Many People Suffering With No Financial Help

Whether I shall turn out to be the hero of my own life, or whether that station will be held by anybody else, these pages must show...(the opening lines of David Copperfield as written by Charles Dickens;inspired by MTM). Or at least this ACCOUNT will, perhaps, have a reflection on whether I'm going to be the hero in my own life.

There was always something more important to do,
More important to say
But "I love you" wasn't one of those things,
And now it's too late
Do you remember~~~Phil Collins; Do You Remember

The start of the NFL 2011 Season has Buffalo Bills fans excited. At this point of the season the team is 3-0. And, for the first time in YEARS, Buffalo Bills quarterback Ryan Fitzpatrick was named NFL offensive athlete of the month of September. All-in-all, some pretty lofty stratospheres of accomplishments, enthusiasm, anticipation. This string of consecutive wins, coming out of the starting blocks, has me put together a reflection on what this current phenomenon means to me, and my life-experience. The BELOW is an essay that is posted in CLASSMATES:

REFLECTION OF AN EIGHTH GRADE EXPERIENCE @
ANNUNCIATION~~~

Having attended Annunciation Grade School(on and off) since fifth grade, John George was by-and-large just another classmate. But, as our eighth grade experience was unfolding in September of 1964, John & I discovered something that the both of us had in common. We both had come to realize that we had an intense appreciation of the Buffalo Bills football team. On the Monday mornings subsequent to each game, we both headed to school in anticipation of the before-class conversations which were increasingly heightened, and the enthusiasm and excitement of our interactivity intensified. The reason for this was because the Buffalo Bills were stringing together a series of consecutive wins---since the Season Opener. In this Season where they would ultimately go toe-to-toe, for the first time, to win the A F L CHAMPIONSHIP against the frustrated San Diego Chargers, the Buffalo Bills had strung together 9 consecutive regular-season wins, before they would lose their first game. This accomplishment, during the 1964-1965 Season, is still---a Franchise Record.

The 1964-1965 AFL Championship win was the FIRST win against the Chargers. This is the championship year where linebacker Mike Stratton executed the "shot heard 'round the world" in tackling Keith Lincoln, breaking his ribs and taking Lincoln~~~and the Chargers, out of the game!!

Ultimately, high school, and the paths and tangents of life would facilitate the separation that continues regarding John and myself, but for this one period of time, brought about by a sports phenomenon and some larger-than-life local sports heroes that we just absolutely fell in love with, we were inseparable!!

BELOW is The SPOTLIGHT article which was in the BUFFALO NEWS SUNDAY 25 September 2011. The article, for myself, was poignant from a couple of standpoints. The first point of concern is becoming afflicted with a handicap, and having to deal with it personally, physically, and financially. The second point is having to do with how those in your immediate vicinity, that is to say most typically; your family members---how do they respond to your circumstances.

When life gets hard
A memoir by the wife of a construction worker paralyzed from the chest down exposes the pain, struggle and hope the couple share

By Charity Vogel

NEWS STAFF REPORTER

Updated: September 26, 2011, 7:32 AM

There are people who never break step when dealing with a loved one’s devastating injury. They face the public with a smile and are as strong as steel–and they never let anyone see that steel melt down. ¶ And then there is everybody else. ¶ Melanie Winkler D’Andrea is not ashamed to say she is firmly among the melt-downers. The I-can’t-go-on-anymores, the grimacers instead of grinners. ¶ There were times, after her husband Dan was injured, when she went weeks on end without a single “good”day. ¶ She is a nurse, but there are chores she handled for her husband that she could never bring herself to like. ¶ And there was one point, a really bad point, when she contemplated ending her own life, just to escape. ¶ “I just felt so hopeless,” said Melanie, 57. “I was so sick in my head, so depressed.” ¶ The reality is, having your life turned upside down and torn apart is not easy, and it doesn’t feel particularly noble, either. ¶ But, through it all, through the pain and hardship, Melanie can say that she never broke a promise she made to herself: that she would never question God about why she and Dan were suffering.

Now, seven years later, as she grapples with her own chronic health problems, Melanie D’Andrea is opening her heart in a revealing memoir, “One Door at a Time.” She pulls no punches about how difficult it can be to cope when a loved one suffers a debilitating injury, like the accident that happened to Dan.

“I had to pray and think,” Melanie said, about writing the book. “I thought, people are going to find out what I am really like. That was frightening.

“But this is a story that needed to be told.”

Dan D’Andrea worked in construction, and he has a hard time thinking about the workplace accident that left him paralyzed from the chest down. But he has no trouble voicing support for his wife and her effort to increase awareness about disability.

“Melanie is a genuine person,” Dan said. “A real person.”

The story of Melanie and Dan D’Andrea is many things. A story of struggle; a story of persistence. It is also, a love story.

Next to that, the D’Andreas know, even pain and despair amount to nothing.

A Dan-friendly home

Their sunny, spacious ranch house in Amherst is much changed from when the D’Andreas moved in nine years ago, after their wedding.

Originally a 900-square-foot starter home, the house was expanded and made handicapped-accessible after Dan’s 2004 injury. They joke that the house is not just handicapped- friendly, it’s “Dan-friendly,” tailored to his frame, the size of the wheelchair he uses and his range of motion.

“Our goal was for me to be as independent as possible,” Dan said. “I refuse to have people come to the house [as caregivers]. That was probably hard on my wife. I want to be independent –as much as I possibly could be.”

Ask the couple about painful moments they’ve encountered outside the sanctuary of that home, and they’ll give you a litany. Of how Dan was pushed aside in the doorway of a restaurant, because his wheelchair made him slow. Or about the time their hotel, with so-called “accessible” rooms, had only a regular standing shower stall with a rim to climb over. Or about how few of Western New York’s parks allow the nature-loving Dan the kind of outdoor access he craves.

“There’s a gap out there,” Dan said, of the way disability is viewed. “I would like to see inclusion. So anywhere you go, anyone with a disability can do anything anybody else can.”

There are plenty of people who would agree with him.

About 6 million people –1.9 percent of the U. S. population –are living with paralysis of one form or another, according to the latest research by the Christopher&Dana Reeve Foundation, done in conjunction with universities, medical centers and the Centers for Disease Control. That number is more than 30 percent higher than was previously believed, the foundation reported. And nearly 1.3 million people in the country are living with a spinal-cord injury.

Melanie struggles when she sees the way the world treats her formerly strapping young husband –the petty injustices, the casual lack of concern.

People who know the couple have noticed it as well.

“What I have learned from them is how badly people treat the disabled. I see [Melanie and Dan] out, and how disrespectful people are,” said Donna Alessi, a family friend.

“They’ve been through a lot together.”

A good team

No one would have predicted this sort of road for Melanie and Dan D’Andrea.

From the time they met in May 1998, they have been inseparable. Melanie, a Dunkirk native, had lived in the Denver area for more than 20 years.

Newly single after a divorce, she decided to move back to Western New York and found an apartment in Amherst. Her next-door neighbor was a good-looking construction worker named Dan.

“Out comes Prince Charming,” recalled Melanie, of how Dan came over to help her move in.

Dan was 15 years younger than Melanie. But that didn’t seem to be an issue.

“He was rugged-looking,” said Melanie. “I thought he was older than he was. When I found out [his true age], I thought, oh no. And then it just didn’t matter.”

The pair started attending church together –Catholic Mass, where Melanie introduced Dan to a priest she admired. Dan felt himself becoming more spiritual through her influence. “I was pretty religious then,” he said. “I still talk to God every day. It might not be what he wants to hear.”

Before long the couple moved in together and then, in 2002, they married.

“Melanie had said she would never remarry –so I was surprised she changed her mind about that,” said Christine Woodbury of Clarence, Melanie’s younger sister. “Dan must be special. I don’t know that anyone else could have talked her into marriage.”

As newlyweds, the D’Andreas were the kind of couple friends would exclaim over. They complemented each other well. They laughed easily together. Each worked at a demanding job–Melanie as a nurse, Dan in construction –and supported the other’s ambitions.

“They made a good team,” said Woodbury.

The D’Andreas were the kind of couple people envy –until the day everything changed.

Tragedy strikes

It was a normal weekday in December 2004. Melanie was in the middle of a typical day in her job, as a triage nurse who worked over the phone from home.

She had just gotten off a call when the phone rang. She didn’t recognize the number on her caller ID. In her memoir, Melanie writes about what happened next:

“I knew immediately that something was off.

‘Honey I’m hurt real bad.’ Dan was crying. Now THAT was unheard of. I had seen him cry only once, at his mother’s funeral five years earlier. “I can’t move. I can’t feel anything from my chest down. I can’t move my legs. I can’t feel my feet! I’m talking on somebody’s cellphone. I can’t get to mine because I’m hurt.”

“Dan’s panic, transferred to me through the phone line, hit me like an electric current.”

Dan, then 35, had been working on a job site renovating Buffalo’s old Holling Press building. He had been standing in an elevator shaft when a plank fell from a floor above, plummeted down the shaft and landed on the back of Dan’s neck, crushing the top of his spine.

He crumpled to the ground, unable to feel anything below the middle of his chest.

He was taken to Erie County Medical Center and spent weeks in trauma care.

This was a dark time for the couple, Melanie writes in her memoir. Dan, who was usually unconscious, reacted badly to some of his medications; he would thrash around and try to pull out his IVs, and there was a chance of him hurting himself further.

“The doctor told us it was the reaction of an able-bodied young man who had the strength of an animal, being trapped inside his body,” said Melanie. “They told me early on that he would probably never walk –but that he would probably not die.”

The D’Andreas were clearly in life-changing circumstances, said attorney Terrence M. Connors, who represented them from these early days after the accident.

“He was in rough shape. [Dan] was barely conscious when we first saw him,” said Connors.

As for Melanie, Connors said, she was already focused on the reality before her.

“Right from the beginning, Melanie knew it was going to be a very difficult row to hoe for him,” Connors said. “She said to us, ‘I just want your candor. I just want you to be honest with me.’ She knew how difficult it was going to be. And not just the physical, but the emotional side of it.”

Melanie said she knew right away what she and Dan were up against.

“From the day it happened, I knew that he wasn’t going to walk again,”Melanie said. “I didn’t go through a grieving process –I went right to the reality.”

Hard to handle

After a week, Dan began to creep back to lucidity. He was in the hospital for weeks. In January 2005, the couple decided it was time to seek treatment that might give him a chance at movement.

Craig Hospital in Colorado is one of the country’s premier resources for spinal-cord injury, according to experts at the Christopher&Dana Reeve Foundation.

“If you go to the local hospital and they see two or three spinal-cord injuries a year, that’s way different from going to a major center where they see hundreds of these cases a year,” said Joe Canose, senior vice president for quality of life at the foundation, located in Short Hills, N. J.

Dan went to Craig by Lear jet. Once there, he was immersed in extensive rehab sessions, counseling, and medical treatments designed to make him as independent and mobile as possible. Some 23 percent of cases of paralysis are caused by spinal-cord injury, second only to stroke, the Reeve Foundation data shows.

Melanie, meanwhile, was facing her own troubles. As her husband progressed, she found herself having “meltdowns” in her new role as caregiver.

To take one example: in the book, she writes about how hard it was for her to handle Dan’s toileting needs, since he could not control his bladder and bowels until he learned to follow a bowel “program.” One night she bought them a takeout dinner; it passed immediately through Dan, and she spent the next several hours cleaning the bed, floor and bathroom of their apartment in Denver. As she writes:

“Imagine one minute you are having what you hope will be a romantic, cozy dinner with your husband. In the next moment, you are changing the pants of that same 200-pound man. He has just had the largest diarrhea stool of his life. Imagine having nothing available to you but your bare hands, a few towels, and a wash rag. Imagine wondering if this is the first day of the rest of your life.”

It was in these early months that Melanie began to assemble voluminous scrapbooks about their experiences. She also began writing in a series of journals –tattered memo notebooks –that gave her room to chart Dan’s progress, as well as vent her own emotions.

“There’s pressure on [the patient] to progress. And pressure is on the caregiver, to put up or shut up,” she said. “I felt that all the time –yet I wasn’t the one who was injured, so what did I have to complain about?”

Writing it all down

It was about this time that Melanie also realized that, apart from actor Christopher Reeve’s account of his paralysis, there were very few books that offered any insight into what being a caregiver and spouse of a spinal-cord-injured person was like.

“Seven years ago, I didn’t see anything,” she said.

Along the way, her thoughts grew into a plan: to write an honest account of what her journey was like. She drew from her journals, her scrapbooks and her memories.

“I felt compelled to write about it,”Melanie said. “If just one person reads it and tells me that they loved it and it helped them, I’ve reached my goal.”

At the Reeve Foundation, Canose said that people underestimate the broader impact of a paralyzing injury.

“A spinal-cord injury in a family affects the whole family,” Canose said. “There’s a lot of families that don’t [make it]. Some can’t handle it.”

For caregivers, Canose said, the difficulty of the role lies in its neverendingness.

“It’s 24/7. That’s the difference,” he said. “You’re on call all the time – to handle issues you’d rather not deal with.”

Melanie said she would like to use any proceeds she realizes from the memoir to fund equipment and programs that would help disabled people in Western New York.

Dan, too, has found a way to get past his injury and reach out a helping hand.

He has set up a charitable trust with some of the settlement he and Melanie received from his lawsuit over his injury. Dan was awarded $27 million from four insurance carriers in the settlement.

And Dan–who has not regained any significant mobility in his lower body–has taken steps to more publicly advocate on the local level about disability. He sits on an advisory board to the Amherst town government on disability issues. His trust has funded programs designed to train local governments about issues of handicapped access and sensitivity.

“My vision is more local. His is wider,” Melanie said of her husband.

A strong will

Today, the D’Andreas are coping with another difficult reality: Melanie’s recent diagnosis with leukemia.

Melanie told Dan after hearing the news from doctors, despite knowing the toll it would take. The good news is, her illness appears to be a slow-moving, chronic variety. The bad news is, they had just felt they were getting their bearings after Dan’s paralysis.

“I have a hard time keeping anything from him –painfully so,” said Melanie. “I broke it to him right away.”

Dan said that her illness is difficult for him to understand.

“It was just another thing on the pile, you know?” he said. “It’s just the kind of luck we seem to get. You don’t know what to expect next.”

As for Melanie, she figures she’ll play this hand the same way she played the one she was dealt with Dan’s accident.

With pragmatism –and a strong will.

“I had made that promise, remember?” she said. “Not to question: why us?”

“I ask that a lot,” interjects Dan, sitting by her side.

Melanie smiles at him. “You didn’t make the promise.”

THE article impacted me deeply. I felt compelled to write to the NEWS about it. The BELOW was my 'first' manuscript:
Dear Editors;

Regarding the saga of the D'Andreas in your Sunday SPOTLIGHT story of "When Life Gets Hard",
the D'Andreas had my heart, soul, and inspiration until I read about their $27,000,000.00 settlement.
The empathy levels were in overdrive, but the levels admittedly started to downshift once I saw the
Connors name mentioned. I, of course, am aware that Connors is a high-visibility injury-attorney in the
Buffalo area. Being advised two paragraphs later that D'Andrea's work-related injury culminated in a
multi-million dollar settlement, my emotional attachment dropped to neutral.

That revelation had me posturing for the position that the circumstance leading up to accident, and the
subsequent debilitating lifestyle is unfortunate, but they have ample resources at their disposal to
mitigate the pain.

There is another part of the disability world where there are many of us who do not have such resources
at their disposal to mitigate their pain. Mother Nature imposed on me, in midlife, a very very debilitating
disability which continues to be a slow-progressive degeneration type of Muscular Dystrophy. There is no
cure. As debilitating as this handicap is, I am reduced to SSDI benefits---and working part-time, to make
ends meet. With SSDI rules being what they are my part-time income is about to be diminished further
compounding the angst of making ends meet.

The disability is such that I literally no longer possess any sense of balance. And my legs are a twisting,
and a reduced-strength, mess. Over short distances I can assume the erect position and ambulate with
the aid of a reciprocal walker, but longer distances must be traversed with the aid of a battery-powered
scooter.

The family-factor is a curious one. There will be occasions where help is offered and evident, but by-and large
it postures itself in suspended-animation, awaiting my request to ask for it. And even when it is requested,
sometimes the 'bedside-manner is evident, and sometimes, it is not.

With all due respect, D'Andrea Family, you've been provided an extraordinary blessing; an extraordinary resource
to adequately address the misfortune.

Because I didn't want the 'world' to be bearing witness to this one particular 'cross' that I am contending with, I decided to delete the: "The Family-factor" paragraph from essay so that the finished-product sent to THE NEWS read as follows:
Regarding the saga of the D'Andreas in your Sunday SPOTLIGHT story of "When Life Gets Hard",
the D'Andreas had my heart, soul, and inspiration until I read about their $27,000,000.00 settlement.
The empathy levels were in overdrive, but the levels admittedly started to downshift once I saw the
Connors name mentioned. I, of course, am aware that Connors is a high-visibility injury-attorney in the
Buffalo area. Being advised two paragraphs later that D'Andrea's work-related injury culminated in a
multi-million dollar settlement, my emotional attachment dropped to neutral.
That revelation had me posturing for the position that the circumstance leading up to accident, and the
subsequent debilitating lifestyle is unfortunate, but they have ample resources at their disposal to
mitigate the pain.
There is another part of the disability world where there are many of us who do not have such resources
at their disposal to mitigate their pain. Mother Nature imposed on me, in midlife, a very very debilitating
disability which continues to be a slow-progressive degeneration type of Muscular Dystrophy. There is no
cure. As debilitating as this handicap is, I am reduced to SSDI benefits---and working part-time, to make
ends meet. With SSDI rules being what they are, my part-time income is about to be diminished further
compounding the angst of making ends meet.
My disability is such that I literally no longer possess any sense of balance. And my legs are a twisting,
and a reduced-strength, mess. Over short distances I can assume the erect position and ambulate with
the aid of a reciprocal walker, but longer distances must be traversed with the aid of a battery-powered
scooter.
With all due respect, D'Andrea Family, you've been provided an extraordinary blessing; an extraordinary resource
to adequately address the misfortune.

BELOW is what the NEWS printed Monday 3 October, in their Editorial page:
I am writing in regard to the saga of Melanie and Dan D’Andreas, which was featured in the Sept. 25 Spotlight story, “When life gets hard.” They had my heart, soul and inspiration until I read about their $27 million settlement for his work-related injury.
That revelation had me posturing to the position that the circumstances leading up to the accident and the subsequent debilitating lifestyle are unfortunate, but they have ample resources at their disposal to mitigate the pain.
There is another part of the disability world in which many of us do not have such resources at our disposal to mitigate our pain. Mother Nature imposed on me, in midlife, a very debilitating disability that continues to be a progressive degeneration type of muscular dystrophy. There is no cure. As debilitating as this handicap is, I am reduced to Social Security Disability Insurance benefits and working part time to make ends meet. With SSDI rules being what they are, my part-time income is about to be diminished, further compounding the angst of making ends meet.
My disability is such that I no longer possess any sense of balance and my twisted legs are a reduced-strength mess. Over short distances, I can assume the erect position and ambulate with the aid of a reciprocal walker, but longer distances must be traversed with the aid of a battery-powered scooter.
With all due respect, the D’Andreas family has been provided an extraordinary blessing—an extraordinary resource to adequately address the misfortune.

If I may be allowed to pull the curtain open just a tad, the family-factor is a curious one. There will be occasions where help is offered and evident, but by-and large
it postures itself in suspended-animation, awaiting my request to ask for it. And even when it is requested,
sometimes the 'bedside-manner is evident, and sometimes, it is not. Even something spontaneous and out-of-the-clear-blue; while looking me square in the eye---something like: "How are you doing?" Are you feeling alright?" "Do you need anything; CAN I GET YOU ANYTHING?" I will hear questions as these coming from strangers and acquaintances, but I will not hear these kinds of questions from family members. And least of all: Donna. She is currently in an accelerated-program in Lou-avoidance. And, of course, with me having released her, she may feel that her 'responsibility' as my partner, is significantly diminished. She is probably thinking in a relieved way, that it is no longer incumbent upon her to provide as a wife-partner should. She will 'set-up' water & milk on the kitchen table for me on the mornings that I have to get to the ECBOE. She does this because she is up already anyways to have to get to her cleaning assignments. It is there, resting on the table, awaiting me. Donna though, is long-gone; no note or expression of affection. She will be gone all day. And she will make sure she is gone long enough so that her 'responsibility' to prepare supper defaults to Andrew. Just to clear the air, in case there is some oversight on the CORE issue, if I could reasonably prepare or attain my suppers, trust me, I would. There was once-upon-a-time, myself possessing the ability to do such routine tasks. Be assured, if I, like ATLAS, could continue to carry the world on my shoulders, I would. In an embracing relationship, in a loving relationship, these gestures would certainly not be considered 'tasks'. They are in this household. Out of the seven days in the week, Donna's actual preparation of the supper---may be two days. Andrew, by-and-large, covers five or the seven days. Part of why she relinquishes the supper arrangement to Andrew, as well, has to do with the fact that she simply DOES NOT WANT TO SHARE MY COMPANY. One would think I was plagued with leprosy. It is as if I am adjudicated to solitary confinement. That is as realistic as it actually is. I have no company, no conversation, and unless I initiate a gesture like a 'good-night', none is offered. Same with a good-morning. I don't think I have heard a good-morning from anybody, in this house. And she is good at putting on the spectacle for her next set of suitors. She can display the colorful feathers as well as any peacock can---and she knows this. This is why she gets all of the attention and credit, while I, like Cinderella, lay shattered and torn, in the isolation of the 'corner'. With myself, in the words of U-2, she can be---as cold as ice. I have no idea how she is willingly conducting herself as a human being. The no-contact, the no-conversations, the no-interactivity, the no-embracing, the no-kissing, the no-hand holding, is gut-wrenching for me. This is the course-of-action which she chooses to prefer.

She is either cold, heartless, and hypocritical, or she is engaged with someone else already. For me, solitary confinement is virtually unlivable. And yet---this is the sentence I am given to serve---for my transgressions.

work still in progress...

--{-=@
Hickok
The Promise