Early Morning Philosophical Question

Nadia, who became 6 the day after Christmas, this past year, with inquisitive eyes, posed this question to me early this morning, “Nanny, have the eyes in the back of your head, woken up yet?”

The depth of that question leaves me pondering.

Happy Sunday to all!

"Spring Daffodil" Photo Credit: Jane H. Johann, Palmyra, WI , USA April, 2015

“Spring Daffodil” Photo Credit: Jane H. Johann, Palmyra, WI , USA April, 2015

Beautiful Butterflies by Nadia Krenn

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Beautiful butterflies

Flying with their friends

They are lovely

When they blend

 

Nadia, my granddaughter, is six years old and in Kindergarten.  Last night she said, “Nanny, we have to have a poem for tomorrow! ” She wrote the following poem for my blog and to share with you all!  Please feel free to leave her your comments on her artwork and poem. Thank you!

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Roger Joseph Johann (July 24, 1934–May 5, 1955)

Sixty  years agIMAG3657o today, my oldest brother–

Roger, left this world for another

He and eight others, in a fiery crash

Died as the plane exploded in a flash

I was five..,just barely alive

Waiting and wondering why my Mother cried

All somber and sad, the small box was placed before the pews

Draped in black, in front of the commuion rail, my only view

My brother– who the winter before–

Carried the Christmas tree through the door

I had waited for him snug in his bed

He would not come home again, for he was dead

Still I recall the chalkboard and colored chalk

He carried me down the stairs to see in his gentle walk

He no longer would sit me upon his knee

And light the cigarette and give me a puff, would he?

He joined the Air Force at seventeen

To be free and fly …his only dream

Now he wanders the sky above

Living with the God of Love

Published Anthology: SLICES of LIFE

SLICES of LIFE BOOK IMAGE COVER

My FIRST official publication!  And I owe it to the heart of my granddaughter, Nadia Jane Krenn, who inspired me to write it!

I also want to express my gratitude to Sheri de Grom, who suggested that I send a story to Russell Towne. I never would have been included had it not been for her encouragement and persistence urging me to submit a story.  Thank you, Sheri!

Sheri has her own very wonderful, informative blog: http://www.sheridegrom.com/ I know some of you are already familiar with her superb writing!

Any royalties I receive from the sale of the book, I am going to put into a college fund for Nadia and her brother, Ayden.  So far I have earned the sum of  $4.83 in royalties for our story. :).  However, since I wrote this sentence several days ago, I will no longer receive any royalties. Fame is so fleeting! This weekend, the gentleman who put the did the compilation of stories and grunt work, no longer sees it as a lucrative book, and requested that we free him from the responsibility of sending us any future royalties.

However, I had to pay a $35 to have it considered for publication and then I bought 10 copies from Amazon after it was published for $ 84.50….so I have personally spent $119.50 to have one and a half page story published.  LOL  :)   SO perhaps I should have invested the $119.50 in stock?

Now I have to ask myself. was it worth it?

I will respond with a enthusiastic, “Yes!”   “Vanity of vanities, all is vanity!”  :)  I now have a clear understanding of Vanity Press. :)

 

 

I submitted six stories, and ONE story was selected for inclusion in the book, SLICES of LIFE, an anthology complied by Russell Towne (Author, Compiler) and Sandy Lardinois (Editor, Contributor).   It can be purchased on Amazon.com for $8.96, if you feel so inclined. Thank you!

The authors of the stories in this anthology are:   Russ Towne; Sandy Lardinois; Gail M. Nelson, Sheri de Grom; Mimi Krumholz; Pozanghera, Marie; Yvonne Deane; Koji D. Kanemoto; Teresa Karlinski; Pamela Read; Marie Lukaski Wallace; Bill Webb;               Jane Johann; Kimberly Laettner; E.H. Landell; Sherri Matthews; Diane Rawn.

http://www.amazon.com/dp/1500314447/ref=pe_385040_30332200_TE_item_image

 

“From heart-warming memories of childhood, to humorous perspectives on aging, inspiring stories of survival against nearly insurmountable challenges, to hilariously disastrous social encounters, this non-fiction anthology has it all! Features thirty-two stories exploring the challenges, triumphs, and humor of life as seen through the eyes and experienced in the hearts of fifteen writers.”

Part I: Lives Lost to Myotonic Dystrophy

Myotonic dystrophy is not a widely known or acknowledged disease.

In the medical history of our family, it seems likely that my grandmother’s brother carried the gene. He died around the age of 28; however, he did not marry and did not have children. Nevertheless, it appears his sister carried the recessive gene. It skipped his sister’s children (one of whom was my Dad) but did manifest itself in five of my eleven siblings, varying in degrees of severity. It also appears to manifest itself in greater severity with each successive offspring that carry the gene. Two of my nephews manifested the disease. Jimmy has already passed away from the disease at age 39. As it has become better understood, and after a personal survey of my own, I have come to discover that there are 16 people among my siblings and first cousins on my father’s side that have the disease. There is NO cure for this disease.

Our family learned of it about thirty years ago, even though my brother and sister each had symptoms of the disease manifested in their early days as children. The disease seems to accelerate around the late twenties of individuals who carry the gene, and it became more obvious in the health condition of my brother, Bill, at the age of 28, and my sister, Barbara, in her 30’s. Bill died at the age of 61 and Barbara died at the age of 63. Considering the advance of the disease in their bodies, it is amazing that they survived as long as they did. Both had strong, independent spirits, which I think gave them an advantage in sustaining their respective lives.

1arobin21My brother and sister did not receive much understanding regarding their disease when they were young children, because no one knew they had it. Their symptoms, unfortunately, were looked upon as being lazy and only interested in staying up late at night. Allow me to clarify.

Both of my siblings, in a family of eleven children, tended to slur their speech and were constantly admonished by my parents, my teachers, my siblings, and myself (regretfully so) to please make the effort to speak more clearly and this was not always communicated in the most kind way. Neither would wake up in time for school, and though we lived one block away, were late almost daily in getting their little feet to carry them up the street. Neither could fall asleep at night and would be awake all hours! Both ate very slowly, and were the recipients of frustration and anger that their eating slowly was just a means of avoiding helping with the dishes! (No automatic dishwasher in our home, though my Dad sold them in his plumbing and heating business.) Both of my parents were industrious people and work was a natural to them. We were of German heritage and to work showed character. Neither Bill nor Barbara could maintain a job for very long, not because they were lazy, as they were often admonished for, but because they lacked the physical strength, which at the time, no one seemed to understand.

Life went on and both suffered needless misunderstandings about their lack of energy and inability to articulate clearly.

My brother, Bill, was about 28 years old when he received an honorable discharge from the Army, and it was indicated he had a muscle disorder, after being in the paratrooper division. They attributed his muscle fatigue to the parachute drops. However, as he continued his medical visits at the VA, it came to light that the muscle weakness was of another origin–myotonic dystrophy. Meanwhile, my sister, Barbara, who was five years older than Bill, also learned that she had the same disease.

When I think of the hurtful remarks both received from so many over a health condition neither could control, it is a guilt not easily removed and a regret I feel badly about. It is has made me more careful about the judgments I lay upon others. Many people suffer from “invisible diseases,” such as depression, chronic fatigue, psychological difficulties as the result of assaults, etc. I think how often we misjudge others…and how it is important “not to judge” but to be compassionate and understanding, for as the saying goes, everyone is suffering from some type of battle, so be compassionate.

This disease is called myotonic, because it attacks the autonomic systems of the body—the nervous system that controls the muscle contractions, the respiratory system, the circulatory system, the digestive system.  For example, my brother and sister had difficulty swallowing their food, hence, they ate more slowly than the rest of us and they had to have a glass of water or milk handy to help the swallowing. The swallowing mechanism did not function optimally for them. The muscles that control the movement of the vocal cords also were affected, hence their difficulty in speaking clearly.

As their disease progressed, they could not swallow their food, and each had to be tube-fed to maintain their lives. Eventually, the muscles in the diaphragm no long functioned, and they each had to be placed on a respirator. So in their final years, speaking was extremely difficult for both my brother and my sister.  Eventually, when my sister accepted the ventilator, she  could not speak at all.  My brother used a machine that would suction out the mucus so he could breathe and say a few words.

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My sister, Barbara, lingered in the nursing home for two years, on a ventilator and tube-fed. She was on a great deal of pain medication. She weighed about 60 pounds when she died. I was working full time and caring for my Mom in the evenings, who suffered from a stroke and was living with me. During the day, I had home health help for a year and then eventually, my two daughters took turns during the week days to help care for my Mom.  As a result, I could only visit my sister once a week. It was painful and difficult to see her suffer as she did. I did what I could to help her but I have never felt it was enough. I think that is partly why I am writing this piece. So that if there are other people out there in the world whose family members are suffering from this disease, that more understanding and patience is given to those who need it.  I tried bringing her a word processor, but she could not bend her fingers to type. We spent much of the visit time guessing what was being said. I must have caused her great frustration for all the repetition of what she was trying to communicate to me.  I left a notebook for visitors to write in, NOT to check up on who visited or who did not—as I was accused of that very thing—–but so that it would aid in Barbara’s memory and give us a topic to speak about and enhance her memory and that I would have a more clear idea of what she was trying to communicate with me.  Unfortunately, I was not there the day she slipped away. I had visited her two days previous to that, and though she asked me to come that Saturday, I didn’t. I felt much guilt about that for some time now. I did go to her immediately that Sunday morning, when I was phoned and told her condition had worsened, but by the time I had arrived, I felt she was already somewhere else. Her body was cold. I went to the nurse’s station, and they said the doctor couldn’t be called until the evening because it was Sunday. This did NOT give me much comfort.  I returned to her room, and sat with her for another hour and said my goodbye…though I think she was already with God.

I will continue the saga of my brother’s struggle with the disease in another segment.  I am now feeling very overwhelmed.

 

SYMPTOMS of Mytonic Dystrophy:

SOURCE:  http://www.rightdiagnosis.com/m/myotonic_dystrophy/symptoms.htm

REFERENCE MATERIAL concerning Myotonic Dystrophy:

http://www.myotonic.org/

http://ghr.nlm.nih.gov/condition/myotonic-dystrophy

http://depts.washington.edu/neurolog/images/neurogenetics/myotonic.pdf

https://www.genome.gov/25521207

my younger brother…Bill

Laughing daffodils blow in the wind

Peaceful birds chirping the delights of Spring

And with them thoughts of you they bring

Sharing measles in the darkened bedroom at four and five

Climbing the fifty foot cedar trees

Seeing who could out do the other

Reaching the top …winging our way into the breeze

Feeling the freedom of our youth

Reenacting the adults and you played the priest

Giving out Stark candy wafers for communion

The Ghost Town in the neighbor’s woods was filled

With a bank, and saloon, and all the wild imaginings of our youth

Until the owner chased us out

And we laughed and laughed and returned as soon as he was out of sight!

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Playing tag in the clover fields and again chased out

Onward we moved and out of the town

You into the service and me into college

Yet touched bases now and then

And I pleading with you to vacation with me

And you agreed and off we drove

Through the Pennsylvania Turnpike, where I thought my life would end

Bolstered by stone walls on either side, with the semi on our tail

The downward descent though the Appalachian mountain range

To the warm shores of the Atlantic shouldering Myrtle Beach

Eventually we returned to tiny St. Michaels

And again we parted company

You on to marriage, and me on to the convent

After my absence for five years, you opened your apartment to me

And again we struck up the conversation where we left off several years previous

Brother and sister always we will be

Your kind and generous heart will carry me

Now you have left this Earth, giving what you could of yourself

Now you have left this Earth, but not my heart