Listening to the Unseen

Close-up view of an elephant’s eye, showing detailed skin texture and wrinkles surrounding the eye area.
~ Linda Wright ~ Leave a comment

Inspired by reading “The Invisible Kingdom: Reimagining Chronic Illness,” by Meghan O’Rourke 

The physician’s assistant asked, “On a scale of one to ten, how bad is the pain?”

I responded, “Four… maybe?

Pain is a solitary experience, something no one else shares, it is always hard to describe. For me it is more like a noise getting louder or softer. It comes and goes and when it goes, it mostly disappears from my memory. Words never quite convey the feeling… the ache, the sharp stab, the feeling that something inside is pulling tissue deep inside my gut. 

Not only that, how could I possibly categorize this pain on a scale with one I have had before… like the times I have sprained an ankle, or the time I could barely breathe after the car accident when the airbag cracked my sternum. I’m glad I cannot bring those sensations back clearly to my mind. I remember them only as events that I want to forget.

On a scale of one to ten, how bad is the pain? This question does not ask me to describe the complexity or the variability of what I feel. It is not one sensation, nor is it the same from minute to minute. In frustration, I mutter, “I hate this question.”

Still I want others to understand that I am in pain. It takes energy to hide or pretend. When I try to communicate with friends, it stirs something in them. Many feel some responsibility to respond. Some encourage me to think more positively. One offers a suggestion, intended to be helpful. “Try writing from your non-dominant hand and see what you learn about the source of your pain.”

“I haven’t been able to write easily even with my dominant hand since a hemorrhagic stroke left some Wernicke’s aphasia two dozen years ago,” I mutter. Frustrated, I struggle to show appreciation for all suggestions, but I can’t always summon genuine gratitude.

There may be nothing someone else could say that would truly help, though people try. Those who are uncomfortable with illness or disability often respond with sympathy, or worse, praise for my endurance. I feel the gap between us widen, a chasm between us that words cannot bridge.

When my primary care doctor enters the examining room. I say, “I imagine that this pain might be caused by adhesions from the liver transplant I had nine years ago. It has been sporadic now for a few years, usually lasting a few days or more, then disappearing. This time it is not going away,”

She believes me and I am grateful. There have been lots of times when doctors have not believed my uncharacteristic symptoms.

She orders an X-ray of my lungs and ribs. The pain seems to be radiating from my lowest rib and it doesn’t increase or decrease when she presses on my side and abdomen. She also orders a short term dose of Prednisone.

I know that all medications, even those that help, come with consequences. Today the pain is gone. Even the chronic ache in my shoulders has quieted for now.  I’ve been more restless. I crave sweets. 

Yesterday I took the last dose. The pain is gone. Even the chronic ache in my shoulders has quieted. The side effects are diminishing. And now that the medication is finished, I can admit what I couldn’t before. I am tired of pretending I’m fine; tired of reassuring my loved ones, my friends… and myself. Because what cannot be seen is still there, waiting, whether anyone else knows how to measure it or not.

Is the Life I Am Living the Same as the Life Within Me?

A praying mantis resting calmly on a human hand in natural light.
~ Linda Wright

After reading “Let Your Life Speak: Listening for the Voice of Vocation,” by Parker J. Palmer

Now that my bathroom mirror reflects the face of an old, gray-haired woman and my arthritic bones are stiff and painful, I am pleasantly surprised at the longevity I never expected to have. As a child, I was already amazed by life and endlessly curious about the world around me. I lived each day eagerly exploring and relishing my relationships with the creatures I encountered.

Once, I found a praying mantis that had fallen from a tree and offered it my hand. It dipped its head down to drink water from a spoon I held before returning to its home in the leaves. Even now, the world still holds such wonders for me.

Despite aches and pains, much still fascinates me and astounds me. And yet, I know acutely that, as a human being, I will not escape the decline that comes with age. I will die. A Buddhist teaching reminds me, “My deeds are my only companion; they are the ground on which I stand.”

From time to time, I pause to examine how I spend these remaining years. I ask myself: What occupies my mind, and does it align with the priorities I claim to hold?

One area that caught my attention is social media. Recently, I chose to check Facebook only occasionally. As an administrator for two private groups, I can’t log out entirely, but I’ve stepped back. Too many of my Facebook friends have passed away, and others now post little beyond recycled content.

There was a time when Facebook felt meaningful. I used it to stay in touch with people who mattered to me — like a young woman born in New Delhi who now lives in Japan. At her request, we gave each other nicknames: she calls me “Granny.” That always makes me smile. It confuses my friends — since I’ve never had children, why would anyone call me Granny?

We met online when she was a young teen. She was struggling to live with a rare bleeding disorder, with trauma, and with parental pressure to marry. It frightened her, especially when her disability narrowed her options. We exchanged emails for years.

Eventually, she married a man in Japan. Now divorced, she’s working and building a new life. She sends me birthday cards and photos over  Messenger.

Some relationships endure even as the platforms shift.

I also reflect on how I use my money and time. When I first started writing, I didn’t expect to earn anything — and I was right. What mattered to me was hearing from people who had read my book. Whether they posted a review or sent a private note didn’t matter. My heart leapt when I found a handwritten thank-you letter in my mailbox from someone I’d never met.

I own the rights to my book and believe in the freedom to read. I’ve donated copies to my county library, the Library of Congress’s National Library for the Blind and Print Disabled, and Bookshare. I’ve also withdrawn my ebook from Amazon and stopped buying from them.

I often ask myself:

• Are my values expressed in my actions?

• Am I doing things that bring joy or comfort to others?

• Am I helping in ways that are actually helpful?

Not always, I admit. But I’m doing the best I can with what I have. I believe that what I do — how I spend my time and what I write — matters. I’m grateful for the rare moments when someone tells me I’ve made a difference. It’s a quiet, enduring gift.

Living With What the Holidays Bring

A snow sculpture of a Buddha sits in meditation outside a clear church window, framed by falling snow and winter trees, while warm candlelight glows inside the sanctuary.
~ Linda Wright

My father defined himself as an agnostic, which I found frustrating, because as a child, I preferred simple yes and no answers. It had to be one way or the other. 

Dad had memorized large sections of the bible and when the door bell would ring he would invite in the Jehovah Witness, or the Seventh Day Adventist, or the Mormon missionaries. He was eager to discuss what they believed and how they interpreted the scripture, especially certain sections that perplexed him. 

My six-year-old brain longed for simple answers, while my father seemed to enjoy holding more than one idea at a time. 

“Dad!” I insisted, “Do you believe in God?” 

He looked at me for a long moment and gently replied, “I don’t know.” 

Nevertheless, we celebrated Christmas. It was a tradition. 

Father made our greeting cards. He started in the summer each year, learning a different method of print making. Then he prepared the fabric, metal, or wood he used to print the cards. Lastly, he drew the design. In November he began printing the cards. 

Mother steamed figgy pudding for gifts. While the scent of cinnamon and cloves filled the kitchen, I made snowmen out of hard sauce to place on top when the pudding was reheated and served. The snowman would melt into a sweet puddle.

My parents explained that Santa Claus was not a person, but “the spirit of giving.” It amused me that I could tell my eight-year-old friends I still believed in Santa when they felt their faith had been betrayed.

Outside the sanctuary of the church of my childhood, the minister built an enormous Buddha out of snow. He positioned it just outside the window looking into the sanctuary. The Buddha’s eyes were closed, and I wondered what he thought of us singing Christmas carols.

Now, I see Winter Solstice, Christmas, Hanukkah, Kwanzaa, and “  for the rest of us” as a mix of secular and sacred holidays. This season carries both joy and weight. It is a time of celebration, but also of unrealistic expectations, stress, anxiety, and sorrow.

The first time I experienced grief was on December 24, 1964 when we learned my great-uncle Eustace had died. I still remember how sad I felt that Christmas Eve. Just the previous summer, he had shown me how to extend my fishing pole, holding the little fish dangling on the line close to the camera.

“Everyone will think you caught a big fish when they see this photo,” he winked.

During this time of year, sights, songs, or even quiet moments often bring me to tears. Each year, my arthritis and fatigue constrain me to do less and less to decorate the house with winter cheer. When I realize that I once had abilities that are now gone, I can slip into remorse. 

Even my friend’s challenges weigh on me. My neighbor died last June and while alive, he insisted that his family hold a Christmas party every year, although his widow strained to make all the preparations. This year she is hosting the party alone and I wonder how her heart is feeling as she does. 

A few weeks ago, the granddaughter of another neighbor died. She told me she is too distraught to celebrate this year. When she admits she isn’t even sure how her granddaughter died, because her son does not want to talk about it, I listen.

Grief cannot be denied. And when you live in a retirement community, it is a regular visitor. However loss enters our lives, it deserves to be acknowledged and affirmed.

Even though I once demanded my father take a stand, these days I believe life does not fit neatly into little boxes. It is not one way or another. Faith and doubt, joy and sorrow, hope and fear are fluid, shifting as we age.

So although I wish people well this time of year, I am mindful of the complicated emotions the season carries. For me, caring for one another matters more than our differences.

Sometimes it’s better to be kind than to be right. We do not need an intelligent mind that speaks, but a patient heart that listens.

 Gautama Buddha

Pride

A diverse group of smiling people, including a woman in a wheelchair, a guide dog, and others, pose together in front of a colorful striped background.
~ Linda Wright

July is Disability Pride Month and I  have been thinking a lot about a poem Laura Hershey wrote in 1971 entitled “You Get Proud By Practicing.” It is one of my favorite poems. 

I’ve had more than seventy-five years to practice being proud. When I was a child I was the only one in my age group who had to go to the doctor for treatment if I fell down and scraped a knee. I was the only one who had to go to the emergency room for a nose bleed. By the time I was a teen, I didn’t know anyone else who had to see an orthopedic surgeon. Many adults and even other children focused on what I couldn’t do rather than what I could.

I wasn’t proud yet, but I also wasn’t ashamed or embarrassed by my disability. The over culture, or the attitude of the dominant culture, is one of ableism. It is learned at a young age. I knew that most people saw me as less than “normal.” The truth is that more than one in four adults in the United States have a disability. That sounds pretty normal to me.

When I finally met another teen in the early 1960’s who had a bleeding disorder, I believed I was lucky to be a girl. My new friend was a boy with hemophilia. In order for his father to be proud of him he had to play hockey. The battering his body took trying to make his father proud of him left joint injuries that could not heal. He needed a total knee replacement before he turned fifteen. 

It took years of practice before I could feel pride in my abilities. My disabilities have increased with age but I am no longer the only one in my age group who has a disability. I don’t feel like the odd one out anymore, but I don’t see many of my peers feeling proud. In fact many have internalized ableism, trying to deny their disabilities or cover them up in order to feel good about who they are.

They haven’t learned as Laura Hershey says:

 “You do not need
to be able to walk, or see, or hear,
or use big, complicated words,
or do any of the things that you just can’t do
to be proud.”

Who Are Your People

A group of young children stand close together outdoor with serious expressions. The children have different racial characteristics a school building with air raid siren on a pole is in the background.
~ Linda Wright

After a song by Lea Morris

Recently a friend asked me, “Who are your people?” She wanted to know who I could trust for help when I needed it. It is a question that has seemed loaded to me since I was a child. I remember two of my young friends demanding to know, “If you aren’t Irish and you aren’t Italian, then what are you?” I was only six years old. I didn’t know the answer and I didn’t understand why it was so important to them. I had not yet learned how ethnicity, race, and identity could be used as weapons.

In the mid-1950’s people said we were in a Cold War. We couldn’t trust the Soviet Union. They were not like us. An air raid siren that was routinely tested stood in one corner of the school yard. When it went off our teacher had us practice by lining up single file and marching quickly down the stairs to the basement where we sheltered in place. We were told we would be safe from nuclear fallout there. We crouched against a wall until the all-clear sounded. Then we marched back to our classroom and pretended that we didn’t think the exercise was both terrifying and foolish.

My childhood home was near an Air Force base. When a jet took off, loaded with supplies, it looked as if it would barely miss scraping the roof of our two bedroom house. The china cups in the kitchen cabinet rattled. Pictures on the living room walls tilted a bit more to one side each time the house shook. All conversation came to a halt as we waited until we could hear one another again. We learned to live with the frequent disruptions, ignoring the roar of the engines. I didn’t wonder what cargo the planes held in their bulging belly or who was being killed.

The war was no longer cold. First the planes were on their way to Korea and then they took off for Vietnam. At first, I was too naive to know that our people were killing people.

My father was six years old when World War I ended. He had believed that was the “war to end all wars.” When the United States entered World War II, Dad enlisted in the Navy. The ship he served on transported both equipment and personnel. Years later he was still troubled by how the black soldiers who came on board were mistreated. He did not understand why some people could be treated so differently.

If asked today, “Who are your people?” I would respond,”all people are my people.”