These Days I Sit On Corner Stones...

This post was originally written and published on my blog "PD Plus Me" on November 1, 2014 and is being shared as a part of archives I will be sharing more of in the future. 

These Days I Sit On Corner Stones...

"These days I sit on corner stones and count the time in quarter tones to ten, my friend, Don't confront me with my failures, I had not forgotten them."  Those are two of my favorite lines to a song that I like to play and sing by Jackson Browne called, "These Days." These phrases relate to my existence with Multiple System Atrophy in that they describe a man of introspection-- in this specific case-- a review of the past and how today does or doesn't fit the person I was at that time. I sit on a cornerstone more often to think, like the big boulders in our yard that are not the most comfortable place to perch, but are a setting that invites a sit-and-think session.

But figuratively, I sit at home, as a non-driver, within my daily pleasant, but confined, contemplation. This confinement is not all bad, to the contrary, it is a freedom I did not have when I was running the race of a career I loved and poured myself into-- that of managing and leading educational institutions.  My focus was kids. Now, I proudly focus on my three grown kids and their loved ones.  I am particularly aware of our granddaughter who is so special to us.  She brings a renewed sense of purpose and inertia to one's life in a way that no one else could in these circumstances.  She doesn't see Multiple System Atrophy when she sees me-- she sees what I still think must be a dream-- Grandpa-- wow, that is me!

These thoughts lead to an awareness that my body is hard to control as I skid my loafers around on the ceramic tile floor and work at maintaining my vertical status. I think about rising from a chair to do a simple task and waiting 15 seconds before launching myself on the trip to the kitchen to get a drink of water-- "Don't begin to walk until you make sure you have blood pressure in your head," I tell myself.  This after a blood pressure of 70 over 50 at my last physician's appointment.  I am still evaluated by the outside world as to what degree my jerking and tremors have increased or decreased, which will always fluctuate depending on the DBS settings and when I last had my appointment to adjust them.  Or the degree to which my medicines are working or wearing off, which is after 2-1/2 hours in the case of Levo-Carbo.  I want to know if my autonomic difficulty will continue to be manageable-- or if breathing, swallowing, aiming my eyes, and "voiding" will continue to be possible.

No, I don't live in fear.  I live in hope; Hope that I will continue to view the world as a beautiful place to explore, even if at times I must do so from an arm chair.  Days are precious.  Breathing, eating, laughing, seeing, hearing, standing and playing my instruments. These are enough.  I am, in this state, with all that MSA has brought to my brain and body, enough.

"These days I seem to think a lot, about the things that I forgot to do, for you.  And all the times I had the chance to..."  ("These Days"-- by Jackson Browne) What matters most are the lives we affect that are closest to us. These days are good days because you-- YOU, I say, are what I want to fill "These Days" with... Enough. -- Patient On-line

Notes: Jackson Browne is a family favorite, stemming from the fact that my wife and I both loved his music before we met and found it to be a commonality that added to the power of our bond.  Walking by our front door you may hear one of his CD's playing.  Thank you to my fellow bloggers who help inspire me to write and give me ideas to launch my own posts.