About Edward J. Mc Neill

By Brian Mc Neill

After being diagnosed in late 1979 with an illness he'd never heard of, Ed sought a second opinion. In early 1980 a top neurologist at Columbia Hospital in NY announced to his wife, Charlotte, "Your husband has two, maybe three, years to live." She had to tell Edward he'd contracted the malady that famed baseball player, Lou Gehrig, died of in the early 40's -- amyotrophic lateral sclerosis (ALS), more commonly known as Lou Gehrig's disease.

ALS is a neuro-degenerative disorder that results in muscle wasting, paralysis and death in short order. British physicist/author Stephen Hawking (one of the lucky? 1%) has had it for about 40 years. If you've seen pictures of Hawking, you'll understand how crippling ALS is; on the other hand, if you've read his work, you'll understand that the mind is left untouched.

In Ed Mc Neill's case, he continued working as Corporate Secretary of the American Spice Trade Association until February 1982. Weakness, speech and walking difficulties were progressing rapidly. He began to arrange his affairs to prevent problems for Charlotte and their three daughters when he would no longer be there for them.

Then the wait began. ALS was the first thing he thought about upon waking and the last thing before falling asleep. He waited, waited and waited some more, but the inevitable didn't happen. What happened was more conspicuous weakness, speech and walking difficulties. To take his mind off his health problem and make himself useful, he decided to help his two older daughters prepare themselves for the SAT's and get into college. It was a successful venture in two ways, he forgot about his ALS struggle, and the girls eventually went off to college--University of Pennsylvania and University of Colorado.

In 1986, with his remaining daughter about to enter high school, the family moved from northern New Jersey to Southern California for financial reasons and the weather. Shortly after moving, Ed was forced to use a wheelchair. The disease began to occupy his mind constantly again. He had to find a new diversion. In 1989 after several more confirmations of ALS from top specialists, but apparently not following the typical course of the disease, he decided to write a novel. He'd wanted to write a novel ever since his college days as an English major.

Almost from the start, his hands didn't function well enough to type. By 1989 he couldn't write with a pencil. In late 1989, still looking deceptively healthy although with greatly restricted movement, he invested in a computer and began his novel, typing with one finger. He never expected to finish, but at least it would take his mind off the ALS. It did, and once more an active mind seemed to cause a slow down in the disease's course. After 1-1/2 years of pecking the keyboard, he had written 760 double spaced pages--the novel was finished. The National Writers Association's reviewer called his story about the IRA, a "Barn Burner" but declined to send it to its list of agents because "No publisher would handle so lengthy a novel from an unknown." He has since condensed it. In the meantime, he wrote a shorter novel covering an event in WWII. He has since finished a third and fourth novel and has several in progress. At present, he has ideas for at least 20 more novels.

Mc Neill understands the search for agents and publishers is very frustrating and he feels it would take too much time and energy from the writing he loves. His writing time is limited to, at most on a good day, three hours.

Since his disease seems to have stopped progressing, he hopes writing, researching and general involvement in the process will continue to delay what now seems less inevitable. He says, "Writing frees me from the shackles of ALS, allowing me to go vicariously wherever I want, do whatever I want, and be whoever I want." And, he adds, "That's something few people are lucky enough to experience."

Mc Neill holds two degrees, a BA in English from the University of Dayton, and an MBA in marketing from Edward Williams College, Fairleigh Dickinson University. He has a diverse background: a copy boy at the same newspaper where late humor writer, Erma Bombeck, began her career; Broadway stagehand; department store main floor supervisor; advertising and public relations copywriter; partner in a small ad agency; two positions as an association executive; and the job of which he is most proud, U. S. Marine Corps company commander.

Through his varied employments and military service, Ed has met many notables, including: political notables, numerous board chairmen and presidents of our largest food industry firms, many actors and actresses and just plain folks all over the world.

By the way, Mc Neill has now lived to witness two of his daughters' college graduations and weddings and is the proud grandfather of 4 boys, 24, 21, 14 and 12. One thing he regrets living to see was the death of his second born daughter in 1994. He calls it, "An experience vastly more devastating than living with ALS."

Mc Neill feels there's a non-fiction book to be made of his story and he will write it the moment he is cured. He insists it have a happy ending. The way things are now going with advances in medical technology, it probably will.

Edward's Story Featured

Dirk Chase Eldredge has written a book, "You've Gotta Fight Back," subtitled Winning with Serious Illness, Injury, or Disability. Edward's battle with ALS is featured as the first of many profiles and emphasizes the importance of attitude in long term survival. It is available through the publisher at www.LovingHealing.com, B&N.com or Amazon.com.

Edward and Charlotte McNeill
Edward and Charlotte McNeill

1969 - Before ALS

1979 - Year diagnosed with ALS

1989 - Ten years with ALS

2002 - Wedding of youngest daughter