10/12/00
 
Inactivity = Powerlessness
 
I confess: I did it. And for far too long.
 
What was it? Nothing.
 
Inactivity. I froze in it. Inactivity can seem to have many causes, but fear is its foundation. I feared that what I had to contribute to the sickle cell community on defiers.com or the world about sickle cell just wasn't adequate. I wasn't smart enough or as informed, I cried. After I acknowledged the truth of this helplessness, I decided to jot down a few words, knowing that some of you out there feel the same way.
 
I sat by and wondered why things aren't different and whether they will change. I accepted standards of care that are unacceptable. I tried to contact a local agency devoted to sickle cell numerous times and when they didn't respond to my calls, I decided they were inept and that there was nothing I could do. Over the years I've gone in and out of denial about having sickle cell, depending on how many 20-hour days I could work and live. Then I couldn't ignore it anymore and my denial had to turn into education and, eventually, advocacy.
 
Let me tell you what I did. First, I realized that things weren't different for us because of my inactivity -- too many of us drop the ball here. Ivor challenges us mightily to become personally empowered so that the group is so. My particular contribution is to match my abilities to write and encourage with groups like S.C.A.R.E. that share my vision, values, and goals. I also help with the patient newsletter at the sickle cell center here in Atlanta. Secondly, I decided that I was worth the best treatment possible. That means everything from teaming up with my doctor to calling the patient's advocate to report a nurse disinterested in following the doctor's orders. I'm also encouraging the few patients that I know to fight for the best as well. You see, when you and I have a victory in this area, it helps all sickle cell patients. Thirdly, I stopped beating the unavailable local agency over the head. While a valid concern, after a while that only provided an excuse for me not to give where I could. Don't give up if the first place you attempt to be a part of can't seemingly use your support. Someone can! We are lucky to have S.C.A.R.E. who, through defiers.com, encourages each of us with open arms to participate in sickle cell advocacy. Finally, I realized that I don't have the luxury of living in denial about having sickle cell. It is real and has very real consequences, however, its reality doesn't have to immobilize me -- or you.
 
We have ways of supporting a candidate or cause or reform to move each closer to meeting our needs. We vote or advocate or propose. While our individual actions are important, someone else somewhere shares our interests. We form a group with those someones. When we pool our resources the group strengthens tremendously. There have to be leaders, administrators, accountants, technicians, P.R. folks, clerks, secretaries, information gatherers, investors, web masters, medical staff, walk-a-thon-ers, teachers, workers, librarians, drug-study participants, social workers, fund-raisers, writers, support group attendees, etc. This list isn't complete by any means, but I'll bet that by evaluating your own gifts creatively, there will be at least one way you can share yourself.
 
Any time we make personal changes in our lives, it's best to start small for any lasting results. Ivor gave a wonderful listing of ways to become personally informed. Choose one or two sources to get your news. Remember, you count!
 
I hope that you sense the urgency we feel to make a specific difference, not only in the sickle cell community, but in our world. There is no reason for us to fail each other in inactivity. Let us conquer our fears about investing in a better life for yourself and the community you care about. And here's a little secret: we don't have to wait until the fear is gone. Wisdom says that courage isn't lack of fear, but of working through it. Join us, won't you?
 
Stephanie Worrell, Atlanta
 
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