Marc Levinson of Cobden faces life-changing illness

By Emily Ferré

(Note: Emily is one of Marc Levinson's daughters.)

Four-and-a-half years after diagnosis, Marc Levinson’s entire life has been transformed by a debilitating disease.

Even so, he still finds reasons to live every day. There will be a benefit to raise funds for Marc’s care on Saturday, Nov. 10, from 6 p.m. to 10 p.m., at St. Mary’s Church parish hall in Anna.

Admission is $12 at the door or $10 in advance. For seniors and students, admission is $10 at the door or $8 in advance.

A hog raffle and silent auction also are planned.

Advance tickets and raffle tickets are available at El Jalapeno in Anna, Alto Vineyards in Alto Pass, Rustle Hill Winery near Cobden and the Cobden Barber Shop.

Saturday's event is taking place with the help of friends and family, local businesses and members of the First Presbyterian Church in Cobden.

Marc Levinson, 61, of Cobden, suffers from a rare disease called amyotrophic lateral sclerosis, ALS, more commonly known as Lou Gehrig’s disease.

Lou Gehrig was a famous New York Yankees baseball player who had to retire in 1939 due to the illness.

ALS causes the neurons that move voluntary muscles to slowly weaken and die.

A person with the disease gradually loses the ability to move, eventually becoming entirely paralyzed and even losing the ability to breathe independently.

When Marc first was diagnosed with the disease in April 2008, he already had symptoms.

“It started with weakness in my left foot, which gradually spread to weakness and paralysis of all my muscles from the neck down,” he said.

Usually, the progression of the illness is gradual, but in Marc’s case, pneumonia caused complications.

“About two years ago, I had sudden respiratory failure, which resulted in emergency admission to Barnes Jewish Hospital in St. Louis, where I was treated for five weeks. During that time, I required a tracheostomy, so that the ventilator could breathe for me through a tube that goes into my throat,” he explained.

Breathing isn’t the only challenge Marc faces. During his hospital stay in 2010, he also required a feeding tube.

“Difficulty swallowing and the ventilator make it impossible to eat or drink normally. All nutrients are provided through a tube directly into my stomach,” he explained.

Before his illness, Marc led an active lifestyle. He worked at Choate Mental Health and Developmental Center in Anna as a psychologist and administrator for 18 years.

He raised two children, Emily Ferré and Elizabeth Levinson, and two step-children, Sarah and Jacob Wolfson.  

At the time of his diagnosis, Marc enjoyed gardening, caring for horses, and strolling on the beach during vacations with his wife, Ruth Ann, he said.

His life is dramatically different today.

“Because of my paralysis and the need for continuous mechanical ventilation, it’s difficult for me to communicate," he said.

"It’s very frustrating to be totally dependent upon other people to recognize and meet every single need that you have, even as trivial as shooing a fly away from your face. While I’m unable to move or even breathe without mechanical assistance, I still have my vision, hearing, sense of touch, intellectual abilities, and sense of humor.”

Marc no longer leaves the house. With the help of others, he often gets out of bed into his wheelchair. To pass the time, he says, he enjoys watching movies, the news and football. He also likes watching cooking shows.

With the help of a caregiver, he likes to cook, though he cannot taste the food himself. He enjoys listening to books and music, especially classical music. He also appreciates “the company of friends who come over to visit,” he said.

Marc depends on the support of others to cope with his illness.

“My positive quality of life has been maintained by the love of my wife and my other family members and my friends and my church community,” he said.

Marc is a member of the First Presbyterian Church of Cobden.  

“I am very grateful to Pastor Anette Westermark and the members of the congregation for coming to my house for weekly Bible study,” he said.

Members of the congregation also bring food to the house and spend time with Marc each week. “The visits lift my spirits,” Marc explained.

Marc requires constant care because of the tracheostomy and his paralysis.

“My life literally depends on other people being with me 24 hours a day, and I’ve been blessed that this time has been shared with loving family members and wonderful caregivers,” he said.

He understands that this disease has affected his family as well as himself.

“My wife stood by me and supported me through every aspect of this long decline of this fatal illness, which has taken a dreadful toll on her, too,” he said, with tears in his eyes.

Ruth Ann, originally of Vienna and currently a physics and chemistry instructor at Shawnee Community College, spoke about the responsibility of taking care of her husband.

“I take one minute or hour at a time. I don’t think ahead of time, try not to. I have times of high stress. It’s not always easy. It’s many times very difficult to maintain a good attitude. I try to do that as much as I can for Marc. Living with this disease is very difficult.”

The couple maintains their closeness, even through all the challenges they face.

“Family members, friends and caregivers are touched by our ability to enjoy telling humorous stories about our past and other signs of our continuing love and affection for each other,” Marc said.

“Ruth Ann always comes in and gives me a kiss before she goes to bed or leaves,” he added.

Like her husband, Ruth Ann relies on the help of others.

“I’ve been really blessed to have such good caregivers to help me. I couldn’t have done it without all the help I have,” she stated.

But the care is very expensive.

“More than half of our take home pay gets spent on care. We’ve been lucky, as far as having good insurance to pay for medical expenses…and Medicare, but they don’t pay for caregivers,” said Ruth Ann.  

From putting bills on hold to dipping into retirement savings to putting off retirement, the financial sacrifices have been many.  

The fundraiser for Marc Levinson planned for this Saturday in Anna will raise funds to help cover the costs of care.

A spaghetti dinner will be served, and Ruth Ann will join fellow members of two musical groups, the Blackberry Blossoms and the Free Range Chicks, to provide live entertainment.  

Ruth Ann has been playing with both groups for several years. Performing with these two musical groups at the fundraiser allows her to use her musical talents to help her husband.

Living with ALS has transformed Marc Levinson’s life. Asked what he has learned from the experience, Marc said it has taught him “how much I’ve been blessed by the love and care of family members and friends and to pay attention to God’s many blessings that fill our lives every day and that we may take for granted.”

He mentioned, for example, the “wonder and awe that I experience if I pay attention to the changing colors of the fall, as they reveal the continuing cycle of nature.”

He also says he has learned that it is important to “let God’s will be done rather than focusing primarily on one’s own individual and sometimes selfish goals.”

That includes “accepting not being able to do things for yourself or other people and accepting others doing things for you,” he explained.

Marc gives this word of advice to everyone: “Live and enjoy every day to the fullest extent possible.”