Peace Be With You: A Caregiver’s Worry

About My Poems

Saturday, January 14, 2012

A Caregiver’s Worry

Who will take care of
my loved one who has MS
if I am not there?

It might not be death.
Serious illness can end
a caregiver's role.

It is a hard job.
Who will see the benefits
and take up the slack?

6 comments:

Have Myelin? said...: So true. The train runs both ways, doesn't it?; January 14, 2012 9:30 AM
Karen said...: It's a worry for both. Not something I want to think about. If hubbers and I are ever in that situation, I guess an assisted living place would be the best.; January 14, 2012 11:33 AM
Muffie said...: I live with these thoughts constantly. I could no longer care for my mother, and she's now in long-term care. My husband is fairly healthy, but as I get weaker, he gets older. As Karen mentioned, assisted living seems like a real probability anymore, but the thought frightens me. I'm assuming your poem is written from another's point of view?
Peace,
Muff; January 14, 2012 12:03 PM
Gail said...: oh my, I shudder to think...........

Love to all
Gail
peace.....; January 14, 2012 12:20 PM
Peace Be With You said...: Sherry, Karen, Muff, and Gail,

"...as I get weaker, he gets older." Therein lies the rub. This poem was meant to convey the sentiments of any aging caregiver; my husband, in particular. He has been my caregiver, but he is also fourteen years older than I and in delicate health. We both resist the idea of moving into assisted care, but that may be the inevitable outcome. So much for the golden years, eh? In my case, I am not even normal retirement age yet.

Judy; January 14, 2012 10:40 PM
Karen said...: As my mom aged and declined in health, she said..."The golden years, more like the tarnished ones".; January 15, 2012 12:24 AM

Thank You to My Readers

Many of you check in daily. Some have called my poems inspiring, which has taught me a new meaning for the word. I had always thought being inspiring meant making someone feel enthusiastic and confident. Instead, in referring to my poems, you mention the word honesty. You feel inspired by my honesty about MS. I seem to express truths you welcome hearing and which help you. I am simply honored that my words could do such a thing. You have transformed what originally was a self-directed activity into one which benefits others. How often does one have the opportunity to do that? Truly I am blessed by your presence in my life. This motivates me to keep writing these poems and to keep expressing with honesty my feelings and thoughts. My heartfelt thanks to you for sharing my journey.

How This Blog Got Its Peace Name

The mystery solved
I now know the reason why
this blog got its name.

My dad liked to say,
“The peace of God be with you.”
I had forgotten.

The phrase came to me.
I used it unconsciously.
Then friends let me know.

There is only so much one can say in 51 syllables so I was not able to add the following. My late father’s church is doing an oral history of his life. As I read the results of the interviews, I was struck by how often people remembered that his favorite expression was “The peace of God be with you.” I had forgotten that and have been wondering why on earth I named my blog as I did. I even thought of changing it more than once. Now I realize I was subsconsciously remembering my father’s expression. So the blog name remains.

How I Get Through This

There are times when I look up and say, how did this happen to me? Asking why usually doesn’t get me anywhere, except depression. My present reality really does not allow me to indulge in such questions. I have to cope instead with adjusting to my currently diminished physical capacity and the appalling possibility, nay, probability that this can get much, much worse. How do I then maintain my spirit? Who is the Me who remains when so much of what defined me has been stripped away? Can I transmute this reality into something with meaning and value? Sometimes I find little victories that sustain me. Sometimes I find someone like Holocaust survivor Viktor Frankl to help me navigate these questions. At other times I feel that I am in a boat without a paddle in a raging sea. Mostly I am a work in progress living an unexpected life where most of the rules I thought applied don’t and I am left to rely on whatever inner strength, character, and personal faith I can call on to get me through. But sometimes even inner strength, character, and personal faith do not seem like they are enough. This is just tough. Or theater of the absurd.

My Manifesto

The following poem generated the most comments and blog links of any of the poems I have written. My response to all the comments is provided below. I now call it My Manifesto.

Here is a pet peeve.
When people say they are glad
that they got MS.

They are pleased because
it made them better persons.
My blood just curdles.

Are you kidding me?
Was there no better method
to accomplish growth?

Judging by the number of comments, this poem obviously resonated, and I can understand why. I also want to share what triggered my writing it. I had watched a recently diagnosed person stand up in front of an audience and say, “I am glad I got MS. I am a much better person as a result.”

He is not the only MSer I have heard say that. What I have discovered is that those who say such a thing tend to fall into two camps. They are either recently diagnosed and/or they are not suffering from loss of mobility or some other dastardly manifestation of this scourge of a disease.

My position on this? As I said in one of my poems,

I can be grateful
for gifts this challenge gave me
and still hate MS.

I have no doubt that I am a more compassionate, generous, less shallow person now than I was before coming down with MS. Would I still have reached this more enlightened place as a result of normal maturation? I don’t know and can’t ever know. I only have the life I have. But I will NEVER say that I am glad I have MS. On the contrary, as I said in one of my other poems,

Full recovery.
That will be my intention
until my last breath.

Whatever accommodation I achieve with this disease will always be one in which I am, only out of necessity, cohabiting with an enemy. If calling it an enemy is too strong, then I can at least say that MS will never be my friend. I am sure psychologists would have a field day with my position. With my own therapist, we’ve declared a truce in which I say I acknowledge, instead of accept, that I have MS. I will never accept, though, that this is what my life should be like. As I said in another of my poems,

I will not allow
MS to appear normal.
Absolutely not.

And I am glad I still have some fight left in me so I can feel this way. There are enough days when I feel quite defeated by this disease. Then another day comes when a glimmer of light helps me remember the Judy I want to be and not just the MS-Judy, and I go on to fight again. That’s when I can say,

I don’t want to hear
the odds are impossible.
I aim to beat them.

And, knowing that days will come when I will again feel oppressed by the enormous challenge I face, I keep these poems on display so that I can remember who I want to be at my best.

As for finding the peace that is the title of this blog, I can only say that, variable though it might be, I find peace in knowing that I can control my attitude about my life.

Thanks for letting me share my thoughts with you. You make this journey so much easier because of it.

To read all the comments, go to: http://lapazconvos.blogspot.com/2011/01/pet-peeve.html

Sunshine Air - A Short Story

Hope got up that morning and breathed in the sunshine air. That’s what she called it—sunshine air, that quality of air which shines brightly and thrills with promise, of shadows remaining distant, of strength staying resolute. So she breathed in the sunshine air and thought, Oh, my, this is the day that the Lord has made. Let me rejoice.

She was heading to the kitchen to prepare her morning toast when she tripped over a—what did she trip over? She looked down, but the tile floor was as smooth as ever, no stray objects around her that she could see. Must have been daydreaming already, she thought. I’d better get my act together so I can go out and enjoy this sunshine air.

The first thing she did when she walked into her blue-and-white kitchen—hey, weren’t those hand-painted, blue willow plates on the walls just great?—was to pull open the French doors to the patio. She stood at the threshold, her hands propped high above her on either side of the door jamb, and breathed in deeply. Jasmine, even a hint of morning dew, filled her lungs. Promise, that’s what this day reminds me of, she thought. Of how a day is always the beginning of the rest of your life.

She walked back into her kitchen, pulled out two slices of oatmeal bran bread and the jar of mango preserves bought the day before at Morning Glory Farms. After putting the bread in the toaster, she turned the lid of the jar to open it. Except it wouldn’t open.

“Drats. I should have bought that jar opener I saw at the store yesterday.”

It had seemed like such an unnecessary thing to do at the time. $13.99 might not seem like a lot to others, but she had decided to save every penny she could toward a vacation hiking up the Costa Rican mountains with other members of the Audubon Society, and $13.99 was 1,399 pennies.

She tried again to open the jar. The lid wouldn’t move. Her hand kept giving out at the wrist, as if it lacked strength. Hearing the sound of rustling leaves coming through the patio door, she remembered—this is a day of sunshine air. Then she reached into her pantry for the strawberry jam she usually used except on days like today when promise seemed especially worth celebrating.

That’s okay, she thought. Strawberry jam is good enough to celebrate sunshine air. Anyway, it also came from Morning Glory Farms, and everything they produced was a miracle.

She went to place the jar on the counter, but missed the edge. The jar dropped to the floor, red jam spilling onto her white tile and splattering her cabinet doors, shards of glass everywhere. After gazing at the broken jar on the floor for long moments, she leaned over to pick it up, but lost her balance and landed on her hip on the hard floor. In the stunned moment after landing, she thought, what just happened? Then she quickly examined her arms and legs for cuts. Somehow, miraculously, she had fallen where there was no glass. Only a bit of jam stuck to the hem of her short, frilly nightgown.

“See, I told you,” she said, using her elbow to get off the ground. “This is a day of promise.”

After wiping clean the mess on the floor and cabinet doors, she picked up the edge of her nightgown, and rinsed the jam off. Her toaster had long since rung to tell her the toast was ready so she threw out the hardened slices, dropped two more in, and went looking for something to spread on her toast.

Butter, isn’t that what most people put on toast? But did she even have butter? She never used ordinary butter, not even for cooking. One thing she had always been proud of was how she ate right, exercised, and kept a good attitude.

She opened the refrigerator door.

No butter.

The toaster rang.

She gazed at the toaster, heard the leaves rustling behind her, and sighed. Then she squared her shoulders and reached for her toast. She slid the slices onto a plate and strode to her outdoor patio table. There she sat, breathing in the sunshine air and smiling before she bit into her dry toast. That’s when she noticed the pamphlet on the adjoining chair. She thought she had thrown it out the night before, but apparently not.

The designer who laid out the pamphlet’s artwork must have been a cheerful sort—or not knowledgeable or smug or superior or something—because he chose uplifting colors. Hope stared at the pamphlet until she remembered her toast was now growing cold. She bit into the dry toast. The crisp edges seemed to scrape across the delicate upper skin of her mouth. Her skin in general seemed awfully sensitive these days, and she reflected on how skin was supposedly the largest organ of the body, which meant she was just one big sensitive organ.

She lay the toast back on her plate. I probably should use paper plates from now on, she thought. Less risk if I drop them. From the patio, she scanned the blue-willow plates she herself had hung in her kitchen. It didn’t seem likely she could add another, not just because of the money but because she’d better donate her ladder to someone who could actually climb it.

She picked up the pamphlet from the adjoining chair, gazed at its aqua and apricot tones and thought, the designer should have made sure the pamphlet’s contents were equally uplifting. Or were the pastel tones intended to take the edge off the life sentence contained within? Is that what Hope had to do now—paint her life in pastels?

She had always hated pastels. It was the primary color spectrum of a tropical jungle or the honesty of Delft blue china she always preferred. She laid the pamphlet down and picked up her toast.

Stay with the program, Hope. Stay with the program. Remember, this is a day of promise.

A ray of light filtered through the Japanese maple usually shading her patio. It lit up Hope’s face and she lifted it to let the sunshine warm her. A breeze picked up the pamphlet in pastel colors, and it fell to the flagstone terrace.

Alerted by the sound, Hope watched as the pages fluttered. Then the pamphlet closed on itself. Living with MS, the teal-colored title said.

Saving 1399 pennies was not going to make a hiking vacation in the Costa Rican mountains possible, was it?

Hope swept up her plate, most of the toast still uneaten, and headed for the kitchen door. There, head bowed, she stopped momentarily before turning to look at the patio again. The sun is still strong, she thought as she lifted her face to warm it. The plate in her hand dropped to the flagstone and shattered.

Thank you, Lisa Emrich, for including this story in your Carnival of MS Bloggers #44 http://carnivalofmsbloggers.blogspot.com/

Peace Be With You

About My Poems

Saturday, January 14, 2012

A Caregiver’s Worry

6 comments:

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How This Blog Got Its Peace Name

How I Get Through This

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From Marc at Wheelchair Kamikaze

My Manifesto

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Sunshine Air - A Short Story

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