Two spunky women creatively cope with multiple sclerosis.
Mary Brubaker’s first task each morning is an inventory of her own body, particularly the left side. On a bad day, her left leg can feel cold or tingly, which comes with especially poor coordination. She may have less control over her hands, have trouble thinking of words or have battle fatigue. Even good days require a brace to stabilize her left foot. But that checklist is merely informational: Her schedule doesn’t change.
Days begin at 8 a.m. in the basement art studio of her Houston, Pa., home. She’s eager to get there. After decades working in property management, she dreamed of a retirement filled with art. She tunes her Panasonic boom box to an all-jazz station and cranks up the volume, which she says is a perk of living alone. She creates mixed-media works with resin, oil or acrylic paints, metals, clay and pieces of slate from old roofs. She views art as a problem to solve: using the right materials, colors and design elements to suit the project. Art is her focus until she’s ready to drive to the gym and take her daily one-hour swim, where she continues to think about her current artistic puzzle.
Art and swimming are activities Ms. Brubaker enjoys, but they’re also how she copes with her relapsing-remitting multiple sclerosis, a form of the disease marked by exacerbated symptoms lasting at least 24 hours before subsiding.
Her symptoms are easier to notice in retrospect. Doctors blamed a medication change for a seizure in 2004, although MS was likely the catalyst. Changes in sensation and “tipping to the left” appeared in 2005, with periods where she required a walker. (“I just wrecked my leg; I’ll be running marathons next week,” she’d assure those who noticed.) The heat of a Miami vacation in 2009 worsenedher symptoms and landed her in an emergency room, which led to the MS diagnosis at age 55.
Most are diagnosed in their early 30s. She credits stubbornness for her later diagnosis. “I think a lot of people who have MS are warriors in many ways because you’re struggling all the time. I think I probably hid it for a long time.”
Now she uses that stubbornness to fight her disease. Friend and fellow gym-goer Joan Lindholm, 69, of Washington, Pa., first met Ms. Brubaker a year and a half ago during a period when she required a walker to get from her car to the gym’s pool and back again. She swam nonetheless, and Ms. Lindholm is awed by her friend’s ongoing commitment to her health and “second wind,” as she’s now rarely using a walker. But some symptoms can’t be ignored.
Left-sided “foot drop” — or difficulty controlling the front of the foot — is her most intrusive symptom and requires a brace every day. “As much as you
concentrate and purse your lips, anticipate your path, you still trip,” she explains. But she fights it nonetheless with foot drop-specific strengthening exercises.
Trouble controlling her hands is another antagonist during phases of relapse. In her art studio, she’ll knock over jars that hold water and brushes and have difficulty with detail work in her creations. She fights that by switching hands because, “I will refuse forever to not do my art.”
She’s been an artist — and ambidextrous — since childhood but has adapted both skills to suit the challenges of her disease. She calls creating art “like meditation” that causes “the whole world to melt away.” She sells the occasional piece to friends or fans on her Instagram and Facebook pages, but there’s a platform she holds in higher regard.
Ms. Brubaker is one of 52 artists to participate in the Multiple Sclerosis Association of America’s 13th annual Art Showcase. The online art show isn’t a competition. Kaitlyn Gallagher, MSAA’spublic relations and marketing coordinator, says the organization wants to encourage the creative outlet and make sure “everyone has the opportunity to display something that makes them proud.” Though there are no “winners,” a dozen pieces will be chosen by MSAA and featured monthly on the organization’s website.
Ms. Brubaker is proud of her showcased work but also to share a platform with others who cope using art. She considers the difficulties other artists living with MS might face — such as trouble working with larger canvases because of mobility issues — and feels grateful for what she can create.
The unpredictability of MS has her thinking of the future and leaving nothing to chance. She preplanned her funeral with instructions to “be buried in clothes with the most paint on them.” And she’s searching for a successor, someone to inherit her lifetime of art tools and knowledge.
Until then, she’ll work on her next piece, any way she can.
“If I couldn’t use my left hand and the right had failed, I would consider drawing with my feet, doggone it. You just can’t give up.”