A Blue Ribbon Day

By Jamie B. Nelson


Originally published in Youth Allied By CFIDS, Spring 1996

I was very excited in March 1995 when I received a sample packet of CFIDS/M.E. Awareness Day (May 12th) information and ribbons in the mail from Rebecca Moore. I had been struggling, as we all do, with gaining acceptance from and educating the people in my life; my doctors, professors, neighbors, friends, acquaintances and even the mailman who had been kind enough to casually ask one day about The CFIDS Chronicle he was delivering.

Reactions always varied, and mixed with my sometimes overwhelming desire to completely educate every Tom, Dick and Harry that I bumped into, is a weary "here we go again"-type feeling, the same feeling that I get each time I start my all-you-need-to-know-about-CFIDS-in-a-nutshell-for-beginners speech.

The little blue business cards (which explained the significance of May 12) and ribbons in the May 12 packet seemed like they could be a refreshing and successful new way to communicate before losing your audience's attention. The potential for something tremendous to come out of Florence Nightingale's birthday started a knot of excitement and determination in my stomach. The feeling was contagious as I talked to my friends and other members of my support group.

I had already ordered 300 cards and ribbons from Rebecca, but it was soon apparent that we'd need more as people here, there and everywhere began piping up with "I could easily give out a bunch at school," "my father could take some to work" and, one of the most exciting, "I'm attending the Maine state school nurses conference; I'll need 160 for that!"

When we realized we were rather overworking the CFIDS Activation Network, who provided the cards and ribbons (God bless them for the many ribbons they did get to us), YPWC Lori-Lee Wasson spent an afternoon with me cutting and safety-pinning little blue ribbons. Support group member Fran Bouchard and her mother Kay helped us photocopy and fold pamphlets, safety-pin additional ribbons and then assemble the packets of information (including the CFIDS checklist for school nurses provided by Dr. David Bell). We finished just in time for the school nurses' conference.

On May 11th, my mother and I delivered pamphlets, business cards and ribbons to every staff member of every local doctor that we'd ever visited, including the orthodontist and ophthalmologist.

As students entered my sister Lindsey's high school the next morning, she passed out all of the 75 ribbons I had given her. She said she could have used many more, as the demands were high. My YPWC friend Carrie Wallace also distributed 200 ribbons, cards and pamphlets at her high school to an amazingly enthusiastic and receptive group of friends and students - quite an impressive feat.

Unfortunately, Lori-Lee had the opposite experience at her school. In retrospect, we realized that the secret was gaining the support of the most popular teachers and students extremely early in the day. My sister Lindsey distributed a number of ribbons before many students had even arrived on the buses. Students were far more likely to accept or ask for a ribbon if, as soon as they stepped onto the curb, they encountered half a dozen people already wearing one.

We'd decided earlier to try taking it one step further, by setting up a public booth in our local mall. Our booth was beautiful, covered on all four sides with big blue posters. Some of them exclaimed, "Make yourself aware," and others pleaded "All we're asking is a moment of your time and an ounce of your compassion." Carrie's powerful and eye-catching poster (see photo) hooked a lot of shoppers. The banners declared it "International CFIDS/M.E. Awareness Day," and of course, we also had blue enlargements of the May 12th poster published in The CFIDS Chronicle. Carrie's mother, Wendy Esposito, wrote a very touching poem about being the mother of a YPWC, copies of which were available at the booth. Indeed, her poem reached the consciousness of many mall-goers.

We were there from 9:00 am to 9:00 pm, working in four-hour shifts. We were a bit taken back by the surprising number of people who stopped by to say, "I think I might have this," or "I'm afraid this is what my daughter has."

All in all, the day went remarkably well. We even inspired a graduate student to write her M.A. thesis on the illness. We also met the Gulf War syndrome veterans of our area.

As I write this, six months later, I marvel that I still see our blue ribbons attached to jackets and backpacks around town.