Coming Full Circle
Traversing any form, circle or square, can have it's bumps and minor triumphs. Educating friends and family is part of coping with any chronic illness. My primary target was Ruth, the neighbor across the street, who insisted that, "Nancy could stop coughing if she really wanted to!" She was a source of much frustration, but finally I was triumphant. The prize? I became more informed in the process of educating her.
But let me first fill you in on my background, so you can understand where I'm coming from. I grew up during an era when managing asthma was an extremely difficult task. This was before inhalers or peak-flow meters were available. Asthma patients and their loved ones, paid a high price.
Physical Education classes were dreaded, so reading became my refuge. Books provided an escape to the constant humiliation of being selected last for team sports. In the minds of children, uncontrolled wheezing spelled out L-O-S-E. Night after night I slept sitting up in a chair to avoid uncontrolled bouts of coughing. It was a time when moving to Arizona meant possible relief, so my Dad sold the family business in Cincinnati, packed his family of four into a station wagon and headed West.
Ultimately, we returned to “Cincy” and good health was mine. I married my college sweetheart, graduated from Colorado State University, worked as a Registered Occupational Therapist and enjoyed parenting our daughter. Here’s where the circle continues; we were fortunate to have a son, but it was his misfortune to develop asthma and food allergies at six months of age.
We searched for answers, joked that one of the doors at the doctor’s office should have a brass plaque with our names on it and bargained with God during emergency trips to the hospital at midnight. At a time of true desperation we hoped that the double rainbows that appeared over the Colorado mountains were reassurances that he would be OK. The effective combination of medications was discovered and they were right.
I vowed to share my newfound, hard-won wisdom with others and founded a support group in Ft. Collins. The Asthma and Allergy Foundation of America (AAFA) offered invaluable assistance and today, almost twenty-five years later, Parents of Asthmatic/Allergic Children, Inc., continues to provide education, support and opportunities for advocacy.
AAFA hired me in 1988, and since then I have served as Coordinator, Director and Consultant for Educational Support Groups. These roles have allowed me to speak in front of thousands of physicians and pharmaceutical representatives to provide the color for a black and white photo of life with asthma. I have had the privilege of listening to countless tales of loss, sacrifice, despair and jubilation. Some days I am a cheerleader; some days I am a grief counselor. But I never forget what it is like to go to sleep with asthma as your last thought and awake in the morning with the identical first thought.
Compelling stories of support group leaders, potential members, dedicated professionals and personal experience continue to motivate me to develop user-friendly resources. Starting Strong-Staying Strong – A Support Group Manual, provides a blueprint for before and during that important first meeting. Ahhhh…but the challenge is to keep the momentum going. Tips are also included on maintaining the focus and spirit of a successful group. Leaders Link, a bi-monthly newsletter for AAFA-affiliated leaders and advisors, provides additional guidance, as well as a forum for peer sharing.
Meeting-in-a-Box is a series of five turn-key presentations – just plug in a speaker. In the past year, I have completed "A Song Left Unsung", a bereavement brochure, and supplemented the QuickAsthma series, a sturdy set of easy-to-reference cards on asthma and allergies. These cards are available for download at www.aafa.org.
The circle or square (a squircle?) continues and I am excited to offer insight into living with asthma via an internet blog. My goal is to offer readers cutting-edge information, entwined with practical advice and a healthy portion of empathy on the side.
Published On: May 05, 2006