Every day is Independence Day for my niece, Molly. You won’t find her wearing red, white and blue, igniting ear-splitting fireworks, or eating way too many hot dogs on a daily basis, but you will find her celebrating independence by living her life with courage, grace and determination.
At age 31, Molly has earned a college degree in Public Relations and works thirty hours a week maintaining a database at an IT consulting company in the suburbs of Chicago. She had a ball on her last girlfriend trip to Nashville, would live at Starbucks if they had rooms, and does needlepoint while singlehandedly boosting the Nielsen ratings for MSNBC.
Family lore has it that she once drew a crowd at a family wedding while cutting a rug with a certain uncle. Dazzling the audience with arms and legs flying through the air, making each catch just in the nick of time, one could have mistaken them for Cirque du Soleil performers if it wasn’t for the dance floor and the jitterbug beat.
Molly’s ongoing celebration of independence started when she was born with cerebral palsy and Marfan syndrome, a genetic disorder that affects the body’s connective tissue and other organs. Standing at six foot one, Molly’s tall and thin body type and long arms, legs and fingers mirror some of the physical characteristics most often related to Marfan’s.
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The cerebral palsy makes her slurred speech sometimes difficult to understand for those who don’t speak to her on a regular basis and her knees cross like scissors as she walks appearing less steady than she actually is. She fatigues easily, struggles with learning disabilities, and in her words, “If I let tiredness control my life, I honestly feel like I would never do anything but sleep.”
But she doesn’t just sleep. Molly’s commitment to independence enabled her to go away to Loras College in Dubuque, Iowa, far from her family and the support network she knew best. While at first it felt like “jumping out of an airplane and really really hoping I could open the parachute,” after a while, she realized that not only had she landed safely, but she had also created a whole stockpile of parachutes in the form of lifelong friendships.
Despite her difficulty with organizational skills and other learning disabilities, Molly didn’t let that stop her from flying alone from Chicago to Miami to give the closing speech at a gala for Best Buddies, an international advocacy group for people with intellectual and physical disabilities. She was way out of her comfort zone when she had to figure out what to do with her free time at the hotel in-between commitments and eating alone at a burger joint in a new city felt strange and awkward.
Misplacing her written speech shortly before she had to go on did nothing to relax her, but a new copy was found and one more accomplishment on her list of independent achievements was born.
Molly also doesn’t let her physical challenges or speech impediment stop her from taking acting roles in productions, helping with marketing or serving on the Board of Directors of Tellin’ Tales Theatre in Chicago. But it’s the getting to Chicago by herself on the half hour train ride to the city to rehearse or to meet a friend at a bar when Molly feels the most independent.
While she intellectually knows that she may be physically capable of doing many things on her own, the constant struggle with energy and ongoing effort to figure out how to approach the next roadblock takes its toll. Even though she sometimes has to force herself to be social and engaged, she’s learned from experience that being independent for her is all about problem solving and saying yes to opportunities.
This Fourth of July, I’ll probably wear something red, white and blue, take in the Tacoma Freedom Fair to see the fireworks and definitely eat way too many hot dogs. But I’ll also think about how independence is not just about our nation’s history. It’s also about how people like Molly demonstrate that same American spirit by fighting to secure her independence every day.
Ted Broussard is retired after working as a counselor and administrator in community and technical colleges. A downtown Tacoma resident, he is one of six reader columnists writing for this page. Reach him by email at firstname.lastname@example.org