Author: Linda Wright

Linda Wright, author of "My Turn: When Caregiving Roles Reverse," now lives in Florida. She has served on the boards of organizations serving people with rare, genetic bleeding disorders like hers. As a writer, she has contributed to several anthologies and is a member of the Tallahassee Writers Association. Linda is married to the Reverend Ms. Robin Gray.

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.”

Pondering Progress, Problems, & Possibilities

A humanoid robot with blue eyes is shown on the left, with a digital circuit board pattern on a blue background on the right.
~ Linda Wright

After reading AI 2041: Ten Visions for Our Future by  Kai-Fu Lee and Chen Qiufan

Television was invented years before it became affordable for the general public. The first TV in our house was one that had been rescued from the trash and repaired by a family friend. Before I was old enough to go to Kindergarten, I sat on the floor following Miss Frances’ instructions. I parroted the advertising jingles, like “Pop, pop, fizz, fizz, oh, what a relief it is.” Along with the lessons, I absorbed in Ding Dong School I found out what toys I should ask my parents to buy for me and, what cereal tasted the best.

As people opted to stay home and watch TV for entertainment, fewer folks listened to radio performances. There was a drop in attending movie theaters and live events, leading to job losses. Actors, writers, producers, sound engineers and musicians all lost jobs if they could not transition to other venues to attract an audience. Over the years, most people learned new skills or found other ways of marketing their talent. 

My disability caused me to miss many days of school each year. In my teen years I was unable to attend High School, because I could not readily climb up and down stairs carrying a heavy load of books. I became an avid fan of daytime talk shows, evening news broadcasts, and nighttime situation comedies.

Having had more than my share of TV in my youth both at home and in hospital beds, I have opted to no longer own one. As a person who can no longer read print, I shifted my focus to streaming music, audiobooks, podcasts and online news sources.

In 2023 I first learned about GBT Chat 4. That was the year the world was just waking up to the potential of AI.  I listened in amazement to a panel of physicians on a podcast discussing how they would now be able to more accurately diagnose and treat rare diseases.  Now that a significant number of medical records had been uploaded  and humans had trained Open AI to understand complex questions, doctors all over the world could upload images and describe symptoms, then get reliable options to care for their patients.

In 2024 I learned that I could produce an audiobook version of my memoir for less money and editing time than using a human narrator requires. I began the search right away for a mature female AI voice that suited the tenor of my story. It felt like a dream come true. When I finished uploading my text, reviewing the narration, and fine tuning some sections that didn’t reflect the emotional content, I was pleased with the results. I now had a book that I, a person who cannot read print, can read. 

Much to my surprise when  I started telling people what I had done, most folks reacted with alarm. “You can’t do that,” was a common reaction. They said, “It’s too risky. It might be a scam” or “You’ll be taking jobs away from real people.” Even worse, many traditional book distributors would not accept my audiobook because I had not used a human narrator.

As a person who was born with a rare medical condition, I have encountered many doctors who neither understood or were willing to trust that I knew best what I needed to survive. It would have been wonderful if they had been able to use Chat GBT. I would have gladly used a human to narrate my memoir, but I did not have the funds, or time, or ability to use my own voice. As a person with a disability, one of the things I have learned is how to use new ways of accomplishing my goals. I wonder if that has made me understand that all change comes with a set of benefits and risks, gains and losses.

You can now purchase my audiobook from Libro.FM and other online booksellers.

O Dirt

Cuped hands holding soil and a small tree sprout
~ Linda Wright

After “Ode to Dirt” by Sharon Olds

Who did not love playing in dirt as a child? Not me. Maybe it was sand at the seashore or mud or clay that you scooped up in your fingers. Or were you a child who was cautioned that dirt was filthy and not to be touched?

The backyard of the house my parents mortgaged was dirt poor. The sandy soil had been stripped. It had lost the nutrients and organic matter that help plants to grow. Depleted, it was no longer fertile enough to make a vegetable garden thrive.

Once the ground had thawed in the spring, I watched as my mother collected all the vegetable peelings and uncooked scraps of food waste in a tub that was stored under our kitchen sink. At the end of each day she would take the bucket out to the backyard, dig a hole in the space where my father had cleared the grass, and bury her gifts in the ground.

When the maple and oak leaves fell in autumn, they were raked into piles that the neighborhood children jumped into. After we grew tired of rolling in the musty pile of crackling orange, red, yellow, and brown leaves, they too were given space in the ground where they rested all winter.

It was rudimentary composting that in time brought us juicy tomatoes, squash, and crispy pole beans each summer.

O dirt,

help us find ways to serve your life,

you who have brought us forth, and fed us,

and who at the end will take us in

and rotate with us, and wobble, and orbit.

—Sharon Olds