A New Me

Abbie-1

Recently while my homemaker from the local senior center was cleaning, she found plaster falling from the ceiling near my kitchen door. Apparently, it had gotten wet. This could only mean one thing. My roof was leaking again.

Why didn’t I see this? Well, with my limited vision, I don’t see things unless they’re close to me. Although I walk by my kitchen door every day, it never occurred to me to look up.

When my homemaker pointed out the offending area, I saw it, and it looked awful. I could just reach it by standing on tiptoe, and when my finger touched the spot, more flecks of plaster went flying. Yuck!

My roof was replaced in 2008 when I bought the house, and I was assured it would last at least thirty years. It wasn’t even ten years old. I called the same roofer, and after taking a look, he reported that the material he used was only supposed to last ten years, and it was aging. Like me, I thought.

As long as I’m getting part of my roof replaced, why not have my me replaced? Maybe I could get a younger me who can see, a me who doesn’t recoil at the prospect of dealing with contractors and insurance bureaucrats, a me who doesn’t hate being around any kind of construction, a me who can drive and not rely on others to get me everywhere, especially in winter, a me with more confidence when walking in treacherous conditions and less fear of falling on ice, braking bones, and ending up in a nursing home.

When I suggested as much to a friend though, she pointed out that with better eyesight, I might not like the way the world looks. It also occurred to me that with no disability, I wouldn’t earn income from social security. To make car payments and support my writing habit, I’d have to go back to my forty-hour-a-week job conducting activities with nursing home residents who fell on ice and broke bones.

Although the other features of a new me would be nice, this investment will have to wait until I get the roof fixed. Apparently, although my homeowner’s insurance will cover fixing the plaster on my ceiling, it won’t cover the replacement of part of my roof unless the damage was a result of a storm. Hmm, maybe with a better me, I could get up on the roof and make it look like storm damage.

***

Note: After I wrote the above, the insurance adjuster came and said that a piece has fallen off the roof, so it’s definitely storm damage. Whether it’s the type of storm damage my policy covers remains to be seen.

***

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.

 

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.

 

How I Cared for the Man I Loved Despite Debilitating Odds

Abbie-1

As Han Solo in Star Wars once said, “Sometimes I even amaze myself.” This is true of me as well, although I’m not a spaceship pilot who rescued a princess from an ominous Death Star.

For six years, I cared for my late husband Bill, who was totally blind and partially paralyzed. He was nineteen years older than me. When we met, I was in my forties, and he was in his sixties. When we married in September of 2005, he was walking, albeit with a cane. Three months later, he suffered the first of two strokes that confined him to a wheelchair for the rest of his life. I’m visually impaired, so how did I bathe, dress, and feed him and transfer him from bed, to wheelchair, to recliner, to commode?

I doubt it would have been possible without the help and support of Laura Andrews, the occupational therapist at Sheridan Manor, where Bill spent nine months after his first stroke and another couple of months after his second. She didn’t say, “I don’t know how you can do this if you can’t see.” Instead, her mantra was “Let’s see if we can figure it out.”

For two months before Bill came home in September of 2006, she worked with us every day on dressing and transferring him from the bed to the wheelchair. Because of my limited vision, figuring out how to do these things was a challenge, but she was patient. We tried one technique after another until we finally found ways that worked.

She suggested to a local carpenter ways he could modify our house for wheelchair accessibility. When that was done, she came home with us to work on transferring Bill from the wheelchair to the recliner and commode and vise versa as well as between the bed and wheelchair. She also gave advice on toileting and other personal care issues. When Bill suffered his second stroke in 2007, we did it all again, but this time, Bill was only in the nursing home for a couple of months. I must admit there were times when Bill landed on the floor, but fortunately, he was never seriously hurt, and no one questioned my ability.

My caregiving feat would also not have been possible without the services provided by the Sheridan Senior Center’s Help at Home program. An aide came to the house three days a week to give Bill showers because this would have been too difficult for me. Not only was I grateful for the extra hands, I also appreciated having another set of good eyes around to notice lesions, bruises, or other medical issues with Bill about which I might not have known due to my lack of vision.

Day Break, the senior center’s adult day care facility, was also helpful. While I attended water exercise classes and a weekly poetry class, I didn’t have to worry about him being home alone. However, two weeks after Bill started attending the program, he said to me one morning, “I don’t want to go there anymore. It’s a baby-sitting service.”

I was flabbergasted. Yes, Day Break is a place where caregivers can leave their loved ones in a safe, friendly environment. They can watch television, play cards, and do just about anything else they can do at home, or they can participate in group activities. Having been a social butterfly, at least before the strokes, Bill enjoyed visiting with others and playing cards, so I thought he would have a great time there.

However, he assured me he could manage at home alone for at least a couple of hours, although he couldn’t get to the bathroom by himself, not to mention get out of the house in case of fire. He wore a LifeLink necklace which allowed him to call for help in an emergency. Although I was nervous about leaving him home alone, he turned out to be right. When I came home, I often found him with wet pants, but that was the only casualty. I eventually got a cell phone so he could call me when I was away from home. This gave me even more peace of mind.

Big Goose Transit was also a big help. Their friendly drivers came to our house and drove Bill and me to Day Break, physical therapy, doctor’s appointments, and anywhere else we needed to go. Because of my limited vision, I had difficulty attaching pedals to Bill’s wheelchair so he, in it, could be loaded into their vehicles more easily. Drivers were only too happy to accomplish this task, since it only took someone with good eyes about a minute. We eventually bought a wheelchair accessible van so my father and others could drive us on weekends, evenings, and holidays when Big Goose Transit wasn’t operating. You can read more about how I amazed myself in my new memoir.

Being a caregiver can be a challenge, even with good eyes. If not for the support of others, Bill would probably have spent the last years of his life at Sheridan Manor. He might not have lived as long. Despite his paralysis and the difficulty I had caring for him, we spent six happy years together. That’s amazing.

***

Note: a portion of the above article appears in the November 5th issue of The Sheridan Press, my hometown newspaper.

***

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.

 

Honor the White Cane

Abbie-1

I was inspired to write this post by an article in Consumer Vision, an online publication designed by and for blind and visually impaired people. On July 6th, 1963, the National Federation of the Blind called on all state governors to proclaim October 15th as White Cane Safety Day. On October 6th, 1964, a Congress joint resolution was signed, authorizing the President of the United States to proclaim October 15th as White Cane Safety Day. Within hours after this legislation was passed, Linden B. Johnson was the first United States President to recognize the white cane as a symbol of independence for blind and visually impaired people. Click here to learn more about White Cane Safety Day.

Now, all states have laws requiring drivers to stop so pedestrians with white canes can cross streets safely. However, these laws are hard to enforce. Years ago when a police officer visited a support group for the visually impaired I once facilitated, he said that if we got offending drivers’ license plates, they could be ticketed. My nose needs to be against the car’s bumper in order to read the license plate. If the car’s moving, forget it.

A year or so later while walking home, I was approached by a policeman on a bicycle who asked me if drivers were stopping to let me cross streets with my white cane. When I told him what the other officer said, he responded that he would bring it up at roll call. This inspired my romance novel, We Shall Overcome, but I digress.

The next time you’re driving down the street, and you see someone with a white cane attempting to cross, please stop, even if you’re already late for work. Remember that some of us with white canes don’t see oncoming traffic. Also, please share this with other drivers, using one or more of the options below. Let’s make our streets safe for people who are blind or visually impaired.

October 15th is also National Poetry Day so here’s a poem I wrote several years ago about my white cane. It appears in my collection, That’s Life. Click on the title to hear me read it.

***

CONCEALED CANE

 

When not in use,

it’s folded, tucked under my arm

or stuffed in a back pack.

When I step outside,

I pull free the nylon holding it together.

It unfolds, clicks into place.

I walk away, ready to face adversity.

***

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.