I had a number of people share a webcast, which included Israel Roberto (a Facebook friend), talking about the power of advocacy. We have a political advocacy group working for the Parkinson’s community called PAN (Parkinson’s Action Network). The thrust of the presentation is to get involved because the politicians hear you and it really matters. Well I drank the Kool-Aid and told Cecily that this was something I needed to add to my plate.
That sparked a moderately long discussion about time management and “You only can do so much.” The timing was really appropriate because I am in tournament mode trying to go through all of the details of organizing a fundraising event. I finished our April, 2012 event, with the final collection and transfer of money to the Michael J Fox Foundation in December 2012. So, I figured that I had almost two weeks to decompress before beginning the frenzied journey of the next event. I know from watching TeamFox members John Ryan and Karen Jaffe to name a few, that I am not the only one who has this issue.
We spent a good amount of time talking about prioritizing effort. What is most important? Is it the support group, raising awareness, fundraising, or public advocacy? We tried to place each in order of importance (to us and to others) as well as which I am best suited for. It wasn’t easy because they are all critical to us and our fellow journey partners. The realization that I can’t do everything I want or I can’t be everything to everyone was a harsh reality. The unspoken “elephant in the room” was of course Parkinson’s and the toll it could take on us physically. Because I am so fortunate to be doing so well in my “honeymoon period,” this has not been an issue. But it could be. So being the eternal optimist, no problem- We’ve got this!
Regardless of the outcome of our discussion, it was an excellent exercise on so many levels. It was a bonding moment as I saw my life partner’s concern for my well being weighed with the well-being of others. It was a self-evaluating moment where we evaluated my inventory of strengths and weaknesses, and where can Bob give the most bang for the buck. It was also a moment of where I get the most satisfaction. While every aspect of the things we do help others in some manner, I think I enjoy and get the greatest satisfaction from the one on one personal contact with a newly diagnosed Parkinson’s patient, where I have the opportunity to depressurize the diagnosis. Having said all that, I really don’t see me making any change. We will push on with a quiet understanding that my partners on this journey (Cecily, Kate, and Emily) will keep me grounded and not overextended.
So if you haven’t had a “Come to Jesus” meeting with your home team, you should; sooner than later. As your care partners have the right or obligation to “rat you out” to your doctor, they should have that same right to reach out to our Band of Brothers and Sisters to keep us healthy.
TWO SHOES ON AGAIN (also known as a speeding bullet looking for a place to land by April 6th).