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Sjögren's Articles

What Makes Barbara Run?

By Teri Rumpf, PhD

Reprinted with permission of the Sjögren's Syndrome Foundation, Inc. (founded 1983)

"The Moisture Seekers" Newsletter. Summer 2005

What empowers people to do things that ought to be physically impossible? How is Barbara Lischinsky, a woman with Sjögren’s syndrome and other serious medical problems, able to run the very difficult 26-mile course of the Boston Marathon? Barbara has run the marathon not once, but five times—no small accomplishment when, in addition to Sjögren’s, she is legally blind. Barbara refuses to be defined by the things she cannot do.

Now forty-seven, Barbara was diagnosed with Sjögren’s at age thirty-two. In 1999 she was declared legally blind due to a rare, degenerative eye condition called cone dystrophy. At the spring meeting of our Boston support group, she carried a collapsible cane and wore dark glasses in order to minimize the light, which is painful to her eyes. A friend guided her around the room. Barbara has some residual vision in one eye, just enough to let her know when she’s about to bump into someone.

A few weeks later, I saw Barbara running. She was several miles from home and wore a bright orange vest with neon markings. She was able to navigate traffic she couldn’t clearly see. I wondered how she was able to run a marathon and how she could take on the suburban traffic. She graciously consented to my interviewing her, and we agreed to talk after she had recuperated from the race.

Barbara was diagnosed with Sjögren’s while in graduate school at the Harvard School of Education, where she earned a master’s degree in education with a concentration in human development. She worked at Harvard as a financial aid officer. For years she had been plagued with repeated eye infections that puzzled her doctors. Her eyes were dry, painful and extremely light sensitive. Reading had become difficult.

Thyroid disease and autoimmune hemolytic anemia have now complicated her medical picture and cause extreme fatigue. It may take her three hours to get ready in the morning before a run. She is, however, careful to pay attention to her body. On days when she knows it would be counter-productive to run, she stays home. She wants to be able to continue running as long as she can.

Raised in Massachusetts in a family that placed high value on both work and education, Barbara supported herself through college. She took time off when she needed to earn money. A self-described jock in high school, she was always athletic. Although her vision was never good, she was a sighted person who had to adapt to losing her sight. “I won the medical lottery,” she likes to say as a way of describing her multiple medical conditions. She is a soft-spoken woman with a quick mind. Like many with Sjögren’s, autoimmune diseases run in her family. Adaptation to illness was difficult—she was young and valued her independence and mobility. She was forced to give up her job and forced to turn down the three doctoral programs that had accepted her. In 2000 while at home listening to the running of the Boston marathon on the radio, she decided to do what she had always loved as soon as she was strong enough to do it.

She began by running around the block, which was all she could manage. When she felt able to go further afield, she plotted a route through a residential area with little traffic and tethered her cane to her fanny pack. She took the bus to arrive at her starting point and had soon memorized every pothole along the route. Volunteer guides sometimes aid her and help her on long runs like the marathon. When not in training, she runs 20-25 miles per week.

What makes Barbara run? For Barbara, running is a form of deep meditation. While she runs, she is free from pain and able to forget her medical problems. Running, especially long-distance running, constitutes freedom for her. When Barbara runs, she can focus on her ability, on movement, on the feeling of being out in the world. During runs, she can forget everything else. Her running is a testament to the power of the mind and body and spirit. She acknowledges she is often in pain afterward.

The financial toll of illness has been one of the greatest challenges Barbara has had to face. She has had to enter the Social Security Disability and Medicaid systems, which often are long on rules and bureaucracy and short on caring. Living on SSDI, she has to stretch every cent. She speaks to student groups, tutors and is learning Braille and a voice-recognition wireless computer system that she can carry with her to take notes. She refuses to be trapped within the four walls of her apartment, although last winter, an extremely cold one in the northeast, she did not always have enough money for heat. Food has sometimes been short. Much of her budget goes for medications. She manages all this with extraordinary grace.

“This wasn’t my script,” Barbara said to me during a recent discussion. “I had a good job. I was on my way to a Ph.D. I wasn’t supposed to live like this.” Illness has changed what she does, where she lives and, most of all, how she lives. Running does not compensate for those changes, as she told one young student in a school she was visiting, but it enables her to go on and to find meaning. It is a testament to the healing power of having something you can do that makes life worth living and doing it to the best of your ability even when it is difficult every step of the way. What makes Barbara run is inner strength and resilience mixed with courage.

SSF Disclaimer

* The articles identified as originally published in The Moisture Seekers Newsletter, are the only materials contained in this website that have been reviewed by the Sjogren's Syndrome Foundation.  The SSF in no way endorses any of the medications or treatments mentioned in these articles.  We strongly advise that you check any drugs, treatments or products mentioned with your own healthcare provider.
Copyright 2005 Sjogren's World