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Being an Advocate
Posted on October 28 2015
In public, we celebrate the victories. We laud partnerships, and announce accomplishments. We mark honors, and unveil new opportunities. What we don't do is draw attention to our failures.
For every email sent, there are five more unanswered. For every sponsor whose logo bedecks the ballroom banner, there are ten more who said no. For every grant awarded, there are twenty more for which one was unqualified to apply or deemed unworthy. For every yes, there are a hundred replies no.
To fight for a cause is to be beleaguered by it, for even successes beget problems. To fight for a cause is to work one's self out of a job, for true success means that one no longer is needed.
I am an advocate for fibromuscular dysplasia. Fibromuscular dysplasia (FMD) is a complex disease that is most commonly seen in women, with systemic presentation that may include dissection or aneurysm most commonly in the renal and carotid arteries, low bone density, joint laxity, degenerative disease in the spine, migraine-like headaches, dizziness, and tinnitus. FMD is considered a rare disease; however, it is also believed to be underdiagnosed.
But sometimes I wonder what it would be like if I just stopped. What if I went off the radar, stopped pushing, got quiet, took up sewing instead? I could cancel all my doctor's appointments, quit taking my medications, move out even further into the country, write with pen and paper, and see the world from a perspective no farther than the tip of my nose. There would be handmade afghans, and kittens, and tomatoes, and a screen door slamming shut. Life would be as Southern as Eudora Welty, and one day years down the line I'd fall asleep in a lawn chair in the sun and just not wake up.
Or I'd get all bunkered up in a holler somewhere and just be lonely as sin, while wishing I could do more with my life than just waste away into a shell of a bitter old shrew. Either way. I'm not much good at happy mediums.
The point is this: the next time you are dealing with someone who doesn't have to do what they're doing, who is giving his or her own time to a cause, who is asking you to consider helping — think just a little longer before you answer. Some people say, "Well, we just get asked to help all the time, and we can't say yes to them all." Granted, that may well be true. Consider though what you're being asked for and by whom. Consider the relative magnitude of what you'll give and what those in need will get. And above all else, approach those who are fighting for a cause with an attitude of respect and a willingness to problem solve. If you can't help, perhaps you know someone who can — because there are people like me who didn't make a choice to be diagnosed with a disease but are making the choice to make a difference.