In preparation for Epilepsy Awareness Day Thursday, March 26th I've been reflecting about just what on earth all of us impacted by this despicable condition can do to effect real change. Many of us write blogs read by other bloggers who share the same misfortune. Others post on Facebook in the hope that some of our "friends" who do not have a personal experience will somehow "get" ours since much of what we write is gut wrenchingly honest and emotionally raw. We even use curse words. Some of us--- a lot!
So... What can we do? I'm really asking --- I do not have an answer. I've written a book, I've appeared on local TV multiple times, we've had numerous newspaper articles written about us, I served on the Epilepsy Foundation Board for 15 years, we have donated thousands of dollars, I've spoken at epilepsy seminars, I have opened up to friends and family (a few) about some of the bitter truths of parenting a young adult with epilepsy. And yet sometimes I feel like I'm spitting in the wind. I'm not getting younger. We've been at this for over 25 years. I want more than drugs with a host of side effects, I want medical marijuana legalized in every state and re-scheduled federally, I want to be free of the fear my son could die, I want a better life for Michael. I want it ALL. I want it NOW.
If you're still reading this and you have a suggestion--- by all means leave a comment. Increased awareness is a good start but I think we need to change tactics to reach that finish line sooner. Please. Help.
As you know, I agree with you wholeheartedly. And speaking of hearts, we've never had that heart to heart about how we think similarly in regards to non-profits, epilepsy research and where the money goes. I think just backing off the old things in whatever way you can and trying to effect change in small ways is the best way to go.
ReplyDelete"Spitting in the wind" - I'm sitting w that Mary Lou. I can't imagine how 25 years of this feels. I feel so blessed to be entering all this now. Cannabis has infused our community w a hope that is long over due and not empty. Grateful for your voice Marylou. (Maybe I can sit in on that pow wow between you and Elizabeth?)
ReplyDeleteThat would be wonderful Allison!
DeleteHi Elizabeth,
ReplyDeleteThanks for the comment. About that heart to heart, I'm thinking of coming to the summit. If so, hopefully we can spend some time together. I'll let you know.