Tag Archives: retinitis pigmentosa

Seeing Red

7 Jun

by Stella De Genova

Imagine a world of blurred and sometimes abstract images. Imagine looking up and seeing a blue sky and beneath it, gray buildings and foliage and silhouettes of people.  There is subtlety of color but is it green or brown or is it purple or blue?  And when the light dims – well, let’s just say all bets are off.  I’m never sure enough of colors anymore to be able to pick and buy my own clothing in a store.

And then something catches my eye: a red apple, a red cayenne pepper, a red flower, a red convertible. It’s almost like an artistic twist in a Benini film.  What a stroke of luck for me!  No, not the part that I have RP (retinitis pigmentosa) and this is what I see daily but the fact that red has always been a favorite color of mine and now, along with the bright blue sky on a sunny day, this is the color that consistently pops out for me.

It’s weird the way life works. We can all think about what we’ve lost in life but let’s be honest, a person can only dwell on loss for so long.  Could be we’re in a better place when we move past the loss and cherish what we do have.  Trust me, there’s someone out there who has less than you or me.

Personally, I choose to see red today and I have no complaints about that!

What Defines Us

16 Jan

by Stella De Genova

When I was a kid, I was a 6 year-old with glasses because of myopia. I had “night blindness” due to my retinitis pigmentosa (RP) but that wasn’t diagnosed yet so my tripping over or running into things in the dark was chalked up to my near-sightedness and being a little clumsy.

No one knew or thought of me as being blind or having a disability. There were no over-protective limitations set on me as worried parents are known to do.  So when my interest went in the direction of art, I had all of the crayons, colored pencils, drawing pads and construction paper a blooming young artist could ask for.  Even after my RP was diagnosed when I was 16 years old, I majored in art in high school, and planned on attending an art academy post high school.  As far as any of us were concerned, I just had to be careful in the dark, but otherwise my daytime vision was correctable.

As time has passed, my RP has progressed, and even in good light, things are quite blurry and much of the time, colorless. I use a white cane when moving around outside of my home.  But my artwork has been my oldest friend and it still is.  I may have changed when and where and how I do my artwork but if I have to define who I am, I am an artist, a mother, a wife.  Blind is much further down the list because it’s something I live with, not who I am.

So it’s not so much that I have this great positive attitude toward my blindness. It’s just that I look at it as something I live with but it’s not who I am.  And now that the holidays and all of the attached obligations are over, it’s time to get back to some painting!

Stella De Genova posts submissions by blind and visually impaired authors on this blog, as well as some of her own.   You can see her artwork at: http://www.artbystelladg.com

Music Is My Sanctuary

4 Sep

by Maribel Steel

One Saturday morning, my dad sat at the kitchen table, flicking through the newspaper.

“Want to know what career you might like to do?” he asked, skimming through the employment section as I sat down. At fifteen, my family had received the diagnosis that I had Retinitis Pigmentosa and my career prospects seemed very limited.

My mum was stirring porridge on the stove and took a step closer to peer over dad’s shoulder. He ironed out the crease obscuring the print with a flattened palm and scanned the long columns. Taking a swig of hot tea, he read his summarised version.

“Teacher? No. Air-hostess? No. Secretary? No. Nurse? No. Hmm…”

My mum scooted back to the stove. Our enthusiasm dwindled rapidly as each job prospect was dismissed. Career options had been an uncomfortable subject to talk about, and as we searched for a solution, none of them seemed possible. I had to fight deep feelings of potential failure. I couldn’t let the new diagnosis of going blind smother my dreams.

My parents tried their best to compensate for my vision loss with material things, making my bedroom very comfortable. Mum cheered up the space by using blazing yellow wallpaper and new furniture. They installed a lavish stereo system, a portable black and white TV and even gave me a green phone to chat with my girlfriends after school.

Having my own oasis to escape to was really a wonderful gift of love. In the privacy of my room there were no roving eyes to catch me out when I bumped into the modular furniture or fumbled around looking for misplaced objects. The parental security camera didn’t operate here in my secluded haven.

I was free to seek comfort through my passion for music. I adored my collection of vinyl records and spent happy hours singing and imagining I was a famous pop singer. In my safe existential satellite, this imaginary world was my normal world. I didn’t have to compete with anyone, and I didn’t need eyes to sing.

Dreams of my up and coming stardom as Australia’s next Olivia Newton-John soared high on wings of hope as I sang harmonies to all her pop songs. So impressed by her double-barreled surname, that I felt compelled to dream up a stage name of my own.

‘Ladies and Gentlemen…introducing…the wonderful next queen of pop – Miss Adelyn Lindsey-Hayes.’

It seems comical to me now but I did use my fictitious name once when I auditioned for a small part in the musical, The King and I for a local production. The reply printed inside the envelope, offering me the role began with, “Dear Miss Hayes…”

I was tickled pink.

I didn’t become that famous pop-star but a song is never far from my heart.

“Use what talents you possess. The woods would be very silent if no birds sang there except those that sang best.” Anon

Maribel Steel is an author, writer, blogger, mother and vocalist. She lives in Melbourne, Australia with her partner and teenage son. She was diagnosed at fifteen with Retinitis Pigmentosa (RP). Maribel writes about places to feel, sounds and textures to explore as well as sharing insights on crafting The Art of Being Blind. She has self-published a book of short stories (memoir) and has several articles featured in various journals and blogs.

Read more about her at: www.maribelsteel.com and being a teaching artist at: http://www.gatewaytoblindness.blogspot.com

In the Heart of the Nest

12 Apr

by Maribel Steel

On my thirteenth birthday, I ripped open my presents. A rectangular box, with a pale watery landscape on its cover, made me jump up and squeal. My eyes widened as I savoured the moment, opening the box to reveal a riot of colour.

Six nested tiers of delicious Derwent pencils. Round-barrelled, elegant waxy spires of seventy-two fine art pencils, and I couldn’t believe they were all mine.

I dived-bomb my gift-bearers.

“Pity you don’t like them.” Dad laughed, attempting to free himself from the excited drop-bear clinging to his chilli-red cardigan.

“I love them!” I squealed.

Sweeping up my wands of colour, I followed my mother to our sun-filled kitchen. In the heart of her nest, surrounded by the warmth of saffron tones, was where I felt most inspired to draw.

I watched my mother slip on a cotton apron and swiftly tie the straps in place as she began to prepare the rich tomato sauce for our Spanish brunch.

I traced patterns of dancing sunlight onto a blank page, blending delicate shades of primrose yellow and orange chrome that swirled before my eyes.

My father entered the room and pulled out a chair. He moved the coffee cup to his left, encroaching onto my drawing territory guarded by Derwent soldiers.

“You can finish that later, darling,” mum said. “Lunch is ready.”

One by one, Mum took sizzling dishes out of the glowing oven. The spicy chorizo sausage smoked my brother out of his bedroom: happy to trade his six-string guitar for mum’s Eggs a la flamenca and put song writing fantasies aside for a while.

Our mother served each of us our fragrant meals. She moved swiftly from oven to table, puffing little puffs as she warned us to blow the piping hot sauce. The edges of the oven poached eggs bubbled in a sea of floating tomatoes, black olives and spicy sausage.

“So we’ll pick you up after school tomorrow, OK?” My father said plainly.

Looking up at him, I shrugged my shoulders. I had hoped my parents would have forgotten about the eye examination at school, the letter that came home – and the appointment they had scheduled with an Ophthalmologist.

I suddenly felt sick and jumped up before given permission to leave the family celebration. “It’s not fair.” I stomped my foot.

What’s up with her?”

Paul – leave your sister alone.” Mum scolded and continued eating, ignoring my melodramatic outburst. “Sit down, darling, please finish your egg.”

“‘It’s not fair.” I repeated angrily. “Why won’t anyone listen to me? I-Don’t-Need-Glasses.”

And with rigid chin, I turned from the table, bumping into the wooden door frame as I ran crying to my room, the words don’t be silly chasing me until I could slam the door shut on the world.

It took another two years before we learned the two words that changed my life forever – Retinitis Pigmentosa.

Maribel Steel is a writer & inspirational speaker, blogger, mother and vocalist. She lives in Melbourne, Australia with her partner and teenage son. She was diagnosed at fifteen with Retinitis Pigmentosa (RP). To read more about her various writing projects, visit her website: www.maribelsteel.com

Or read her most recent post ‘Being Blind Benefit #1’ at: www.gatewaytoblindness.blogspot.com

The Miracle of Seeds

28 Mar

by Audrey Demmitt

Do you remember the sheer delight of planting a bean in a handful of dirt in a Styrofoam cup and watching it grow as a child? There is nothing quite as wonder-filled as a seed. The variety of color, shape, fragrance and flavor contained within that tiny package is a miracle. It is spring now and miracles await to delight, inspire and calm the soul.

“In every gardener there is a child who believes in The Seed Fairy.” ~Robert Brault

I remember the first time I planted my own vegetable garden. Enthralled with the simplicity of the seeds, I lavished them upon the tilled ground with great enthusiasm. Imagine my excitement as they burst forth in varying shades of green, tender shoots. Honestly, I was astonished and thrilled at the power I discovered in my own hands to cultivate. And I was humbled by the earth’s desire to give me such beautiful and useful gifts. Daily, I would “walk the plantation” and assess the new growth in my garden. As the summer wore on, I was blessed by more tomatoes and beets than anyone in my family wanted to eat and a mammoth pumpkin vine that threatened to swallow the house. Soon, I realized I needed to learn how to preserve the generous bounty of my over-ambitious garden. At harvest, the kitchen was abuzz with the activities of canning and freezing the colorful, fresh vegetables. And I was hooked on the yearly ritual of placing the diminutive, surprise parcels into a bit of dirt and waiting for the anticipated joy of new life.

“Gardening is cheaper than therapy and you get tomatoes.” ~Author Unknown

It is well-accepted that gardening has a therapeutic effect on humans. Many an author and poet have extolled the benefits and special powers that plants have on us. There is even such a thing as horticulture therapy, which is used to rehabilitate people. There is something very calming and soothing about the process of playing in the dirt in the warm sun and nurturing plants to grow. Throughout my life, I have dabbled in all kinds of gardening. It seemed that I was always happiest when I was planting, growing, and caring for plants. When I lived in a rural setting, it was a large vegetable garden. Then, I studied perennials and herbs and planted them for their different uses. I even had an indoor garden of over 20 African violets for years. I used to say to my kids “Look, the violets are all blooming! That means momma is happy!”

“At the heart of gardening is a belief in the miraculous.” ~Mirabel Osler

Over the years, due to my vision loss, I have scaled back my gardening. But I always have something growing to remind me of the miracle of life. Now, I have a small herb garden in an antique bathtub on my patio. I maintain large pots of annuals that spread their cheer in spring and summer. I love to plant sunflowers for their big, bold blooms and seeds to feed the birds. At Christmas, I like planting an amaryllis bulb in a pot. My children used to measure the daily growth and marvel. Indoors, I keep several easy-to-grow plants that add color and oxygen to the sunroom. I will never be without my plants. They are such simple pleasures.

“Plants give us oxygen for the lungs and for the soul,” ~Linda Solegato

So, if you are in need of a little joy, pleasure, sunshine, surprise, inspiration, or stress-relief, consider plant therapy. Start small. Start with a seed and a Styrofoam cup. A world of wonder awaits you.

Audrey Demmitt was diagnosed with Retinitis Pigmentosa at age 25 and has been legally blind since 1994. She has used a guide dog for the last three years. She is a retired  school nurse. Audrey lives in Georgia with her husband and three adult children. See more from Audrey at her blog: Seeing Possibilities, http://seeingpossibilities.com/



Independence May Be Overraterd

28 Feb

by Audrey Demmitt

I used to be a fiercely independent type. When I received my diagnosis of Retinitis Pigmentosa and the possibility of blindness registered, I panicked. What would life be like if I could not do “my own thing” on “my own schedule” in “my own way”? Little did I know at the time. Gradually, as my vision receded, so did my confidence, my out-going spirit, my freedom and my independence. There is so much to learn  in order to be “independent” as  a visually impaired person: how to use technology, how to use a white cane, how to use public transportation, how to cook safely, how to use a  guide dog, how to ask for help…it takes courage and motivation and gumption to restore a level of independence in the face of vision loss. But there is more to the equation.

In the process of learning to be independent once again, I learned surprising lessons on inter-dependence. Once I bemoaned to my husband that I was losing “my independence” and he would be stuck taking care of me. He remarked that there was not much place for independence in marriage anyway and that the best arrangement was “interdependence”. Interdependence is defined as mutual dependence between people or entities. By nature, it involves collaboration, reciprocity and mutual benefit. All living organisms are interdependent. World economies are interdependent. Communities are interdependent. That is to say, we are all connected to each other and we need each other to reach our goals in life. We are undeniably linked to our families, communities, and the world at large. We need certain things from others and they need certain things from us. We really do need each other and once we learn this, life can be richer and fuller. Independence is nice, but it can be lonely and burdensome. Interdependence defines our place in the world and gives us purpose and meaning. It anchors us and connects us to others. None of us are completely independent.

Audrey Demmitt was diagnosed with Retinitis Pigmentosa at age 25 and has been legally blind since 1994.  She has used a guide dog for the last three years.  She is a retired  school nurse. Audrey lives in Peachtree City, Georgia with her husband and three adult children.  See more from Audrey at her blog: Seeing Possibilities, http://seeingpossibilities.com/


30 Jan

by Jim Holzman

Billy Barrows was a jerk! Just about everyone in the town of Haysberg, Michigan, a small farming community, shared this opinion or one very similar to it.  As a child growing up in this rural setting with a population of less than two thousand, Billy never quite fit into any socially acceptable group.  Even as a young boy he found himself at odds with most of his teachers for missed assignments or ruffian behavior at school, when he felt like attending, which was not all that often.  Billy held the opinion that school was a last option, with very little effort, he could always find something better to do.  The only obstacle in his way of thinking was finding someone to join him in his latest escapade.

School was not the only thing holding Billy back, he also had a great dislike, hatred and genuine disdain for the police. In Billy’s mind, they were always hassling him and accusing him of any and all misdeeds that took place in Haysberg.  No matter if he had anything to do with it, Billy felt that he was always on top of the likely offenders.

At the worldly age of 12, Billy spent his very first night in jail.  He was being held on suspicion of breaking into a TV repair shop and smashing upwards of 10 television sets, a charge that he vehemently denied, even though four witnesses, including the Pastor from the First Holy Baptist Church of God all gave the same story to Sheriff David Bolster of Door County. They all knew who Billy was and were familiar with his exploits around town, so none were shocked when they saw him running from Dave’s TV and Radio repair.  Billy thought he would save everybody time, so he admitted his guilt.  He was sentenced to 30 days of community service, which was unheard of for a minor, but Judge Stewart was part owner of Dave’s TV and Radio repair, a fact that he forgot to mention before the trial.  Although very few people had much pity for Billy, they felt that somehow justice didn’t equal honesty on this day.

Jim Holzman lives with retinitis pigmentosa  He is a volunteer at Second Sense in Chicago and joined the creative writing workshop.  We think he’s always been good at oral storytelling and now he’s proven he can write too.  Jim says, “I am not a writer, the writing workshop changed all that, or did it? Enjoy!”