Learning on the "Road Less Taken"

For Parents of YPWCs

By Linda Sillitoe

Originally published in Youth Allied By CFIDS, Winter 1997

I applaud everything parents are doing to force a long-indifferent system to recognize CFIDS medically, politically and educationally. Our kids need all the support and help these systems can give. And I cheer for all the CFIDS kids who manage to continue their formal education. But many YPWCs, like my daughter, Cynthia, can’t. For these kids we need to find alternative and imaginative ways not only to help them to learn but also to get their learning recognized by the educational system.

Here’s how it went for us. Cynthia was blindsided by CFIDS at age 16. Although she had always been a verbal person, she suddenly could no longer read or study; sometimes she could barely talk. During that first desperate year when so much was bitterly wrong, I began asking, "What would help?" Sometimes it was a car ride, a fragrant bath, a bag of loose postage stamps to sort or a phone call to Grandma (the expert on healing body and soul). What helped Cynthia maintain her sense of self and connection when she could barely tolerate company, yet grieved over people disappearing from her life, was turning to her most despised subject in her former life at school: art.

When she joined a correspondence club, she found not only new friends but also the world of rubber-stamp art. She stamped all our wrapping paper that next Christmas, rejoicing at the beautiful pile of packages under the tree. Later she entered rubber-stamp art shows and exchanges worldwide. More importantly (given what high school’s really about) she socialized from a distance. And the insightful friends, personality conflicts and ingenious projects the mail carrier brought kept her growing and coping in ways parents can’t provide. Eventually she started a newsletter and coordinated an art group, which both provided many successes and challenges. I silently thanked everyone in those networks for so often forgetting that Cynthia is sick.

But I’m not promoting correspondence clubs or art. I am saying, look what she did while she was too sick to read, study or sit in class. Everything I read from the CFIDS community illustrates how bright, competent and sensitive CFIDS kids are despite their telegraphic speech, wheelchairs, whatever. But many don’t fit "the system."

However, ask Cynthia or the kids throwing virtual proms or lobbying for CFIDS to explain the break-up of the Soviet Union or the evidence problems in the O. J. Simpson trial or the intricacies of their favorite Olympics event, the conflict in Bosnia or the 1996 election. Likely you’ll hear a more cogent discussion than you would from most high school graduates. Why? Because while you and I were working and while most kids were sitting in class, homebound CFIDS kids heard news reports, trial coverage and commentary three or four times a day. We need to ask: How did they learn? How did they remember what they learned?

For one thing, they weren’t distracted by the social worries that plague all kids, especially those who feel different. Beyond that, the information came in concise, focused statements, often accompanied by visuals, and it was repeated throughout the day.

What if, at the end of each week, Cynthia and kids like her tuned in (at 2 p.m. or 2 a.m., whenever their brain cells came on) and discussed the week’s reports or took a 10-question quiz. How many would eventually gain credits in Current Events or Civics or Consumer Education? Why couldn’t they learn Julius Caesar, chemistry or art appreciation in the same way? No, not through televised lectures but with a curriculum with brief, focused statements accompanied by visuals and repeated throughout the day. This is similar to writing and reading on the Internet. Cynthia’s CFIDS newsgroup confided yesterday that not one bright, funny discussant could read books with ease or frequency. Yet they were sharing information, doing peer therapy and cracking jokes.

Though many YPWCs can’t attend school, they are learning. The difference in method is simple. Unlike school students — who need to sit up, read, follow discussions, and take notes — consumer students learn through information "marketed" to them by copywriters trying to capture the attention of their listeners.

When we look at the educational system and our CFIDS kids, it’s time to ask not only what the classroom offers them but also what it costs them. Then let’s ask, "What would help?" and begin forging technology with curriculum to aid not only our children but the myriad students who find a poor fit in the traditional classroom. How can we help them get credit for the learning they can do while they are sick?

All the while, I believe we need to validate for ourselves, for our children and for one another the value of "the road less taken." Even in her first wave of grief and outrage, Cynthia made me promise not to let her develop a "sick" personality. I see in other young people with CFIDS the strength and wholeness that still shines in her. I’m proud of them all. And society needs them and their gifts, just as they need the world and its sustenance. We need to keep building bridges.

Linda Sillitoe, the author of eight books that range from biographies and history to poetry and true crime, is the mother of Cynthia, a YPWC.