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priceless advice on coping, dealing with depression,
how to partner with the medical profession, the
tremendous value of self-help groups and the vital
importance of attitude.
successfully played the hand they were dealt and managed
to live successful, fulfilling lives. The disabled
and those with serious illnesses can learn from each
other. There are no silver bullets buried in these pages,
just the sound, useable experience of others.
who died with grace and even style.
"This book helps sufferers and caregivers alike to make sense of their situation, to avoid the mistakes while copying the successful strategies of these very real people."
-Bob Rich, PhD, author of Cancer: A Personal Challenge
"Far from a mere theoretical discourse and despite its potentially morbid topic, it brims with life: real cases, real people, real triumphs over a variety of illnesses and the distress they cause. A treasure trove of celebrated
stories of survival and passages from the memoirs of those who made it." -Sam Vaknin, PhD, author of Malignant Self Love
The more I think about it, the more I realize the impact of attitude on life. Attitude to me is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think, or say, or do. It is more important than appearance, giftedness or skill. It will make or break a company, a church, a home. The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our past. We cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude. I am convinced that life is ten percent what happens to me and ninety percent how I react to it. And so it is with you.... We are in charge of our attitudes. -Charles Swindoll
"[L]ife is ten percent what happens to me and ninety percent how I react to it." That sentence resonates as clearly with the tuning fork of truth as any in the English language. Nowhere is its thrust more important than in coping with physical setbacks.
As the above essay asserts: "The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day." This reminds us that the mind, not some external force, is the wellspring of attitude.
The following personal profile tells of a couple and their battle with a disease that some see as a living hell. This couple see it as part of the pith and marrow of life.
Another Iron Horse
Baseball's Lou Gehrig was known as the Iron Horse. He played in over 2,000 consecutive New York Yankees' games, a string spanning fourteen seasons, a durability record that stood for fifty years. In 1939 a devastating disease, amyotrophic lateral sclerosis, (ALS) broke his string. Gehrig died two years later. Today, reflecting his fame, the affliction is commonly called Lou Gehrig's disease.
While it now has a colorful name, the cause of the disease is unknown, and it remains incurable.
Over ninety percent of its victims die in less than five years, some in less than two. According to the University of California at San Francisco ALS Center, the disease is more common than generally perceived. There are 5,600 new cases in the US each year; sixty percent are men, mostly between age forty and seventy. About one in 1,000 Americans will be stricken by the disease.
Orange County, California's Edward J. McNeill should be known as the Iron Horse of ALS. He and his usually healthy, vivacious wife, Charlotte, have coped with his ALS for twenty-five years, and in spite of some profound setbacks are still going strong.
When asked how he has been able to live with the disease for so long, Ed pugnaciously replied: "I don't live with it. It has to live with me, and I feel sorry for it."
John Milton wrote: "The mind is its own place, and in itself can make a heaven of hell, and a hell of heaven." While they lived in different centuries, Milton would certainly have applauded Ed's attitude.
Diagnosed in 1979, Ed was a key executive with an international trade association. He is intelligent and well educated with a BA and an MBA. A former Marine Corps company commander, he saw only good things coming his way until this dire turn of events.
His first noticeable symptom was slurred speech. Some coworkers misinterpreted this as over-imbibing at lunch. Some even thought he came to work drunk. It got very ugly, very fast, culminating in a closed-door board of directors meeting, excluding Ed.
A timely but shocking diagnosis soon lowered these raised eyebrows. After some initial uncertainty, all four doctors they consulted rendered the same opinion: Ed had ALS and only a few years to live.
His employer responded very generously to his situation, keeping him working as long as possible and extending his benefits for life. Even so, drastic changes awaited Ed, Charlotte and their three daughters, ages fourteen, twelve, and eight.
Perhaps delayed by denial, perhaps by timidity, he and Charlotte had not shared all the facts of his devastating disease with the girls. Trying to learn all he could about ALS, Ed had ordered a booklet from the government printing office. Unfortunately their twelve- year-old middle child, Maura, found it in the mail. A voracious reader, she inhaled it before Ed and Charlotte even realized it was in the house. It described the disease in all its gruesome details, including the prognosis of a short life expectancy. This shock proved the beginning of a long downward spiral for Maura. Their other two daughters, Erin and Nanci, took the shock more or less in stride, but not Maura.
The family trimmed its sails during the early 1980s. Within three years after diagnosis, Ed was no longer able to work because of his loss of motor and speech skills. Charlotte took on the dual roles of breadwinner and caretaker with mixed results.
It soon became clear that, in the long run, staying in New Jersey was not in the cards for the McNeills. The winters are harsh and expensive. Ed suffered during extremes of both heat and cold. Property taxes on their large family home were high and going higher, and it was a three-story house, all wrong for Ed's compromised mobility. Financially they would have to either refinance or sell the family home anyway. They both knew the financial road ahead would be rough, and they would need to tap into some of that equity to make it.
Anticipating she would soon be the sole supporter of Ed and their three children, Charlotte decided to finish getting her long-deferred degree to add to her value in the workplace. She graduated with her BA in business administration three years after Ed's diagnosis.
Ed Proves Unique
Surprisingly, Ed's symptoms developed much slower than the typical ALS patient's. Statistically, he should have been dead by the time Charlotte graduated. The reasons for his delayed decline are bound up in biology's tangled lottery. Perhaps it resulted from the strict vegetarian diet Charlotte adopted soon after diagnosis. Perhaps the daily dose of folic acid, amino acids, or the acupuncture did it. They tried so many things, no one knows for sure what helped and what didn't. For sure, Ed was deteriorating slower than predicted, and to this day no one knows why. After three years he still looked healthy and could get around reasonably well; first with a cane, then a walker. His slow-motion decline was a blessing in many ways, but would cast the pall of uncertainty over Ed and Charlotte's lives for the rest of his days.
To occupy his time and turn his considerable mental energies away from his disease and toward something constructive, Ed took on the task of researching colleges for the two older girls and helping them apply for admission and financial aid. There were brochures to send for, catalogs to digest, entrance requirements to determine, applications to submit, discussions to conduct and decisions to be made. The discussion part was tough for Ed. He had lost his voice to ALS, but he was able to bring his intellect to bear on the issues by typing out his thoughts with one finger on his recently acquired personal computer.
Erin, the eldest, did well in high school and had many choices to investigate. In 1984 she went off to the University of Pennsylvania on a full R.O.T.C. scholarship. Her hard work and Ed's research and guidance had paid off.
The Troubled Middle Child
Maura struggled in high school and figuratively dropped out. Ed and Charlotte were mystified, but, truth be told, Maura had become involved with alcohol and was experimenting with drugs. Said Charlotte: "We were so absorbed in coping with Ed's problem and how we were going to make ends meet, we forgot the kids had needs too."
Charlotte took Maura for biofeedback treatments for headaches, that in retrospect she suspects were hangovers. She tells of making an appointment for herself and Maura to see a psychiatrist. Maura didn't show up in time so Charlotte went by herself and spent the entire hour tearfully telling the story. Deeply moved, the psychiatrist never billed them for the session. They also went for family counseling sessions, that ended with the counselor suggesting there might be alcohol involved, but Ed and Charlotte insisted otherwise.
Later, Charlotte discovered two marijuana plants in Maura's room, and in an angry confrontation threw them out the window. In full-on rebellion, Maura dashed barefoot into the snow to retrieve and hide them.
In 1985 Maura graduated from high school. In spite of her behavioral difficulties, she had high SAT scores and an excellent application essay, so the University of Colorado granted her conditional admission. With serious reservations, but few realistic options, the family saw her off to Boulder. After a successful summer school session, she gained full admission. With Ed's handicap and their youngest daughter, Nanci, still at home, Maura's problems receded to the back burner.
With two girls out of the nest, Ed and Charlotte began thinking seriously about moving. Nanci, who had never known another home and was about to enter high school, was understandably cool to the idea. But the family's circumstances demanded a moderate climate and a less expensive lifestyle, so she tried to be a good soldier.
Southern California seemed the best solution. Their generous, loving friends in the tight little neighborhood of Tenafly, New Jersey, tried to dissuade them, asking, "Who is going to help you in California?" The McNeills hated to go, but given the circumstances, felt it necessary.
Charlotte saw moving day as the worst day in her life. They had sold nearly everything they owned; their home, car and furniture, but because they needed these things every day, most could not be given up until they left. That sad morning Charlotte found herself sitting on the front porch steps with a lawyer, signing important house documents, turning over car keys and registration to the buyer of the family car, supervising the pick up of furniture they had sold or given away, and conducting a walk-through for the buyers of their house. All of this played out against the background of many tearful farewells to treasured friends and neighbors.
Ed felt terribly inadequate. Unable to speak or write notes, he had to communicate by facial expression and pointing to letters on a paper keyboard to compose cryptic farewell notes.
Then came a chaotic ride to the airport. After a tardy start on a hot, steamy, New Jersey day in July, a cousin drove her own car, following Charlotte's sister's large, air conditioned Cadillac carrying Charlotte, Ed and the tearful Nanci. The cautious cousin, unable to keep up, missed light after light in the heavy traffic. Tensions, tempers, and temperatures were rising. To salvage any chance of making the airplane, Charlotte surrendered the comfort of the Cadillac and took the wheel of her cousin's hot, stuffy car. To this day, she worries that she offended her cousin, but they made the plane by the skin of their teeth and were off to their new life in Southern California.
On a previous trip, they had bought a bright, three bedroom, single story house with lots of windows in a new tract in Orange County. Charlotte recalls her official welcome to Southern California: Two days after arrival, an earthquake! She remembers asking herself: "Tell me again why I moved here?" Fortunately, only her nerves were shattered.
Ed's New Focus
Soon after moving, Ed's failing mobility permanently consigned him to a wheelchair, a very sobering development. It began in Ed a pattern of focusing on his disease as his first thought of the day and his last at night. Determined to escape this obsession, Ed decided that writing would be his salvation, and in 1989 he began a novel.
His one functioning finger limited him to hunt and peck typing, but his mind was sharp and his resolve absolute. Moreover, he had always enjoyed writing. He recalled a college English teacher paying him a left-handed compliment. Responding to an assignment, Ed had submitted a short story on which the professor had jotted a note: "Good story, if you wrote it."
Writing, not ALS, became the focus of his days. He considered it his job, his reason for getting up each morning.
The novel, that Ed never really thought he'd finish, grew to 760 double spaced pages. Ed submitted it for publication, but agents and publishers alike repeatedly told him no one would take on so lengthy a manuscript from an unknown author. With his first novel still unsold, Ed embarked on the next, and the next. At last count he had completed four.
While continuing to write, Ed kept trying to sell his work. Because he obviously had substantial talent, he got some interest but no buyers. As anyone who has written for publication can attest, writing is the easy part. Getting published is a long, difficult process, costly in time and self-esteem.
Ed's nephew, skilled in Internet matters, volunteered to construct and install a web site featuring Ed's work.
The web site http://www.ejmcneill.com describes his completed works: Mactan tells the gripping story of the escape of General Douglas MacArthur and his wounded personnel from the Philippines at the beginning of World War II. Another book, Shohet, takes its title from the Hebrew word for ritual slaughterer. Lebanon and Israel provide the backdrop for this thriller. Its chief protagonist, CIA agent Steve Brady, bent on avenging the death of a friend, repeatedly clashes with the agency. The Summer Camp is the revised, condensed version of his first novel. The action ricochets between the IRA, the FBI and Scotland Yard. Ed's fourth novel is Unkindest Cut, the tale of a hard-drinking sports writer, who, when threatened with divorce by his wife, finally sees the error of his ways and raises himself to heights he never dreamed possible.
These well-told, sophisticated stories on complex subjects represent thousands of hours of research and writing. Interestingly, in his heart of hearts, Ed doesn't care that none has sold. After his initial disappointment, he came to realize the real value to him of his writing was escape from the smothering confines of ALS. He asks rhetorically: "What other activity could I pursue that would allow me to go anywhere, be anyone, do anything I wanted on any given day?" And so he continues to write. At any one time Ed has several novels going simultaneously, thus providing him the flexibility he seeks.
Their Troubled Daughter Resurfaces
Back in the real world, it was 1994. Maura had long-since dropped out of college. In spite of frequent invitations to visit them in their new home, she did so only every few years. Once, she surprised them by bringing along her new husband, an admitted drug addict. The two lived in Boulder and seemed headed for a life of chaos. Ed and Charlotte knew this, but with Maura now in her twenties, parental influence was nil.
Maura called her mother unexpectedly one day and admitted to using both heroin and cocaine. Maura told Charlotte how tough withdrawal would be and asked her mother if she could handle helping her withdraw. Charlotte assured her that she could and urged her to come home. Maura said "OK," but she wanted to try one more thing to help her husband first.
Tension mounted as no further word was heard until, at work, less than a month later, Charlotte looked up from her desk to see a policewoman standing in front of her with tragedy etched deeply on her face. The officer told Charlotte that Maura had died the previous day in Boulder of a drug overdose.
Maura was twenty-seven.
Ed and Charlotte had her brought home for a funeral attended by close friends and family.
When asked, some ten years later, how he had coped with such a tragedy, Ed responded: "One never really gets over the death of a child, but one goes on."
Chapter Three of this book describes how society frequently overlooks the burden family caregivers bear. When a loved one is seriously ill or handicapped, the caregiver often pays as dearly as the patient.
Charlotte had a tough time in the role of caregiver. Back in New Jersey, she became the breadwinner. This put her in the difficult position of primary responsibility for Ed's care while replacing him as family provider. She found the two roles incompatible.
In New Jersey, she had tried hard to find profitable work she could perform at home on her own schedule. She got her real estate license and began the slow process of building a clientele.
Excerpted from You've Gotta Fight Back! by Dirk Chase Eldredge Copyright © 2007 by Dirk Chase Eldredge. Excerpted by permission.
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Posted August 10, 2011
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Posted August 11, 2011
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