WEST HARTFORD, Conn. – It's said that the soul is dyed by the color of its thoughts. If that's so, artist Paula Bleck's thoughts have collected into a kaleidoscopic masterpiece whose essence produces hope, courage and an unrelenting tenacity – even in the face of adversity.
Bleck, a set designer for The Hartt School at the University of Hartford, was 19 and just about to start college when her mother, Shelly Rogers, learned she was battling a disease for which there is no cure. The symptoms were baffling and incredibly unpredictable, but the diagnosis was sure. Rogers, who was 35 at the time, had multiple sclerosis.
"My mother had been in a snowmobile accident and was recuperating when she said her toes felt like 'broccoli," recounted Paula, who after college married and moved from Syracuse, N.Y., to Wethersfield. "Truthfully, at the time, I didn't know much about the disease, but over the years, we watched as her gait steadily worsened. Today, my mom uses a cane to get around."
Strangely, in 2011, just after the birth of her second child, Paula also began experiencing odd sensations. While nursing, Paula, would feel something like an electric current shoot down her spine each time she looked down at her nursing infant. At first she suspected a pinched nerve. However, when she began to feel a numbness and tingling sensation in her hands, she became concerned.
"I'm an artist," said Bleck, whose craft depends on the agility of her hands. "I need my hands. Without the use of my hands, my life's passion and work is at risk."
Bleck learned from her primary care provider that the electrical sensation she experienced is known as L'Hermitte's sign. The sign usually indicates a lesion of the dorsal columns of the cervical cord or the medulla, the lower half of the brain stem. Bleck also underwent tests for carpel tunnel syndrome, but while waiting for the test results, her feet went numb. Bleck was referred to a neurologist at Hartford's Mandell Center for Comprehensive Care, and in an ironic twist of fate, at 35 years old, like her mother, Paula was diagnosed with multiple sclerosis.
"In my heart, I knew all along I had multiple sclerosis," said Bleck. "I told my husband, 'This diagnosis isn't the worst thing on my list of possible ailments.' Still, somewhere deep down, I had known it had to be MS."
More than 6,000 Connecticut residents live with multiple sclerosis, a potentially debilitating disease for which there is no cure. Symptoms can include numbness and tingling in the extremities, difficulties with vision and speech, stiffness, and, in severe cases, complete paralysis.
There was little time for self-pity. With two young children and a fulltime job, her plate was more than full. However, there was one thing Bleck was determined to do. Diagnosed just three weeks before the 2012 Walk MS, Bleck logged on to the National MS Society, Connecticut Chapter, Web site and signed up to walk in West Hartford. She rallied her co-workers, friends and her family, offering them an incentive to get involved; help her raise at least $2,000 and she would dye her hair pink.
With her network of friends and family on board, she still had one thing left to do.
"Our team needed a name and I told my 3-year-old son, Jonathan, he could name the team," said Bleck, who says Jonathan has a rich imagination. "He loves pirates and he is always building robots, so I wasn't at all surprised when he yelled out, 'Pirate Robots.'"
Less than a year after her diagnosis, Paula's MS is for the most part under control with the use of medications whose job is to reduce exacerbations. Her husband, Aaron, is a technical director at Hartford Stage. Too often his hours are long, and the responsibility of the household rests alone on Bleck's shoulders.
"Paula is an inspiration to me," said Aaron, who admits that when he first learned about Paula's MS he worried for their future. "Despite her illness, Paula keeps it all together – her job, the kids, the house – everything. Yes, it was daunting news at first. But Paula's doctors went a long way to alleviate our fears. Now, it's just about living life as fully as possible."
The Pirate Robots are ready to step out for the 2013 MS Walk. They've upped their fundraising goal and plan to increase the number of people stepping out with them this year.
"It's important that we empower ourselves," said Paula, whose career coloring and shaping the imaginary worlds of thespians also helps to keep her living in the here and now. "Empowerment comes through action and involvement. We must keep science moving forward toward a cure. I hope to see a cure in my lifetime, even in my mother's lifetime."
Bleck, her family and friends will step out this spring with thousands of other Connecticut residents for the 2013 Walk MS, presented by Travelers. The event features 12 walk sites, including Cheshire, Clinton, Danbury, Enfield, Litchfield, Manchester, New London, Simsbury, Stamford, West Hartford, West Haven and Westport. Each site offers fun-filled activities for the entire family. Participants can choose between a 2.5-mile or 5-mile route. Lunch is provided compliments of Subway Restaurants and Coca-Cola. Registration is currently open and available at www.ctfightsMS.org.
"We come from hardy stock," said Paula's mother, Shelly. "When Paula was first diagnosed, I worried. But I know we will both be fine. We refuse to give in to fear or self-pity. I am very proud of Paula. She has taken the good and the bad and is creating something beautiful for her family."
The 2013 Walk MS, presented by Travelers, takes place Sunday, April 21. For more information on Walk MS or to register, visit www.ctfightsMS.org
Submitted by Karen E. Butler, National MS Society, Connecticut Chapter
Photo- Paula Bleck, a set designer for The Hartt School at the University of Hartford, works on a set for an upcoming show at the school.
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