From Roxbury, With Hope

From Roxbury, With Hope
By: Abigail Leab Martin
December 1, 2005
Litchfield County Times
www.countytimes.com

It is a marvel when a person publicly carries out an act of courage, such as running into a burning building to save someone. But there are quieter acts of bravery that are not as noticeable, which we tend to take for granted. Anyone who has had a loved one face a debilitating disease knows the valor that those afflicted can display in the face of confronting their own mortality. But what about the person who cares for them, trying to ease their suffering before enduring loss? That is a truly unacknowledged kind of courage.

It is also a strength that Susan Hufford seems to have in abundance. After losing her husband of more than two decades to the neurodegenerative disease Amyotrophic Lateral Sclerosis (ALS, more commonly known as "Lou Gehrig's disease), the part-time Roxbury resident could have crumpled or she could have become bitter.

Instead, she became even more determined to help raise awareness of ALS, and to raise funds to combat it. Her first step was to take her talents as a writer and complete a book that her husband, the Emmy-winning actor Michael Zaslow, began writing during his illness. The result, "Not That Man
Anymore," is a chronicle of Mr. Zaslow's journey as he fought to defeat ALS, and it is both touching and inspirational.

The book is also beneficial, literally, when it comes to the fight against this disease. Twenty-five percent of the proceeds from sale of the book, published by iUniverse, go toward ALS research. On Dec. 11, between 1 and 3 p.m., Ms. Hufford will hold a book-signing at the Hickory Stick Bookshop in Washington Depot, and she is hoping the event will assist her in continuing to create awareness of ALS and continuing to raise funds for research.

It was her desire to perpetuate her husband's words and work that led Ms. Hufford to finish the book. The decision to complete it was not one lightly undertaken.

"It was a real struggle for me because I knew it had been his intention to write the book. In the beginning I was filled with guilt-'This is not really my book'-but then the writer in me could see that this was absolutely the way the book needed to be," she recalled, indicating the book's unusual but compelling structure. Ms. Hufford has interwoven her husband's writings with her own perspective of events as they unfolded, as well as beginning each chapter of the book with recollections by friends and neighbors.

And while it is a thorough chronicle of how ALS affected Mr. Zaslow and his family over time, the book is never depressing, though there are moments that are quite moving and others that make one bristle over the lack of compassion and understanding of some members of the medical community. As its author noted, "This is not a book about disease. It is about the journey but it is really about love and hope."

That's remarkable given that this disease, which attacks nerve cells and pathways in the brain and spinal cord that control voluntary muscle movement, leaves its sufferers unable to initiate and control muscle movement, meaning that they eventually cannot speak, swallow or, finally, breathe. ALS tends to strike suddenly, brutally and without warning. It is also often hard to diagnose, and in some cases, those afflicted seem to be told they are imagining things and that there is nothing wrong-which is especially disheartening if they know that something is indeed very wrong.

Even though one enters the book knowing its conclusion, it is still compelling because the reader goes along every step of the way with the couple as they attempt to find the cause of Mr. Zaslow's symptoms, and then try to figure out how best to defeat ALS. "I wanted it to read like mystery even though we know the ending," Ms. Hufford explained, "because the disease is like a mystery."

ALS can manifest in many different ways. In Mr. Zaslow's case, he first noticed a slight something in his voice when he was working on lines for his role as the rascal Roger Thorpe on the daytime soap opera "Guiding Light."

In September 1996 he found he had terrible trouble pronouncing the words making up the phrase "I'm not that man anymore," a line that would proveprophetic and that would eventually serve as the title of Ms. Hufford's book.

Gradually, Mr. Zaslow's speech became increasingly slurred and incomprehensible, which first led to the loss of his job and then the loss of his voice altogether. Once robust and athletic, he became achingly gaunt. Doctors offered a variety of opinions, until finally, in the fall of 1997, he was properly diagnosed. Through it all Mr. Zaslow never stopped looking for treatment, looking for hope or advocating the defeat of the disease through research. He was pushing for a cure even without the ability to speak.

What Ms. Hufford has done with this book is a most loving thing-she has given her husband back his voice. It resonates quite clearly across these pages, strong, brave and even humorous at times. And it is only reinforced by the recollections and thoughts of his loved ones. The result is an unusual and powerful structure that provides a deeper understanding of what ALS is, and what people with ALS and their loved ones go through.

"I don't think there is anything else that has done disease in this way. The thing about disease is that it is so interconnected," Ms. Hufford commented. "Using the chapter headings of other people's views-the fact that Blythe Danner hung up on him two times [because she could not understand what he was saying and thought it was a prank caller]-I think those are the things that make it a different experience, to my mind, that make something positive out of it."

According to Ms. Hufford, Mr. Zaslow was buoyed by the reaction of his fans, especially as the Internet allowed him a means of communication. The reaction to a piece on him on the ABC news magazine "20/20" was tremendous, as was the response to his return to daytime in his former role as David Renaldi on "One Life to Live." The writers had the character battling the debilitating disease, and Mr. Zaslow was able to introduce a larger audience to the existence and struggles of ALS.

According to Ms. Hufford, that is also why her husband wrote. "I think his purpose in the book was to put a face on the disease and give insight not only to his own personal suffering and humiliation, but to do it to light fires under people," she said.

That is also why she has become more deeply involved in working with the ALS Association, serving as a trustee for the national organization dedicated to research, outreach and advocacy. According to Ms. Hufford, it is an organization that has been transformed to a dynamic and effective body. "The
ALS association has changed so much," she emphasized. "It was spearheaded by Michael's journey with ABC, them putting his message out there. We did the first Advocacy Day in Washington. We have raised over 300 percent more dollars for research than when Michael first got the disease."

Ms. Hufford also commented that there is going to be a national registry for ALS sponsored in the Senate by its minority leader, Senator Harry Reid of Nevada. "That is going to give us information," she noted. and that information should prove quite valuable to solving the enigma of ALS.

Her activism does not cease there. She co-founded ZazAngels with her husband and their friends in January 1998. As its president, Ms. Hufford has produced several theatrical galas, including a memorable performance of the A.R. Gurney play "Love Letters" in Washington that starred James Earl Jones and his wife, Cecilia Hart. These productions have raised more than a million dollars for research.

In addition Ms. Hufford, who is also a practicing psychotherapist, has continued to work closely with the ALS Association of Greater New York. "They fund symposiums and invite various scientists to attend," she noted, describing a sizable gathering that took place in Cold Spring Harbor [New York] this fall.

"There were researchers, top scientists from all over the world, maybe 15 or 20 of them. They did not get paid. They got room and board and they came. They did as much brainstorming over dinner and breakfast as they did in the meeting ... . I was blown away that seven years later we were able to command this kind of scientific talent. And it is for a few reasons, it is because ALS is so complicated that it represents an amazing challenge to scientists. It is also because many of us feel-scientists as well as others - the link between Alzheimer's, Parkinson's and ALS is so strong."

The author was particularly excited to note that Ian Wilmut, the Scottish scientist who cloned Dolly the sheep, has "made our disease his top priority."

Within the book, Ms. Hufford noted that Mr. Zaslow was very optimistic about stem cell treatment, which he was considering undertaking in the Bahamas near the end of his life in December 1998.
Stem cell treatment is something that Ms. Hufford feels "holds great, great promise" for ALS sufferers. She added, "Thank goodness that New Jersey and California are moving ahead. What is true is that it will happen regardless of what our government says. And not the least is that we will as
a nation be way behind."

Sitting in the couple's kitchen in Roxbury, Ms. Hufford observed that while it varies, she sometimes feels closer to her husband when she is there. "He loved this house. We were married in the side yard. We laid the tiles in the bathroom," she recalled. The couple first moved to Roxbury in 1975. They closed on the house in March and were married there that July.

For further information on the book, see the Web sites www.notthatmananymore.com or www.michaelzaslow.com . To learn more about ALS, see www.alsa.org .

©Litchfield County Times 2005