Living with ALS Disease

It was over ten years ago when Mark Rosen, a high-powered financial consultant in Massachusetts, began to feel his legs stiffen as he walked the cold streets of New York City. When a friend noticed Rosen’s speech beginning to slur, the prominent professional attributed it to working too hard or drinking too much wine at dinner. But when the symptoms began to worsen, and he noticed his right toe slightly dragging, Rosen called on a neurological brain specialist who eventually diagnosed him with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease.

ALS affects a person’s motor neurons and voluntary muscles, and eventually causes all of the body’s muscles to deteriorateALS affects a person’s motor neurons and voluntary muscles, and eventually causes all of the body’s muscles to deteriorate. Because it is progressive, life expectancy after diagnosis is usually three to five years. Rosen, however, has already lived more than double that. Through speech technology and remote computing, Rosen still consults part-time and spends extensive time with his children, Zelda, age 15, and Teddy, age 12. Though he can no longer walk or speak, and needs assistance with many basic daily functions, he is determined to continue living as he would have before his diagnosis.

In addition to his laptop, Rosen’s body language, facial expressions, personality and emotions help him convey messages. Because he is so in touch with his inner self and soul, he is able to connect with those around him in ways that many others with his symptoms cannot.

“I am confident now that my children’s characters and lives will be enriched, deepened and strengthened by how we are dealing with the challenges of my disease. I have learned that wisdom is not thinking thoughts that weaken me, and that the soul of parenting is sacrifice,” he says. “While I grieve and let go of what I have lost, and can no longer live all my dreams as a dad—nothing, not ALS, not anything, can take away my ‘loving attention’ [for my children], and that’s what kids need most of all.”

Rosen finds that ALS has enabled him to recognize and value life’s gifts in deeper ways. “Being a father has been, hands down, the best achievement of my life. I now define ‘success’ as being loved and respected by the circle of people with whom I live and work,” he says. “Life is not about money, power, ambition, popularity and fame. I get that all those things are nice to have and to earn by our efforts, but those are like desserts. The main meal of life is about love, helping others and achieving your potential in pursuing your dreams.”

He now finds it easier to focus on what’s really important, and appreciates the need to grieve loss and embrace the “sweet sadness” of letting go. In fact, he attests that he is currently “mentally stronger and deeply happier than [he] has been in [his] entire life.”

Rosen finds that ALS has enabled him to recognize and value life’s gifts in deeper waysAnd Rosen continues to use and develop his business abilities, founding Mark Rosen Incorporated in 2007 to offer management consulting and training to businesses and organizations nationwide, all of which is done through computer communication.

He also finds his identity as a Jew, and the Jewish traditions he follows, a source of comfort and inspiration. At moments, Rosen finds that he needs to actively choose to live on, deciding whether or not the pain and suffering are “worth it.” But every time he decides to “hold on to the certainty of the precious in life’s moments,” he finds it is still worth saying “yes” to life. He would also consider it arrogant of himself to consider giving up, because his existence doesn’t belong to him but to something higher. “So who am I to do anything less than to live to the max?” he asks.

He consciously passes on Judaism and its messages to his children, and seeks to make each moment a memorable one for them. The most meaningful times of Rosen’s recent years include when his son, Teddy, marked his bar mitzvah and put on tefillin for the first time. Though he couldn’t verbalize his feelings at the time, his love and pride conveyed to his son how special and historic that moment was.

Another memorable moment occurred when Rosen successfully recited the blessings for affixing new mezuzahs in his home, with his children by his side, despite the great exertion that it required to utter the words.

Those around him view Rosen as a proud Jew with passionate feelings for his Jewish identity and Israel.

Despite his own challenges, he is committed to helping others. He stands out as someone who is very much aware that he has been given a mission, and actively seeks to fulfill it.

“Whenever I meet Mark, I walk away inspired from the way he continues his life despite so many big bumps and obstacles,” said a close friend of Rosen. “Mark always helps put life and its happenings into perspective—just by the way he lives his life.”