Posts Tagged ‘marriage’

Today I am in a whole new place. My mate of thirty-two years has ALS. My vital, active mate who goes out of his way to be there for kids, rescue animals and care for me, my home and my yard, may leave me. It is not fair. I am all over the place today. I am grieving, I do NOT want to live another twenty or thirty years without this man. I do not want to deal with my pain, my disease that has already forced me to give up a career and most of my life, without him. He is the only thing that made my pain, lack of life, bearable.

I want to control my own emotions to be there for him, to make it ok for him to be sick, to possibly leave me. I want to be there for my kids and grandkids to make it ok for them.

Then, faster than you can snap your fingers, I am angry. It’s not fair! He is one of the good guys. Why take him and not some drug dealing scum who settles arguments with a gun?

A few seconds later I am terrified. We owe money on the house. How will I pay for it. What about electricity, water, gas, a phone? I will have to come up with money for the property tax and I will be left without medical insurance. I am unable to work due to a central nervous system disease and relied on my mate’s income.

Then I go back to, “I don’t care about the income, I need to keep him with me.” He is a mere fifty-six years old. There are new discoveries and treatments that can fix this disease, but they are mired in Federal guidelines and paper work. Doctors are afraid to try things for fear that the government will shut them down. We need to take the hand cuffs off our medical researchers and move things forward before more people like me have to watch a loved one die too young. One group has proven that injecting a certain protein dissolves harmful protein from brain cells, reversing ALS symptoms, another shows that long-term, high doses of certain antibiotics reverse and stem symptoms. Yet one is not able to start trials on humans for another three years (what the hell) and the other is shunned because doctors could lose their privileges if they prescribe mass doses of antibiotics for off label use. Wrong, wrong and wrong. Treat these people now! If you are wrong, and the treatment is wrong, so be it, they are going to die young any how, but it is a step in the right direction.

 

 

 

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ALS – Arrival

Posted: September 5, 2015 in ALS, Lou Gherig, Support, Uncategorized
Tags: , ,

What a great day. We sat in the yard, drank our morning drinks, fed the dogs, watched the birds at the feeders and enjoyed each other’s company. Fast forward a few hours and you will find my husband, home after a visit with his doctor. My mate and best friend of thirty-two years telling me the doctor said he thinks his has ALS.

Not a shock mind you, as this is what took his mother, and we sort of waited, and feared this day for the past twenty years. But a shock non the less. The signs were there. He choked when he drank or ate. His throat refused liquid or food from time to time. He went for tests, they told him he had too much stomach acid and that was eroding his throat. We took that diagnosis, clung to it and gave him a pill to help.

A month or so later a co-worker took him to the ER because he was slurring his words so bad they feared he was having a stroke. Cue the endless rounds of medical tests and doctor bills. He still works, he feels great. But he is no longer willing to eat in public because it is embarrassed when his throat won’t accept liquid and it rolls down his chin, or he chokes when trying to swallow solid food.

His upper arms twitch and tremble and he can’t sleep for more than a few hours at a time.

The vital man, who spoils me, pumps my gas, pays the bills, wakes me with a drink and tells me how smart I am daily is struggling. It is wrong. He is a good man who works any hours needed, covers for co-workers, drives the kids to appointments and practices and refuses to let me carry groceries is failing. I read a study once where most married couple only communicate, personally and face to face fifteen minutes a day. We shattered that study! We spend hours together with our animals, talking or just sitting together listening to music. We make plans, design new gardens, gifts for the kids or talk about politics. Now he struggles to speak clearly and I must make him repeat himself often. It sucks.

This is a man who backs me all the way. He is there for all my kids in any way possible. He loses sleep to drive them places, attends marching band events, takes our boy to air shows and funds them in any way that will secure their future. He has given the kids gifts of time, money and caring that they may never appreciate. But he did it.

Now, I am faced with losing this man, our whole family is faced with losing him. What will we do? Why are human trials for ALS treatments taking so long to pass the FDA? I am angry, scared, stressed, sad. I am all over the place emotionally. I find myself worrying about how to pay for the house. What will I do when I lose health insurance. Then I am mad at myself for worrying about finances when he can no longer work.

This is living with ALS. It is ugly, it is relentless, it strangles whole families. It forces you to think about living wills, DNR documents and property wills. All things you do NOT want to think about when dealing with a sick spouse. My soul mate it fifty-six years old. One neurologist sent him for more tests, he tossed us a small kernel of hope, saying he was looking for something else.I grabbed that kernel and held on to it like it was life itself. Deep down inside, I feel that is just that, hope. Waiting for the good doc to have time in his busy schedule to tell us results. God forbid he tells us ASAP or via telephone. We have to wait two weeks. Do they know what this wait does to families?

I am just writing this all down as a way to cope with it, get it out. How do you prepare for the possibility of living without your soul mate for thirty or more years?

 

 

 

Join the Friday Fictioneers, a wonderful group of writers who submit a 100 word story or poem based on a weekly photo. This is flash fiction at it’s finest. You can read submissions or add your work HERE.  Comments welcome, as long as they are respectful and helpful, not hateful.

Congrats Madison! Marriage is cool with the right person!

Category: Fiction//Drama

Words: 84

Rating: PG

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Marriage  was death, a stance she had clung to for years. Then came Jim. The last four years had been fun, comfortable and full of love, thanks to him. He had proposed seven times, but this time was different. Something in his eyes seemed to say “we either take this step, or we’re through.”

Realizing she couldn’t live without him, she said yes. That was yesterday, this morning, she took a deep breath and entered the shop, hoping to find a gown. Realizing she was opening more than one door.

Submit a story or poem, inspired by a weekly photo in this fun, flash fiction group. You can read submissions or add your work HERE.  Comments welcome, as long as they are respectful and helpful, not hateful.

i used this pix to show that emotion doesn’t change. War and reunions are as old as time.

Historic Fiction

Words: A bit over 99

Rating: PG

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 Copyright – Dawn M. Miller

She ran, her bustle slapping her ankles.

“When is the troop train due?” She yelled over the counter.

“What?” The elderly attendant yelled.

“The troop train!”

“That’s it now!” he shouted.

Rushing to the platform, she studied the car doors, taking in every face. Wives hugged husbands and mothers clung to sons. She had no idea if he was on this train, but hope ran high.

When he emerged, pale and weak, she cried. Would he be the same?

Picture it & write it is a fun, flash fiction group that meets weekly. Read the stories or submit your own HERE.

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2021 in the U.S.A. wasn’t pleasant. Special interest groups and big money had legislated the country into an unbearable stew pot of chaos.

Slang words, racially descriptive words, such as Caucasian or Latino were illegal. It was also illegal to possess soda, beer or liquor. A strict dress code was enforced and anyone caught frying food was jailed and subjected to rigorous dietary training. Persons caught smoking or using narcotics were put to death in public displays designed to set an example. Anyone caught in a relationship with a same-sex partner was castrated or mutilated in some way and sent to live in a desolate penal camp.

“Normal” couples wishing to have children underwent rigorous testing. Those  found lacking were denied. If they committed a crime, had arthritis, asthma or were otherwise deemed unsuitable, they were denied. If they couldn’t  maintain state health insurance they were denied. Abortion was illegal unless ordered by the state. If you were pregnant and didn’t pass state mandates, your pregnancy was terminated. Any child born with undetected illness was put down.

The obese were locked away until they reached normal levels. Once released they were re-checked,  if they regained weight they were terminated. Senior citizens were put down at the first sign of illness.

A new revolution formed, no muskets,  just the same desire for freedom. The first to fall were the insurance carriers who guided laws in the name of public health, while making millions. Next came the corrupt government. The movement could succeed, or they could die, but they had to try.

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Alastair, a talented photographer and writer has started a new fiction group that meets weekly to pen 150 words based on a photo.  Check out this weeks offering and submit one of your own HERE. You can also check out Alistair’s work at his blog.

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Ominous clouds gathered as wind churned the water into a frenzy. He never anticipated this when he talked Marcie into whitewater rafting. He had risen at five a.m., enticed her with coffee at five-thirty and was on the road by six. An ancient man with a beard gave them a safety lesson and they hit the water at eight. Marcie growled as they left the pier.

They returned three hours later as mother nature turned the world, and river, upside down. He was clawing at the bank when he saw them sink to the bottom. He had to return to the water or face certain death, or severe punishment. Diving into the froth, he held his breath as he searched the murky bottom with hands and eyes. Then he saw it. Clenching his fist, he floated up. Breaking the surface, he held them over his head..

“I found the car keys Hon!”

Her glare morphed into a smile.

 

I already released two kids into the world. One is gone, and one is near with his spouse and kids. Now I am raising three grand kids. It doesn’t get any easier. The oldest has turned eighteen, he was dragged through high school kicking and screaming, but we pulled him through. He is done with all high school classes and all that is left is the graduation ceremony. He attends the local vocational school, specializing in Aviation and Aeronautics. He is a math and engineering whiz who thinks far beyond my capabilities. He will graduate from there in less than three weeks.

However, he is still young!  Even though he is eighteen and almost done with school, I could pull out the  “it’s a school night” excuse to enforce a curfew, but he was always home at least an hour before his curfew.  As a parent, I LOVED this! He was home and all was right with the world. Time after time I would give him permission to stay out late on a Friday or Saturday night, but he would be home by ten or eleven.

He works flight simulators like some of us breathe. His brain is a human calculator. He doesn’t drive, smoke or drink. He is home after school each day and is here until bed. He has friends over and they work on computers, listen to music and eat. He is a good kid with little world experience. I tried to push him out of the nest, urged him to join clubs, go to friends houses or get a job, but he was happiest at home. I know that I have to shove him into the world. He has to drive , get a job, a place to live, form relationships.

But, the mommy in me was pleased that he was home safe and I didn’t have to worry. Then today came! He left here at 7 pm with a friend and at midnight he still wasn’t home. I was thrilled and nervous at the same time. He is over eighteen and able to stay out as late as he wants, but you can’t turn off the worry or desire to have your chickens in the coop before bed. I had to. He is a hard-working man, with above average intelligence who was taught core values.

He came home, later than usual tonight, and I found out why. In the late 1970’s a “friend” stole a large portion of my vinyl record collection. I know they sold them for drugs but didn’t have valid proof, I let it go, but I have always mourned the loss of those albums. Many were gifts from friends, my mom, aunts and cousins. Turns out, my boy was out scouring second-hand shops and music outlets for these records. He purchased many for mother’s day! He only gave me three as a teaser, but he left my mouth-watering!

This encounter left me a greater gift. I know that his heart, and head are in the right place. He is ready to enter the world, meet women and pursue a career. He is green, but he is well armed. My conversations with him have shown me that he is an intelligent man. He is open-minded and tolerant. He has a strong work ethic. He embraces music and the written word. He has a soft spot for animals and children. He is a computer geek and math whiz who talks about aeronautics as easy as as I take a breath. He is good with people and adjusts to each circumstance. He will make mistakes,and ask for help and I will stand by and let him, it’s my job.

Once again, I have to release the hand of a boy and let the world have the man. I can still see him running over the yard, his golden curls bouncing in the sun.  He will do great things and I have to back away and let him do it.