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Monday, November 15, 2010

It's pitiful and I guess I'm part of the problem...

November is Epilepsy Awareness Month, however, I've been holding back purposely from posting about it here and on Facebook.  I do believe in doing my part, but November is much like riding a wave of activities for the entire month.  First, and foremost is voting on Election Day.  After our brains are beaten half to death by political commercials on TV, the net and via social networking resources, the timing just isn't appropriate.  On top of it, our privacy is also invaded by political phone calls even though we have unlisted phone numbers and pay to remain unpublished in our local phone books.  It's almost too much and would make people want to stick their heads under the covers and never come out.  Except, it's our duty.  Without voting, we have no voice and no right to complain about the current state of affairs in our nation, in our state and on the local level!  Period. 

So, hopefully, we can ALL check that one off of our lists until primaries start up again.  But, the moment the voting is over, well, actually during it, the whole cycle starts up again.  The media tries their very best to sway our opinions and report things we don't necessarily care about or want to hear.  Nor, get stuck in our memory banks.  They flaunt people in our faces we just wish would go away and face the corner in a grown up time out for at least 25 years!  Why?  Because, they don't come through with promises, or commitments.  They de-value our faith in them.  They pursue their own goals via their own agenda using tax payers money aka our money.  Make that our hard earned money that they to use to pave their own avenues, rather than being good stewarts over, as they seek to elevate themselves above others, as celebrities, rather than as leaders, and line their pockets to boot!  Which, to me, is a counterproductive, and often times, a disgrace to our national image.  It's a lot to absorb even for the most patriotic citizens.  Definitely, to me, not a good time to flaunt a cause of mine in my friends' faces.  We're all already over saturated with hearing private things made public via the net and the boob tube.

Often people wonder why I don't watch much media coverage of anything.  Well, part of the reason is in the nutshell above and this nut tends to fixate.  So, choosing to stay a safe distance from the media, is an easy way around it.  Although, I do educate myself, as best I can before I cast my votes.  And for the purposes of creating awareness for Epilepsy after we'll all been run through the media mill regarding election mania, I feel as if my whining about my condition equates to all of the undesired "stuff" I hear via the media.  Perhaps on a much smaller level, but whining is often heard as whining, regardless of the degree, or topic.  It can be simply written off, as someone asking for something else.  Time is precious to all of us.  And moments of attention given, are to be appreciated, and respected.

Anyway... obviously, posting a blurb "here" or on Facebook, would have just gotten lost in the hustle and bustle of the political chatter.  And in my own weird way, I'm trying to be sensitive of your time!  But, for not even making a mention, though, I see myself as part of the problem that people are unaware of how vitally important it is to bring Epilepsy into the forefront.  To make it a cause as well known as Breast Cancer, or Cystic Fibrosis.  Or, for the key organizations working towards a cure to be spotlighted to the degree groups such as the March of Dimes, or the Muscular Dystrophy Association are.

Now, I could have easily shared a little something after Election Day, but chose not to, again.  Why?  The Marine's 235th Birthday was ahead and I wanted to spotlight that for my husband and for all of the other Marines I've known and cared about who are no longer with us.  And, of course, for those who are still with us.  So, I back burnered it, again.

Then, right after the day after the Marines celebrated their birthday, Veteran's Day was upon us.  The very next day, to be exact.  No way would I even consider bringing up Epilepsy during such an important day.  It doesn't mean that Epilepsy awareness isn't important, but to me, giving our Veteran's their much deserved tributes and mentions, simply takes priority.  To someone suffering with Epilepsy, that may make no sense whatsoever.  And to loved ones of someone suffering with Epilepsy, that could raise some eyebrows.  It's just hard to be sensitive to everyone and every group and every cause at the same time.  Spend any time on Facebook, and that's becomes apparent.  No excuse, just making an observation.

So, here I am on November 15th, with the month and the day half over to share my thoughts and bring a little attention to a well deserved subject, an unknown fact to too too many people.  November is Epilepsy Awareness Month.  I'm just one of 2 to 3 million people living in the United States with uncontrolled seizures.  The stats vary from website to website, so I'm not really sure where I fall, but in considering those huge numbers, does it matter?  Yes!  


Well, there are countless reasons, however, for me as an individual, my case is very unique and very atypical.  Currently, I'm still living un-medicated and have been since July of 2009.  In trying to treat the big "E", so far, I've failed 5 AEDs (Anti-Epileptic Drugs) and at the moment, I'm in the midst of a long, self chosen, hiatus from doctors.  After being burned out on the treatments, which didn't work and the ghastly side effects, I had had it.  Add that to the fact that the various diagnostics, and never ending EEGs never seemed to get me anywhere, much less to an end.  I put a stop to it all, by stopping the roller coaster ride.  You may question the wisdom, but to those who know me in person, and understand all that I went through, cheered me on, and still are.  They know, when I find the place where I want get on that coaster again, I will.  When it will be is up to God and my body. 

Eventually, I'll seek help again, but my brain, my body and my psyche needed a big break.  When I seek help again, I'm praying that God will put the right Epileptologist on my path.  That He will send he or she my way and not in reverse, because right now, I have no plans to seek one out.  However, that doesn't mean the "E" doesn't impact my daily life from how I feel -- it still tries to rule me.  The ongoing neuro sensations are still in my head and throughout my body 24/7.  Which, in turn impact the decisions I make, especially regarding how I spend my alone days.  As I've mentioned repeatedly throughout Project Rewire, it's a day to day, and often moment to moment to moment thing.  My daily mantra is push past and through, push past and through.  I refuse to let "it" win... I refuse to let it beat me, even though, admittedly it stubbornly tries.

Now, why do I guess I'm part of the problem?  Because, I'm no longer doing my part to get the word out about Epilepsy.  In person, nor on the net.  It's true, even though I made mention in the first line of this blog entry, that I believe in doing my part.  The truth of the matter is that I'm no longer focused on the awareness factor.  I spent a good part of a year or so doing my best from the confines of my home by writing various state powers that be in NC, and frequently mentioning it within this blog and on Facebook, and tweeting about it on Twitter.  And in person when I was out and about, ad nauseum.  But, I've dropped the ball.  Once again, by choice.  Why?  Because, I didn't sense it helped at all to get word out and because, frankly, people tire of hearing about it.  And true, I want people to see me and not the disease.

Also, for me personally to try to stay up and positive and moving forward, I have to focus elsewhere, on other subjects that mean more to me.  Up things that help me feel normal and human.  For example in the photo to the left, I'm working my volunteer gig at the Hamlet Historic Depot & Museum during the Seaboard Festival.  I had a couple of losing my balance issues, but other than that, I focused on the 1,500 plus visitors who came through our doors that day.  The energy I have to spare some days isn't that much.  When other days, I have basket full of it, like I did during the Seaboard Festival.  So, I know it pays dividends when I don't taint my drive and beliefs for healing with thoughts of hopelessness of ever living free of the "E".  And being productive, doing something worthwhile, certainly helps the whole process, and my self worth.  Even though, I'm a prime example of the reason more research is needed.  

Yesterday, was a great example.  My husband and I had a special date with friends for an event in Cary, NC, and from there a late lunch/early dinner to follow in Raleigh, NC.  On the ride up the clicking sounds in my head were very bothersome.  But, when I was with our friends, they subsided.  I was able to block out the clickies because I focused on other important and fun things.  That being said, I could not articulate conversationally super well during the day.  Some info I wanted to retrieve didn't make it to the surface.  All I got was snippets of a few things I wanted to contribute, but that's it.  It's different than the memory issues we all commonly go through once a certain age is hit, and those of us with misfiring temporal lobes can attest to it.  At one time, I thought AEDs, perhaps were a culprit and added to my issues.  I'd hoped that they were.  But, disappointing as it is to admit it, they didn't.  It's all part of being and living with the new version of me.

So, right now I ask that you all keep in mind that November is Epilepsy Awareness Month.  Sorry, I'm late with the news flash.  Also, note that purple is the awareness color.  When you see someone dressed in purple, or lavender, they very well may be wearing those colors because either they have Epilepsy, or a loved one does.

And just fyi... I've Googled NC for any mention of November being Epilepsy Awareness month, and didn't come up with any prime hits.  It's pitiful!!!  This truly saddens me.  Plus, it sorely convicts me.  Maybe I should have tried to make more of a difference.  Maybe I should have tried to bring some recognition to this important date, at the very least this year. regionally?  Maybe if I had tried one more time, my voice would have been heard?

Who knows?  I pretty much see it as too late now.  But, interestingly, when you Google special dates in November, About dot com mentions it along with an assortment of special or not so special dates, depending upon "your" individual perspective.  It didn't make it to the top of their list, though.  That causes me to shake my head.  But again, who am I to shake my head, anyway?  I've let down the people I've gotten to know via Facebook and on Twitter with Epilepsy, and oh geez, 2 to, possibly 3 million others.  That's down right awful of of me!  And no amount of "I'm sorries" can change it.  It just is, what it is, no thanks to me.

For those of you interested in learning more about Epilepsy, these are two of the best groups in the United States:

The Epilepsy Foundation

Citizens United for Research in Epilepsy


Christa said...

Unfortunately, everyone is competing for a month of awareness, and the smaller causes get pushed into the background. Hopefully one day epilepsy will get as much coverage as breast cancer.

Love the redesign and the colors!! Very easy on my eyes.

Jeanne said...

Christa, exactly. It blows my mind that Epilepsy in a sense, gets kicked to the curb, but part of the problem is due to the stigma attached to the disease. It's only been in recent years that people living with it felt they could safely share because it could me the loss of a job. Or, being discriminated against in trying to secure employment. I do hope one day it receives the attention it deserves.

Thank you so much about the positive feedback re. the new colors. I'm not yet done tweaking, but the background will remain the same. The text may darken just a wee bit more. I need to make some subtle changes to the spacing, too. It pretty much looks like home to me, now. Although, a dark background with light colors works better on my eyes, it's time to push past some of the weird color issues I've developed when on the computer.