Novel Explores Serious Questions

The Shortest Way Home

by Juliette Fay

Copyright 2013

 

Set in a suburb of Boston, this story centers around a family with Huntington’s Disease, a degenerative disorder that becomes prevalent during adulthood. Shawn, a nurse who has worked in developing countries for years, thinks he has dodged the bullet but refuses to be tested.

Feeling burned out, he comes home, hoping to re-group and then return to his work. Years earlier, after Shawn’s mother died of Huntington’s Disease, his father left Shawn and his brother and sister with their aunt and never returned.

Now, Shawn discovers that his aunt is suffering from some sort of dementia not related to Huntington’s, and his eleven-year-old nephew, Kevin, has sensory processing disorder which effects his behavior. Kevin is the son of Shawn’s brother, who died of pneumonia after Shawn went overseas.

Because his sister, a want-to-be actress, is too busy with her job as a waitress at a diner and play rehearsals, Shawn reluctantly cares for his aunt and nephew until someone else can be hired. He finds employment in a bakery run by an old friend and falls in love with Rebecca, a girl he knew in high school, who now works as a massage therapist. Then, his sister announces she’s soon heading for New York, leaving Shawn in the permanent role of caregiver. By this time, he’s conflicted between his love for Rebecca, Kevin, and his aunt and wanting to flee to Haiti, where a doctor, with whom he once worked, has opened a clinic following an earthquake.

Then, his father shows up unexpected, and after meeting his grandson, proposes a trip to Ireland with him and Shawn, to which Shawn reluctantly agrees, despite anger at his father for leaving the family years earlier. The book ends soon after they return.

I like the way this book explores the question of “to know or not to know” if you’ll be afflicted with a serious condition such as Huntington’s Disease later in life. It also focuses on the conflict between family love and loyalty and wanting to pursue one’s own dreams, especially if one’s life may be cut short by a serious illness. I can appreciate how the relationship between Shawn, raised an Irish Catholic, and God changes. There are some serious life lessons to be learned here, so I definitely recommend this book to everyone.

***

 Author Abbie Johnson Taylor

We Shall Overcome

How to Build a Better Mousetrap: Recollections and Reflections of a Family Caregiver

That’s Life: New and Selected Poems

My Ideal Partner: How I Met, Married, and Cared for the Man I Loved Despite Debilitating Odds

Click to hear an audio trailer.

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Circus in the Bedroom

Abbie-1

In light of the announcement that the Ringling Brothers circus is closing after 100 years of operation, I decided to re-blog a poem from a couple of months ago that appears in My Ideal Partner. At one point during the six years I cared for my late husband Bill, we had to purchase a mechanical lift to make it easier for home health care aides to transfer him from the bed to the commode in order to give him a shower. As you’ll note from the excerpt below, Bill didn’t like the lift, but I came up with a pretty good solution to that problem. Click on the poem’s title to hear me read it.

***

At first, Bill didn’t like the lift, because it suspended him in mid–air while he was transferred from the bed to the commode and vice versa. I almost laughed when I saw the process for the first time, because it reminded me of the song about the man on the flying trapeze. Because Bill had no vision, I could imagine how insecure he felt during the process. We kept reassuring him that he was securely fastened into the sling and wouldn’t fall, but after his first shower, he said, “I’m not using that damn lift again.”

I was flabbergasted. It had taken one month to get the lift, and another for the carpet in the bedroom to be replaced. For two months, Bill traipsed back and forth to Eventide (the nursing home) for his showers. I had to dress him every day, not just on the days when his showers at home weren’t scheduled. My own back was starting to bother me. I was ready for a break. “Please, honey, just try it for another week,” I said. “It takes some getting used to.”

“It’s not a problem,” said Bonnie. (Bill’s case worker) “Jean said you can keep getting your showers at Eventide if you don’t want to use the lift.”

I wasn’t about to settle for that. Because Bill joked about girls seeing him naked, I got an idea. “Okay, honey, just imagine you’re naked on a flying trapeze in a big circus tent, and fifty women are in that tent who paid $50 each to see you naked on that flying trapeze, and you’re going to get all that money.”

It sounded outrageous, but it worked. After another week, he seemed happy as a clam, being propelled across the room, hanging in mid air.

***

UNDER THE BIG TOP

 

Like the daring young man on the flying trapeze,

he glides through the air, smiles down on me.

I wink, say, “Bravo!”

 

We’re not in a circus but in our bedroom.

His left arm and leg useless,

a mechanical lift raises him off the bed,

propels him across the room,

lowers him to the commode, ready for the shower.

***

It’s too bad men on flying trapezes don’t bring in as much money for circuses as elephants do.

***

Author Abbie Johnson Taylor

We Shall Overcome

How to Build a Better Mousetrap: Recollections and Reflections of a Family Caregiver

That’s Life: New and Selected Poems

My Ideal Partner: How I Met, Married, and Cared for the Man I Loved Despite Debilitating Odds

Click to hear an audio trailer.

Like me on Facebook.

 

Anthology Depicts Disability Culture

Abbie-1

Dozen: The Best of Breath and Shadow

Edited by Chris Kuell

Copyright 2016

 

Breath and Shadow is an online magazine featuring poems, stories, and essays by authors with disabilities. Pieces here focus mainly on what it’s like to have a disability and how others treat a person with a disability. This anthology showcases the best work that appeared in the publication over the past twelve years.

It contains dark pieces such as Susan M. Silver’s short story, “I’ll Be Looking at the Moon,” in which the protagonist is dealing with a serious illness. In contrast, there’s Amy Krout-Horn’s essay, “Who Dresses You?” in which she talks about a humorous way she answered this narrow-minded question from a waitress.

Many pieces portray the relationship between a person with a disability and health care professionals such as Lizz Schumer’s essay, “Peace Protest,” in which she talks about convalescing after a fall and wondering if she inherited her grandfather’s brain cancer. Then there’s Chris Kuell’s short story, “The Interview,” in which a blind woman retaliates against a prospective employer who is unwilling to even consider the possibility of hiring her.

I would like to have seen fewer dark pieces. Nevertheless, I think this is a must-read for everyone, especially those in a profession that requires dealing directly with others: waitresses, doctors, nurses, cab drivers, etc. You don’t have to read the whole thing cover to cover. You could read perhaps one or two pieces a day. If you’re one of those narrow-minded persons who take a dim view of what people with disabilities can do, this anthology will force you to think outside the box. If you’re a person with a disability, you’ll read this and realize you’re not the only one. The people in this book, whether real or made-up, will speak to you of their experiences.

***

Author Abbie Johnson Taylor

We Shall Overcome

How to Build a Better Mousetrap: Recollections and Reflections of a Family Caregiver

That’s Life: New and Selected Poems

My Ideal Partner: How I Met, Married, and Cared for the Man I Loved Despite Debilitating Odds

Click to hear an audio trailer.

Like me on Facebook.

 

The Man on the Flying Trapeze

Abbie-1

Have you ever been to a circus, watched an aerialist, and wondered how they did it or thought, oh boy, I’m glad I’m not doing that. Well, believe it or not, my late husband Bill, after suffering two strokes that paralyzed his left side, flew through the air three days a week during the six years I cared for him at home. The following excerpt and poem from my new memoir explains how.

***

At first, Bill didn’t like the lift, because it suspended him in mid–air while he was transferred from the bed to the commode and vice versa. I almost laughed when I saw the process for the first time, because it reminded me of the song about the man on the flying trapeze. Because Bill had no vision, I could imagine how insecure he felt during the process. We kept reassuring him that he was securely fastened into the sling and wouldn’t fall, but after his first shower, he said, “I’m not using that damn lift again.”

I was flabbergasted. It had taken one month to get the lift, and another for the carpet in the bedroom to be replaced so it could be used. For two months, Bill traipsed back and forth to Eventide for his showers. I had to dress him every day, not just on the days when his showers at home weren’t scheduled. My own back was starting to bother me. I was ready for a break. “Please, honey, just try it for another week,” I said. “It takes some getting used to.”

“It’s not a problem,” said Bonnie, our case worker. “Jean said you can keep getting your showers at Eventide if you don’t want to use the lift.”

I wasn’t about to settle for that. Because Bill joked about girls seeing him naked, I got an idea. “Okay, honey, just imagine you’re naked on a flying trapeze in a big circus tent, and fifty women are in that tent who paid $50 each to see you naked on that flying trapeze, and you’re going to get all that money.”

It sounded outrageous, but it worked. After another week, he seemed happy as a clam, being propelled across the room, hanging in mid air.

UNDER THE BIG TOP

 

Like the daring young man on the flying trapeze,

he glides through the air, smiles down on me.

I wink, say, “Bravo!”

 

We’re not in a circus but in our bedroom.

His left arm and leg useless,

a mechanical lift raises him off the bed,

propels him across the room,

lowers him to the commode, ready for the shower.

***

Author Abbie Johnson Taylor

We Shall Overcome

How to Build a Better Mousetrap: Recollections and Reflections of a Family Caregiver

That’s Life: New and Selected Poems

My Ideal Partner: How I Met, Married, and Cared for the Man I Loved Despite Debilitating Odds

Click to hear an audio trailer.

Like me on Facebook.

 

Review: Until I Say Goodbye

Abbie-1

Until I Say Goodbye: My Year of Living with Joy

 

by Susan Spencer-Wendel

Copyright 2013.

 

“Don’t cry because it’s over. Smile because it happened.” The author uses this quote from Dr. Seuss in her bestselling memoir where she details one year of her life after being diagnosed with Lou Gehrig’s Disease. People with this condition can live for years with a ventilator and other equipment, but this journalist for The Palm Beach Post and mother of three in Florida decided to quit her job, live with joy, and not try to prolong her life.

She talks about how she spent a year traveling with family and friends: to the Yukon to see the northern lights with her best friend, a cruise on the Caribbean with her sister, a trip to Budapest, Hungary, with her husband John to re-live their years together there, a visit to her deceased birth father’s family in Cypress, a trip to New York City with her teen-aged daughter, who tried on wedding dresses for an event her mother would never witness, and other family vacations. She also explains how and why she got permanent make-up and arranged for a hut to be built in the family’s back yard.

She provides plenty of back story about her life growing up with her adoptive parents and how she met and married John and the adventures they had before settling down with their family in Florida. She discusses meeting her birth mother in California and learning about her birth father and how this affected her relationship with her adoptive mother. She describes how she wrote this book on her iPhone, since her hands were too weak to use even an iPad keyboard.

I like the way she ends the book by spelling out her children’s names as if she were typing them on her iPhone and then inserting the quote by Dr. Seuss. In this way, she leaves readers with the impression that a loved one’s death shouldn’t be a sad occasion. According to an Associated Press article, she stayed alive until September of this year. I wish my late husband had lived long enough to read this book. Maybe Susan Spencer-Wendel’s account of how she tapped out her story on her iPhone with one finger might have inspired him to write My Ideal Partner with me.

Several years ago, I suggested we write a book together, detailing his strokes and rehabilitation and my experiences with caregiving. Because this would have been tough for him, only able to type with one hand, I suggested, half in jest, that I tap the keys on the left side of the computer and he tap the ones on the right. In answer, he said, “I’d rather do this on the piano with you.”

“Never mind,” I told myself after he passed. “I’ll write my own book.” And I did.

***

Author Abbie Johnson Taylor

We Shall Overcome

How to Build a Better Mousetrap: Recollections and Reflections of a Family Caregiver

That’s Life: New and Selected Poems

My Ideal Partner: How I Met, Married, and Cared for the Man I Loved Despite Debilitating Odds

Click to hear an audio trailer.

Like me on Facebook.

 

Now What?

Abbie-1

 

 

My Profile Picture

Recently, I stepped out of the shower and was drying myself when I discovered something on my left breast. It felt like the moles on other parts of my skin the dermatologist said were nothing to worry about. I told myself I was making a mountain out of a mole, but the fact that it was on my left breast was worrisome.

I hurriedly dressed, called the women’s clinic, and was able to get an appointment for later that morning. When I called the paratransit service to arrange a ride, the dispatcher said, “We’ll get you there, but you’ll have to be patient getting home.” As I put my cell phone in my pocket, I thought that if I wasn’t diagnosed with breast cancer, I would have all the time in the world. I then realized that the nurse-practitioner at the clinic wouldn’t be able to tell if the spot was cancer by looking at it. A biopsy would need to be scheduled, and that would mean waiting and wondering.

I threw myself into my work, eating half a bagel and banana at my desk while checking email. I usually did this every morning to save time. I then started work on an upcoming blog post. Fifteen minutes before my scheduled pick-up time, I was ready. The bus was late.

It was about ten minutes before my scheduled appointment, and the driver said, “I’ve got a couple people to pick up before I can get you there. Sorry.”

Oh great, I thought, and I removed my cell phone from my pocket. “Just tell them it’s our fault. We had a scheduling problem.”

The scheduling problem was my fault. When I called the clinic earlier, there was another opening for the following day, but I didn’t want to wait that long. The paratransit service usually preferred to book rides at least a day in advance, but I’d convinced the dispatcher it was urgent.

When I called the clinic a second time from the bus and explained the situation, the young woman who answered the phone said, “When do you think you’ll be here?”

“I don’t know,” I answered in exasperation. “I’ll be there when I can. Just tell the nurse-practitioner I’m coming.”

As the bus bumped along, I thought my life was going great until now. My new memoir was out, and a couple of promotion events were scheduled. Why did this have to happen now?

I remembered the time when my late husband Bill suffered his first stroke. We’d been married for three months and were happy, then boom! Was this thing on my breast another bomb about to drop? Why?

I alternated between these thoughts and telling myself I was making a mountain out of a mole. I thought of my editor, Leonore Dvorkin, who fought her own battle with breast cancer years earlier and lived to write a memoir about it. While she was recovering from surgery, her husband David took care of her. I no longer had a husband. If I needed a lump or the whole breast removed, I would have to depend on the kindness of friends. My brother would probably want to fly in from Florida, but with a wife and five kids and working two jobs to make ends meet, he couldn’t afford it.

When we finally arrived at the medical complex housing the women’s clinic, I was surprised when my talking watch told me it was ten-forty-five, the actual time of the appointment. My white cane swinging in front of me, I dashed to the elevator and found the Braille-labeled button for the second floor.

“It’s probably nothing,” I told Tracy, the nurse-practitioner moments later. “It could just be a mole, but I thought I should have it checked out.”

“Absolutely,” she said. I placed my index finger on the spot, and she examined it. “It looks like just a clogged pore.”

“You mean it’s nothing to worry about?”

“Not at all,” she answered. “It should clear up soon, but if it gets bigger and starts hurting, let us know.”

After putting my shirt back on and before leaving the exam room, I called the paratransit service to request a ride home, prepared to be patient. As I left the clinic and made my way down the deserted hall toward the elevator, I was relieved and elated. “Yes, I don’t have breast cancer. Life can go on,” I said, thankful no one was there to hear me.

On the ground floor, I stood just inside the entrance. To my surprise, a bus pulled up a few minutes later. This was my lucky day.

Perhaps I over-react in such situations, but it’s only because I would hate to depend on others for care if I needed it. Bill wanted to be able to take care of me, but after his strokes, that was impossible. You can read our story in My Ideal Partner: How I Met, Married, and Cared for the Man I Loved Despite Debilitating Odds.

***

 

Author Abbie Johnson Taylor

We Shall Overcome

How to Build a Better Mousetrap: Recollections and Reflections of a Family Caregiver

That’s Life: New and Selected Poems

My Ideal Partner: How I Met, Married, and Cared for the Man I Loved Despite Debilitating Odds

Click to hear an audio trailer.

Like me on Facebook.