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 Life Doesn’t Have To Be Picture Perfect For This Shoreline Woman

By Caitlin Finn, National MS Society Public Relations Intern

BRANFORD, Conn. If art imitates life, then Marilyn Bergen’s life was almost picture perfect. Her home is the ideal setting for retirement, nestled on the water’s edge in the town of Branford, just a few miles from where she grew up in Guilford, Conn. The backdrop,  peaceful and serene, is emulated in the tranquil paintings adorning the walls of her quaint New England cottage, allowing one to completely escape the trappings of day-to-day existence.

Yes, life was picture perfect for Bergen but then reality, as it often does knocked on the door. After experiencing a persistent cold with flu-like sMarilyn Bergenymptoms, Bergen awoke one morning to find herself extremely weakened on the left side of her body, she knew something was seriously wrong.

Initially, doctors labeled it a virus of unknown origin, but only one year later Bergen returned to the hospital after experiencing major fatigue and vision problems. Doctors determined she was suffering from optic neuritis. Another six months passed before Bergen experienced her third exacerbation of severe fatigue. At that point she was scheduled an MRI, which led to a diagnosis Bergen with multiple sclerosis (MS). Over the course of little more than one year, Bergen’s once nearly perfect life had become anything but.

There are more than 6,000 Connecticut residents, like Bergen, battling the mystifying effects of multiple sclerosis. The cause is unknown, and there currently is no cure. According to statistics, multiple sclerosis affects more women than men three times as many. The disease is unpredictable. It affects each person differently. Symptoms can include tingling and numbness in the extremities, fatigue, changes in vision, imbalance, pain, speech impairment, and, in some cases, complete paralysis.

Despite her prognosis, Bergen refused to be defeated and rallied with the support of friends and family. One month after her diagnosis, friends visited and planted trees at her home as an ever-present testament of their care and support. For Bergen, the gesture also served as a reminder that peace and tranquility remained nearby.

“I remember feeling disheartened,” Bergen related, as she gazed out a nearby window at the serene beauty off in the distance. “It was the first time in my life that I was not able to take part in something, but the way my friends and family were there for me is a memory I will hold onto. Their support has taught me to be grateful, to appreciate the fragility of life, and to not take anything for granted.”

Bergen did her best to maintain the same lifestyle she enjoyed before her diagnosis. She turned wholeheartedly to her passion for music and literature, finding comfort and strength in the wisdom carefully recorded between the pages of her favorite narrative. Her music collection rejuvenated her spirit, body and mind. In these moments, Bergen knew all was not lost and there would once again be moments in time when life would be close to picture perfect.

Bergen suffers from relapsing-remitting MS and she considers herself lucky in that respect. Relapsing-remitting MS is defined by flare-ups, also called relapses, attacks, or exacerbations that are followed by partial or complete recovery periods (remissions) free of disease progression. She has retained her ability to read with the aid of spectacles, and, although her muscles are stiff as a result of the effects of MS, she is still able to walk after more than 15 years with the disease.

Soon after her diagnosis, Bergen contacted the National Multiple Sclerosis Society, Greater Connecticut Chapter. As she learned more about the organization, its mission and goals, she felt compelled to join in the fight. In 1991, just a year after she was diagnosed, she participated in her first MS Walk event in West Haven, Conn.

Since that time, Bergen has stepped out every year; sometimes walking alone, with friends, or with her two dogs, but nevertheless walking. 

“Although I can’t go as far or as fast as some of the other walkers, I recognize the importance in participating while I can,” explained Bergen. “It’s still hard to ask for contributions, but it has become easier after realizing it’s not about me, but about the larger project of finding a cure. Every step and every dollar brings us closer to finding a cure and I have to thank my colleagues, friends, and family for their generosity to this cause over the years.”

Bergen has never been one to quit or give up without a fight, a quality that she has always attributed in part to her faith. Prior to her career as an administrator in higher education, Bergen was a member of the community of the Sisters of Notre Dame de Namur in New York. Always accustomed to caring for others, she is still learning to relinquish the role and allow people in turn to care for her.

“Every day offers something new and different,” said Bergen. “Tomorrow I could wake up and not be able to walk. You just don’t know what’s around the corner so you live each day to the fullest taking advantage of every minute.”

After turning 55, Bergen retired from her position as a director of academic advising for Gateway Community College in New Haven where she had worked for nearly 20 years.

She is currently focusing on living one day at a time; grateful for each day she has knowing of the uncertainties of tomorrow. And with her free time, Bergen is preparing to lace up, along with more than 7,000 other Connecticut residents, for the 2007 Travelers MS Walk, presented this year by UnitedHealth Group, which will be held Sunday, April 22.

One of the most important things Bergen has learned since her diagnosis has been to recognize that, contrary to peoples’ desires and expectations, art most likely can never truly reflect life, and, although it may come close, life most likely will never imitate art.

“Living isn’t about being perfect or doing things perfectly, but rather about living your days to the fullest (and) ‘carpe diem’!” Bergen summed up.

The 2007 Travelers MS Walk, presented by UnitedHealth Group and hosted by the Greater Connecticut Chapter, will be held Sunday, April 22, at eight sites across Connecticut and at a ninth, Woodstock, on Sunday, April 29. The event takes place rain or shine. To learn more about the walk event, tune to WTNH News Channel 8, My TV 9, 97.7 WCTY, 96.5 TIC and 100.5 WRCH for the 2007 Travelers MS Walk, visit www.ctfightsMS.org or call (860) 714-2300.


Karen E. Butler
Vice President of Communications
Greater Connecticut Chapter
tel +1.860.714.2300
cell +1.860.997.4487


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