VERNON, Conn. – Jessica Rowley grew up in Vernon, a small municipality but hometown to notables like four-time Super Bowl champion Bill Romanowski, Senator and onetime governor of Virginia Mark Warner, and African American still life painter, Charles Ethan Porter. Raised by a single mother, as a teen Rowley looked forward to a bright future in which she, like those who came before her, could chase after her dreams.
After finishing her education, Rowley eventually went on to marry. The newlyweds moved to Londonderry, a tiny village in Vermont whose population, according to a 2010 census, is under 1,150. Ironically, despite the small populace, over the years Rowley befriended six women, all of whom battle multiple sclerosis, at the time a disease she knew little about.
In 2008 Rowley gave birth to her only child, a daughter. However, the joy of motherhood was short-lived. Just three days after giving birth, Rowley was back in the hospital. Her balance was off and her legs seemed to be giving out on her. The then 33-year-old new mother felt a strange tingling sensation coursing throughout her body. She underwent a battery of tests, including a spinal tap. Soon, Rowley was diagnosed with multiple sclerosis, a potentially debilitating disease for which there is no cure.
“I was scared – petrified,” said Rowley, 38. “I didn’t know what was happening to me. All I knew was that my life was never going to be the same.”
More than 6,000 Connecticut residents, like Rowley, battle multiple sclerosis, an autoimmune disease of the central nervous system. Symptoms can include numbness and tingling in the extremities, difficulties with vision and speech, stiffness, and, in severe cases, complete paralysis. Women are three times more likely than men to be diagnosed with multiple sclerosis. Researchers believe both genetics and environment play a role in the diagnosis of the disease.
Many people initially diagnosed with MS receive treatment and regain function, albeit not always to the same level prior to the exacerbation. But Rowley’s MS did not seem to respond to treatment. She became so ill and so incapacitated that her mother, Sheila Davis, brought her back to Vernon and found her care with Peter Wade, M.D., medical director of neurology at the Mandell Center for Comprehensive MS Care, located in Hartford.
“As it turned out, I was allergic to the medication first prescribed to treat my MS,” said Rowley, whose daughter, now 5, will begin kindergarten in September. “I had become so very ill. I am incredibly grateful that my mother was able to find me better care.”
Today, just five years after her initial diagnosis, Rowley is barely able to walk, even with the help of a walker. She battles constant tremors on the left side of her body, and she cannot maneuver stairs without assistance. Her anguish is palpable and raw.
“I’m being robbed,” she said, as tears trickled down her cheeks. “I’m losing more and more freedom. I’ve lost a great deal of mobility, and with it, more of my independence.”
The National MS Society, Connecticut Chapter, in collaboration with generous donors and local businesses recently, installed a stairlift in the family’s home. Once unable to move unaided between the upstairs and the downstairs, Rowley can now pop down to the kitchen in the middle of the night if the mood strikes her.
“The evening after the stairlift was installed, I was awakened to the soft sound of the motorized chair,” remembered Davis, with a chuckle. “I asked her, ‘What are you doing so late in the night?’ ‘I’m going to get a snack,’ Jessica replied, ‘because I can.’”
Rowley has a long road ahead. Maintaining her level of ability seems daunting some days, but she finds help through a new friend. Elizabeth Norman, 26, has a 5-year-old daughter who attends the same pre-school as Rowley’s daughter. Rowley, who leans on Norman for physical assistance, has become an emotional support for Norman, who over the years has experienced her share of disappointing friendships.
“Meeting Jessica has changed the meaning of friendship,” said Norman, whose emotional wounds have begun to heal through her relationship with Rowley. “Knowing I can help Jessica has strengthened my belief that I’m here for a reason; I’m needed. We are inseparable now.”
In defiance to the losses she’s experienced as a result of her MS, Rowley is committed to moving forward with her life. She credits her mother with providing the motivation to press on.
“My mother is everything to me,” said Rowley. “If it weren’t for her, I would not have received the specialized care I need to treat my disease. My mother has sacrificed so much to support me and my daughter. I’m also thankful for the National MS Society, the Mandell Center and the many other organizations which are helping me stay connected and informed. Knowing that there is support for me and my family provides me with great reassurance. ”
In J.K. Rowling’s book, Harry Potter and the Sorcerer’s Stone, she writes, “It does not do to dwell on dreams and forget to live.” Rowley’s early dreams may not come true, but she lives life as fully as possible, embracing family and friends, finding greater meaning in building relationships and encouraging her daughter’s dreams for the future.
For more information on multiple sclerosis, its effects and the many ways the National MS Society assists people living with MS, visit www.ctfightsMS.org.