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Chronic Pain lessons

img_5965My years with chronic pain gave me access to understanding the challenges it presents. As a means of processing what I learned, I wrote and published my memoir, “Silent Courage”.

I have just published my first children’s book, “Wheelie: the Wheelchair in Search of Adventure”.

It is joyous to use story as a means of sharing what I knew to be true about mobility challenged children, of which I count myself a member.

I invite you to take a look at  Wheelie and my new website, sailerseries.com. 

I would love to hear how you might be using your chronic pain experience to help make the journeying softer and gentler for those who follow.

Wheelie is available on Amazon and Barnes & Noble.

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Universal Design vs Handicapped Access

I got a boost of self esteem recently visiting the bathroom at the La Vegas airport. Airports are notorious for having older toilets that seem to be 12″ off the ground. I have 25 year old prosthetic hips. My ability to do deep knee bends is rather compromised. Without a bar or something to grab, I am challenged being able to squat down and then get back up when my knees are level with my chin. When I see low to the ground toilets, I often opt for the Handicap accessible stall, all the while feeling guilty if someone in a wheelchair or with small children greets me on the way out. They need the space and extra accommodations. My challenges are invisible.

But I spotted a “new” type of bathroom stall. It was next to the Handicap accessible stall, with a tall toilet and a grab bar. Basically all I need, minus the guilt. This stall had “universal design” features. Anyone could use it, it was accessible for all. marybyrneeigel

The movement to incorporate universal design into original building plans is catching on. Katherine Logan, in a recent article in Architectural Record, entitled “Level Playing Field” addresses recent projects and the advantages for planning for a broader community.

I am currently working on a series of chapter books for children aged 6-9. The main characters are physically challenged children who do not see themselves as diminished; they only see obstacles requiring creative problem solving. They are not looking to be separate, only allowed equal access. The kind that Universal Design includes. We all navigate this world in different ways. Let’s widen the lens to include more options.

Have you noticed any new “Universal Design” features in places you visit?

 

 

 

 

Artsy Escapes from Pain

Artsy Escapes from Pain

Several adult coloring books are currently ranked in the top sellers on Amazon. Those of us engaged in artistic work are silently smiling that folks are “getting it”. Getting that working creatively is rewarding. Getting that the arts allow you to process life. Getting that slowing down and focusing is a way of de-stressing.

I have always connected with the arts. At a young age I realized that it functioned as a pain management tool. It allowed me to purposefully navigate painful years. It even laid the roadmap to me eventually becoming an artist.

Landscape at dusk

Here is an excerpt from my published memoir, Silent Courage. This chapter details some of the ways I employed creative activities to help build self esteem and manage pain. My pain was from hip dysplasia and  not relieved until I reached the age of 40.

 

Chapter 6: Artsy Escapes

I never complained to my neighborhood friends about my legs in the same way that our fathers never talked about trading in their high school graduation caps for military-issued uniforms and guns to fight in World War II. There were certain things no one talked about when I was growing up. We called these the “unmentionables.”

As a group of almost one hundred kids in our neighborhood, we always played together. These were the baby boom years. (Our family of five kids would eventually include seven children with the additions of my sister, Rose, and brother, Joe, a few years later.) Playmates were plentiful. I did, however, dread the days when as a group we ran back and forth from one end of the block to the other, in search of a seemingly precious bat or ball. Some days when my legs would begin to hurt, I decided to forego whatever fun might be in store for the gang in order to rest my legs. This became my primary focus. I would often make up an excuse about my mom needing help with one of the babies. I just wanted an acceptable reason to sit down and rest. I am not sure anyone ever saw through my fabricated lies. Often, I wished I could trade my body for a new one so I could do everything my friends did.

Aside from school, my days were spent playing amid gangs of neighborhood kids. My life changed the day I discovered there were other options to fill the day. One playmate was enough. This made it easy to maintain control, voice your opinion, and choose whether to sit or stand. When I sat rather than stood, I avoided discomfort. I had as much fun sitting down while dressing up dolls and playing board games as I did running around in a game of tag or kick ball. I gradually learned that I could replace pain with pleasure by actively deciding how I spent my time. I could be in control—and that was revolutionary for me.

From a very young age, I loved using crayons and colored pencils to draw and color. I can still smell the crisp, slightly textured, manila newsprint in coloring books and recall the satisfaction of coloring inside a black outlined shape. Building up waxy, shiny, flawless layers of color delighted me. I brought something to life on a page. This creativity empowered me and gave me self-worth, as I proudly showed off every completed page to Mom and Dad for their praise.

I nourished this desire to make beautiful things with my hands while using the simplest of materials. Whether it was sculpting, helping Mom cook, or drawing, I did it all. I built detailed sandcastles with just sand and water. I helped Mom bake and marveled at filling up measuring spoons with flour and carefully dumping out perfectly domed shapes. The repetition of performing these activities was soothing in contrast to my pain. I may have begun by coloring inside the lines, but I would revel in going outside of them, exploring the possibilities of any and all available media.

My mother, like her mother, was very talented when it came to sewing and knitting. I watched her press the foot pedal on her gold-edged, black, electric sewing machine for what seemed like hours. She fed huge lengths of material under its needle and eventually produced a finished product. She creatively turned scraps of material into little outfits for our dolls. Long before I was old enough to reach the foot pedal, she would place it on the kitchen table, allowing me to press it with my hand and sew straight rows on doll blankets. I also loved hanging over the stuffed upholstered arm of the living room chair while she knitted. The rhythm of her clicking needles captivated me. I am thankful she had patience to deal with my questions.

“Mom, how do you do that?”

“Sit down and I’ll show you. Let me see your hands. Hold this needle in your right hand and this one in your left. Now start with this piece of yarn,” she said beginning her impromptu art lessons.

I recall walking into the bedroom that my brothers shared and seeing the blue curtains with white edges she had just designed, sewn, and mounted on rods. She followed no pattern—the entire project conceived inside her mind’s eye. I envied her talent. I fed off her desire to beautify the world. Inhaling the confidence with which she attacked projects, I willingly gave new things a try, believing that I was also competent.

Every once in a while Dad got creative, as well.

“What’s in the bag, Dad?” I asked him as he walked in one night after work.

“I stopped at the art store today and picked up some fresh tubes of cobalt blue and burnt sienna. The guy who worked there suggested I buy this new brush, too. They’re selling like hotcakes! Think I’ll go down after dinner and work awhile. Want to join me, MT?” He referred to me by my initials for Mary Theresa, which was his nickname of choice.

“Sure, let me go get my shoes.” I bypassed nagging mental reminders that I had a spelling test to study for—that could wait.

In the back of our unfinished, concrete basement, Dad set up a modest studio for his painting supplies on an old office desk. He reproduced his favorite paintings from the small postcard versions he had purchased at the Art Institute of Chicago. I would sit on a wooden stool next to his chair and watch him squeeze out snakes of oil paint onto a parchment palette. He drenched them with smelly oil and mixed it all together with a bent knife. A secret he had not shared with me was that he had a form of color blindness. Sometimes his colors were wide of the mark. I would have to shake my head and tell him, “No, that’s not it.” He relied on me to suggest what colors to mix to achieve a match. When we got a color correct, he said, “Yeah, that’s the ticket!” That was my favorite reply of his, which made me feel like an expert artist. I know these precious times spent with each of my parents inspired my interest in art later in life. I often wished we talked about my leg pain with the same ease with which we mixed paint and stitched material.

As I grew, my parents never asked me about my legs. In fact, they avoided answering any questions I raised. My father, more than my mother, displayed a strong denial about anything painful. When I complained about my legs feeling tired and heavy, my mother frequently replied, “You should tell your father.” He would respond late in the evening returning from work with, “No, that’s not possible, MT. Why would your legs hurt?”

How would I know why my legs hurt? At that young age, when all I knew was to trust my parents, having my hips and my feelings hurt at the same time felt overwhelming. When my questions got bounced back at me from my parents, I began to feel that I did something, unbeknownst to them, to cause my pain. Perhaps that was their way of giving me a normal childhood. Or one that seemed like it. The Irish have a knack for painting over the harshness of reality to make it more palatable.

I am sure my parents received the assurance that everything that could be done for my hips had been done. I am not sure whether they ever heard I might encounter pain, which would gradually worsen as my bones matured. Or maybe they were warned. That might explain their unwillingness to hear me complain. It would validate a reality they hoped to avoid.

About this time I began reading children’s mystery books to escape my discomfort. Much like my favorite characters in these novels, I began mentally recording situations that seemed unusual. The things that I noticed and recorded were: having to skip to keep up with the walking pace of friends; always being the last one to finish a race; wanting to sit when others comfortably stood; choosing to walk around rather than climb a fence; struggling to jump rope double-dutch style; overhearing muffled conversations mentioning my name that ended when I approached. I sensed something unique about my pain experiences, but how could I be sure? I only possessed those clues, which added up as I grew taller. No one wanted to accept what I so desperately wanted to share. Is there something wrong with me wanting to share my feelings?

My parents continuously failed to acknowledge my complaints and their silence began to surround me. Their avoidance, dismissive nature, and lack of communication crystallized my secret. As my legs were getting longer, my pain increased proportionally in size alongside my shame and guilt. I knew what I felt, I just did not know why. No one ever told me about my hip dysplasia diagnosis or that I wore a corrective cast as an infant. I just knew the aches and fatigue that came from walking or standing for long periods of time. In addition to the physical pain, the discomfort that no one understood my complaints gave my pain a harsher edge.

I deeply regretted my hip pain being an unspeakable topic. My pain was an “unmentionable.” The lack of understanding, conversation, and acknowledgment only heightened my anger and frustration, allowing my secret to get darker and deeper. A chasm grew between what I knew to be true, that my legs always hurt, and what my parents would not validate, that there was a problem. I knew of only one thing that might provide some relief. But I needed my parents to agree on it first.

 

Changing Attitudes about Pain

EIGELSeptember is Pain Awareness month. In a article in the current issue of the Chronicle, the American Chronic Pain Association quarterly newsletter, I talk about how in my childhood, not talking about pain was an accepted means of pain management.

Our ability to effectively deal with pain has required changing our attitudes about it. My story, Silent Courage, is but one example of how we have moved forward and have better pain management options  beyond silence and needles, knives and narcotics.

Hoping if you are in pain or know someone who is, that you are reaching out and educating yourself about all the available options. I love that I have been able to navigate to a pain free place, in spite of physical challenges. It is possible.

Love to hear about your journey with and through pain. Be well.

 

Writing to Heal

 

Silent Courage, Mary Byrne Eigel

Silent Courage, Mary Byrne Eigel

Doing a pre-release review of my book, Silent Courage, Dr Steve Grinstead said to me, “Mary, you know what you have done, don’t you?”

“No. What?”

“You did Narrative Therapy.

“What is that?”

“You need to read Narrative, Pain and Suffering, by Carr, Loeser and Morris. It will explain it.”

The book arrived. It looked like a medical textbook, full of research. I had paid for it. I ought to read it. I hesitantly began. The book documented studies revealing the healing effects of having people write what they knew their truth to be.

As I read, I felt an internal shift. My mind was now comprehending what my soul knew, which was…

After writing my book, I felt like a different person. I was challenging myself to things like biking the Golden Gate bridge when previously I had difficulty motivating myself to walk more than a mile.

I knew I was traveling lighter. The emotional heaviness I had carried for years after a 40 year journey with chronic pain was no longer defining who I was. My soul felt aligned with the person I wanted to be, not just the sum of past experiences.

The current issue of  “O” magazine has a captivating feature entitled, What’s Your Story. With input from several authors, it presents the benefits of picking up pen and paper and seeing what appears on the page.

Here is a simple way to begin:

  1. Quiet yourself in a comfortable place with your writing tools nearby.
  2. Tell yourself that you desire to know a bit of the story your soul carries.
  3. Begin writing and don’t stop. Do not judge what you are writing.
  4. When you are finished, read what you wrote. Any surprises?

For the last year I have been presenting “Mining your Soul Story” workshops. Based on my own experience and that of workshop participants, I guarantee you will uncover buried treasure.

“The unexamined life is not worth living”  Socrates

I will continue to explore ideas for connecting with the story your soul wants to tell in future posts.

Please follow or connect to continue this game changing conversation. Let’s keep our pens rolling!

I look forward to having you join me.

 

 

 

 

Painful Lessons: Listening to the Boot

I have the good fortune to still be wearing this large, black, heavily Velcro-ed boot to stabilize my foot after injuring it. This boot has forced me to reorganize my entire agenda, so I decided we needed a serious talk.Eigel_boot

“So, boot, you are making sure I limit activities and focus on things that I can do while sitting. Is there something I should be learning?”

Silence.

“Hmm … what I am hearing is that you are a good thing. You are reminding me of how many directions I travel. Am I spreading myself too thin?”

Silence.

“Ok, so what I am feeling is that I am able to do certain things while sitting, like writing and focusing on the children’s’ books that I keep telling myself I am working on. Is that what I should be doing?”

Silence.

“Oh, I see. You are making me realize how much time and effort these beautiful stories require. I have spent days, not knowing how joyous it is to be engaged in developing these ideas.”

Silence.

“Ok, ok, I get it. You came as a grip-check forcing me to look at what was going on in my life and help me re-prioritize where I should be spending time.”

Silence.

“Then I will bless your presence and honor the lesson you have taught me. Who knows, you might end up in one of these children’s stories. I might even give you some super powers like insight, that you have given me. We’ll just have to see.”

Restrained by Pain

 

Do you know how they keep strong adult elephants restricted by a single metal cuff around their ankles?

Here’s how.

When the elephants are infants, their keepers place a chained metal cuff on one of their legs. Since the elephants are small, they may struggle to free themselves, but are not able to escape. These elephants grow up believing that the metal band is stronger than they are.

Their belief limits their actions.

I have been pain-free for many years since my hip replacement surgeries, and I had to work hard to stay there. Recently a twisted ankle has brought me back to the dreaded house of pain. But being in pain is not my biggest problem. I physically hurt, but the way my head has responded, hurts even worse.Screen Shot 2015-03-19 at 12.46.33 PM

Old beliefs and the fear of being in pain, rooted deep in my mind, have almost paralyzed me. Being angry, resistant and failing to accept that my ankle requires tending has allowed the original injury to amplify my suffering. Old beliefs limit us and sound like, “If I admit to what I know to be true it will mean I will be sidelined and have to depend on others for many things and lose being able to control my daily routine.”

Recognize when these old beliefs show up — and shut them out. We can do this by being able to put space between ourselves and a problem.

  • Step away from the situation for a second.
  • What’s really going on here? Is it really a sprained ankle, or something deeper? (It’s usually something deeper.)

This allows you to respond to your unique issue at hand rather than mindlessly react because you are letting yourself be restricted by old beliefs. Don’t let your past experiences win; they are just that — something that happened to you in the past. Unshackle yourself from the tiny, metal cuff of old beliefs. You have grown to be much bigger than than, and they can’t hold you anymore.