By Kiley Reitano
Individuals facing a lifetime of chronic pain - and their loved ones—often seek new ways to cope, particularly when medical care doesn’t completely ease their pain.
Reading, writing, and art can be incredibly effective coping mechanisms for people living with chronic pain, and those around them.
The beauty of words is that they can be interpreted differently from one person to the next. Cindy Steinberg, national director of policy and advocacy for the U.S. Pain Foundation, has run a chronic pain support group for more than 20 years. Early on, a member of Steinberg’s group shared a poem, “Welcome to Holland,” by Emily Perl Kingsley. The piece talks about raising a child with a disability, but it stuck with the support group and has become something of a rallying cry for them over the years.
“[‘Welcome to Holland’] is about accepting something that you cannot change and learning to be grateful for what you still have, learning to make the best of your situation,” Steinberg says. “If you spend the rest of your life grieving for the person you were, you will never enjoy the wonderful things you still have.”
Healing through reading and writing
Millie Quiñones-Dunlap, who lives with multiple types of chronic pain, leads two U.S. Pain Foundation support groups, The Reading Room and The Writing Room. They have become empowering, safe places for individuals living with chronic pain as they share stories, complete writing exercises, and read together.
Many in her groups have found a measure of healing through the process of reading and writing, which allows them to tap into a more intimate place that they may have closed off from the rest of the world, Quiñones-Dunlap says.
“Pain warriors, we can be hard on ourselves,” Quiñones-Dunlap says. “We forget to use affirmations and kindness. The Reading Room and The Writing Room remind us to be kind to ourselves and to get in touch with our own pain stories. That’s when the true healing begins.”
Poetry can also be an artistic form of expression for not only those living with chronic pain, but those around them.
Miles Ceriff wrote the poem “Jaded Sons” about chronic pain from the perspective of a loved one. The piece was inspired by Ceriff’s mother, who lives with chronic pain.
In “Jaded Sons,” Ceriff recognizes that family members sometimes accept the logistical challenges faced by a loved one living with pain but, over time, forget the daily, constant pain itself. Ceriff describes the observation about his mother that led to the idea for the poem: “She didn’t get used to pain, but those around her did.”
“[Caregivers and loved ones] tend to forget the pain part of chronic pain,” Ceriff says. “My mom didn’t ‘get used’ to being in pain. Of course she didn’t. Pain hurts.” Ceriff recognizes this concept and knows that while he may not know firsthand what his mom is going through, that doesn’t mean it’s OK to ignore or forget about her pain.
Exploring feelings through art
Art provides another tool to visualize and cope with pain. Christine Hirabayashi, PhD, LMFT, ATR-BC, a board-certified art therapist, has worked in chronic pain management since 2004.
The emotional damage that chronic pain has on a person can be as damaging as the physical pain they are in, Hirabayashi shares.
“Similar to bereavement, when treating chronic pain, the suggestion is not to just ‘get over’ feelings of loss or pain, but to be encouraged to conceptualize how to live with it,” Hirabayashi says. “Art therapy provides a space to explore feelings around loss that occur as a result of pain.”
She notes that the feelings associated with chronic pain can be exhausting, particularly because of the tendency to mask or internalize pain to avoid feeling like a burden to loved ones. “Finding an outlet for emotions due to the result of pain is important,” she says.
Reading, writing, and art can help you find purpose and deeper meaning following a diagnosis of chronic pain. These creative coping mechanisms can help you build something beautiful in the process of managing chronic pain.
Welcome To Holland
by Emily Perl Kingsley
Copyright © 1987 by Emily Perl Kingsley. - All rights reserved. - Reprinted by permission of the author.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
by Miles Ceriff
Copyright © 2022 by Miles Ceriff. - All rights reserved. - Printed by permission of the author.
In some ways she
Got used to pain
But in some ways she won’t
It sneaks in on
Her brightest days
Its nails caress her throat
A subtle shift
Of seated sitch
Will alter signals thrown
And to her brain
The lightning chain
Will bark that it is home
With scalpel marks
And burns down to her bones
Our mother’s heart
Post three restarts
Oft drums its beat alone
The two of us
Will turn to dust
Post seeing all she’s shown
But standing by
Our ears will lie
And bypass every note