It’s the little things that get me excited nowadays. As for life in general, moments with my family, calls and notes from friends, and minutes without pain give me pleasure and enliven me. Life with a chronic illness makes you appreciate these. In my advocacy work, which is my focus today, it is the small victories, tiny steps of progress towards my goals, words of praise and encouragement, and the successes of others that keep me motivated and ready to tackle the obstacles I encounter in my chronic illness journey.
When I feel my worst, I spend time in my gastroparesis support groups. My companions there seem to always offer words of encouragement that cheer me up and make me feel as if I can face the world again. And it excites me to be able to help them when they are struggling as well. Progress in my advocacy efforts affects me in a similar way. So many days are filled with rejection and discouragement. My attempts to be heard, understood, and included are met with resistance and outright rejection. I have been openly mocked and dismissed more times than I care to count. But when that one small opening appears, when one individual, or organization, or media source decides to listen, to give us a chance, or to help us, it is the most exciting and uplifting feeling in the world.
This happened just yesterday, as a matter of fact. My group members and I persistently reach out in an attempt to have our stories and/or factual information regarding gastroparesis included on various websites. Our goal is to make everyone aware of the effects of our disease and our need for better treatments. We have had minor triumphs, and yesterday’s event was one to add to our list of successes. Ms. Anne Brewster, an MS patient and physician working in Boston, Massachusetts, graciously decided a while back to include a section regarding gastroparesis on her website, Health Story Collaborative (http://www.healthstorycollaborative.org/). We are the first inclusion in her new “Diagnosis Spotlight” section. It is a perfect fit for us, really. Her site seeks to heal by giving meaning and voice to the experiences of those with chronic illnesses – and we have stories!
After weeks of hard work on the part of the storytellers, Dr. Brewster, and me, our narratives (along with a factual blurb about gastroparesis) have been posted on the site. For me, and for many others in my community, this is overwhelmingly exciting. We work so hard for recognition, and to have someone provide us with this opportunity means the world to us. It means that we have been given the chance to write both for our own healing benefit and as a means of explaining our experiences, difficulties, and methods of coping to the outside world we so desperately seek to influence.
These steps may not seem significant to some, but to me, and to many others struggling to survive each day and to maintain some sense of happiness and self-worth while doing so, these are exhilarating and joyous affairs. A cure is the ultimate goal, of course, but until that happens, each time we are heard and our experiences are validated, I count it as a cause for celebration. These small steps toward our goals keep me focused and on the right track. Exciting stuff indeed!