitamin to hold me up during times of pain, to give me hope, to help me avoid self-pity.

Most of the pain I've experienced as an adult has consisted of either a dull, chronic ache and discomfort or an acute, sharp, intense pain that, thankfully, eventually, ends. It may take days, or weeks, or months, but it does end and seldom is pain so bad that it prevents me from doing my work, which I enjoy and find much comfort as I escape within the demands of it. (Working for myself really helps in this regard.)

Each time pain visits, part of me fears: What if it doesn't end? What if this is really something I'll have to live with for the rest of my life?" And I understand now that many people do live with a condition that is so painful it permeates everything they undertake, everything they hope for and want. I am humbled knowing the strength of the human spirit to endure what seems impossible to handle.

As I mentioned in Part 1, there seems to be a stigma associated with admitting to being in pain. The person who handles it with stoicism ("repression of emotion and indifference to pleasure or pain" ~Random House Dictionary) is respected more than someone who, in mentioning pain or illness, is seen as a complainer or whiner or weak person. Most all of us want to be that stoic person, but find it difficult and so add guilt to everything else we are feeling mentally and physically when ill. We seperate not only from deepest emotions, but from our loved ones who struggle, also, with feelings of guilt and powerlessness.

There must be a balance of honesty about our situation and the use of coping mechanisms that can channel all the emotions and thoughts we dredge up when we are being honest. And this is where creativity comes in. This is what we'll look at in Part 3.

Janice Phelps Williams


deb said...

Another thought-provoking and honest article. Growing up with an Irish mother, the answer to any complaint, "Take an aspirin." Or, "We don't get sick in this family." Okaay . . .:)
Looking forward to Part 3.
Deb Henry
p.s. Hmm, are you my psychic twin? I had mono at age 14 and made a painting of Motif #1 using all letters and numbers to create the buildings and the ocean. I cannot find it and wish I could. It was done mostly in red which is the color of my office. My mother claims she doesn't remember storing it. Ugh. Pain.

February Grace said...

Janice, these posts are a gift and a public service, both. Again, thank you for them. Isn't it unreal how many different types of pain the body can cause us? So many more, it seems, than should be possible for the parts of us we're aware of. Often it's not until something goes wrong with a specific part that we even realize it's there or appreciate it working properly until it stops!

As someone who has gotten to the point with pain so intense and lasting so long that I wished at times that at-home amputation (among other desperate measures) was an option and/or I did lose sight of wanting the next moment, let alone the next day to come, I appreciate the sensitive and hopeful tone to your posts. You've been through so much and accomplished so many amazing things in spite of it and you really are an inspiration.

I hope the day comes when medicine becomes more gender specific and they offer us some more options in pain control-- ones that aren't largely geared toward working on the male body. Until then, I (and many like me with massively under-treated chronic pain) just do what we can to get through it the day and I am very much looking forward to the rest of this series.


Janice Phelps Williams said...

Deb: Thank you for your comment. I wish you did still have Motif #1, with its letters and numbers. I bet it was really cool. My husband's mother kept tons of his childhood artwork and I wish she was still alive so I could meet her and say, thank you.

Bru: Knowing what you have had to cope with, your words mean a lot. Thank you for reaching out to me, and offering friendship and information. Thank you, too, for sharing your creative process on your blog.

Jessica Bell said...

Wow. Janice, you are an amazing woman. Your pink porky metaphor is spot on. I wonder whether you chose pink because it is a somewhat comforting colour? Did you know that it symbolizes good health? Perhaps your pink porky subconsciously represents something that you can't let go of, even though you may want to hold it as far away from you as possible? Very interesting!

Janice Phelps Williams said...

Jessica, I hadn't thought much about that! I did not know pink sympolized good health. One time I had to have a medical procedure and my son gave me this rubbery squeezy pink pig to hold. It was comforting. I have no idea why I envisioned pain as a pink porcupine...I wrote this article while under the influence of medication from the cellulitis...so who knows? Ha!

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