Tag Archives: spasmodic dysphonia

Revealed: I Loved Dr. Tom Reynolds!

The presents are all given out; the returns are back in the stores; the roast beef is eaten, and the cranberry sauce at the back of the refrigerator has been discovered and poured down the disposal. The renovation of Tom’s photography studio is well underway— we’ve chosen flooring, colors, furniture, rugs, placement of outlets, sample wedding photos for the walls. The workmen have ripped out walls, torn up carpet and strung Cat6 (whatever that is) all over the place. Now it is time to get back to writing—to get creative again, to get to work.

Getting back into a project after many days/weeks is intimidating. I have to reread and rethink—but it is also invigorating. I know from experience that I will see my characters in new ways and they may lead me in new directions. Those are the times when, if you let them, the characters write the story. The very first short story I ever wrote, as an adult, was like that. I had left my career behind me—the result of many factors—and was in the midst of a messy civil suit after having been forcefully assaulted by a co-worker. I had started my own advertising company and was more than busy enough serving clients and seeking out new ones. I had no intention of writing a story, but I woke up one night with the opening words to the story in my head.

Setting everything else aside, I sat at my computer and typed out the story of an incident in my childhood—an incident I hadn’t thought about in 35 years. It wasn’t on my mind—not my conscious mind, at least—and it had nothing to do with anything that was going on in my life at the time. But it insisted on being written. Until I was midway into it, I didn’t even know what it was going to be about. The words formed on the page, before they formed in my brain. Honestly, it happens that way sometimes—not often, but on rare and lovely occasions.

The short story, called “Ramar and the Pink Clouds,” is not technically my best work, and it has never been published. But, it is one of my personal favorites—and it won Honorable Mention in the Writer’s Digest Annual Fiction Contest. Scroll down to read it—I hope you enjoy it.

Peace and Love,




Noëlle Wall

I leap from my bed, Ramar of the Jungle plunging down a ravine.  You know Ramar.  He’s the white doctor who lives in Africa and goes around in a bush jacket and pith helmet curing epidemics and saving native tribes.  He is on TV every afternoon and I love Ramar.  In some episodes there are evil white men after ivory or diamonds, but they usually fall to the dangers of the jungle, especially quicksand.  In fact, someone almost always ends up in quicksand on Ramar.

“Daddy, Angel won’t tie her shoes,” my sister yells.  I can tie my shoes, I just don’t want to.  I imagine my feet are made of glue.  Not rubber cement or the thick white paste that Mrs. Dawson dishes out of a huge jar that-looks-like-a-mayonnaise-jar-only-bigger.  More like the golden liquid that coats the insides of its glass bottle—and barely squeezes through a slit in the orange rubber stopper, when you smoosh it against the paper.

“Come on Angel, let’s go.”  My father pulls the loops of my shoelaces tight and we pile into our Dodge station wagon, sea green with a white top.  I’m wearing my red plaid with the big collar and the white cotton gloves that I wear to dancing school.  After all this is a special occasion.

Dr. Tom Reynolds, played by Jon Hall and better known as Ramar of the Jungle.
Dr. Tom Reynolds, played by Jon Hall and better known as Ramar of the Jungle.

We are going to visit my mother who is having a nervous breakdown at Westport Sanitarium.  No visitors before two weeks, but I got two letters from her, which were both censored, meaning someone read them to make sure she didn’t say anything crazy.  My mother is not crazy, but she is tired and needs a rest.  She wrote that all the rooms were padded and there were little green men with antennae running around the halls, but she was only kidding.

Westport Sanitarium is a very fancy place, my father tells us.  And very expensive, which just proves how much he loves her to send her to the best.  We drive between pillars in a long stone wall, which my father says is a masterpiece of craftsmanship.  You can tell because the rocks have each been selected to fit together and there is no cement holding them.  The sanitarium looks more like a mansion than a hospital.  There are no bars on the windows.

Inside we walk down a hallway to a large airy room with sofas and chairs and some card tables set up.  It looks like our club on bridge day.  There are people sitting around and my mother is in here.  Some of the people have on bathrobes, but she is wearing white pedal pushers with red and blue flowers and a blouse with a round collar.  I slip off the gloves and tuck them in my pocketbook.

“Look at you both, you are so pretty!”  After we hug her, I sit next to her holding her hand and looking around the room for someone famous.  A lot of famous people live in Westport, and nervous breakdowns are very fashionable right now, my mother says.  The room smells musty like modeling clay.  I imagine our hands are made of clay which has been molded together into one big hand, and baked to make it permanent.

She asks if we would like to take a walk outside.  “Can we?  Will they let you?”  “Oh yes.”  She reminds us that she is here voluntarily.  The sun makes me tired as we walk across the lawn.  Still, I keep my eyes peeled for quicksand.

Later we go up to her room.  There are two crayon pictures that I sent her propped up on her nightstand.  On one I drew dozens of the little green men that she wrote about.  Everybody laughs when they see it, she says.

I notice the other bed.  “Where’s Mrs. Benchley?” I ask.  Mrs. Benchley is my mother’s roommate.  In her letters my mother said she was very nice and liked to paint trees.  She was there for depression and had nightmares and screamed at night.  My mother hesitates.  “She had shock treatments yesterday and hasn’t come back yet.”  Shock treatments.  Don’t touch the socket, you might get a shock.  They attach wires to your head.  Don’t touch the light switch when your hands are wet, you might get electrocuted.   Then they shoot electricity into your brain to change your personality and stop you from wanting to scream.  Don’t go out in a storm, you might be struck by lightning and burn up.  My mother won’t have to have shock treatments.  They can’t make her, and she says if she’s scared, she’s going to scream if she wants to and no one is going to stop her.

The windows have blocks of wood nailed to them so they only open three inches.

The next two weeks are like a dentist appointment.  You know it has to end, so you can stand it.  I go to the neighbor’s after school and I’m very polite.  No thank you, you can have the last cookie.  My mother gets cookies from Hans Greiner’s, Linzer tarts with raspberry jam and powdered sugar that gets all over my face.  The neighbors have popcorn one day, which I’m not allowed to eat at home in case I choke.  I savor the salty kernals.  Suck salty grease from my fingers.

Westport Sanitarium before it was demolished in the 1970's and the site turned into a park.
Westport Sanitarium before it was demolished in the 1970’s and the site turned into a park.

My father makes us take a bath together.   Morgan says she is too old to take baths with me, but she gets in the tub.  The water is scalding hot.  My mother always makes it shallow so we don’t drown, but this is nice and deep and, once we get used to it, it’s a lot more fun.  I put in all my bath toys, which makes my sister mad.  Daddy hollers through the door to remember to wash.  One night he cooks French toast and bacon for dinner.  Morgan is mad that we’re having breakfast for dinner, and I act mad too, but I really think it’s a treat.  Most of the time, Daddy sits in his red leather chair and reads.

She is coming home tomorrow.  After Daddy tucks us in, I lie awake, thinking about Ramar of the Jungle.  I know I am too young, but I intend to marry him.  This poses problems, I think, but I believe old Ramar will wait for me.  Love will win out.

When Mommy tucks us in, she holds my hands while I say my prayers.  Then I sing a song.  Usually it’s a little thanksgiving song I learned in Sunday school, but on special occasions I sing a lullaby. Every night I ask her, “Which song should I sing?”  Usually, on ordinary days she says “For Home and Food,” but every once in a while she surprises me and says “Let’s sing Hush My Babe.”

“But it’s not a holiday,” I remind her.

“What, you never heard of the High Festival of Elves?”

Suddenly I am in the jungle with Ramar.  We have pet monkeys and lions that eat out of our hands.  Ramar rushes out to save the ancient tombs.  But the evil hunter is after me.  He chases me through the jungle, into the brush that hides the quicksand.  Huge mud fingers rise up to grab me and suck me in.  No problem.  I know all the ways to escape: don’t fight it, grab onto a stick, hook a tree branch with a rope.  Nothing works, but Ramar will come.  I’m sinking fast now.  The quicksand is up to my chin, my mouth, my nose.  Ramar, where are you?  Ramar!

I wake up and realize it’s just a nightmare.  I think about screaming but remember the shock treatments and decide not to.  I look over at Morgan but she’s asleep.  We have twin beds from Ethan Allen, solid maple, four posters with acorns on top.  I imagine my bed is a magic ship that keeps me safe as long as I don’t touch the water.  Giant waves are tossing the ship from side to side.  Still I can make it to the stern by crawling along the deck on my stomach.  Stretching over the end, I can just reach my side of the twin dresser.  The top drawers are our junk drawers and we can keep anything we want in there.  I slide mine open and rummage around in the dark.  I find a brass case that looks like a lipstick tube, but when you take off the top and swivel the base, there’s a brush inside for putting on powder.  One hundred percent camel hair.  I rub the brush across my cheeks.  It’s soft but it doesn’t tickle.

My eyes are used to the dark and I check the white ceiling for spiders.  Three of the bedroom walls are painted pale yellow but the fourth has brown wallpaper with little yellow roses all over it.  There’s a window with cafe curtains in the same pattern.  Morgan has the window on her side but I have the wallpaper.  I pick my nose and wipe it on the center of one of the roses.  You can’t even see it unless you know it’s there.

“Hey Morgan.”  Stage whisper.  “Are you awake?”

“No, what do you want?”

“Can I get in bed with you?”

“No, your feet are dirty, go back to sleep.”

“Morgan, listen please.”


“ Mommy tried to kill herself.”

“I know, now shut up.”

“But I heard them.  I was awake.”

She sits up.  “What happened?”

Crying now.  “They were fighting like they always do, then he chased her down the hall and she locked herself in the bathroom and took pills, a whole bottle.”

She comes over to my bed and puts her arms around me.

“I didn’t know what to do.  What should I have done?” I say.

“I don’t know.  Nothing.”

“She said no one cared if she lived or died, but I care.”

“She was just saying that Angel.”

“But I didn’t tell her.  I didn’t do anything.  I just let them put her in the ambulance and take her away.”

She climbs into bed next to me and stays there until I fall asleep.

My mother is coming home in the morning, but we have to go to school anyway.  When the bell finally rings, I take the shortcut home without waiting for the other kids, cutting across the playground and behind Russo’s newstand where we get tootsie pops and orange creamscicles.  Today I zip right by, fly up the hill and around the corner.  I can see our house now, way at the end.  Yellow ranch, two car garage and a big picture window.  She’ll be happy to see me.  Past the Borchs, the Knapps and the Bensons.  There are the Staffordshire dogs in the window, where they sit on the maple drop-leaf table. I run across the grass and up the walk, but when I get there, the door is locked.  I ring the bell and pound the brass knocker over and over, but she doesn’t answer.  She’s not around back or at the neighbor’s either.  I don’t know where else to look, so I sit on the porch steps. I listen to my heart and count the beats. Finally, I spot her walking up the street, a bag of groceries in her arms.

“Where were you?  Why weren’t you here?”  She had walked all the way to school especially to meet me, but I took a different route, missed her.

“Don’t you know I don’t go that way anymore?”  I want to turn back time, come home the regular way, enjoy the surprise. “Go back,” I cry, “go back.” Clenching my fists, I cry until I can’t stop sobbing, while she holds me tight.

“I’m sorry, so sorry.”  She holds up my hands, curled into tight balls.

“Look, your knuckles are like shiny pearls.”  We both laugh, but even I know it’s not funny.

After that, when I get home from school she is always there.  She pours me a glass of milk and has cookies on the table.  Mallomars that you have to peel the chocolate off of with your tongue, then suck out all the marshmallow and save the chocolate coated cookie part for last.  Or sugar wafers, delicate layers to split apart and scrape your teeth across to get the icing.  And Greiner’s Linzer tarts.  Then she sits sideways in my father’s red leather chair with her legs dangling over the arm and me on the floor beside her, while I show her my papers.  I hardly ever have time to watch Ramar anymore, though I still think about him. I’ll go back to him someday, I think.  One day I ask her if she’s still tired.

“No, I’m floating on a pink cloud now,” she tells me.  “As long as I have my pink cloud I’m fine.”

So I make her tiny pillows of cloth scraps, stapled together over cotton and colored pink with a crayon.  I thread a needle and run it through each puff so it hangs in the air.  She is delighted with her pink clouds and they become our secret.  I tell her I will make pink clouds for her, whenever she needs them, forever.

The End

*  *  *  *  *

NO PAIN; NO GAIN–Serving Up Food for Thought

Everyone tells me I’m a really good cook. A gourmet cook. Friends, family, my book group—all rave about the dinners and desserts I prepare for them. Dinners like lobster paella or herb marinated Greek lamb with yogurt mint sauce, and desserts such as Valrhona chocolate mousse with fresh berry coulis, crème fraiche and homemade hazelnut praline crisp. When company is coming, I sometimes spend two or three days in the kitchen, planning, prepping, timing. And often, I’m proud of the result. I’ve been told I should start a restaurant.

But I do not think I am a good cook. In fact, with every meal, I am terrified that I won’t be able to pull it off.

To me, a great cook is someone who scavenges through the refrigerator—or the farmers market— and throws together ordinary ingredients to make something fabulous. Someone who intuitively knows what will work, someone who has such flair that they can create a memorable meal in an hour. Someone who chops and stirs and whisks and sautes while also talking up guests and pouring a new wine she has discovered. In other words, a cook with talent.

Marinated Greek Lamb with Yogurt Mint Sauce
Marinated Greek Lamb with Yogurt Mint Sauce

What I have is the willingness to spend hours scouring cookbooks to find a recipe that I’m confident I can make, then days prepping and preparing, so I’m not caught off guard on the day of. Yes, my plate is beautifully presented with a garnish of homemade chutney—but only because I spent three hours making it two nights ago. And only because I followed the recipe, step-by-step. If the meal is great, it is because I was willing to put in the work.

Writing is like that. I know there are talented people out there who can whip off bestsellers at the rate of one a year. And there are creative writers whose sentences flow so beautifully, you want to read them over and over to bask in their loveliness. I, personally, hate those writers. For most of us, writing is just a lot of hard work. Yes, there are those glorious moments when my character takes off and writes herself, when I don’t know how the words appeared on the page. Bravo! That’s what makes it all worthwhile. But most of the time, my writing gets on the page because I forced myself to plan and outline and research and revise. I am driven by the same terror that drives my cooking—terror that I can’t do it, so, in order to do it well, I have to put in the work.

Once, my husband Tom suggested that I make something “easy” for our company meal. Relax, he said; keep it casual (I think he was hoping it would relieve him of sous chef duties…). So I bought taco kits, chopped a few onions and tomatoes, and put out bowls of the ingredients for guests to make their own. I can’t say how it went over—our friends may have loved it—but I was too busy feeling humiliated to notice.

So ultimately it’s about what works for me. Do I always feel like cooking for company? No, but if I know they are coming, I get the cookbooks out and start making lists. Do I always feel like writing? Absolutely not. In fact, I’d almost always rather do anything else, from playing solitaire to folding the laundry. Writing is terrifying. What if I can’t pull it off? But I’ve learned, just as with cooking, the more time that goes into it, the more confident I can be of the result.

Are You Crying? Do You Need Help?

I had a cold. Then laryngitis. Then my whole world changed. Lest that sound like hyperbole, let me explain. Once I was a single mother of four young children. They were the smartest, most beautiful children on the planet. They deserved great schools, beautiful things, limitless opportunities, a mom who was always there after school with cookies and milk. Instead they got poverty and…well, that’s another blog post entirely—let’s just say not the sparkling life I had envisioned for us. We were poor, really poor, but through sheer determination and hard work, I managed to work my way up in local television to a dream job. I remarried; we bought a house, my kids had clothes, a computer; I went to their plays and games. Then one day I lost my voice. Just like that. It broke, it dropped out, it cackled, it caught in my throat.

My professional position was twofold: Director of Operations and Director of Marketing and Public Relations. In those roles, I led meetings, made presentations to corporate, served on community boards, interacted with the press and sold clients on ad campaigns. I led a creative team to produce local programming, commercials and promos. My job was communications, and suddenly I couldn’t communicate. At department head meetings, the other managers lowered their heads and looked away when I spoke. My role in presentations was reduced and then eliminated. My boss spoke sharply to me, critical of my affliction, as though I should be doing more to fix it. I had, of course been to doctors, had tests, spent months in voice therapy—all to no avail.

I have a vocal cord condition called spasmodic dysphonia. It is a neurological movement disorder, in the family of such conditions as Parkinson’s Disease or Huntington’s Disease. Though it affects the vocal cords, they are not the cause. Neither is it caused by stress, diet, or failure to embrace Yoga. It is the failure of the correct brain signals to reach the vocal cords that causes them to go into spasm and either close up, not allowing through the air necessary to form words, or stay open, so that sounds come out breathy and unformed. The voice loses volume, articulation and expression. People with spasmodic dysphonia have to squeeze their voice out; we push and struggle to speak. It comes out sounding like anything from a whisper to a squeek. At present, it is not curable.

For some reason, spasmodic dysphonia is at its worst when speaking on the phone. I remember the time, long after I had left the TV station and joined my husband in his photography business, when I answered the phone and was asked if I was all right and did I need help. Taken aback at first, I soon realized that my voice sounded as though I was crying or terrified or both. I reassured the potential client that I simply had “lost my voice.” After that, I stopped answering the phone without first checking caller ID.

People with SD tend to create circles of safety around them. Their worlds become smaller as they stop using the phone and communicate with only a select few. Many depend on spouses and family members for making reservations, dealing with sales people and even communicating with friends. Email was a blessing for me, but voice activation is a nightmare—and Siri is my declared enemy. I hate her. The Bluetooth idiot in my car is no better. My small grandchildren break into peals of laughter when I try to activate a phone number. “Call Chris,” I will say, and she will respond with, “Calling Ginny.” Sometimes the kids try to help, shouting out, “No, call KEVIN, call EMMA, call GRANDPA,” totally confusing the Bluetooth idiot, and we all laugh, but I think, what if I had to call 9-1-1?

Botox injection for SD
Botox injection for SD

No one knows exactly what causes SD—in some cases, it may stem from an injury, in others it may simply be a trick of our DNA. The most common treatment is botox injections. With some trepidation, I gave it a try. Patients are injected through the throat and into the vocal folds. The botox relaxes the vocal cord muscles, much like it relaxes the lines on your face. The idea is to prevent the spasms that make speech so difficult. When the shot proves successful, the result lasts on a curve of two- three months, during which the voice gets better, better, nearly normal, not as good, back to spasms. My first time, either the needle missed, or the muscles didn’t respond—nothing changed; the second time, the result was a relatively normal speaking voice for a short period of time; the third time, my voice disappeared entirely for several weeks—and I mean disappeared, i.e. no sound at all. Not to mention difficulty swallowing. My great fear was no longer inability to call 9-1-1—it was choking to death!

I like to think that every malady has a saving grace, and mine has several. For one, it is not life-threatening. And, I can still see, hear, write, read and walk. But the greatest grace has been my grandchildren. They don’t care. They laugh at me when they think my voice is funny and protect my feelings at critical times. My fourteen-year-old still wants me to sing to her at bedtime, though I can barely cackle out a note, but my five-year-old covers her ears when I sing a song in the car. “No, stop,” she shouts. “Awful!” My seven-year old says simply, “Grandma, I love your voice.”

In Secrets of Bari, Amelia Allegra develops spasmodic dysphonia just as her carefully constructed world falls apart. She has dealt with physical disability as long as she can remember, but, in some ways, the less visible malfunction of her voice is a more critical loss. While writing Amy’s story, it was important to me that my readers understand the impact this new setback had on her sense of self in relation to the speaking world around her.