Join Date: Aug 2006
emotions, instincts, knowing who we are
It happens to everyone as they age, I'm sure, but the path many of us are on, has a spiritual component that can only be described, again as always, as being led.
People come and go on this forum, but some of us have stayed. Tom819 referred to me as the mother...lol. But if you ask my friends, they will tell you I have always believed in the potential of this forum to change things.
While running Grassroots Connection - there were only 3 -4 blades of grass actually - I learned so much about dotting your i's and crossing your t's. Just the facts maam and then GDNF swept us up and away for years.
One of my outlets, as you know, was writing all kinds of emails to Michael Fox. and I have finally broken that habit without being viewed as a stalker ......lol...and emerged with the confidence that comes from realizing i was being "led."
I'm not going to define who leads me, that is too provocative, altho it shouldn't be because it is about ...well....doing the right thing... but in different forms, laying down your arms, your egos, and [this one might sting a few] your expectations about what anyone or any country owes you [you is rhetoric].
My journey used to center around the GRC and pdpipeline sites, so my goals were specific, aimed at increasing readership, getting certain people that were making news right then to interview, journalism.
GDNF took me to places i never would have expected to be. Sittting across the table from Stanley Fahn, Tony Lang, Mark Stacy, Jay Nutt - these are top of their field researchers, and we talked [coming from opposing sides] about GDNF [these were the researchers who defended the halt] for 3 hours.
I have been able to meet just about every goal I've set, in large part due to these very forums and 100% by meeting people online.
Altho I knew that there had to be a reason for certain things happening, I didn't devote the time and attention to nurturing and listening to what I was supposed to do next, but it always came...that thing to do next.
And i learned more and more. Making connections is what teachers do; so it was natural to want to share with people here. My "classroom" was left behind and my "faculty room friends" with it.
Sometimes I fought for recognition that I felt I deserved, but for the most part, I love brainstorming, tossing out ideas, and realize that some hit and some miss. Eventually, I saw tho, getting credit was not worth the time spent on it and I became a strategist and investigative journalist of sorts, with dyskinesia and somedays in my pajamas all day.
It could just be the world, it could just be everything, it could be aging, it definitely is pd, but eventually the battle turns to finding energy and motivation. I can still do a lot, but it isn't always pretty. I look weird, feel paranoid, and don't like to go out much anymore. I still do , thanks to my friends and family, but rarely comfortably...I've got this leg that juts out...honestly it makes a clown out of me.
So, finally, I'm looking more within, and am being led by the inner voice, which doesn't care at all who has the best anything. i live simply, i gave up most posessions, attempting to decipher how to be outside of myself - not always succeeding because illness itself make getting thru the day rather self-centered.
Timing is everything- we say. My timing was very significant and as you all know I wanted to be Mike's friend and laugh at his wit as part of my treatment ...lol. I'm supposed to be grateful i suppose, and i am, that he never blocked me from emailing. Having finally conquered that habit, I now spill my philosophical overloads here on the forum. So how can i connect all of the experiences that I've had due to getting pd and having such a successful advocacy run? FIrst of all, I have to eliminate myself from the credits. Be a servant, stay humble, don't self promote, just keep passing along what I can.
There are people here similarly - heck even much more- devoted and instinctual; some are just readers. This forum is filled with trust....and trust comes from being able to consistently feel safe - a no spin zone; no exploiting.
That came about thru communication - honesty, no competition. I am hoping that more inner voices come thru so that we can all decide [remember, organizations work for us and so does the government] how to best spend the time that is gathered for pd and that the human ness of this entire endeavor eventually comes thru.
In the Bible, and i don't know the verse -am i breaking copyright? lol ..it says: it's not by power, not by might, but by the spirit," sayeth the Lord. Ok i'll look it up and come back in case i've really taken it out of context. Where is this group of people headed?.....where are we now and how did we get here? it feels like a group that is going in the right direction by simply communicating. Unless something happens very soon, many of us are not going to see a treatment. But we can look back and see changes; they are far more valuable when it's the 'we', not the 'I' that defines the memories.
Using our inner voices, our instincts, our faith, our spirit, our gut, we can overcome competition, greed, lies, and do great things. Seek to know who you are and what we will need in the coming years. Now is the time for examining priorities and restructuring ....as someone very popular has been saying.
It isn't science, if it lacks this human factor in the equation. It's failed and will continue to fail. It will always stay a step ahead of science.
I'm getting older, and this is where I'm at. It's what has come next for me. It's 'not about me' is the goal, only far more so.
i don't know how you can respond, so don't unless you are comfortable doing so. i'm lucky to have a place to express it; was inpired to do so after feeling reassured from another pwp who understands it in a specific situation, as many reading do likewise I'm sure.
ps - im sure glad Tom819 didn't say I was like the grandmother! I might have rambled forever.
"Time is not neutral for those who have pd or for those who will get it."