We are a quiet bunch. I don't see us on the news doing fundraising walks (or rolls!), being interviewed with all sorts of hope for recovery, our friends and family all wearing a certain color in support. I have been thinking alot about this, how from day one of this stroke experience I have experienced less than stellar support, mostly because I have crossed over into the danger zone of health. I don't know if it is because it is a head trauma, and can change the way we interact with the world, or the chances of reoccurence and further disability are increased so we are (possibly) less able to contribute to society, but there is a definite difference there.
I immediately decided cancer would be easier to handle than this... because there is so much friggin' info about cancer treatments, alternatives, expansive support groups, specialized doctors and the anonymous community support for cancer survivors. I am not saying it should not be that way -- just that stroke research needs to have that level of energy and money expended on it. At the very least the medical field needs a whole lot more education beyond "stroke is the beginning of the end." I have heard bonehead things out of doctors mouths (not my neurologist, he has the training, but all my other docs.) We are still loving, vital parts of our communities and families - don't make us invisible.
Oh, and I may still be in the angry part of recovery....
Yeah we need a spokesperson like Michael J Fox does for Parkinsons or something like the Alzheimers Association. Our stroke associations don't care about survivors except as pitiable objects to bring in donations. This article covers the points you are making.
ReplyDeletehttp://articles.baltimoresun.com/2010-10-28/news/bs-ed-stroke-20101028_1_stroke-survivors-bringing-stroke-american-stroke-association
Dean
I absolutely agree with both of you. Although I know some stroke survivors from our online community and from the local stroke support group (filled with survivors all at least 10 years older than I am), I have only ONCE seen a stroke survivor with visible disabilities in public. He was at a restaurant at lunchtime in another town, making his way alone through the tables. I have NEVER seen one in my city. I specified "with visible disabilities" because I have twice run into completely abled male survivors who approached me specifically to encourage me to "never give up." We are invisible to most people.
ReplyDeleteI have become very enthusiastic with I see folks with visible disabilities around town. The more the better, this is not a silent (disease?) and needs to not be invisible.
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